Today With MS

Another example of greed, Doctors are as bad as the lawyers !

2011-09-08T09:43:00.000-04:00

Dollars for Doctors

Dollars for Doctors

How Industry Money Reaches Physicians
Piercing the Veil, More Drug Companies Reveal Payments to Doctors

by Charles Ornstein, Tracy Weber and Dan Nguyen
ProPublica, Sep. 7, 2011, 5:31 p.m.

Eight pharmaceutical companies, including the nation's three largest, doled out more than $220 million last year to promotional speakers for their products, according to a ProPublica analysis of company data.

For the first time, all these companies have reported a full year of payments, allowing for head-to-head comparisons of how much they spent on physicians to help push their pills. Some appear to be paring back.
Related Stories

Patients Deserve to Know What Drug Companies Pay Their Doctor

by Tracy Weber and Charles Ornstein, ProPublica, Sept. 7

Doctors Dine on Drug Companies’ Dime

by Charles Ornstein, ProPublica, Sept. 7

With Our Dollars For Docs Update Coming, Drug Companies Defend 'Interactions' With Physicians

by Charles Ornstein and Tracy Weber, ProPublica, Sept. 7
Tracking the Money

Our Dollars for Docs Database
We compiled tens of thousands of records from all the companies that have disclosed their payments to doctors so far. Search for your physician.

How Does the Medical Industry Influence Patient Care?

Firms with the highest U.S. sales last year didn't spend the most on physician marketers. Industry leader Pfizer, with sales of $26.2 billion, spent $34.4 million on speakers, ranking third among the eight companies. By comparison, Eli Lilly and Co. spent the most on speakers, $61.5 million, even though its sales were about half of Pfizer's.

"We continue to believe in the benefits and value that educational programs led by physicians provide to patient care," Lilly spokesman J. Scott MacGregor said in an email.

The data provide a preview of what the public can expect to see in 2013, when all drug and medical-device companies -- potentially hundreds -- must report such figures to the federal government.

Until 2009, pharmaceutical company payments to health professionals were closely held trade secrets. But several companies began reporting the information publicly under pressure from lawmakers or as a condition of settling federal whistle-blower lawsuits.
Company 2010 Speaker Payments 2010 U.S. Sales
Lilly $61,477,547 $14.3 billion
GlaxoSmithKline $52,755,793 $13.6 billion
Pfizer $34,382,574 $26.2 billion
AstraZeneca $31,647,101 $18.3 billion
Merck $20,365,446 $18.8 billion
Johnson & Johnson $11,712,900 $12.9 billion
Cephalon $4,241,080 $2.1 billion
ViiV Healthcare $3,975,102 Unavailable

In October, ProPublica published a database called Dollars for Docs that included information from those companies. It allows the public to search for individual physicians to see whether they've been on pharma's payroll.

Today, ProPublica is updating that tool to include payments made to health professionals by 12 companies. Eight of those published data for all of 2010: Lilly, GlaxoSmithKline, Pfizer, Merck, Cephalon, Johnson & Johnson, ViiV Healthcare and AstraZeneca.

In addition to the payments made to speakers, some of the companies also disclosed how much they've spent on consulting, travel, meals and research.

In all, payments to doctors and other health-care providers in ProPublica's database total more than $760 million and cover reports from drug companies between 2009 and the second quarter of 2011.

Some Docs Pull Out

The new data offer a glimpse of how the firms have adapted their strategies over time, both to changes in the marketplace and to increased scrutiny of their sales techniques.

Many experts predict physicians will back away from working for the companies once their names and pay are publicly revealed.

It's too early to know if this is true, but ProPublica's analysis shows that the payouts to dozens of doctors and other health professionals took a steep dive last year.

Pulmonologist Veena Antony, for example, was paid at least $88,000 to give promotional talks for GlaxoSmithKline in 2009. But last year, the Birmingham, Ala., doctor gave them up out of concern that patients might think her advice was tainted.

"You don't even want the appearance that I might be influenced by anything that a company gave," she said.

Cancer specialist Nam Dang was a regular on Cephalon's speaking circuit, pulling in $131,250 in 2009. But those promotional gigs stopped, he said, after he took a job at the University of Florida in Gainesville, which bans such talks. In 2010, he received $10,000 for consulting for Cephalon and Pfizer.

Nurse practitioner Terri Warren, who runs a Portland, Ore., health clinic, earned at least $113,000 from Glaxo in 2009, mostly talking about its herpes drug Valtrex. In 2010, that dropped to $300 after the drug went off patent and Glaxo no longer had a financial incentive to promote it.

"It's a business decision, clearly," said Warren, who felt her talks helped educate other health professionals about treating a taboo illness. "My money [from Glaxo] went into keeping this little clinic alive, and now we have to figure out some other way to do that."

Another group of physicians has ramped up speaking engagements and consulting.

Buffalo hematologist Zale Bernstein earned $49,250 from Cephalon in 2009. The following year, his pay jumped to $177,800 (plus an additional $35,500 for travel). Bernstein did not return calls for comment.

Pain specialist Gerald M. Sacks spoke and consulted for four companies in the database and was among the highest paid. The Santa Monica, Calif., doctor earned $270,825 from Pfizer, Johnson & Johnson, Lilly and Cephalon in 2010, up from $225,575 in 2009. Those figures do not include travel costs and meals.

Over 18 months, Pfizer alone paid Sacks $318,250 for speaking. He did not return repeated calls for comment.

Pfizer's new disclosure also revealed an unusual recipient. Its top-paid physician consultant last year, Dr. Christiana Goh Bardon, runs a hedge fund in Boston that bets on the rise and fall of health-care companies. She was paid nearly $308,000 to "provide input on our BioTherapeutics business development plan," Pfizer spokeswoman Kristen Neese wrote in an email.

Bardon, who started her hedge fund after her Pfizer contract ended, was required to sign a confidentiality agreement and not allowed to invest in Pfizer or any of the biotech companies that Pfizer was looking at acquiring or partnering with for projects, Neese said.

Bardon said in a voice-mail message that she does not currently practice as a physician and her work was based on her business acumen.

Drug Companies Change Their Strategies

Some companies apparently have used fewer physician speakers and consultants since they began posting their data publicly.

Cephalon, a relatively small Pennsylvania company that specializes in pain, cancer and central nervous system drugs, paid physicians nearly $9.3 million in 2009 for speaking and consulting. That figure dropped to $5 million last year.

"There wasn't one big thing that happened that shifted the focus," said spokeswoman Jenifer Antonacci. Rather, the company's marketing strategies for its brands changed.

AstraZeneca cut its spending on speakers from roughly $22.8 million in the first half of 2010 to about $9.2 million in the second half.

The company's U.S. compliance officer, Marie Martino, said AstraZeneca typically holds most of its speaker events in the beginning of each year. But she acknowledged that the company's spending on promotional talks has been decreasing.

"We're in a period now where we don't have a lot of new indications [approved uses] or new products that have been introduced in recent months, and that really is the fundamental explanation for what you're seeing," Martino said.

AstraZeneca, like other companies, is also replacing some in-person speaking events with teleconferences, webcasts and video conferences.

Glaxo's spending on speakers also slowed in 2010, averaging about $13.2 million per quarter in 2010, down 15 percent from the last three quarters of 2009. (Glaxo did not report data in the first quarter of 2009.)

Company spokeswoman Mary Anne Rhyne said the company is working to reduce its speaker rolls by 50 percent. "We feel it is a better use of resources to use fewer speakers more often. This cuts down on training costs as well as lessens the number of contracts needed," she wrote in an email.

And Lilly's speaker payments dropped 10 percent from 2009 to 2010, which spokesman MacGregor said was likely due to "normal year-to-year fluctuation."

ProPublica's early analysis of the data is limited because so few companies report their spending and even then, disclose different information. Lilly, for example, reports every health professional it pays to speak, while Pfizer includes only those who can prescribe.

"It's really unclear how much money is being spent in any one of these areas," said Vincent DeChellis, a principal at NHHS Healthcare Consulting, which has studied the data. "As you get more and more companies participating and submitting this information, you're going to get an initial look" at what may be a multibillion-dollar practice.

When Massachusetts required drug and device companies to report payments to doctors in that state last year, 286 companies did so.

Scrutiny of speaker programs has prompted changes.

After ProPublica reported last year that some drug-company speakers had been sanctioned by their state medical boards, the firms pledged to toughen their screening procedures and exclude physicians with disciplinary records.

Separately, ProPublica found that universities were not enforcing their own policies barring physicians from giving promotional speeches. In response, a number of schools said they would begin using the payment rosters to check for rule-breakers.

Pharma's trade group said the focus of most companies right now is ensuring the accuracy of data that will be publicly released in 2013. But this transparency also must be put into context for patients, said Diane Bieri, executive vice president and general counsel for the Pharmaceutical Research and Manufacturers of America.

Doctors help develop new medicines, advise companies on marketing and help educate their peers about appropriate uses of new drugs, she said.

"If the only information that's available is that company A paid doctor B $75,000 for a consulting arrangement," she said, "that's typically not enough information to really educate the patient about what was involved in that relationship."

Stem Cell News

2011-08-30T10:43:00.002-04:00

Life & Style
Advice
Money
Travel
Opinion
Fun & Games
Video

Stem cell trials may spell the end for MS
by Miriam Stoppard, Daily Mirror 30/08/2011
Decrease font size Increase font size

A very important study into the use of stem cells is about to begin in several countries, including the UK.

It will examine using them to treat multiple sclerosis but could have implications for many other conditions, including Parkinson’s, motor neurone disease, type 1 diabetes, heart problems and rheumatoid arthritis.

In fact, this study, which will run over the next three to five years, could be the blueprint for the wider use of stem cells.
Advertisement >>
Click here to find out more!

Scientists are hoping to show that stem cell replacement of diseased tissues can slow, stop or even reverse damage caused by the underlying disease.

There are two reasons why I attach so much importance to this project.

Firstly, this is the first time that researchers from around the world have come together to test stem cell therapies in such a large-scale trial, which would be impossible to run in just one location.

It is essential that researchers work together if they are going to make progress and improve stem cell treatment.

The second reason is that the effectiveness of stem cells will be subject to rigorous testing in patients, which will break new ground.

Two main types of stem cells have been tried. In the early days embryonic cells were used, but these were controversial because of where they came from – namely aborted or miscarried embryos.

Later we learned that we have stem cells in our bodies and this adult type can be used as effectively without controversy.

Stem cells hold so much promise. While they are primitive, if given a little nudge, they can turn into any and all of the tissues in the body that might get injured or become diseased.

In this new study the cells will be harvested from the patient’s bone marrow and then grown in a laboratory before being injected directly into the bloodstream.

The theory is that these stem cells will target the damaged protective covering around nerves, called myelin, which becomes scarred in MS sufferers.

This isn’t the first time stem cells have been used with the condition. In 2009, researchers in the US found they could improve symptoms of MS by using cells from fat.

The encouraging part of this research was the symptoms continued to improve almost a year after the stem cells were injected, giving us the hope of a long-lasting effect.

Read more: http://www.mirror.co.uk/advice/miriam/2011/08/30/stem-cell-trials-may-spell-the-end-for-ms-115875-23381723/#ixzz1WWVlRGe1
Go Camping for 95p! Vouchers collectable in the Daily and Sunday Mirror until 11th August . Click here for more information

CCSVI in MS Toronto

2011-08-03T15:02:00.002-04:00

CCSVI in MS Toronto
‎"Lawsuits revealed that studies that suggested the drugs were safe and effective were often not written by the scientists listed as the authors. Instead, they were ghostwritten by writers working for the drug companies that make the medications. The scientists listed as authors were offered payment in return for attaching their names." - CTV

Pain Management

2011-08-02T09:13:00.002-04:00

Pain Management Blog « The Patient Experience
www.patient-experience.com
There are a number of different ways of managing pain:-a)Medications. These can vary from aspirin and paracetamol through NSAIDs to various different opioid products.b)Physical approaches. These can include spinal cord stimulation,TENS machines,acupuncture or even low level laser therapy.c)Physiolog

More Hope

2011-07-14T15:15:00.002-04:00

When mice with moderate multiple sclerosis were given very low dosages of dextromethorphan, a drug found in cough medicine, the loss of myelin and the development of paralysis during acute attacks was significantly reduced. (Credit: iStockphoto)

UC DAVIS (US) — A drug commonly found in over-the-counter cough medicine may pave the way for a new and inexpensive therapy for multiple sclerosis.
23Share

In animal testing, the drug dextromethorphan significantly reduced the loss of the fatty sheath (or myelin) surrounding nerve fibers in the central nervous system and also minimized development of paralysis during multiple sclerosis attacks.

The study is published online in the journal Neurobiology of Disease.

“This finding provides an exciting opportunity to better understand the disease and to pursue a new treatment strategy with a drug that is widely available, inexpensive, and known to be safe,” says Wenbin Deng, assistant professor of cell biology and human anatomy at University of California, Davis.

Currently there are few effective treatment options for multiple sclerosis, which affects about 400,000 people in the United States and most often first appears in young-to-middle-aged women.

The condition, that has no cure, is caused by cells of the immune system attacking myelin, the fatty sheath surrounding nerve fibers in the central nervous system that speeds the transmission of nerve impulses.

Symptoms vary widely and often involve periods of motor problems, including paralysis of a limb or poor coordination, which unpredictably may either go away or become permanent. As the disease progresses, it causes increasing disability. Many treatments are poorly tolerated and produce a wide range of side effects.

For the new study, investigators induced mice to have either a moderate or severe type of multiple sclerosis and then treated them with either very low or high dosages of dextromethorphan. Very low dosages given to mice with moderate disease significantly reduced the loss of myelin and the development of paralysis during acute attacks. The high dosages did not offer any benefit.

“Finding that a chemical like dextromethorphan might be useful for treating multiple sclerosis is especially significant because we already know it is safe,” says David E. Pleasure, director of research at the Institute for Pediatric Regenerative Medicine at Shriners Hospitals for Children Northern California in Sacramento and one of the authors of the study. “Normally, a possible new treatment must first undergo years of clinical trials to prove this.”

The researchers began investigating common, over-the-counter cough medicines as treatments for devastating diseases like multiple sclerosis because their molecular structure is similar to morphine. Morphinans—low dose morphine-like agents—have been used “off label” for individuals. While they’re not cures, they potentially can be helpful for selected patients, and appear to have little or no toxicity at low doses.

Dextromethorphan is one of a few morphinan drugs similar in structure to morphine, but without the addictive properties. Deng and Pleasure would like to see clinical trials conducted soon to find out if dextromethorphan is effective in humans with multiple sclerosis. Such a trial would likely involve testing in combination with current standard treatment of the disease.

“Dextromethorphan has a different mode of action than current drugs for multiple sclerosis,” Deng says. “While current treatment targets inflammation and the immune system, dextromethorphan appears to be more directly neuroprotective. Combining the different strategies could offer a real breakthrough in fighting the disease.”

The study was supported in part by grants from the National Institutes of Health, National Multiple Sclerosis Society, and Shriners Hospitals for Children.

The Hubbard Foundation

2011-06-30T13:27:00.000-04:00

USA: The Hubbard Foundation - CCSVI Treatment

The Hubbard Foundation has an IRB-approved study to test CCSVI and treat CCSVI. Those with positive results for CCSVI according to the Haacke Protocol with the Hubbard Foundation, are referred for catheter venoography and if positive for balloon venoplasty.

The Interventional Radiologists (IRs) are Justin Gooding MD, Donald Ponec MD, Richard Saxon MD,

The IRs work out of a private vein clinic in Del Mar, San Diego, CA called MIT Del Mar Vein Care. The MIT Del Mar staff prefers to answer all questions pertaining to CCSVI treatment and treatment fees.

To contact MIT Del Mar Vein Care go to: http://delmarveincare.com/contact.htm

The Hubbard Foundation is mainly a research facility. The primary form of contact is via e-mail: hubbardfoundation@gmail.com or Fax: (858)444-3599

To schedule CCSVI testing and treatment visit:

http://hubbardfoundation.org/index.html

The Hubbard Foundation

10065 Old Grove Rd. Suite 103

San Diego, CA 92131

Beet Juice and the brain

2011-06-30T11:18:00.000-04:00

Beet Juice Good for Brain
www.webmd.com
Drinking beet juice increases blood flow to the brain in older adults, a finding that suggests that consumption of the liquid in the dark red vegetable holds potential for fighting the progression of dementia, a new study says.

Canadian MS News

2011-06-29T18:24:00.000-04:00

CTV.ca News Staff

Date: Wed. Jun. 29 2011 4:27 PM ET

The federal government says it will fund clinical trials into the controversial multiple sclerosis treatment known as the "liberation therapy."

Federal Health Minister Leona Aglukkaq made the announcement Wednesday afternoon during a news conference on Parliament Hill.

Aglukkaq told reporters the government came to its decision after a scientific working group it convened last summer determined during a meeting on Tuesday that a Phase 1 and Phase 2 clinical trial should proceed.

"I have asked CIHR, the Canadian Institute of Health Research, to establish the terms of reference for this clinical trial," Aglukkaq said. "And we are committed to launching an open and transparent call for proposals, and process applications, as quickly as possible."

The liberation treatment was developed by Italian physician Dr. Paolo Zamboni and is based on his theory that narrowed neck veins are behind MS symptoms.

The condition, chronic cerebrospinal venous insufficiency, or CCSVI, reduces blood flow and allows iron deposits to build up in the brain, Zamboni says.

The treatment he developed uses balloon angioplasty to unblock the veins in the hope of alleviating symptoms.

While Zamboni's research has demonstrated success with the treatment, recent clinical trials have concluded that CCSVI is not a primary cause of MS.

The controversy surrounding both the condition and the treatment has not deterred Canadian MS patients from rallying across the country over the last several months to call on both Ottawa and provincial governments to fund the treatment, which is not available in Canada. Many Canadians have had the procedure at medical clinics overseas.

Aglukkaq said the working group was established last August and tasked with reviewing the latest research and making its recommendation to government. The group met in November and again on Tuesday.

Dr. Alain Beaudet, president of the Canadian Institutes of Health Research, said Wednesday that an analysis of all the research done on CCSVI so far suggested "a trend to an association between the greater prevalence of CCSVI in patients with MS than in healthy controls."

Beaudet said more results are needed, particularly from seven current studies, to strengthen the committee's conclusion.

"But, nonetheless, the committee felt that, on the basis of this preliminary evidence and what's published so far, that we should in parallel start already with a Phase 1-2 trial," he said.

During her Wednesday news conference, Aglukkaq hailed MS patients and their families for their struggle with a disease that can lead to symptoms that include difficulty walking, vision problems, fatigue and weakness.

"It has been a moving experience to meet many of you and to hear from so many MS patients and their families who have shown tremendous courage in the face of such difficult illness," she said.

Doctor Hubbard theory of MS

2011-05-20T16:28:00.001-04:00

Dr. Hubbard's theory of MS
Dr. David Hubbard is a neurologist and founder of the Hubbard fMRI Institute and the Hubbard Foundation. He, and Dr. Jack Burks, were the only neurologists present at the recent CCSVI conference, although many neurologists were invited to attend. This was disappointing, to say the least. One would assume that neurologists would be interested in new research into the blood brain barrier and MS. The first thing to note is that the current theory of MS is still only a THEORY. There is absolutely no proof that rogue t-cells are what cause MS. This is an hypothesis. Dr. Hubbard began by discussing the current autoimmune theory. MS drugs, based on EAE and this theory, have a 30% efficacy rate...about the same as placebo. The reason MS drug trials have to be so large and involve so many participants is that it takes that many people to make any statistical significance. The MS drugs are not a success story. They do NOT prove the autoimmune hypothesis. Dr. Hubbard presented his very important insight into what he believes is causing the white matter lesions and destruction of myelin in the MS brain. It is very different than the current understanding that MS specialists propose with the EAE mouse model and the idea that myelin destruction is caused by an out of control immune system which is attacking itself. Oligodendrocytes are a type of brain cell which form the covering of our axons. They make up the myelin sheath. Dr. Hubbard cites research of Prineas and Barnett, showing that the oligodendrocytes DIE FIRST in MS. They are not dying because of an immune attack of white cells....they die BEFORE the immune system is ever involved. The ologodendrocyte shrinks and dies from the center of the cell. Only later do t-cells come in clean up. Macrophages also come in to clean up, this is a standard response of the body to tissue death. "White cells just don't go chomping on the blood brain barrier...they are invited in." So what is the "unknown factor" that is killing oligodendrocytes and inviting in white cells??? Dr. Hubbard proposes that this "unknown factor" is decreased perfusion, or slowed blood flow thru the brain. (Fans of the page will note that this has been the theory of Marie and myself, too, since the beginning of our journey.) Here's an earlier note on hypoperfusion and MS https://www.facebook.com/note.php?note_id=439394977210 The fMRI studies and Dr. Haacke's blood flow studies are confirming this theory. The thing about perfusion is that it affects both WHITE and GRAY matter. It is affects the ENTIRE BRAIN. MS is a disease of the entire brain....gray matter atrophy and white matter demylination. This theory is the first to address BOTH ASPECTS. White cells are picked up by the edges of the endothelium, roll along and then are invited thru the tight junction to get into the brain's paranchyma. MS is not a disease of an immune system gone awry. It is a disease where white blood cells are responding to injury, and are acting appropriately. CCSVI creates a slowed perfusion, or slow flow of blood in the brain. Decreased perfusion and reduced flow and stagnation in the vein causes a shunting of blood around the abnormal venule, the oligodendrocyte is not getting enough O2 and glucose. The oligodendorcyte dies. Please watch all of Dr. Hubbard's research and listen closely. I believe that this is the answer, and connects all we KNOW and all we can SEE about MS brains. http://www.youtube.com/user/HubbFound#p/u/39/Z1BP_xOQQlY I believe this is MS.... - I thank Dr. David Hubbard for bringing the pieces together as a neurologist. - I thank Marie Rhodes for bringing the pieces together as a medical writer. www.ccsvibook.com And I thank all the researchers who are ready to look at this new theory, take it further and begin the process of ENDING MS. For good. Joan
By: CCSVI in Multiple Sclerosis

2011-05-17T18:39:00.000-04:00

Skip Navigation LinksHome > April 21, 2011 - Volume 11 - Issue 8 > Skyrocketing MS Drug Prices Hit Patients Hard, Prompting Com...
< Previous Article | Next Article >
Neurology Today:
21 April 2011 - Volume 11 - Issue 8 - pp 1,19,23
doi: 10.1097/01.NT.0000397957.19762.cd
Features
Skyrocketing MS Drug Prices Hit Patients Hard, Prompting Compliance Problems
Shaw, Gina
Back to Top | Article Outline
ARTICLE IN BRIEF

Neurologists are experiencing the fallout from the steep rise in the cost of MS drugs: Many patients are finding it difficult to comply with their therapy regimen. Among solutions, they recommend governmental intervention in negotiating prices.
AS NEWER, MORE EXPEN...
AS NEWER, MORE EXPEN...
Image Tools

When the first oral drug for multiple sclerosis, fingolimod (Gilenya), first entered the market last fall, neurologists and patients alike experienced sticker shock: the medication was priced at a jaw-dropping $48,000 a year. But, some pointed out, it was the first drug of its kind, with no direct competitors. Perhaps it shouldn‘t be surprising that it came at a premium.

And then the price hikes for other MS drugs followed. Teva's glatiramer (Copaxone) now comes at a rack rate of over $42,000 per year — a jump of nearly 40 percent over prices at the beginning of 2010. Biogen has also raised prices further for both natalizumab (Tysabri) and interferon-beta-1a (Avonex).

Why should older drugs — whose existing prices, one assumes, were already set to cover the costs of bringing the drugs to market in the first place — get a price increase when a new drug comes to market?

Companies want to get the most out of their investment, said Edward Fox, MD, PhD, clinical associate professor of neurology at the University of Texas Medical Branch and director of the MS Clinic of Central Texas. “With the onset of new medications that come at a premium, companies have raised the price of older medications in order not to appear inferior to the new drugs. They look at the price as being meaningful when it comes to expectations. If a certain drug is priced lowest, it must be less worthy somehow.”

Of course, virtually no patients are paying out of pocket the full listed price for these costly medications. “I have 1,400 MS patients and I don‘t have single patient paying full price. I can‘t even conceive of someone with a salary high enough where that would be a consideration,” Dr. Fox said.

But the price increases are still driving more and more people with MS and their families into desperate situations. That's because as the prices paid by third-party insurers have gone up, so too have patients‘ copays and other shared costs. “On a weekly basis, I‘m dealing with patients who have what I would call a medication crisis,” Dr. Fox said. “Many of my patients have copays of between $300 and $800 a month. There aren‘t too many families who can easily absorb that cost.”

Bruce A. Cohen, MD, professor of neurology and director of the Comprehensive Multiple Sclerosis Program at Northwestern University's Feinberg School of Medicine, said that he has a number of patients who are making treatment decisions based primarily on cost.

But that's getting harder and harder to do, said Dr. Fox: “It's become an across the board situation where all of the MS medications are so expensive that you can‘t just switch to a less costly alternative.”

WHY NOT PUT IT OUT NOW ON THOSE WHO WIILL RISK IT ?

2011-05-17T18:34:00.000-04:00

IOL_lifestyle

Take a break

Subscribe to our new Lifestyle newsletter!
Coffee cup

Advanced Search

IOL - logo Home

Love & Sex
Health
Family
Food & Drink
Home & Garden
Style
People
Babynet Forum
Travel
Dating
Games
GQ

SA Time: Wednesday, May 18, 2011 12:30:33 AM
Drug that could stop MS discovered

May 9 2011 at 09:24pm
By Fiona Macrae
Copy of st lab

.

Breakthrough: Scientists are hopeful that they ve found a way of stopping multiple sclerosis in its tracks

Related Stories

Vitamin D linked to minimal MS risk - study

London - A drug that could stop multiple sclerosis in its tracks has been discovered by scientists.

In a major breakthrough in the battle against the devastating disease, researchers have pinpointed the chemical “driving force” behind MS.

Without it, the disease does not develop. And when it is mopped up, symptoms are greatly eased, even in brains already ravaged by the illness.

The results come from experiments on mice but the researchers say they are “quietly optimistic” that taking the same tack will help people with MS. The first trials on patients are pencilled in for later this year.

The debilitating condition affects 2.5 million people around the world, and can cause blindness and paralysis. Current drugs are not suitable for all and there is no cure.

The excitement centres on two studies published recently which show an immune system chemical called GM-CSF to be the “vital piece in the jigsaw” of MS.

In the healthy body, it is part of our defence against disease, attacking viruses and other invaders. But in MS, it triggers a series of reactions that culminate in “scavenger cells” destroying myelin - the fatty protective sheath around nerve fibres in the brain and spinal cord - which disrupts the transmission of messages from the brain.

When Swiss researcher Burkhard Becher gave an antibody that counters GM-CSF to mice with an MS-like condition, it greatly improved their health.

Professor Becher, of the University of Zurich, said: “It is relatively easy to stop mice from getting the disease, so we waited until they had the disease and were pretty sick. This is similar to the clinical situation - patients don’t go to the doctor because they think they might get MS, they go when they have MS.”

The drug was also given to mice whose disease was similar to the most common form of MS, in which relapses are followed by periods of remission. Here, mopping up the GM-CSF prevented any further relapses, the journal Nature Immunology reports.

Becher said: “We are extremely hopeful but whether this form of therapy will actually help MS patients remains to be seen. Quiet optimism is the way to go.

“I am not sure this is going to work in patients but, based on the mouse data, I believe GM-CSF is a good thing to target.”

A German firm, which has no connections to the professor, is already trying to use antibodies against the chemical to treat rheumatoid arthritis. It plans to start tests on MS patients at the end of this year.

It usually takes at least seven years from when a drug is first tried out on patients until it hits the market.

A second study, from Thomas Jefferson University in Philadelphia, also points the finger at GM-CSF.

Although the chemical was known to play a role in MS, its pivotal contribution was not understood until now.

“This is a very interesting development,” said Dr Doug Brown, of the MS Society in the UK. “It is early days and there is still a lot of work to be done before we fully understand what it means for people with MS, but it is satisfying to see that trials are already planned and we look forward to seeing how these progress.”

Mopping up excess GM-CSF may also help treat other conditions, including diabetes, it is hoped. – Daily Mail

2011-05-12T14:34:00.000-04:00

AVONEX
Avonex Custom Report Avonex Overview
Avonex Adverse Events Reported to the FDA Over Time

How are Avonex adverse event reports trending over time?
DrugCite.com

This graph shows volume of adverse events submitted to the FDA by quarter for Avonex, as well as related generic and/or brandname drugs containing the same primary active ingredients. Adverse events are counted if Avonex is flagged as the suspect drug causing the adverse event.
Adverse Event Categories for Avonex

What are commonly reported adverse events by category for Avonex?
Neurological
9402
Infections - Pathogen Unspecified
9288
Demyelinating
8112
Injuries
7742
Musculoskeletal And Connective Tiss...
4652
Bone And Joint Injuries
4263
Administration Site Reactions
3822
Gastrointestinal Signs
3579
Muscle
3023
Joint
2996
Respiratory
2791
Coronary Artery
2674
Mental Impairment
2548
Epidermal And Dermal Conditions
2530
Movement Disorders
2349
Anxiety Disorders
2216
Central Nervous System Vascular
2177
Procedural And Device Related Injur...
2161
Depressed Mood Disorders
2155
Bacterial Infectious
2138
Headaches
2127

This graph shows the top 20 categories of adverse events submitted to the FDA for Avonex, as well as related generic and/or brandname drugs containing the same primary active ingredients, from Q1 2004 to Q4 2010. Adverse events are counted if Avonex is flagged as a suspect drug causing the adverse event.
Most Common Avonex Adverse Events Reported to FDA

What are the most commonly reported Avonex adverse events to FDA?
Influenza Like Illness
4387
Fall
4118
Multiple Sclerosis Relapse
3886
Multiple Sclerosis
3839
Condition Aggravated
2361
Fatigue
2243
Asthenia
2025
Pain
1943
Depression
1942
Pneumonia
1883
Gait Disturbance
1762
Headache
1621
Pyrexia
1599
Death
1531
Urinary Tract Infection
1482
Myocardial Infarction
1421
Pain In Extremity
1315
Hypertension
1297
Convulsion
1295
Hypoaesthesia
1293
Balance Disorder
1217
Memory Impairment
1216
Cerebrovascular Accident
1215
Back Pain
1115
Vomiting
1089
Muscle Spasms
1082
Abasia
1039
Injection Site Pain
1006
Tremor
989
Dehydration
946
Weight Decreased
931
Nausea
926
Dyspnoea
918
Muscular Weakness
898
Dizziness
862
Anxiety
826
Insomnia
817
Arthralgia
800
Chills
780
Injection Site Haemorrhage
774
Mobility Decreased
770
Chest Pain
764
Stress
759
Breast Cancer
733
Intervertebral Disc Protrusion
722
Loss Of Consciousness
717
Breast Cancer Female
710
Thrombosis
689
Oedema Peripheral
666
Diarrhoea
624
Road Traffic Accident
621

This graph shows the top 50 adverse events submitted to the FDA for Avonex, as well as related generic and/or brandname drugs containing the same primary active ingredients, from Q1 2004 to Q4 2010. Adverse events are counted if Avonex is flagged as a suspect drug causing the adverse event.

You must read and share

2011-05-11T18:28:00.000-04:00

Big Pharma Behaving Badly (And Making Me Want to Vomit)
SHAME

Pharmaceutical industry giant Merck Serono this week paid $44.3
million to settle a lawsuit alleging that the company paid kickbacks
to MS neurologists for prescribing its blockbuster MS drug, Rebif
(click here). The scam allegedly included hundreds of doctors, and
seems to have been centered on the Consortium of Multiple Sclerosis
Clinics (CMSC), a nonprofit corporation that is supposed to help
educate patients. Among its other activities, the CMSC administers the
quarterly NARCOMS surveys, designed to build an ever growing database
on MS and its effects on patients, which are diligently filled out by
thousands of multiple sclerosis patients, including, until now, yours
truly.

The lawsuit was brought by a former Merck Serono employee turned
whistleblower, who was fired by the company after expressing disbelief
that such underhanded and blatant misdeeds were going on with the
company’s full knowledge and participation. The entire lawsuit
document is available online (click here), and to save you the
trouble, the good stuff starts on page 6.

We're not talking nickels and dimes here, but huge chunks of cash, on
the order of $25,000 a pop. The CMSC allegedly funneled over $500,000
to various doctors, effectively operating as a money-laundering outfit
for Merck Serono, and the fact that the company settled for $44
million indicates this disgusting scam went far deeper than what is
apparent in the legal document. Unfortunately, by settling the
lawsuit, Merck Serono has effectively prevented all of the gory
details from coming to light, as would've been the case if the suit
had been brought to trial, and thus become public record. The
settlement covers fraud charges regarding Medicare and Medicaid, but
what of the patients that may have been steered into injecting
themselves with a drug that might not have been their best choice by
scoundrels in white lab coats more intent on stuffing their pockets
than following the Hippocratic oath? Where is their justice?

Coming at a time when trust between neurologists and their patients
has become frayed due to the CCSVI controversy, the revelations
provided by the lawsuit and subsequent settlement are especially
revolting. It is simply outrageous that a drug company can get away
with paying physicians kickbacks for prescribing drugs with what
amounts to a slap on the wrist. The terms of the settlement, $44.3
million might sound like a sizable sum, but considering that sales of
Rebif exceed $1 billion a year, the penalty is miniscule.
Additionally, this is most likely only a quick peek under a very big
rock, and it is just a glimpse at goings-on that would shock and
dismay the legions of desperate patients who are the real victims of
these disgusting, dishonest, and deceitful practices.

The fact that this case was settled, and not brought to court, ensures
that the names of most of the players will not be revealed. I'm
tempted to reveal those named in the lawsuit here, but as a settlement
was reached, and no verdict of guilt ever handed down, they remain
simply accused, not convicted. My personal ethics therefore prevent me
from slandering those who might not be guilty as charged, however
unlikely that may be. That's not to say that you shouldn't click the
link (here it is again), read the lawsuit, and find those names for
yourself. In fact, I wholeheartedly encourage you to do so.

Every single doctor and medical professional who received any of these
tainted funds, or participated in distributing them, should be named,
shamed, stripped of their licenses, and thrown in jail. They're a
disgrace, each a pustule on the ass of humanity, and deserve nothing
more than humiliation and degradation. Unfortunately, thanks to the
niceties of a system that too often protects those in positions of
power at the expense of the regular folks who rely on them, the
scoundrels involved will remain anonymous, free to enjoy the fruits of
their despicable actions. Despite our high-minded ideals of justice
for all, far too often there is justice for none.

As for those involved in this medical and legal debacle, and the many
other similar cons we will likely never hear about, may their eyes
fall out. Bastards.

Good read, good news

2011-04-26T12:58:00.000-04:00

Zany Science
Scientists find way to stop multiple sclerosis
Press Trust Of India
London, April 25, 2011
First Published: 16:26 IST(25/4/2011)
Last Updated: 16:33 IST(25/4/2011)
Share more...
6 Comments
Email print
In a major breakthrough in the battle against multiple sclerosis (MS), scientists claim to have identified a chemical that triggers the devastating disease and also found a way to stop it in its tracks.

Researchers at the University of Zurich, Switzerland, found that an immune system chemical,
called GM-CSF, is the "driving force" behind the debilitating condition that affects over 2.5 million people worldwide.

MS is an autoimmune disease that affects the brain and spinal cord, or the central nervous system. The condition, which can cause blindness and paralysis, has no cure at present and drugs are not suitable for all.

multiple sclerosisBut the Swiss researchers claimed that an antibody, which they tested on mice with a MS-like condition, was found to be very effective in countering GM-CSF and improved their health, the Daily Mail reported.

Although the experiments were on mice, the researchers said they were "quietly optimistic" that a similar approach would help people with MS. The first trials on patients are planned for later this year.

In the healthy body, the researchers said, GM-CSF is part of the defence against disease, attacking viruses and other invaders. But in MS, it triggers a series of reactions that culminate in "scavenger cells" destroying myelin -- the fatty protective sheath around nerve fibres in the brain and spinal cord -- which disrupts the transmission of messages from the brain.

Professor Burk-hard Becher, who led the study, said: "It is relatively easy to stop mice from getting the disease, so we waited until they had the disease and were pretty sick.

"This is similar to the clinical situation -- patients don't go to the doctor because they think they might get MS, they go when they have MS."

The drug was also given to mice whose disease was similar to the most common form of MS, in which relapses are followed by periods of remission. Mopping up the GM-CSF prevented any further relapses, the researchers reported in the journal Nature Immunology.

Prof Becher said: "We are extremely hopeful but whether this form of therapy will actually help MS patients remains to be seen. Quiet optimism is the way to go.

"I am not sure this is going to work in patients but, based on the mouse data, I believe GM-CSF is a good thing to target." Another study on MS, from Thomas Jefferson University in Philadelphia, also pointed the finger at GM-CSF.

Although the chemical was known to play a role in MS, its pivotal contribution was not understood until now. Dr Doug Brown, of the MS Society, said: "This is a very interesting development in research for a condition where there are limited treatment options and no cure.

Here we go, watch and make up your mind.

2011-04-22T18:33:00.001-04:00

Good Reason to Keep A Natural Medicine illegal, Right (Marijuana)
www.youtube.com
HELP ME END MARIJUANA PROHIBITION BY RATING SHARING THESE VIDEOS LEGALIZE CANNABIS MEDICAL MARIHUANA WEED 420 HIGH OBAMA RON PAUL PIPE BONG JOINT KUSH DRUG WAR SEEDS News VAPORIZER BOWL HASHISH BLUNTS HASH GANJA HEMP legal cops POT PRIVACY CIVIL RIGHTS LAW ACTIVIST HERB smoke HIGHTIMES COLLAPSE MEXI

2011-04-18T11:35:00.000-04:00

Gerry Armour
Don't you Dare

Don't you dare assume because I look well
That I feel well. Looks can be
very deceiving. Many days I look
great but I feel terrible.

Don't you dare ask me how I feel unless you
really want to know. You may hear
a lot more than you are prepared
to listen to.

Don't you dare to tell me you know how I feel.
No-one knows how anyone else feels.
Two people with the same disease may
feel totally different.

Don’t you dare tell me
“ It could be worse.”
Yes, it could be
But I don’t need to be reminded.

Don’t you dare to decide what I am capable of doing.
Allow ME to decide what activities I can do.
There may be times I make the wrong
Decision, and if I do I’ll know it soon
enough.

Don’t you dare to be upset that I
cannot ease my problems.It won’t do any
good for any of us to be
miserable.

Don’t you dare to assume that because I
did a certain activity yesterday
that I can do it again today.
MS is ever changing.

Do realise that I am angry and
frustrated with this disease –
NOT WITH YOU.

Gerry Armour

Don't Smoke

2011-04-08T10:09:00.000-04:00

Smoking Makes Multiple Sclerosis Worse
ms.about.com
Smoking has been shown to increase risk of multiple sclerosis (MS), but until recently, the impact of smoking on MS disability and progression was unknown. Research now shows that smoking speeds progression from relapsing-remitting multiple sclerosis to secondary-progressive MS.

Great article on CCSVI

2011-03-30T19:17:00.003-04:00

March 28, 2011

A study of 231 patients demonstrated that the use of angioplasty to widen veins is a safe, minimally invasive option for individuals with multiple sclerosis (MS), according to research presented at the Society of Interventional Radiology's (SIR) 36th annual scientific meeting in Chicago. The findings open the door for further research into the clinical role of the treatment.

In a retrospective study, 231 MS patients (age range, 25 to 70 years old; 147 women) underwent 247 endovascular procedures of the internal jugular and azygos veins with or without placement of a stent.

"Our results show that such treatment is safe when performed in the hospital or on an outpatient basis—with 97 percent treated without incident," Kenneth Mandato, MD, an interventional radiologist at Albany Medical Center in Albany, N.Y., noted.

In 99 percent of procedures, patients were discharged within three hours of treatment. Complications included transient headache in 8.5 percent of patients and neck pain in 15.8 percent of patients. Sustained cardiac arrhythmias occurred in three patients. The researchers indicated that cardiac monitoring is essential for rapid treatment of procedure-induced arrhythmias and recommended post-procedure ultrasound to detect venous thrombosis.

About 500,000 people in the U.S. have MS, generally thought of as an incurable, disabling autoimmune disease in which a person's body attacks its own cells. "There are few treatment options that truly improve the quality of life of those with the disease, and some of the current drug treatment options for MS carry significant risk," said Mandato.

In 2009, Paolo Zamboni, a doctor from Italy, published a study that suggested that a blockage in the veins that drain blood from the brain and spinal cord and return it to the heart (a condition called chronic cerebrospinal venous insufficiency or CCSVI) might contribute to MS and its symptoms. The idea is that if these veins were widened, blood flow may be improved, which may help lessen the severity of MS-related symptoms.

The Society of Interventional Radiology issued a position statement last fall supporting high-quality clinical research to determine the safety and effectiveness of interventional MS treatments, recognizing that the role of CCSVI in MS and its endovascular treatment by an interventional radiologist via angioplasty or stents to open up veins could be transformative for patients. "This is an entirely new approach to the treatment of patients with neurologic conditions, such as multiple sclerosis. The idea that there may be a venous component that causes some symptoms in patients with MS is a radical departure from current medical thinking," said Gary P. Siskin, MD, an interventional radiologist and chair of the radiology department at Albany Medical Center and the co-chair of the SIR research consensus panel on MS that was held in October.

"It is important to understand that this is a new approach to MS. As a result, there is a healthy level of skepticism in both the neurology and interventional radiology communities about the condition, the treatment and the outcomes," said Siskin.

"Patients are learning about this therapy and the role of interventional radiology in venous angioplasty through the internet. They are discussing it among themselves—through blogs and social networking sites—and then turning to interventional radiologists for this treatment," he noted. "This is a new entity and one where researchers are clearly very early in their understanding of both the condition and the treatment."

While the use of angioplasty and stents cannot be endorsed yet as a routine clinical treatment for MS, SIR agrees that the preliminary research is very promising and supports studies aimed at understanding the role of CCSVI in MS, at identifying methods to screen for the condition and at designing protocols for exploratory therapeutic trials.

Mandato noted that research still needs to be done concerning patient selection, technique and the outcomes after this procedure, including improvement in symptoms and quality of life and the durability of the response.

The Druging of America

2011-03-29T12:00:00.001-04:00

Washington D.C., March 27, 2011 – Pharmaceuticals are a $650 plus billion dollar a year industry. For years the most profitable business in the U.S. has been the pharmaceutical corporations, which routinely top the annual fortune 500 list. Doctor prescribed drugs support an industry which out-earns the GNP of many nations.

A core attribute to big Pharma’s overwhelming ‘success’ lays in the liaison between the corporations and the ‘symptoms management’ health care industry: The pharmaceutical representative. The men and women we see meeting with physicians, walking into offices with gifts of lunch for the staff, meeting with the doctor while you wait for our appointment.
Gwen Olsen

Gwen Olsen

Gwen Olsen was a top level pharmaceutical rep for some of the biggest in the industry: Johnson & Johnson, Syntex Labs, Bristol-Myers Squibb, Abbott Laboratories and Forest Laboratories.

Through some chilling wake up calls in her tenure, and the tragic drug-related death of her niece, Gwen has dedicated her life to making people aware of the dangers of prescription drugs and how the drug industry manipulates doctors into prescribing, and over prescribing, their drugs.

She is exposing the dark, deep-rooted deception and corruption that is prevalent in this industry.

Gwen Olsens words are powerful. Her message absolutely frightening. Below is a transcript of our conversation as well as a video of Gwen speaking out, including her appearance on a CBS Evening News Eye On Your Children news segment.

Adam Omkara: So you went into the industry with an altruistic mindset and you wanted to help people. When was it made apparent to you that the industry wasn’t based on that altruism, or even healing?

Gwen: Well, it was on the 2nd stage interview with the regional manager. He asked me why I wanted to get into the pharmaceutical industry. I said ‘well I really want to help people, that’s what I want to do’.

He kind of laughed, smiled, and said “Well, I’m not so sure about that. If altruism is what motivates you, then you better join the peace corp." Then he smiled, turned around to his desk and started working on his calculator. He said “however, if money is what motivates you, let me tell you how you can retire a millionaire from this job young lady.”

He went into delineating my benefits, stock options, and it all turned into a big blur for me. I saw dollar signs. It sounded pretty good to a 26 year old. So, that’s how initially I was told it wasn’t altruistic.

Adam Omkara: And you said you were actually trained to misinform people- Can you elaborate on that?

Gwen: Well, initially when you start pharmaceutical sales training you are taken into the home office for a sort of ‘indoctrination’ that’s 2-6 weeks of intensive training. That’s where the industry turns representatives into psychological profilers and people pleasers. The reps learn how to be people analyzers, so they know how to best influence people. We were taught in training sessions called ‘knee to knees’ and ‘toe to toes’ where you have a line of reps that play the doctor and opposing lines that play the rep position.

You have to learn verbatim the company’s position and their marketing lines- you can’t even vary from that. You practice and practice until it flows naturally and doesn’t sound rehearsed.

I started recognizing really that I was being trained to divert doctor’s attention away from his/her concerns. So, I was learning to misinform and disinform- to counter the doctor’s valid concerns. I wasn’t trained to say “this drug is bad for that patient” or “watch out for this drug’s interaction with that one." Any information perceived as a negative was always being candy coated.

In fact many times we would be called into a meeting when a new sales piece was being introduced. Managers would ask us questions on what aspects of the piece we received the most objections on. What were the parts that raised the most concern? After we gave the marketing department that feedback, the next period they would come up with a different layout that had manipulated and minimized the objectionable data. So, it was a constant set of circumstances where I began to see that I wasn’t allowed to give good information and I wasn’t given good information to share.

The industry knows that many of their drugs aren’t safe and that they don’t heal people. In fact, some drugs are designed to make symptoms worse later on.

When I started becoming pro-active and began to ask too many critically intelligent questions, management objected and discouraged me. I was frequently met with answers such as “We do it that way because we can", or "We sell more pills that way.”

It was apparent my inquiries were not welcomed!

It was almost like being in the military, in fact, many of my ex-managers had been in the military. Many are hired because they have great work ethics and they don’t ask a lot of questions. Military personnel are used to working on a ‘need to know’ basis.

Adam Omkara: How did you come to an awakening towards the industry. Did it all hit you all of the sudden, or was it a slow process?

Gwen: I realized early on I was in a position where I could harm people; In a position where I could literally take lives. My grand realization arrived when I started promoting a specific new drug.

I went to a national sales meeting for this new drug launch and was told the wonders on how it was going to help people. We immediately were sent out into our individual territories to get support for the new drug with key prescribing physicians.
The dark secrets of the drug industry

The dark truth of the drug industry

Drug reps are given profiles of all the physicians in the territory on what their ‘writing habits’ are, i.e. their general personality, their prescribing habits like whether they are high volume prescribers or early adopters, or late adopters/skeptics.

Reps have all this information available before making a sales call so that they know how to approach the doctor and can develop a sales strategy.

So there was one doctor in my territory that was profiled as a “late adopter/skeptic.” That meant he was going to be difficult for me to get him to prescribe my new drug.

The marketing plan developed at launch emphasized to the sales force that as a last ditch effort, if a doctor didn’t want to write prescriptions for the new product, then the rep was to ask for just one patient- the most difficult patient that the doctor had. The theory was that if the drug worked for them, then the doctor would be more likely to use it in his broader practice later.

I did my presentation and the doctor told me his policy was he didn’t prescribe a new drug until it’s been on the market for at least a year. He had been burned on new drugs before.

However, with some hesitation he agreed to try it in his most difficult patient who had failed all other therapies and I left him samples.

Some time later I got a call from my district manager. I was being sent out to gather information for an Adverse Drug Reaction (ADR) report, as there has been a death in my territory from our new drug and it was a patient of that doctor. And guess what- it was his mother! She had gone into renal failure and died from complications in dialysis. I was devastated!

After I went to get the ADR info, it took me almost 6 months to work up the nerve to go see that man again and look him in the eye. I was acutely aware that it had been my over-zealous and persistent marketing of the product that had influenced him to do something against his better judgment and, as a consequence, his own mother had paid with her life!

I’ll never forget his angry, terse remark to me, “Well, I see you all put a lot more effort into your marketing plan than you did your drug research and development!” What could I say to him after that?

That was my very first clue as a young rep that my job had serious ramifications.
Once this happened more and more things started falling into place. So with that awareness I began to see the job and industry with new eyes…

Adam Omkara: And no one seems to questions this? Why don’t you think there is more of this awakening or questioning? Representatives, psychiatrists, doctors, managers? Is there some desensitization process that comes into play that’s very effective? Where does the disconnect come into play and how is it sustained?

Gwen: Yes, there is definitely a desensitization process. A re-programming if you will. The indoctrination is usually done at the home office during the initial training and is similar to how they do boot camp in the military. They tear you down physically and psychologically, reps are kept up late nights studying for exams, preparing presentations, filming videos, deprived of sleep, deprived of good nutrition, required to dress to the nines and constantly compete with one another as they are being watched and evaluated in the corporate fish bowl.

It’s a very psychologically grueling, but effective grooming environment.

Then when they release you back into your sales territory, you have this false sense of bravado feeling like you’re someone special who is going to go out and help the world. It’s literally a brainwashing process.

What they are effectively doing is trying to weed out the mavericks and break the weak ones. The one’s who can’t handle the job long term and, therefore, will be a wasted investment.

Adam Omkara: Do you know if the same basic training policy is upheld for other companies?

Gwen: I worked for five different companies and it happened in every single one. And I was no flunkee who lost my job and then started bashing the industry. I was the best of the best and performed at the top 3% in each company that I worked for full time.

Usually, as soon as a rep starts asking too many questions or makes unnecessary waves with management they are easily dispensed of and told there are plenty more eligible people behind them waiting to take their job. The only reason I was tolerated was because of how valuable I was to them.

I always made my district and managers look good at the bottom line.

Adam Omkara: And what about the psychiatrists and that industry? Do they not question?

Gwen: You really want me to be honest? The pharmaceutical industry makes so much fun of the psychiatric profession that it’s not even funny. They actually refer to psychiatrists as ‘drug whores.’ The reason they call them that is because they have no loyalty to any one company or product, it’s whoever is paying them at the time.

I was told in the initial training I received to sell antipsychotic drugs that most psychiatrists got into the field of psychiatry in order to figure out why they were so screwed up. There were definitely some very odd birds! So yeah, they were not held in very high regard. My colleagues and I looked down on them as though they were a ‘lower class’ quasi-physician. Because we knew that they didn’t do anything scientifically, it was all subjective diagnosis in nature, dependent on third-party observation of symptoms.

So they were easy to sell drugs to. Most psychiatrists are so ego-driven they would literally recommend anything when given the appropriate sales pitch!

In this day and age, most psychiatrists don’t use talk therapy anymore- just 15 minute appointments, what are your symptoms, try this and come back in a month. You’re lucky if you can get counseling these days (under coverage) and children rarely get it.

So, you can see there is a huge incentive to continue the psychopharmacologic-based treatment paradigm. Because if this huge house of cards actually implodes there will be all these doctors that have no way to practice in psychiatry anymore. Without drug therapy, how would they practice?

2011-03-28T12:01:00.001-04:00

Interventional radiologists advance MS research: Vein-opening treatment safe
Early study of 231 patients details safety of using angioplasty to widen internal jugular and azygos veins; doctors hope results encourage more research to explore minimally invasive treatment options for those with multiple sclerosis

IMAGE: This is Gary P. Siskin, M.D., FSIR.
Click here for more information.

CHICAGO, Ill. (March 28, 2011)—Understanding that angioplasty—a medical treatment used by interventional radiologists to widen the veins in the neck and chest to improve blood flow—is safe may encourage additional studies for its use as a treatment option for individuals with multiple sclerosis, say researchers at the Society of Interventional Radiology's 36th Annual Scientific Meeting in Chicago, Ill.

"Angioplasty—the nonsurgical procedure of threading a thin tube into a vein or artery to open blocked or narrowed blood vessels—is a safe treatment. Our study will provide researchers the confidence to study it as an MS treatment option for the future," said Kenneth Mandato, M.D., an interventional radiologist at Albany Medical Center in Albany, N.Y. In a retrospective study, 231 MS patients (age range, 25 to 70 years old; 147 women, 84 men) underwent this endovascular treatment of the internal jugular and azygos veins with or without placement of a stent (a tiny mesh tube). "Our results show that such treatment is safe when performed in the hospital or on an outpatient basis—with 97 percent treated without incident," Mandato noted. He added, "Our study, while not specifically evaluating the outcomes of this endovascular treatment, has shown that it can be safely performed, with only a minimal risk of significant complication. It is our hope that future prospective studies are performed to further assess the safety of this procedure." Complications included abnormal heart rhythm in three patients and the immediate re-narrowing of treated veins in four patients. All but two of the patients were discharged within three hours of receiving this minimally invasive treatment.

About 500,000 people in the United States have MS, generally thought of as an incurable, disabling autoimmune disease¬ in which a person's body attacks its own cells. "There are few treatment options that truly improve the quality of life of those with the disease, and some of the current drug treatment options for MS carry significant risk," said Mandato. In 2009, Paolo Zamboni, a doctor from Italy, published a study that suggested that a blockage in the veins that drain blood from the brain and spinal cord and return it to the heart (a condition called chronic cerebrospinal venous insufficiency or CCSVI) might contribute to MS and its symptoms. The idea is that if these veins were widened, blood flow may be improved, which may help lessen the severity of MS-related symptoms.

The Society of Interventional Radiology issued a position statement last fall supporting high-quality clinical research to determine the safety and effectiveness of interventional MS treatments, recognizing that the role of CCSVI in MS and its endovascular treatment by an

IMAGE: This is Kenneth Mandato, M.D.
Click here for more information.

interventional radiologist via angioplasty and/or stents to open up veins could be transformative for patients. "This is an entirely new approach to the treatment of patients with neurologic conditions, such as multiple sclerosis. The idea that there may be a venous component that causes some symptoms in patients with MS is a radical departure from current medical thinking," said Gary P. Siskin, M.D., FSIR, an interventional radiologist and chair of the radiology department at Albany Medical Center and the co-chair of the SIR research consensus panel on MS that was held in October.

"It is important to understand that this is a new approach to MS. As a result, there is a healthy level of skepticism in both the neurology and interventional radiology communities about the condition, the treatment and the outcomes," said Siskin. "Interventional radiologists have been performing venous angioplasty for decades and have established themselves as pioneers in this area of vascular intervention. Patients are learning about this therapy and the role of interventional radiology in venous angioplasty through the Internet. They are discussing it among themselves—through blogs and social networking sites—and then turning to interventional radiologists for this treatment," he noted. "This is a new entity and one where researchers are clearly very early in their understanding of both the condition and the treatment," added Siskin.

SIR's position statement agrees with MS advocates, doctors and other caregivers that the use of any treatment (anti-inflammatory, immunomodulatory, interventional or other) in MS patients should be based on an individualized assessment of the patient's disease status, his or her tolerance of previous therapies, the particular treatment's scientific plausibility, and the strength and methodological quality of its supporting clinical evidence. "When conclusive evidence is lacking, SIR believes that these often difficult decisions are best made by individual patients, their families and their physicians," notes the society's position paper, "Interventional Endovascular Management of Chronic Cerebrospinal Venous Insufficiency in Patients With Multiple Sclerosis: A Position Statement by the Society of Interventional Radiology, Endorsed by the Canadian Interventional Radiology Association." SIR stresses the importance for MS patients to continue an ongoing dialogue with their neurologists to discuss their treatment care.

While the use of angioplasty and stents cannot be endorsed yet as a routine clinical treatment for MS, SIR agrees that the preliminary research is very promising and supports studies aimed at understanding the role of CCSVI in MS, at identifying methods to screen for the condition and at designing protocols for exploratory therapeutic trials. "If interventional therapy proves to be effective, MS patients should be treated by doctors who have specialized expertise and training in delivering image-guided venous treatments," said Siskin. Interventional radiologists pioneered angioplasty and stent placements and use those treatments on a daily basis in thousands of patients with diverse venous conditions.

Mandato noted that research still needs to be done concerning patient selection, technique and the outcomes after this procedure, including improvement in symptoms and quality of life and the durability of the response.

CCSVI Fund Raising

2011-03-28T11:40:00.000-04:00

FirstGiving
Home | Who we are | Sign in
See the new view of this page
Denise Manley's Fundraising Page Page Creator: Denise Manley
Event: Denise Manley's Fundraising Page
Page Closes Wednesday, June 15, 2011

Fundraising Page Image
Denise Manley, Liberated and healing!
About my nonprofit:
Capital Region Medical Research Foundation Inc

Fundraising target: $20,000.00
Total raised so far: $15,531.92
I want to raise money too
I want to raise money:

* for this nonprofit
* for another nonprofit

Fundraising progress

25% 50% 75% 100%

Spread the Word
My personal message:

Many of you know me, Denise Manley, and my story about my struggle in life with secondary progressive multiple sclerosis for the last 20 years and my struggle to get testing and treatment for CCSVI. If you haven't ever met me and want to to really see what angioplasty can possibly do for a person with MS take some time to view my youtube videos of me before and after my procedure with Dr. Gary Siskin. I can be found at http://www.youtube.com/user/9gabbycats .

I have a personal plea for donations towards Dr. Siskin’s work which has started and will show that people with Multiple Sclerosis are suffering from CCSVI and it's treatable. Our fundraising goal is to keep asking for help until the day comes that the entire medical field realize that CCSVI untreated causes multiple sclerosis or at least many of the problems we suffer from.

Dr. Gary Siskin is one of our many pioneer heroes in the treatment of CCSVI. I would like us all to help insure that all the necessary study and research will be well funded and move forward. I will not be completely "Liberated" until all people with MS have the option to be tested and treated for this venous disease and malformation.

To become a participant in a study please follow this link and read the criteria and expectaions.
If you would like to participate please follow the instructions on the study link.

http://clinicaltrials.gov/ct2/show/NCT01201707?term=ccsvi&rank=2

This study is currently recruiting participants. Verified by Community Care Physicians, P.C., August 2010

Let's get movng

2011-03-27T15:42:00.000-04:00

New Address

Can't remember if I told

You, but I have moved out from

Beggars Alley , located at

2 Poverty Lane at the corner of Down and Out Circle.

As of today, I have a brand new home ..

My new address is

Living Well on 231 Abundance Terrace,

Located at the corner of

Blessings Drive and Prosperity Peak .

It's in the God Can neighborhood.

No longer will I allow myself to travel to the other side of town on

Begging Peter to pay Paul Route,

Located at a dead end

Intersection called I Don't Have ,

Which connects with Borrowers Junction!

I no longer hang out at Failure's Place,

Near Excuses Avenue ,

Next to Procrastination Point.

I've moved to an upscale community called

Higher Heights

With unlimited potential and opportunities for me to succeed.

Life is good because

God is good!

Care to change your address?
There are many vacancies!

MY BIRTHDAY BIBLE VERSE

2011-01-14T17:16:00.000-05:00

Philippians 2:3 NIV
Do nothing out of selfish ambition or vain conceit, but in humility consider others better than yourselves.

Big Pharma

2011-01-14T09:03:00.000-05:00

FIGHTING PhRMA’S STEM CELL PROPAGANDA

To remind you of Don’s 4 rules of medicine which are LAW in North America:

1—Profits for PhRMA, HMO’s, Insurance Companies, and Medical Device companies---every one worth multi billions---are all that matters.

2---No cures of ANY chronic disease are allowed EVER; because cures reduce profits.

3---Patients are Lab Rats to buy harmful and deadly “medical” treatments, mostly with our tax money or insurance money. Whether the treatments and drugs really work, or kill with side effects, is of no concern to anyone, especially the FDA.

4—The greatest threat to those profits is the science of Repair (adult) Stem Cells. They will stop at nothing to keep them from you. No lie is too big. No bribe is too big. They can and do spend a hundred million a year, almost all in bribes, keeping stem cells which work AWAY FROM YOU.

EVERY NATIONAL AND STATE PATIENT GROUP IS A DRUG-PUSHING CON FUNDED BY PhRMA

Friendship

2010-12-12T15:36:00.000-05:00

'True' Friendship

None of that Sissy Crap

Are you tired of those sissy 'friendship' poems that always sound good, but never actually come close to reality? Well, here is a series of promises that actually speak of true friendship.

1. When you are sad -- I will help you get drunk and plot revenge against the sorry bastard who made you sad.

2. When you are blue -- I will try to dislodge whatever is choking you.

3. When you smile -- I will know you are plotting something that I must be involved in.

4. When you are scared -- I will rag on you about it every chance I get.

5. When you are worried -- I will tell you horrible stories about how much Worse it could be until you quit whining.

6. When you are confused -- I will use little words.

7. When you are sick -- Stay the hell away from me until you are well again.

8. When you fall -- I will point and laugh at your clumsy ass.

9. This is my oath.... I pledge it to the end 'Why?' you may ask; 'because you are my friend'.

Friendship is like peeing your pants, everyone can see it, but only you can feel it's true warmth.

Remember: A friend will help you move. A really good friend will help you move a body. Let me know if I ever need to bring a shovel...

2010-10-20T13:25:00.000-04:00

"Thinking is easy, acting is difficult, and to put one's thoughts into action is the most difficult thing in the world."

Johann Wolfgang von Goethe

2010-10-15T14:40:00.000-04:00

Please folks. learn the difference between Billions and Millions!

The pressure from the naysayers (drug companies) are putting the pressure on CCSVI believers
and it will not be tolerated.

Just for a minute think why. You may need to understand the difference between millions
and billions of US dollars to understand all this negative pressure on CCSVI.

Think about these numbers for a minute. There are 1000 million dollars that make up a
a billion dollars and the drug companies stand to lose many billions over the coming
years if CCSVI gets a global nod that it works.

Just think about that amount for a minute and I'm being conservative.

Thousands of research jobs and factory jobs and doctors who work at big pharma are
on the line.

CCSVI, denial by many is all about the money and nothing else.

Paolo Zamboni, I'm sure is under pressure from the the money pits of big pharma to
play down CCSVI.

Don't buy into it people.

Nearly forgot to mention the share holders of the drug companies who profit
from no cure. They don't give a damn about fixing your veins.

2010-10-14T15:37:00.001-04:00

With the advent of CCSVI as a major factor in multiple sclerosis, it has become painfully apparent that national MS societies do not have the best interests of persons with MS as their highest priority. This has taken many people by surprise because most people are under the assumption that the main concern of national MS societies is the well being of persons with MS. This assumption is not, and has never been, true. Perhaps one more benefit of the discovery of CCSVI as an important causal factor of MS, has been to expose the myth the national MS societies have people with MS as their #1 priority.

The Groups of the MS Societies

To understand the priorities of national MS societies, it is essential to understand the various groups which compose their structure. These groups are the scientific advisors, the staff members, the board members, and the members of the society who are mainly persons affected by MS. Each of these groups plays a very specific role in how a given national MS society functions.

The most important and influential group is the scientific advisors who determine the type of information the society provides to the members and to the public at large. They also determine what research will be done and what overall policies will be followed when it comes to lobbying efforts to influence government decisions. The scientific advisors are clinical neurologists who specialize in multiple sclerosis. Many of them also carry out research activities in addition to their clinical work.

The next important group is the paid staff of the society and, in the case of a large society, they can number in the hundreds. Their salary and benefit packages are on par with workers in similar jobs in both the private and public sectors. Importantly, the staff, for the most part, puts into action the policies and plans of the scientific advisors, that is, the neurologists. There is a very strict adherence to this and no deviation or independent thinking is tolerated. The staff members are like soldiers who do what they are told and are not expected to contribute to the scientific or public policies of the society. They are simply the “go-betweens”, the neurologists and the all those seeking information from the society. Notably, most staff members are not affected by MS.

By far the greatest responsibility of the staff is to raise money by running various fund raising projects. Most of staff time in spent on this critical activity which is understandable given the majority of the money raised goes to pay staff salaries and benefits. Staff members also arrange some programs for people with MS in terms of education but this activity is rather minor in terms of actual time and effort expended. The staff also fields questions from persons with MS and, as noted previously, the provided information is only that sanctioned by the scientific advisors (neurologists).

The board of directors of a given national society is most often composed of people who usually have good connections for fund raising from corporations or who have strong political connections. Usually a few persons with MS are included on a board but, in most cases, the majority of board members are not affected by MS. One or more staff members also usually are part of the board.

Most board members have at best a rudimentary understanding of science in general and the science of MS in specific. They have very little influence on any major policies of the society and, in most cases, simply rubber stamp the scientific and political policies determined by the neurologists and implemented by the staff. Their main responsibility seems to be ensuring that the society is on a firm financial footing and discussing the merits of proposed fund raising campaigns.

The final group in a national MS society consists of the members themselves and they, for the most part, are persons affected by MS. They are the consumers of the products of the society which consist mainly of information dictated by the neurologists and packaged by the staff. Such information is both hard copy and web-based. Some members act as volunteers and volunteer activities are related to both money raising activities and to helping other people with MS. The members essentially have no say in terms of the main policies of the society although on a local level they can help to get new member services initiated.

In summary, a national MS society spends most of its time raising money which is used to pay fund-raising costs, the salaries and benefits of the staff members, and substantial administrative expenses. Such expenses require about 80-85% of all money collected. The amount left over is mainly used to fund research projects approved by the scientific advisors (neurologists) and, not surprisingly, projects of former and current advisors usually are well funded. Proposals from “outsiders” don’t fare so well.

Past Situation

In the past, everything went along rather smoothly with the society advertising the need to raise money to cure MS, with such a cure being attainable through the research activities funded by the society. Given the severe disabilities sometimes associated with MS, the need for finding a cure for MS is not a hard sell, and the large MS societies raise tens of millions of dollars every year. In the 60 years this routine has been going on, the research funded by the societies has not brought us anywhere even remotely near the prospect of developing an effective treatment for MS. This impressive failure has only led to louder calls for more money for more research.

The scientific and medical information provided by a national MS society is entirely centred on drug therapies that have been approved for use. The staff members strongly advocate the use of such drug therapies and almost all other proposed therapies are ignored, discouraged and/or denigrated. The main government lobby efforts of the societies usually are to fight for the approved use of the drugs.

It is imperative to appreciate that most (often all) of the scientific advisors of the societies and the societies themselves have strong financial ties to the pharmaceutical companies which manufacture and market the approved drug therapies for MS. The most blatant of such ties is that of the NMSS of the United States. It partners with drug companies and gives substantial grants to them.

The existence of such financial ties readily accounts for the policy that only drug therapies are advocated and that the value of such therapies is never, ever remotely questioned. These financial ties also create a serious conflict of interest for the neurologists and MS societies when it comes to any proposed, non-drug therapy and that is one, big reason why non-drug therapies are ignored or downplayed by the societies.

There can be no doubt that the national MS societies are there mainly for the benefit of the neurologists (scientific advisors) in that they provides them much needed research funding. The societies also provide an excellent vehicle for promoting drug therapies which are financially very important for the neurologists. Of course the societies are also there for the benefit of the staff members who make a good living from keeping everything running smoothly and ensuring the information from the neurologists reaches the desired destinations.

Before the advent of CCSVI, the drug therapies were the only conventional medical therapies available. By advocating such therapies, the societies could easily claim to be acting in the best interests of persons with MS even though such advocacy was driven mainly by the best interests of the neurologists and the societies themselves. Whether or not the use of the current drugs is really in the best interests of persons with MS is a completely separate issue and will be explored in a separate document.

CCSVI Rocks the Boat

The sudden emergence of CCSVI as an important factor in MS, and the great promise of CCSVI treatment for slowing and perhaps even halting MS disease progression for many, have caused a great problem for MS societies around the world. Given all that we now know about CCSVI and its treatment, the national MS societies would best serve the interests of persons with MS by immediately funding a major, comprehensive research program which definitively tests the effectiveness of CCSVI relief in the next few years. Furthermore, it would also be in the best interests of persons with MS if the MS societies lobbied to have CCSVI treatment available as soon as possible given the health problems associated with having impaired venous drainage from the brain and the many hundreds of credible, experiential accounts of very significant positive changes following CCSVI treatment.

The MS societies have studiously avoided funding any clinical trial studies for CCSVI treatment as was clearly demonstrated by the rejection of proposals from top CCSVI researchers by North American national MS societies. (e.g. University of Buffalo, Stanford University, McMaster University). Notably, those who got their proposals accepted seem to have either very strong ties to the pharmaceutical industry (e.g. Wolinsky at U of Texas) or do not know what they are doing. A fine example of this latter category is Dr Kathleen Knox at the University of Saskatchewan who recently was quoted as saying “The biggest difficulty her team faces, is that they don’t know how to test patients to see if they have the blocked veins”. This is a stunning admission of incompetence and shows the type of researchers favoured by the national MS societies when it comes to CCSVI “research.

Some national MS societies are actively lobbying their respective government NOT to allow CCSVI treatment. A fine example of this is a recent letter the director of the Ontario division of the MS Society of Canada wrote to the Ontario Health Minister emphasizing that the province should not fund any CCSVI testing or treatment. The notice on the website of the Multiple Sclerosis Society of Canada says it all - “the MS Society does not recommend that people with MS be examined or treated for CCSVI outside of an established research protocol”. All in all, any thought that MS societies are acting in the best interests of persons of MS must be abandoned. So who’s best interests are they serving with their actions?

When it comes to CCSVI, the interests of the neurologists and the societies are best served by having CCSVI marginalized, by not funding any CCSVI treatment research, and by lobbying the government to not allow any treatment of impaired venous drainage in persons with MS despite the obvious health hazard such a condition represents. The reasons for such actions are straightforward.

If CCSVI treatment by venous angioplasty turns out to be far more effective than the current drug treatments, and there is every reason to expect it will be, then MS drug revenues will plummet precipitously. Such a huge loss of revenue will have a devastating effect on the financial well being of MS neurologists and the national MS societies themselves. Furthermore, persons with MS will be treated primarily by interventional radiologists, thus adding to the financial losses of the neurologists. There is no question that any activity which helps to bring the implementation of CCSVI treatment forward is not in the best interests of the neurologists and the national MS societies that they control and everyone is well aware of this indisputable but somewhat awkward fact.

Because of the advent of CCSVI, we now have an unprecedented situation of conflicting interests. What is in the best interests of persons with MS is clearly not in the best interests of both the neurologists who provide the scientific guidance for the MS societies and the staff of the societies who put into effect the policies of the neurologists.

The Current Reality

Not surprisingly, the best interests of the neurologists and the society staff members will always trump the best interests of the persons with MS. Thus the policies and actions of the national MS societies have been to avoid any funding of proposed CCSVI treatment studies and to lobby government bodies not to provide any CCSVI treatment. They also advise persons with MS not be tested or treated for CCSVI despite the obvious medical need for such treatment (blocked veins are hazardous to one’s health).

The neurologists and the MS societies also have instituted a policy of casting doubt on the validity of the CCSVI concept and on the safety of CCSVI treatment. This has even gone as far as blatant fear-mongering when it comes to having venous angioplasty to relieve CCSVI. One good example of this recently appeared in a governmental health report written by MS neurologists. The writers claimed that the only venous blockages that exist in persons with MS are clots caused by angioplasty and the only results of venous angioplasty are injuries to the vein. This is of course sheer nonsense but, as they say, truth is the first casualty in any war.

The current actions of the national MS societies regarding CCSVI are entirely rational once the structure of the societies is understood. The societies are acting in the best interests of the neurologists and staff members as they always have and always will. Unfortunately, when it comes to CCSVI, such actions are not in the best interests of persons with MS. However, it is the false perception that the national MS societies are there primarily to serve the best interests of persons with MS that has created the shock and disappointment with the current actions of the societies in regards to CCSVI. When it comes to the policies and actions of the national MS societies, persons with MS must fully realize that they are lower in priority than the neurologists and staff members. The CCSVI issue has clearly demonstrated this beyond any reasonable doubt.

Consequences of the Actions of the National MS societies

We now have sufficient data to say that, each day a person with MS suffers the consequences of impaired venous drainage, they are doing harm to themselves and such a reality has to be clearly understood. It has been said, “MS Never Sleeps” and one of the main reasons for this is that impaired venous drainage never sleeps and this serious pathology is causing problems every day for persons with MS. Thus it logically follows that every dollar the national MS societies raise is potentially doing harm to persons with MS because that dollar is potentially contributing to actions that are designed to delay the availability of CCSVI treatment for all persons with MS.

Given the above, it is clear that the interests of persons with MS would be best served by halting any support of national MS societies and by supporting groups which are actively promoting the need for CCSVI treatment research and government support for the availability of CCSVI treatment as soon as possible.

Summary

The advent of CCSVI has revealed the highest priorities of the national MS societies. These are actions and policies that are in the best interests of neurologists and society staff members. The interests of persons with MS are a distant third in this contest of competing interests. Continued support for national MS societies is potentially harmful for persons with MS because of the societies’ deliberate lack of appropriate and much needed actions regarding CCSVI. All persons affected by MS should be supporting organizations which are funding clinical trials to test the effectiveness of CCSVI treatment and which are lobbying governments to make CCSVI treatment widely available in the near future.

2010-09-30T14:21:00.000-04:00

lert: Video released: Paladino fights with reporter

MS study to be conducted by local doctors

Reported by: Kristin Lowman
Email: kristinlowman@fox23news.com
Videographer: B. Flynn
Editor: B. Flynn
Last Update: 12:01 am

Print Story | ShareThis

Next >

Play Video

Video 1 of 1

All Video

Angioplasty for MS

Angioplasty for MS

Angioplasty study for MS

Another good read

2010-09-21T17:41:00.000-04:00

My MS Journey: Chris Alkenbrack's Speech on Parliament Hill

my-darn-ms.blogspot.com

A Must Read

2010-08-31T11:17:00.000-04:00

Introduction

The Groups of the MS Societies

To understand the priorities of national MS societies, it is essential to understand the various groups which compose their structure. These groups are the scientific advisors, the staff members, the board members, and the members of the society who are mainly persons affected by MS. Each of these groups plays a very specific role in how a given national MS society functions.

The most important and influential group is the scientific advisors who determine the type of information the society provides to the members and to the public at large. They also determine what research will be done and what overall policies will be followed when it comes to lobbying efforts to influence government decisions. The scientific advisors are clinical neurologists who specialize in multiple sclerosis. Many of them also carry out research activities in addition to their clinical work.

The next important group is the paid staff of the society and, in the case of a large society, they can number in the hundreds. Their salary and benefit packages are on par with workers in similar jobs in both the private and public sectors. Importantly, the staff, for the most part, puts into action the policies and plans of the scientific advisors, that is, the neurologists. There is a very strict adherence to this and no deviation or independent thinking is tolerated. The staff members are like soldiers who do what they are told and are not expected to contribute to the scientific or public policies of the society. They are simply the “go-betweens”, the neurologists and the all those seeking information from the society. Notably, most staff members are not affected by MS.

By far the greatest responsibility of the staff is to raise money by running various fund raising projects. Most of staff time in spent on this critical activity which is understandable given the majority of the money raised goes to pay staff salaries and benefits. Staff members also arrange some programs for people with MS in terms of education but this activity is rather minor in terms of actual time and effort expended. The staff also fields questions from persons with MS and, as noted previously, the provided information is only that sanctioned by the scientific advisors (neurologists).

The board of directors of a given national society is most often composed of people who usually have good connections for fund raising from corporations or who have strong political connections. Usually a few persons with MS are included on a board but, in most cases, the majority of board members are not affected by MS. One or more staff members also usually are part of the board.

Most board members have at best a rudimentary understanding of science in general and the science of MS in specific. They have very little influence on any major policies of the society and, in most cases, simply rubber stamp the scientific and political policies determined by the neurologists and implemented by the staff. Their main responsibility seems to be ensuring that the society is on a firm financial footing and discussing the merits of proposed fund raising campaigns.

The final group in a national MS society consists of the members themselves and they, for the most part, are persons affected by MS. They are the consumers of the products of the society which consist mainly of information dictated by the neurologists and packaged by the staff. Such information is both hard copy and web-based. Some members act as volunteers and volunteer activities are related to both money raising activities and to helping other people with MS. The members essentially have no say in terms of the main policies of the society although on a local level they can help to get new member services initiated.

In summary, a national MS society spends most of its time raising money which is used to pay fund-raising costs, the salaries and benefits of the staff members, and substantial administrative expenses. Such expenses require about 80-85% of all money collected. The amount left over is mainly used to fund research projects approved by the scientific advisors (neurologists) and, not surprisingly, projects of former and current advisors usually are well funded. Proposals from “outsiders” don’t fare so well.

Past Situation

In the past, everything went along rather smoothly with the society advertising the need to raise money to cure MS, with such a cure being attainable through the research activities funded by the society. Given the severe disabilities sometimes associated with MS, the need for finding a cure for MS is not a hard sell, and the large MS societies raise tens of millions of dollars every year. In the 60 years this routine has been going on, the research funded by the societies has not brought us anywhere even remotely near the prospect of developing an effective treatment for MS. This impressive failure has only led to louder calls for more money for more research.

The scientific and medical information provided by a national MS society is entirely centred on drug therapies that have been approved for use. The staff members strongly advocate the use of such drug therapies and almost all other proposed therapies are ignored, discouraged and/or denigrated. The main government lobby efforts of the societies usually are to fight for the approved use of the drugs.

It is imperative to appreciate that most (often all) of the scientific advisors of the societies and the societies themselves have strong financial ties to the pharmaceutical companies which manufacture and market the approved drug therapies for MS. The most blatant of such ties is that of the NMSS of the United States. It partners with drug companies and gives substantial grants to them.

The existence of such financial ties readily accounts for the policy that only drug therapies are advocated and that the value of such therapies is never, ever remotely questioned. These financial ties also create a serious conflict of interest for the neurologists and MS societies when it comes to any proposed, non-drug therapy and that is one, big reason why non-drug therapies are ignored or downplayed by the societies.

There can be no doubt that the national MS societies are there mainly for the benefit of the neurologists (scientific advisors) in that they provides them much needed research funding. The societies also provide an excellent vehicle for promoting drug therapies which are financially very important for the neurologists. Of course the societies are also there for the benefit of the staff members who make a good living from keeping everything running smoothly and ensuring the information from the neurologists reaches the desired destinations.

Before the advent of CCSVI, the drug therapies were the only conventional medical therapies available. By advocating such therapies, the societies could easily claim to be acting in the best interests of persons with MS even though such advocacy was driven mainly by the best interests of the neurologists and the societies themselves. Whether or not the use of the current drugs is really in the best interests of persons with MS is a completely separate issue and will be explored in a separate document.

CCSVI Rocks the Boat

The sudden emergence of CCSVI as an important factor in MS, and the great promise of CCSVI treatment for slowing and perhaps even halting MS disease progression for many, have caused a great problem for MS societies around the world. Given all that we now know about CCSVI and its treatment, the national MS societies would best serve the interests of persons with MS by immediately funding a major, comprehensive research program which definitively tests the effectiveness of CCSVI relief in the next few years. Furthermore, it would also be in the best interests of persons with MS if the MS societies lobbied to have CCSVI treatment available as soon as possible given the health problems associated with having impaired venous drainage from the brain and the many hundreds of credible, experiential accounts of very significant positive changes following CCSVI treatment.

The MS societies have studiously avoided funding any clinical trial studies for CCSVI treatment as was clearly demonstrated by the rejection of proposals from top CCSVI researchers by North American national MS societies. (e.g. University of Buffalo, Stanford University, McMaster University). Notably, those who got their proposals accepted seem to have either very strong ties to the pharmaceutical industry (e.g. Wolinsky at U of Texas) or do not know what they are doing. A fine example of this latter category is Dr Kathleen Knox at the University of Saskatchewan who recently was quoted as saying “The biggest difficulty her team faces, is that they don’t know how to test patients to see if they have the blocked veins”. This is a stunning admission of incompetence and shows the type of researchers favoured by the national MS societies when it comes to CCSVI “research.

Some national MS societies are actively lobbying their respective government NOT to allow CCSVI treatment. A fine example of this is a recent letter the director of the Ontario division of the MS Society of Canada wrote to the Ontario Health Minister emphasizing that the province should not fund any CCSVI testing or treatment. The notice on the website of the Multiple Sclerosis Society of Canada says it all - “the MS Society does not recommend that people with MS be examined or treated for CCSVI outside of an established research protocol”. All in all, any thought that MS societies are acting in the best interests of persons of MS must be abandoned. So who’s best interests are they serving with their actions?

When it comes to CCSVI, the interests of the neurologists and the societies are best served by having CCSVI marginalized, by not funding any CCSVI treatment research, and by lobbying the government to not allow any treatment of impaired venous drainage in persons with MS despite the obvious health hazard such a condition represents. The reasons for such actions are straightforward.

If CCSVI treatment by venous angioplasty turns out to be far more effective than the current drug treatments, and there is every reason to expect it will be, then MS drug revenues will plummet precipitously. Such a huge loss of revenue will have a devastating effect on the financial well being of MS neurologists and the national MS societies themselves. Furthermore, persons with MS will be treated primarily by interventional radiologists, thus adding to the financial losses of the neurologists. There is no question that any activity which helps to bring the implementation of CCSVI treatment forward is not in the best interests of the neurologists and the national MS societies that they control and everyone is well aware of this indisputable but somewhat awkward fact.

Because of the advent of CCSVI, we now have an unprecedented situation of conflicting interests. What is in the best interests of persons with MS is clearly not in the best interests of both the neurologists who provide the scientific guidance for the MS societies and the staff of the societies who put into effect the policies of the neurologists.

The Current Reality

Not surprisingly, the best interests of the neurologists and the society staff members will always trump the best interests of the persons with MS. Thus the policies and actions of the national MS societies have been to avoid any funding of proposed CCSVI treatment studies and to lobby government bodies not to provide any CCSVI treatment. They also advise persons with MS not be tested or treated for CCSVI despite the obvious medical need for such treatment (blocked veins are hazardous to one’s health).

The neurologists and the MS societies also have instituted a policy of casting doubt on the validity of the CCSVI concept and on the safety of CCSVI treatment. This has even gone as far as blatant fear-mongering when it comes to having venous angioplasty to relieve CCSVI. One good example of this recently appeared in a governmental health report written by MS neurologists. The writers claimed that the only venous blockages that exist in persons with MS are clots caused by angioplasty and the only results of venous angioplasty are injuries to the vein. This is of course sheer nonsense but, as they say, truth is the first casualty in any war.

The current actions of the national MS societies regarding CCSVI are entirely rational once the structure of the societies is understood. The societies are acting in the best interests of the neurologists and staff members as they always have and always will. Unfortunately, when it comes to CCSVI, such actions are not in the best interests of persons with MS. However, it is the false perception that the national MS societies are there primarily to serve the best interests of persons with MS that has created the shock and disappointment with the current actions of the societies in regards to CCSVI. When it comes to the policies and actions of the national MS societies, persons with MS must fully realize that they are lower in priority than the neurologists and staff members. The CCSVI issue has clearly demonstrated this beyond any reasonable doubt.

Consequences of the Actions of the National MS societies

We now have sufficient data to say that, each day a person with MS suffers the consequences of impaired venous drainage, they are doing harm to themselves and such a reality has to be clearly understood. It has been said, “MS Never Sleeps” and one of the main reasons for this is that impaired venous drainage never sleeps and this serious pathology is causing problems every day for persons with MS. Thus it logically follows that every dollar the national MS societies raise is potentially doing harm to persons with MS because that dollar is potentially contributing to actions that are designed to delay the availability of CCSVI treatment for all persons with MS.

Given the above, it is clear that the interests of persons with MS would be best served by halting any support of national MS societies and by supporting groups which are actively promoting the need for CCSVI treatment research and government support for the availability of CCSVI treatment as soon as possible.

Summary

The advent of CCSVI has revealed the highest priorities of the national MS societies. These are actions and policies that are in the best interests of neurologists and society staff members. The interests of persons with MS are a distant third in this contest of competing interests. Continued support for national MS societies is potentially harmful for persons with MS because of the societies’ deliberate lack of appropriate and much needed actions regarding CCSVI. All persons affected by MS should be supporting organizations which are funding clinical trials to test the effectiveness of CCSVI treatment and which are lobbying governments to make CCSVI treatment widely available in the near future.

2010-08-28T10:20:00.000-04:00

Browse Notes

CCSVI in Multiple Sclerosis's Notes

Report

Write a Note

Blood Flow and white matter lesions

by CCSVI in Multiple Sclerosis on Saturday, August 28, 2010 at 2:25am

Thanks to Jim for posting the research of Dr. Bernard Juurlink -a Saskatchewan researcher who proposed the theory of MS being created by slowed bloodflow in 1998---

Here's the story on Canada.com

http://www2.canada.com/story.html?id=3452379

Here's is Dr. Juurlink's proposal from 12 years ago--

http://www.ncbi.nlm.nih.gov/pubmed/9824835

Just wanted to write a post about this for my research geek friends on my favorite topic:

Hypoperfusion in the MS brain

Hypo-meaning under ot sub-par and perfusion- meaning the delivery of blood to the capillary bed.

In MS brains, there is a below normal delivery of blood into brain tissue. Neurologists have never given a good explanation. Here's a great paper that looks at this phenomena and tries to figure out why this is happening.

(terms to know -NAWM is normal appearing white matter, or healthy myelin.

Myelin is the protective white matter in your brain. Gray matter is the tissue below the myelin.

Ischemia means a lack of oxygen or hypoxia.)

http://www.nature.com/jcbfm/journal/v28/n10/full/jcbfm200872a.html

"Accumulating evidence indicates that there is a decreased perfusion throughout the NAWM (normal appearing white matter) in patients with MS. It occurs in both relapsing–remitting and primary progressive MS, strongly suggesting that it represents an integral part of the disease process. Ischemic changes might be involved in the development of a subtype of focal demyelinating lesions (type III lesions). There appears to be a relationship between reduced white matter perfusion and cognitive dysfunction in patients with MS.

Ge et al (2005) interpreted the hypoperfusion in NAWM as a vasculopathy in the context of the perivascular inflammations that occur in focal MS lesions. However, although inflammatory infiltrates in MS are typically located around small- or medium-sized veins (Adams, 1989) and in the perivascular spaces surrounding arterioles (Gay, 2006; Gay et al, 1997), microvessel thrombosis is only exceptionally being observed within these lesions (Aboul-Enein and Lassmann, 2005; Wakefield et al, 1994)."

So, this paper comes pretty close to saying that this slowed perfusion and white matter lesions could be created by slowed blood flow and a lack of oxygen in the brain. This is exactly what Dr. Juurlink was proposing.

Here's a study that shows that white matter lesions in rats were formed when cerebral hypoperfusion was created in their brains.

http://www.ncbi.nlm.nih.gov/pubmed/13680276

"Cerebrovascular white matter lesions represent an age-related neurodegenerative condition that appears as a hyperintense signal on magnetic resonance images. These lesions are frequently observed in aging, hypertension and cerebrovascular disease, and are responsible for cognitive decline and gait disorders in the elderly population. In humans, cerebrovascular white matter lesions are accompanied by apoptosis of oligodendroglia, and have been thought to be caused by chronic cerebral ischemia. In the present study, we tested whether chronic cerebral hypoperfusion induces white matter lesions and apoptosis of oligodendroglia in the rat. Doppler flow meter analysis revealed an immediate reduction of cerebral blood flow ranging from 30% to 40% of that before operation; this remained at 52–64% between 7 and 30 days after operation. Transferrin-immunoreactive oligodendroglia decreased in number and the myelin became degenerated in the medial corpus callosum at 7 days and thereafter."

There is NO NEED for any auto- immune system activation to create white matter lesions or myelin destruction. NONE. Dr. Juurlink knew this. Many doctors who study stroke know this. All that is needed is slowed blood flow. Did you know that most elderly people have white matter lesions in their brains? We don't see them, because they are not routinely given MRIs. But it's a known fact that the aging brain has slower perfusion, slower circulation and decreased blood flow, resulting in less oxygenation. Why has the correlation of circulation in MS and other neurodegenerative diseases been ignored? This chaps my hide.

Here's a paper where they created white matter lesions in rats' brains by clamping their carotid arteries closed. Remember, the arteries bring the blood in, the veins take it out. Slowed perfusion can be created by slowed delivery of blood, or slowed removal. It works both ways.

http://www.ncbi.nlm.nih.gov/pubmed/11743996

Notice in this study, the first areas of white matter lesions were on the optic nerve after only THREE DAYS of ligation. This mimics the order of problems we see in pwMS. RRMS patients typically present with vision problems first and show white matter lesions.

"Cerebral white matter (WM) lesions are observed frequently in human ischemic cerebrovascular disease and have been thought to contribute to cognitive impairment. This type of lesion can be experimentally induced in rat brains under chronic cerebral hypoperfusion by the permanent occlusion of both common carotid arteries. However, it remains uncertain whether chronic ischemia can damage both the gray and white matter, and whether it can induce demyelination with or without axonal damage. Therefore, we examined axonal damage using immunohistochemistry for the amyloid β/A4 precursor protein (APP), chromogranin A (CgA) and demyelination using immunohistochemistry for the encephalitogenic peptide (EP) in this model. Severe WM lesions such as vacuolation and the loss of nerve fibers appeared in the optic nerve and optic tract after 3 days of ligation, and less intense changes were observed in the corpus callosum, internal capsule, and fiber bundles of the caudoputamen after 7 days with Klüver–Barrera and Bielschowsky staining. These WM lesions persisted even after 30 days. The APP, CgA, and EP-immunopositive fibers increased in number from 1 to 30 days after the ligation in the following WM regions: the optic nerve, optic tract, corpus callosum, internal capsule, and fiber bundles of the caudoputamen. "

When neurologists say that Dr. Zamboni's research is not based on fact....give them a lecture on hypoperfusion and white matter lesions. This is science, this is fact, this is real.

Joan

2010-08-07T09:09:00.000-04:00

Background Information on CCSVI all in one place!

Tuesday, June 22, 2010 at 12:36pm

Background Information on CCSVI
Multiple sclerosis (MS) is a chronic demyelinating disease of the central nervous system of unknown origin. Since the time of Charcot, a relationship between the cerebral veins and the inflammatory lesions associated with MS has been consistently reported (1,2). Observations have been made that the periventricular lesions of MS seem to extend along cerebral veins and that the cortical lesions occur within territory drained by cortical veins (1,3-5). Additional post-mortem studies have confirmed the relationship between the lesions of MS and the small veins of the CNS (6-8). For example, Fog showed that MS plaques arise from segments of large epiventricular veins and then extend into the cerebral hemispheres along the cerebral veins (6). In addition, Putnam showed plaques lined with gliotic tissue containing large veins, surrounded by hematogenous pigment (7). While these observations imply a connection between the cerebral veins and MS, this connection was felt to be interesting but was largely ignored.

As MRI became a primary way of evaluating patients with MS, the potential connection between the cerebral venous circulation and MS was once again observed. Studies showed that patients with MS have cerebral blood flow disturbances, including decreased cerebral blood flow, decreased cerebral blood volume, and a prolonged mean transit time (9-12). These findings were felt by some to be due to vascular pathology and not a result of decreased metabolic demand (10,13). However, the cause of the abnormal flow was never fully explained. MR venography has also been helpful in directly demonstrating the relationship between the inflammatory lesions of MS and the cerebral veins (14).

Histologic studies of the venous system in MS have potentially shed some light on this relationship. These studies have shown evidence of both pericapillary fibrin cuffs and perivenous iron deposits in the form of extracellular hemosiderin and iron-laden macrophages (8,15,16). In addition, MRI has been able to detect these perivenous iron deposits (17-19). Iron is known to be important for CNS physiology since it is a cofactor for neural metabolism and ATP production and because it is involved in myelination and oligodendrocyte development (20,21). In addition, a role for iron in the pathophysiology of senile toxicity and neurodegenerative disorders such as Alzheimer's disease and Parkinson's disease has been described (22-24), possibly due to oxidative stress and free-radical generation (18,25,26).

Interestingly, there appears to be a possible role for iron in the inflammation associated with MS, although investigations into this role are limited (20). For example, Grant, et al. found that the incidence of encephalomyelitis (EAE) in mice, which is often used as an experimental for MS, was 60-70% in mice with a normal iron level and in iron-overloaded mice, but 0% in iron-deficient mice, suggesting that iron-deficiency is protective against EAE (27). Similarly, Sfagos found higher levels of serum ferritin and soluble transferring receptors in active MS than in controls (28). Both of these findings support the hypothesis that local iron-overload may be the initial signal of the inflammatory chain in MS (2).

This relationship between the venous circulation and iron deposition has been better explored in patients with chronic venous insufficiency in the lower extremities (2). In the lower extremities, venous reflux and venous obstruction are known to cause multiple problems including varicose veins, edema, skin changes (including pigmentation, lipodermatosclerosis, etc.), and ultimately venous ulcers. Studies have demonstrated a relationship between tissue iron accumulation and the inflammatory changes associated with chronic venous insufficiency (29-32). In the lower extremities, venous stasis can lead to extravasation of red blood cells. The degradation of these cells causes iron to be released, ultimately leading to its incorporation into ferritin, hemosiderin deposition, and inflammatory change (2). In addition, both chronic venous reflux and local iron overload may activate matrix metalloprotease (MMP) in the vein wall, which can lead to the degradation of collagen, elastin, and laminin, resulting in tissue breakdown and ulcer formation (33-36). Finally, the presence of a pericapillary fibrin cuff has been shown around the lower extremity vasculature in these patients and is considered a marker of insufficient venous drainage.

One of the reasons why the correlation between venous abnormalities and MS has been explored recently is because histologic changes similar to those seen in chronic venous insufficiency of the lower extremities have been found in association with MS. A pericapillary fibrin cuff is consistently found in patients with MS (8,15,16), which is important since fibrin deposition is thought to exacerbate axonal injury in MS patients (37). In addition, it is known that MMP activation has a role in MS by digesting basement-membrane collagen and fibronectin, thereby facilitating the migration of cells and proteins into the CNS, perhaps inciting the inflammatory response characteristic of MS (38-40). Cellular migration may involve red blood cells and their degradation can lead to increased iron deposition. As stated previously, perivenous iron deposits have been found on both MR imaging studies and histologic studies in MS patients.

While the histologic findings described above seem to support similarities between MS and chronic venous insufficiency, recent descriptions of venous abnormalities in MS patients have lent additional support to the theory of Chronic Cerebrospinal Venous Insufficiency (CCSVI). Zamboni, et al used Doppler ultrasound to evaluate the venous circulation in patients with MS (41,42). The findings that were seen significantly more often in MS patients than in normal controls included constant reflux in the internal jugular and/or vertebral veins, reflux in the deep cerebral veins, indetectable flow in the internal jugular and/or vertebral veins, and a defined stenosis of the internal jugular veins. Patients with positive Doppler examinations were subsequently studied with selective venography, which showed that CCSVI is characterized by multiple extracranial stenoses involving the internal jugular and azygous veins (43). More recently, Zivadinov, et al reported on the preliminary data from the Combined Transcranial and Extracranial Venous Doppler Evaluation (CTEVD) study at the 2010 meeting of the American Academy of Neurology (44). This study evaluated 441 patients (280 patients with MS and 161 healthy controls) and found that the prevalence of CCSVI in MS patients was 56.4% and in healthy controls, it was 22.4%. When the 10.2% of subjects in which the results were borderline were excluded, the percentage of affected MS patients rose to 62.5% compared to 25.9% of healthy controls.

Zamboni, et al were able to define four main patterns of extracranial disease in MS patients based on involvement of the internal jugular and/or azygous veins. It was felt that these disease patterns may occur more frequently in different forms of MS (41,45). For example, the form involving the azygous vein may be more common in patients with the primary progressive form of MS, which correlates with the fact that spinal plaques are often seen in these patients. It was therefore theorized that the location of venous obstruction might play a key role in determining the clinical course of MS.

Importantly, the internal jugular and azygous veins represent the primary routes for venous outflow from the CNS. Extracranial Doppler studies have shown that the internal jugular veins are the predominant pathways for drainage when a patient is in the supine position and that the vertebral veins are the primary pathways when a patient is upright (46,47). When flow in the internal jugular veins and/or azygous vein is compromised, it can have physiologic implications for cerebral blood flow. Collateral vessels develop in order to prevent the development of intracranial venous hypertension (48,49). However, even with these collateral pathways in place, the venous drainage is insufficient and the transit time is prolonged, as confirmed by MR perfusion studies (10,48,49). This can lead to several problems. Since normal CSF circulation depends on efficient venous drainage from the CNS (50-52), insufficient venous drainage can lead to lower net CSF flow. This is supported by the increases in the volume of the lateral and third ventricles in MS patients (51). Insufficient venous drainage can also cause retrograde venous flow and reflux into the CNS (49), which has been demonstrated in the deep cerebral veins and transverse sinus in MS patients (53). Based on the Doppler studies performed by Zamboni, et al, the reflux occurs in any body position and without being elicited by a forced movement, which suggests that the reflux is due to a stenosis or occlusion as opposed to valvular incompetence (41).

The presence of chronic reflux and flow reversal in the cerebral venous system can lead to increases in the peak diastolic velocity of blood, which increases the resistance to flow (53). The microcirculation can then become overloaded and transmural pressure becomes increased (35,54). Even before any discussions about CCSVI, venous hypertension was thought to play a role in the pathogenesis of MS (55,56). It is thought that slight increases in venous pressure can lead to venous dilatation, which can potentially separate the endothelial cells forming the blood brain barrier (57). This can enable cells, including red blood cells, to pass through the blood brain barrier and initiate the perivenular inflammatory process that is seen in MS (2,53). In MS, changes in microcirculatory perfusion parameters on MRI have been shown to precede plaque formation (58). These ideas may explain the venous distribution of MS lesions.

With this in mind, Zamboni, et al treated 65 MS patients with CCSVI that was diagnosed on Doppler ultrasound (59). These patients underwent selective venography of the internal jugular and azygous veins from a common femoral vein approach. A significant stenosis was considered a venous lumen reduction >50%, which correlated with a pressure gradient of 2.2 cm/H20. All of these procedures were performed as outpatient procedures. All patients were treated with angioplasty, which led to improved luminal diameter and reduced venous pressures. Six patients reported a post-operative headache, which resolved spontaneously in all patients. No other operative or postoperative complications were reported. Patients were followed with repeat Doppler ultrasound and venography at 18 months. At the completion of follow-up 96% of lesions treated in the azygous vein were patent and 53% of lesions treated in the internal jugular veins were patent; many of these patients underwent secondary angioplasty but the long-term patency after this second intervention has not yet been studied. Zamboni also showed sustained clinical improvement in relapsing-remitting patients as evidenced by significant improvement in the Multiple Sclerosis Functional Composite (MSFC). However, only limited improvement was seen in patients with primary and secondary progressive MS. All of the relapsing-remitting patients with continued patency of the internal jugular and azygous veins at 18 months were relapse-free. In addition, there were reductions in enhancing lesions on the MRI studies performed in these patients one year after treatment. This study concluded that endovascular treatment of CCSVI using angioplasty is feasible and safe.

Taken from Melissa Medina's blog

2010-08-06T17:05:00.000-04:00

BEFORE YOU JUDGE.......WALK A MILE IN MY SHOES!!

This is what I and other MSers may have:

Visual Symptoms-
Symptom Description
Optic Neuritis Blurred vision, eye pain, loss of colour vision, blindness
Diplopia Double Vision
Nystagmus Jerky Eye Movements
Ocular Dysmetria Constant under- or overshooting eye movements
Internuclear Ophthalmoplegia Lack of coordination between the two eyes, nystagmus, diplopia
Movement and sound phosphenes Flashing lights when moving eyes or in response to a sudden noise
Afferent Pupillary Defect Abnormal pupil responses

Motor Symptoms-
Symptom Description
Paresis, Monoparesis, Paraparesis, Hemiparesis, Quadraparesis Muscle weakness - partial or mild paralysis
Plegia, Paraplegia, Hemiplegia, Tetraplegia, Quadraplegia Paralysis - Total or near total loss of

Muscle strength-
Spasticity Loss of muscle tone causing stiffness, pain and restricting free movement of affected limbs
Dysarthria Slurred speech and related speech problems
Muscle Atrophy Wasting of muscles due to lack of use
Spasms, Cramps Involuntary contraction of muscles
Hypotonia, Clonus Problems with posture
Myoclonus, Myokymia Jerking and twitching muscles, Tics
Restless Leg Syndrome Involuntary Leg Movements, especially bothersome at night
Footdrop Foot drags along floor during walking
Dysfunctional Reflexes MSRs, Babinski's, Hoffman's, Chaddock's

Sensory Symptoms-
Symptom Description
Paraesthesia Partial numbness, tingling, buzzing and vibration sensations
Anaesthesia Complete numbness/loss of sensation
Neuralgia, Neuropathic and Neurogenic pain Pain without apparent cause, burning, itching and electrical shock sensations
L'Hermitte's Electric shocks and buzzing sensations when moving head
Proprioceptive Dysfunction Loss of awareness of location of body parts
Trigeminal Neuralgia Facial pain

Coordination and Balance Symptoms-
Symptom Description
Ataxia Loss of coordination
Intention tremor Shaking when performing fine movements
Dysmetria Constant under- or overshooting limb movements
Vestibular Ataxia Abnormal balance function in the inner ear

Vertigo Nausea/vomitting/sensitivity to travel sickness from vestibular ataxia

Speech Ataxia Problems coordinating speech, stuttering

Dystonia Slow limb position feedback
Dysdiadochokinesia Loss of ability to produce rapidly alternating movements, for example to move to a rhythm

Bowel, Bladder and Sexual Symptoms
Symptom Description
Frequent Micturation, Bladder Spasticity Urinary urgency and incontinence
Flaccid Bladder, Detrusor-Sphincter Dyssynergia Urinary hesitancy and retention
Erectile Dysfunction Male and female impotence
Anorgasmy Inability to achieve orgasm
Retrograde ejaculation Ejaculating into the bladder
Frigidity Inability to become sexually aroused
Constipation Infrequent or irregular bowel movements
Fecal Urgency Bowel urgency
Fecal Incontinence Bowel incontinence

Cognitive Symptoms-
Symptom Description
Depression
Cognitive dysfunction Short-term and long-term memory problems, forgetfulness, slow word recall
Dementia
Mood swings, emotional lability, euphoria
Bipolar syndrome
Anxiety
Aphasia, Dysphasia Impairments to speech comprehension and production

Fatigue

Heat intolerance- Uhthoff's Symptom Increase in severity of symptoms with heat

Inappropriately cold body parts

Gastroesophageal Reflux Acid reflux

Impaired sense of taste and smell

Epileptic seizures

Swallowing problems

Respiratory problems

Sleeping Disorders

Autonomic nervous system problems

2010-08-06T11:50:00.000-04:00

Take Your Drugs:

Saturday, July 10, 2010 at 1:00pm

In the face of so many “independent” studies which show that the main MS drugs are of no benefit, and in some case actually make MS sufferers worse. Why are Neuros still pushing them? Why the hard sell?

My friend was just at his Neuro, and from the time he went in the clinic front door, the reception staff were doing their drug sales pitch. These people aren’t even Doctors, yet they are pushing drugs. Isn’t that illegal?

Immediately following this ambush, his Neuro starts pushing the drugs again, and starts to make him feel guilty, irresponsible, and stupid for not taking any of them.

The Neurological community is the first to ram the idea down our throats that CCSVI must have concrete independent studies. They need proof. They basically say that they can’t trust that Zamboni dude, since his petty research is all a hoax. It’s just junk science. It’s all garbage.

Well lets call a spade a spade shall we. Who has the “junk science” now?

The monsters at Big Pharma are acting like a bunch of criminals. What else can you call them?

Their self-fulfilling gold ribbon studies are a hoax. Their glossy sales pitch, is nothing but an unethical fraud. They are robbing patients and governments of billions of dollars, when clearly selling bottles of murky Lake Ontario water, would clearly offer more medical benefits.

So what is going on? Multiple independent studies verify what I’m saying. They all say that the level of disability was no different in groups of patients who took “the drugs” as compared to matched groups who took nothing. These were long-term studies, which looked at their level of disability.

If the Neuros, slick Drug Dealers, and the supportive MS Society are demanding they need proof that CCSVI Treatment offers any benefit, then they bloody well must halt their unrelenting drug promotion and support, and start holding the drugs up to the same ethical standards they demand of CCSVI. Anything less is not acceptable.

From around the globe, in 2010 we have seen nearly 2,000 MS sufferers receive a simple 45-minute angioplasty treatment. We are seeing benefits, that are clearly unmatched by any other known MS treatment. We have seen lives saved.

For many with advanced cases of MS there is no other treatment option available!

The Neurological community has completely failed the very patients they are sworn to help. That’s a fact. We see it unfolding right before our eyes now.

The book on MS has been rewritten by Dr. Paolo Zamboni. It's the most amazing thing ever.

Now it’s time for the Neurological community to pick up that book, and read it too.

WaYnE

Ashton Embry - New Studies Show the MS Drugs Don’t Slow Progression:
http://tinyurl.com/25jrtmk

Dr. Alastair Compston and the Drug Dealers:
http://www.facebook.com/note.php?note_id=426801499918

The Independent - MS drug trial 'a fiasco'
http://license.icopyright.net/user/viewFreeUse.act?fuid=OTA3NDM0MQ%3D%3D

UK scheme for MS drugs "a costly failure" - experts:
http://www.reuters.com/article/idUSLDE6520H520100603

BMJ - Multiple sclerosis risk sharing scheme: a costly failure:
http://www.bmj.com/cgi/content/full/340/jun03_1/c1672

NHS 'has wasted millions on MS drugs which did nothing to help patients'
http://www.telegraph.co.uk/health/healthnews/7800543/NHS-has-wasted-millions-on-MS-drugs-which-did-nothing-to-help-patients.html

Interferons May NOT Be Good for Some People with MS:
http://ms.about.com/b/2010/03/30/interferons-not-good-for-some-people-with-ms.htm

CCSVI for Dummies:
http://tinyurl.com/22t4887

2010-07-31T09:19:00.001-04:00

The Saddest, Maddest Letter You Will Ever Read in Reply Canada's Health Minister

The Saddest, Maddest Letter you will ever read in reply to Canada’s Health Minister

Dear Honorable Leona Aglukkag,

My name is Mary Berukoff. I am not a doctor or politician. So why am I commenting on your recent letter in reference to new evidence relating CCSVI (Chronic Cerebrospinal Venous Insufficiency) and Multiple Sclerosis? First, I have twin brothers, 49 years old, with families, who should be in the prime of their working lives but who have been diagnosed both with MS and CCSVI. Second, I am a teacher with a lifelong career in how to process information using critical thinking skills to move from generalities to specifics in non-judgmental ways.

Critical thinking is logical, open-minded reasoning which moves past one’s own subjective views to seek out all possible answers even if it is different than what was originally thought.

So your reply on July 15 makes me very SAD because I wonder if you even read the previously sent material (May 26) because not a single reference to any statement was made. How can any person read 35 pages of material from doctors and politicians and not make some kind of observation? It makes me very MAD because your standardized answer, read before from other politicians, shows a one-sided, non-critical miscomprehension of how the real issue is affecting Canadians. But there is also HOPE with compromise and equality, once the semantics are clarified.

This letter is also addressed to ALL Canadians who may be aware of buzz worthy headlines but not the underlying facts. This information will undoubtedly make them very sad and very mad, too, if they care for basic human rights.

There is a profound discrimination and conspiracy raging in our country and, too many times, the details are omitted. Political agendas are being mixed with health issues best left to qualified doctors to deal with new medical evidence and advancement. Right now, there are some Canadians with diagnosed blockages in their veins who are denied treatment while others can receive it. As MS patients, we demand equal health care, to stop this medical negligence...and so will the rest of Canadians once they better understand a few details why this terrible injustice is happening.

Let me reply to your letter with deductive reasoning to show how important it is to explain what you say. First, your words will be stated (italicized) followed by a few specific details and a conclusion. If, in your opinion, your government’s role in any of these conclusions is inaccurate, please make the necessary corrections. Unbiased dialogue has never been more essential.

YOUR STATEMENT: …the government ..2008 -2009 invested 5.3 million for MS

…through the Canadian Institute of Health Research (CIHR). Since 2000 CIHR has invested 45 million MS research.

DETAILS:

1. Who is the CIHR…council includes neurologist, health management consultant, 2 professors of pharmacology, 2 psychiatrists, 2 molecular biologists, a director of pharmacy, Vice President of Pfizer Canada, 2 cardiologists, a surgeon and a deputy Minister of Health with no medical qualifications.

2. For 2008, MS studies included MS pediatrics, sleeplessness and depression with MS, TH17 lymphocytes and lesions, how to deactivate parts of the immune system, and leg braces to facilitate walking. The cause of MS is still theoretical only.

3. Since 2000, research grants have largely focused on neurotransmitters, molecular biology, neurophysics and even stem cell replacement. Stenosis was not a viable topic. What were the long term research benefits based on this Autoimmune Inflammatory Label… certainly, none for my brothers.

CONCLUSION A: When it is obvious that the balance and focus of CIHR is neurology, immunmodulatory drugs and chemotherapy for MS research, can anyone really expect that somehow they would shift status quo, mid-stream, to verify a physical intervention to improve proper blood flow that just might render previous research irrelevant? What would happen to their jobs, their salaries, their credibility? Of course, their establishment is understandably impervious to change, but professional credence must be given to other specialists and progress of scientific discovery.

YOUR STATEMENT: I have asked Dr. Alain Beaudet, President of CIHR, to provide advice to the government on how to advance research in this important area (treatment and diagnosis of CCSVI)…CIHR in collaboration with the MS Society of Canada will convene an international meeting of top scientists to identify research priorities…

DETAILS:

1. Dr. Alain Beaudet is a neurologist who would need to change his 60 year old theory that MS is an auto immune disease not a vascular problem. How likely will he welcome studies involving biological mechanisms such as physical correction of reflux of venous blood back to the brain that just might alleviate the autoimmune process. He could be typified as an electrician trying to do a plumber’s job.

2. CCSVI is already an identifiable syndrome unanimously recognized by an expert international body (47 countries) in which blood flow from the brain is compromised and is a disease state that by itself must be treated every time it is found with angioplasty. (Exception to the rule...if you live in Canada and have MS, but it is permitted if you don’t have MS.) No MS Canadians can receive this simple treatment locally, either under their provincial health plans or at their own expense...but they can cosmetically lift their brows or breasts.

3. An angioplasty, where a balloon opens constrictions on veins, is not controversial and is often considered more safe and effective than drugs. They have been performed elsewhere in the body as a standard of practice – both with and without stents – for more than a decade. Connection between blocked veins and MS symptoms was identified in the 1930’s and hundreds more research articles and testimonials have corroborated many positive results.

CONCLUSION B. Therein lies the main controversy between neurologists and vascular surgeons. Neurologists call for more research to find a causal link as to why there are such a high number of MS patients with congested veins. Vascular specialists are able to diagnose and dilate narrowed or blocked veins and improve blood flow and, with it, balance and walking, reduce dizziness, fatigue, muscle spasms and incontinence. A scan and angioplasty in a public hospital setting is estimated bout $1500.

YOUR WORDS …in collaboration with the MS Society

DETAILS:

1. Who are these directors of the MS Society and what are their medical qualifications that warrant competent appraisal of research grants? Oddly, for trustees asking for public money, the National MS Society would not disclose their biographies, but here are similar qualifications from directors in the BC /Yukon MS Chapter: sales/training, Brain Injury Society C.E.O, Chartered Accountant, self-proclaimed "passion pusher" fundraiser, director of a scrap-tire recycling program, human resource leader, lawyer,. News Director and morning news announcer, radio and television host and producer, assistant professor of the Faculty of Medicine (Neurology), civil engineer for metro planning, sheriff, and the director of the UBC MS Clinic and Clinical Trials Group.

2. The Medical Information and Education Assistant VP for the MS Society of Canada, Ms. Aprile Royal, has several glowing reports about new exciting (and expensive) medications in the drug pipeline on YouTube. A request for a brief biography was never received, but she is not a Dr. Royal.

CONCLUSION C. This is outrageous that non-medical personnel can debate or override the credentials, training and experience of vascular doctors or that some “talking head” at the MS Society eagerly provides drug information about necessary long term studies. Frankly, only doctors should be able to give this advice.

The MS Society really has had a very close tie to Big Pharma for decades, and as long as nothing changes, the talking heads that address the media and advise Government, will still promote the drugs and fight against a simple angioplasty treatment to correct CCSVI.

YOUR STATEMENT: MS Society of Canada and the National MS Society (USA) announced on June 11, 2010 that they are committing $2.4 million to fund 7 CCSVI research projects...to identify the best methods for screening for blockages.

DETAILS:

1.CCSVI has been described as dangerous and invasive by the neurological

Community and MS Society based on the main opposition that there are no randomized prospective trials. But, they say it’s alright to only take anatomical pictures and study vein irregularities for 2 years.

2. Not one of the projects is focused on problems with venous blood flow return or improving intervention techniques. Not a single vascular doctor, or other experts, were accepted. Angioplasty is NOT innovative, experimental, or dangerous and has been appropriately evaluated for decades! Proper blood flow matters!

3. The small sample size (200 clients) itself creates a problem because of the danger of sample bias. Double-blind control groups only make sense when testing drugs with one active ingredient to monitor. But MS is a multifaceted disease and it would be near impossible to find subjects who have similar backgrounds, vein malformations, blood flow and MS symptoms, Two years of comparing vein pictures will be inconclusive and reason enough to discontinue this research, as has been suggested.

CONCLUSION D…to be open-minded, research and treatment cannot be exclusive. CCSVI diagnosis and treatment as a non MS-specific therapy has enough current evidence and observation to proceed in fair and equal funding and clinical trials.

YOUR STATEMENT: Our government will continue to work with the MS Society of Canada and CIHR to encourage researchers to apply for funding to further the knowledge of CCSVI and MS.

DETAILS:

1. Guess how much of your donations to the Multiple Sclerosis Society go to administration fees..58%... ranked # 2 for charity work drawn from your donations.(I knew it was bad but this is disgusting.)

2. T-3010 forms filed by the Multiple Sclerosis Society of Canada show that the 10 highest paid administrators at the MS Society of Canada make the following salaries plus full benefits:

5 people make from 80,000 to 119,999

2 people make from 120,000 to 159,999

3 people make from 160,000 to 199,999

3. Rather than “working together” on government policies, you must start examining this “advice” from the MS Society, their research foundations and educational consortiums which receive heavy funding from pharmaceuticals. In fact, many such charitable organizations are sometimes referred to as trade associations or opinion makers for drug companies. M.S. Society has not taken one single step or made any effort to interview patients who have already had the procedure, to better understand or investigate the results.

CONCLUSION E: It is clear that “working” with the MS Society will only endorse well entrenched medical models where new data is being ignored (or camouflaged as images without context) and primary spokespersons are well funded and strongly resistant to change. They would face massive layoffs because of the lack of ability to no longer siphon a large portion of donations and use it for Administrative fees. Pharmaceutical companies would have large financial losses because their very expensive meds wouldn’t be the only source of proven “treatment” anymore.

Put these conclusions A, B, C, D, and E, together… and you have a conspiracy and the basis of great unwarranted discrimination with no regard for patients’ rights outside of old theories with very limited positive testimonials.

CIHR has no track record for MS as a vascular condition.

The point is neurologists in their Neurology Annuals can defend their rights to practice old autoimmune drug-based paradigms…but they MUST NOT drag along MS patients who want a second opinion to try something else.

MS Society Directors are rich in advocating for their status quo with no personal disclosures and no medical qualifications.

The point is they MUST NOT override qualified surgeons and their research on congested veins where MS is not the issue.

Dear Honourable Minister, you can see why your letter without these critical components has made us very SAD…and probably many others who endure this devastating disease. What about tax payers who pay this heavy burden of health care? Once informed with facts, why would anybody choose to pay $30,000 of more annually for drugs per patient with limited effects when a simple angioplasty has resulted in so many positive results.

But I AM MAD...VERY MAD because I can see, every day, the toll price my brothers and their families are paying for lack of critical honest information. Your government policies have put so many MS citizens into untenable positions.

Time to think deductively again.

Here are our rational choices. What option would you choose if you truly understood the devastation of this disease, personally and economically?

PREMISE: wait five to seven years for research ratification via MS Society who support a drug pushing' monopoly on treatment options

DETAILS:

1. Continue to accept a doctor telling you that there is no evidence that possible blockage in your Internal Jugular Veins 'doesn't matter really'

2. Continue to take your recommended drugs with the belief that it is much better for you than good blood flow. Ignore recent studies that suggest that the so-called CRAB drugs have no statistically significant long-term effects ( Copaxone, Rebif, Avonex, and Betaseron,) These standard drugs are administered by injection and cost up to $30,000 per year covered by Pharmacare and taxpayers.

3. Continue a crippled day-by- day existence because neurologists say unproven and vascular doctors are shut down.

PREMISE: become patient activists and seek physicians with catheter skills and begin these treatments

DETAILS:

1. If we have a vascular problem...let us be treated for the vascular problem first.

2. The fact that clinical improvements occur cannot be disputed. Although

the placebo effect cannot be ignored, some of the anecdotal positive results have been impressive. Patients are experiencing undeniable benefits, clearly unmatched by any know MS medication. Even before leaving the procedure room, patients describe improved cognition and a return of sensation and reduction in neuralgia within minutes.

3. 47 other countries approve this treatment and Canadians are forced to spend as much as $10,000 abroad without the benefit of protocols or follow-up care. It also seems that more and more American Interventional Radiology and Endovascular Therapy Clinics and doctors are opening their hands to help. Approximately 1,000 successful liberation treatments done to date around the world should be enough to encourage the Canadian health-care system to allow the treatment as an option to patients – even if on a pay-per-service basis

Call to Hopes and Actions as the Honourable Health Minister of Canada.

1. Note the immediate red flags that come up with a little bit of research…expecting CIHR doctors or MS Society directors to find critical and logical answers and displace decades old theory…highly unlikely. They have milked the potential cash cows for the MS drugs industry and MS charity industry for decades.

2. The M.S. Societies are not acting in our best interests and many patients now are loudly informing media, government and public donors that they are not buying their statement that “ the MS Society endeavors to change government policies, private industry practices and public attitudes in ways that will benefit people affected by MS.” They show rude discourtesy in not answering questions and lack credibility in delivering any medical competence…out of 15 Government relations committee and staff only one person is a MD.

3. Embrace the good news that you already have considerable enthusiastic support of both the Liberal and NDP health critics at the federal level. With your federal financial support, changes at the provincial level may be faster coming. Take a direct role with Provincial Health Ministries and their advisory panels. Demand that they watch the videos and talk directly to individuals who have already been diagnosed and treated. We do not need them to conduct more studies, just investigate the evidence that already exists. Tough economic times require you to be more fiscally responsible in your health budgets. Imagine how quickly the upfront cost would be recovered as use of MS drugs became less common.

4. Initiate real research into blood flow anomalies that will include neurologists, vascular specialists and interventional radiologists working together! Debates about widespread applications should not displace patients’ rights who FIRST need proper clinical trials with diagnosis, treatment and follow-up research. Angioplasties must be allowed whether you have MS or not. Invite specialists like Dr. Sandy McDonald or Dr. Maggisano to initiate a full -scale research trial. The government should fund CIHR to immediately facilitate a registry that will capture the patients accessing CCSVI around the world to determine any change in neurological and vascular symptoms…true CCSVI research.

5. Stop the greatest health travesty of all by anticipating non-medical personnel at the MS Society to define parameters of advocacy or research. Our health decisions and futures will not be handled by fundraisers, accountants and scrap metal dealers, amongst others! In fact, it is time to review and start new legal standards where professional fundraisers with no medical background should have no right to request millions of Canadian tax payers money to fund their special interest research projects or when the Board of Directors refuse to publicly state their expertise. (Example, the current CEO of MS Society of Canada who recently requested $10 million dollars of government money for their interpretation of CCSVI.)

6. Welcome MS citizens as informed and intelligent, who understand the risks if any, and who do not need a paternalistic establishment to protect them behind a science façade of “controversial treatment.” We are NOT desperate, vulnerable, or overwhelmed by unproven unsafe therapies. We know that “hope” doesn’t equate to empirical data…but there is nothing else with so much potential…6 weeks after receiving a one hour angioplasty in Egypt, a MS sufferer for 33 years is now learning to play golf again “because the ground isn’t rocking any more!” We read evidence everyday of other improvements in quality of life that no drug treatment with vast public monies has even come close to emulating. Please respect and honor the right of individuals to seek second opinions and make decisions as it relates to our personal health.

6. Canada Health Act and Medicare System will continue to be renowned for high moral and ethical standards and can be on the leading edge of CCSVI testing and treatment. Imagine the benefits that would accrue not only to MS patients but to society as a whole without the need to pay for their MS drugs and accommodate their incapacities.

Finally, let us particularly listen to doctors who have lived the MS experience and treatment successfully…

I believe that when a new treatment has practically only minor possible complications (as reported by Dr. Zamboni with venogram and angioplasty) and a good potential for benefits, as opposed to pharmacological treatment rich in side-effects, the need for rigorous scientific double-blind trials is unethical nonsense. We need a few more vascular surgeons and radiologists to start treating vascular anomalies (strictures of the jugular veins) on their own merit, not mentioning MS. (Dr. Campalani, 35 year career cardiac surgeon with MS, also treated for CCSVI with much improved quality of life.)

Honourable Minister, there are thousands of MS patients in our great and humane country who have been told that their symptoms have nothing to do with abnormal blood flow around the brain. For those who believe differently that there is enough research and evidence, give them their liberty in making their own decisions. Liberate the hands of skilled Canadian surgeons so we don’t have to travel at high expense and worry.

For many of us there are no other choices versus a young life being stolen from our families …rapidly losing the ability to walk, to look after their children, homes, gardens, even personal self-care.

Help us leave a better legacy for the Canadian Health Care System.

Sincerely,

Mary Berukoff, on behalf of Matt and Dan and families.

PS. Read the enclosed article How to Stop MS Bullying and Start MS Compromise…it’s all about compromise at this stage.

PPS. CONGRATULATIONS to Saskatchewan’s Premier Brad Wall to help fund clinical trials of this promising therapy for multiple sclerosis patients...his vision will be shared by the remaining premiers if they are critical and compassionate thinkers as well.

2010-07-24T10:17:00.001-04:00

Chronic Cerebrospinal
Venous Insufficiency
A new paradigm and therapy for multiple sclerosis.
BY SALVATORE J.A. SCLAFANI, MD
COVER STORY
Figure 1. Preprocedural MR venogram shows a venous
plethora of collateral veins throughout the neck. Arrows
point to perceived stenoses of the distal lower cervical
portion of the IJV.
neurological disorder of young adults. It is quite possible
that some of the protean manifestations of MS,
including fatigue and lethargy, headaches, and cognitive
dysfunction, may actually represent symptoms of CCSVI
itself.8
CCSVI is more insidious in its onset than acute
venous insufficiency. In fact, the association of CCSVI
with MS has been largely ignored despite Charcot’s original
description of the relationship of the cerebral veins
and inflammatory lesions that are the hallmark of MS.9
Zamboni proposes that CCSVI has a role in the
pathogenesis of MS. He suggests that resistance to cerebrospinal
venous outflow causes vicarious redistribution
through small collateral veins that cannot handle
high flow.10 He also suggests that tight endothelial junctions
widen to allow diapedesis of red blood cells,
T cells, and other immune cells into the brain, resulting
in inflammation and hemosiderosis that is reminiscent
of what is seen with venous insufficiency of the lower
extremities. This is supported by iron deposition as seen
on susceptibility-weighted magnetic resonance imaging
(SW-MRI), which reveals that the inflammatory MS
plaques always surround a central venous structure.
MRI shows that the central vein and surrounding
plaque have abnormal quantities of iron. Pathologically,
the basement membranes of these deep veins are thickened,
and hemosiderin deposits are present in the wall
of and adjacent to the deep cortical veins. T cells and
macrophages violating the blood-brain barrier provide a
working explanation for the autoimmune cascade that
result in demyelination and the neurological manifestations
associated with MS.
DIAGNOSIS
Ultrasound
One could argue that the diagnosis of MS is sufficient
to justify catheter venography to identify venous abnormalities
worthy of angioplasty. However, Zamboni used
ultrasound imaging to noninvasively screen patients who
might have CCSVI, and this algorithm persists as the route
of detection. His protocol includes transcranial and
extracranial Doppler to detect deranged hemodynamics
and B-mode ultrasound to detect stenoses and changes in
cross-sectional diameters in the supine and the upright
positions. He states that two of five characteristics lead to
a diagnosis of CCSVI. The five characteristics are (1) reflux
within the IJVs or vertebral veins, (2) reflux within any of
the deep cerebral veins, (3) no flow in the IJV on activation
of the thoracic pump upon inspiration, (4) failure of
the IJV to increase in diameter in the supine position
compared to the erect position, and (5) any B-mode
abnormality such as septum, stenosis, abnormal valve, etc.
MR Venography and Computed Tomographic
Venography
Others have used cross-sectional venography to
evaluate venous stenosis (Figure 1). The majority of
sites use MR venography, but occasionally, computed
tomographic venography is also used. To evaluate the
dural sinuses and the veins of the neck, two-dimensional
and two-dimensional contrast-enhanced imaging
is used. These cross-sectional studies show a variety
of findings that include venous narrowing and collateral
vessels throughout the neck. Occasionally, narrowing
or occlusions of the dural sinuses are noted,
but for the majority of times, findings are restricted to
the neck. However, there is poor correlation between
the anatomical findings on MR venography and subsequent
catheter venography. Many areas of narrowing
on MR venography are not constant and are not
reproduced during catheter-based studies.
Hemodynamics of Cerebral Venous Drainage Explain
False-Positive Findings on MR Venography
To explain this enigma, one must understand the
hemodynamics of cerebral venous outflow. The brain
has two methods of venous drainage: blood drains
42 I ENDOVASCULAR TODAY I JULY 2010
COVER STORY
Figure 2. Bilateral IJV venography shows opacification of the
vertebral plexus and drainage through the vertebral veins
(arrows).Both IJVs had focal stenoses at the confluens of the
IJV with the subclavian vein.Angioplasty improved but did
not eliminate the stenoses.
JULY 2010 I ENDOVASCULAR TODAY I 43
COVER STORY
In this article, Dr. Salvatore Sclafani presents an introduction
to chronic cerebrospinal venous insufficiency (CCSVI)
and the current understanding of its association with multiple
sclerosis (MS). Much of the initial evidence supporting
this possible relationship has been reported by Dr. Paolo
Zamboni and colleagues. Using duplex ultrasonography and
transcranial Doppler studies, they have documented the frequent
association of abnormal venous hemodynamics with
MS. In one study of 109 MS patients and 177 age- and gender-
matched controls, subjects underwent a blinded transcranial
and extracranial color Doppler sonographic assessment
(TCCS-ECD) of five parameters related to venous outflow
hemodynamics. These five criteria are detailed by Dr.
Sclafani in his review. In controls, only 2.7% of the measurements
were abnormal, whereas in MS patients, 47% of measurements
were anomalous.1
In a study comparing duplex ultrasound with contrast
venography, 40% to 70% of MS patients had evidence of
flow disturbances and/or venous stenosis by TCCS-ECD. Of
these patients, 86% and 91% had obstructive disease of the
azygos or internal jugular veins, respectively, as assessed by
traditional catheter venography.2
Some of the symptoms of MS mimic those observed in
patients with superior vena cava syndrome. Relief of superior
vena cava obstruction with venous angioplasty and stent
placement, if required, provides swift and dramatic resolution
of the symptoms of impaired cognition and fatigue.3 Thus, it
is not surprising that patients with CCSVI associated with MS
also report rapid relief of these nonlocalizing symptoms.
It is well-recognized, however, that many symptoms of MS
fluctuate and are largely subjective. It is possible that in the
initial nonrandomized patient series reported to date, the
improvement in symptoms could reflect a strong placebo
effect. Nonetheless, the biological plausibility linking cerebral
venous congestion to inflammation that is the hallmark of
MS requires serious consideration. Whether the relief of the
venous obstruction will have an impact on the course of the
neurological disease remains to be seen.
Although the initial observations relating CCSVI and MS
are interesting and potentially paradigm-shifting, they now
need rigorous testing. As Dr. Sclafani correctly points out,
there are life-threatening adverse effects that may complicate
endovascular management of CCSVI. A randomized clinical
trial is needed to assess the risks and benefits of endovascular
treatment of this condition. There are many physicians and
others who have endovascular skills who are promoting and
developing centers for treating these patients without regard
for the lack of scientific data to support therapy. Patients
with this disease have frequently suffered for long periods of
time, often without great relief of symptoms and are often
desperate for any alternative that may offer hope.
We remain very concerned about the possibility of misleading
these individuals or exposing them to additional risk, outside
of scientific efforts to get a better understanding of this potentially
exciting therapy. Given the concerns of the neurology
community, it would be unfortunate if the attempts to advance
this field suffer the consequences of premature promotion of a
procedure that could mislead patients, payors, and regulators.
Accordingly, we propose a global initiative to meticulously
document the prevalence of venous anomalies in MS, by
comparison to age- and gender-matched healthy individuals,
as well as those with neurological disease not due to MS. In
part, recent grants from the National MS Society awarded to
seven investigative groups to study CCSVI will help initiate
this effort in the United States and Canada. These observations
may provide a basis for a clinical trial in MS to assess
the long-term safety and efficacy of endovascular procedures
in restoring normal venous hemodynamics, in relieving the
nonlocalizing symptoms secondary to venous obstruction,
and in slowing or halting the inflammatory and demyelinating
processes. In parallel, the development of animal models
will advance our understanding of how CCSVI may influence
or even initiate the pathophysiology of MS.
Michael D. Dake, MD, is Professor, Department of
Cardiothoracic Surgery, Stanford University School of Medicine
in Stanford, California. He has disclosed that he receives
grant/research funding from Cook Medical. Dr. Dake may be
reached at mddake@stanford.edu.
Barry T. Katzen, MD, is Founder and Medical Director of Baptist
Cardiac and Vascular Institute and Clinical Professor of Radiology
at the University of South Florida College of Medicine in Florida.
He has disclosed that he is a member of the scientific advisory
board for W. L. Gore & Associates. Dr. Katzen may be reached at
barryk@baptisthealth.net.
1. Zamboni P, Menegatti E, Galeotti R, et al. The value of cerebral Doppler venous hemodynamics
in the assessment of multiple sclerosis. J Neurol Sci. 2009;282:21-27.
2. Zamboni P, Galeotti R, Menegatti E, et al. Chronic cerebrospinal venous insufficiency
in patients with multiple sclerosis. J Neurol Neurosurg Psychiatry. 2009;80:392-399.
3. Kee ST, Kinoshita L, Razavi MK, et al. Superior vena cava syndrome treatment with catheterdirected
thrombolysis and endovascular stent placement. Radiology. 1998;206:187-193.
COMMENTARY
The Relationship Between CCSVI and MS
BY MICHAEL D. DAKE, MD, AND BARRY T. KATZEN, MD
44 I ENDOVASCULAR TODAY I JULY 2010
COVER STORY
anteriorly through the internal jugular
system in the supine position and posteriorly
through the vertebral system when
erect. In the normal, upright patient, the
jugular vein collapses (narrows) because
there is not enough blood flow through
it to maintain distension. In the supine
position, the normal IJVs distend
because the supine position favors jugular
flow. The same issues apply when
there is increased resistance to jugular
flow. The alternate vertebral venous outflow
system shunts blood away from the
jugular veins. Because pressure is normally
low and only marginally rises with
obstruction, distension of the obstructed
system does not occur.
As a result, many of the narrowings seen in CCSVI
are caused by compression of a collapsed system by
external forces rather than due to stenoses. This may
lead to unnecessary angioplasty. The common areas of
questionably physiological stenosis seen on MR venography
are located at the skull base, adjacent to the
carotid bulb, or where strap muscles exert compression.
VENOGRAPHY AND VENOGRAPHIC
OBSERVATIONS
Venography remains the gold standard for evaluating
the anatomy of the veins draining cerebrospinal blood
flow. It should be emphasized that a reliable assessment
of the azygos system can only be done by using catheter
venography.
Technique
The venographic evaluation is begun by placing a
headhunter catheter in the left femoral vein with the
purpose of excluding May-Thurner syndrome. The
catheter is subsequently placed in the left ascending
lumbar vein to assess the lumbar veins for hypoplasia
and other abnormalities. The left renal vein is then
catheterized to look for abnormalities of the renal vein
tributaries. The purpose of these three studies is to look
for causes of increased blood flow into lumbar veins
that might be compromised by azygos stenosis.
The catheter is then placed in succession into the
AZV and both IJVs. The catheter is positioned in the
AZV at the junction with the hemiazygos vein. Contrast
venography is done twice: first at 3 mL/s for a total volume
of 10 mL to look for reflux, followed by a second,
fuller injection at 8 to 10 mL/s for a total volume of 20
to 30 mL to delineate all the anatomy. The AZV and its
tributaries are imaged to include the chest and
abdomen. Some physicians measure pressures, but I
have not found this to be helpful. Any stenosis is treated,
as will be described later.
The catheter is then withdrawn from the AZV and
advanced sequentially into each IJV. Catheterization of
the IJV may be challenging because funneled narrowing
of stenotic valve leaflets occurs near the origin of the
vessel. Occasionally, an incomplete duplication is present
posterior to the main ostium. This may make
catheterization confusing and difficult. Two contrast
injections are performed: one with a slow injection of
3 mL/s for a total volume of 10 mL and one with a fuller
injection of 8 to 10 mL/s for a total volume of 20 mL.
Film rates of 3 to 6 frames per second are necessary to
get sufficient detail of the valves and to detect ostial
narrowing that may become obscured as contrast
enters the brachiocephalic veins and overlaps the confluens
where stenosis is often located. Any stenoses or
other outflow obstructions are treated at this time.
Diluted contrast abnormalities (50:50 mixture of saline)
is helpful in the IJV evaluation because valve abnormalities
and some webs may be obscured by very dense
contrast media.
Venographic Findings
First, there are numerous collateral veins when outflow
obstructions are present (Figure 2). These veins may be
wildly abnormal and include hypoplasias and early divisions
that reconnect to a larger conduit. The vertebral
veins may be enlarged and can be confusing in their
appearance. The pathology of this disease is a truncal
malformation of the veins that is probably genetically
determined; it is not an inflammatory or postphlebitic
stenosis. Much of the resistance to blood flow is related
to abnormal valve development. Fused, reversed, thick-
Figure 3. IVUS in resting state at the level of the stenosis of the central cervical
IJV (A) shows narrowing of the IJV, which is collapsed around the catheter.
The thoracic pump was activated, and flow into the IJV improved (B). IVUS
shows distension; therefore, angioplasty was not performed.
A B
ened, and other abnormally located and developed
valves cause resistance to flow. Atresias, hypoplasias,
duplications, webs, septums, and kinks also occur. Most
of these abnormalities are located centrally near the confluens.
Challenges occur when more peripheral narrowings
are present, which may be physiological.
INTRAVASCULAR ULTRASOUND
Diagnosis by venography can also be subtle. I have
found that intravascular ultrasound (IVUS) is very helpful
in identifying some of these abnormalities, as well as
in differentiating the narrowed veins caused by inadequate
volume from the narrowed veins resulting from
stenosis (Figure 3). IVUS enables a real-time assessment
of the distensibility of collapsed veins. Simple maneuvers,
such as slow sustained inspiration by activating the thoracic
pump, allow improved distension of the vein and
confirms that the narrowing is not fixed. Further, IVUS
allows detection of improper or incomplete valve movement.
Finally, incomplete duplications of the jugular vein
may not be detected without IVUS.
TREATMENT OPTIONS
Treatment of these abnormalities is still in development,
and the ideal methodologies for treatment have
not yet been established. Essentially, only one team has
published an outcomes study.1 Results were encouraging
but showed limitations. Angioplasty with high-pressure
balloons of diameters 4 mm greater than nominal diameters
in 2- to 4-cm lengths is performed with venographic
control. Inflations to maximum pressures for 30 to 60
seconds were used several times. Some of these obstructions
are very resistant, and Cutting balloons (Boston
Scientific Corporation, Natick, MA) are used with
increasing frequency. Dr. Sinan Tariq, the leader of the
Kuwaiti national trial, has been using valvulotomy
devices with some success (personal communication,
April 2010). Stenting is performed by some investigators
for resistant narrowings. However, no reports have been
published about their outcomes. I have not used stents
in any cases yet.
AFTERCARE AND FOLLOW-UP
The procedure is performed under local anesthesia
in an ambulatory setting. Most patients are kept in
the hospital for 1 or 2 hours and then discharged.
Most physicians treat patients with clopidogrel or
short-term anticoagulation with heparins, enoxaparin,
or fondaparinux. Clinical and imaging follow-up varies
among investigators. Assessment tools are predominantly
clinical and include an expanded disability status
score (EDSS), which is a neurological assessment of
EVToday.com
EVToday.com
EVToday.com
EVToday.com
EVToday.com
EVToday.com
EVToday.com
EVToday.com
EVToday.com
EVToday.com
EVToday.com
EVToday.com
EVToday.com
EVToday.com
EVToday.com
visit www.evtoday.com for the current issue
and complete archives
46 I ENDOVASCULAR TODAY I JULY 2010
COVER STORY
eight areas of the central nervous system, along with
certain measures of disability and restriction in daily
life. These scores are added up to give a rating on the
EDSS, which ranges from 0 (normal) to 10 (death due to
MS). From step 4 onward, the ability to walk becomes
the key factor in determining the EDSS score.
OUTCOMES
It must be emphasized that only one team has published
any clinical results, and although promising,
they were not overwhelming. Zamboni’s group
described an open-label experience of patients with
MS who were allowed to stay on disease-modifying
drugs for their MS. The results were encouraging, with
statistically significant improvements in cognition and
motor function and reduced exacerbation rates, and
MRI confirmed diminished new brain lesion development.
The patients who have shown the most positive
results are those in the relapsing-remitting phase of
the disease. Patients with primary progressive MS, for
whom there is no proven treatment, had the least positive
effects.
However, the dilatations are not always durable,
with approximately half of the patients developing
restenosis between 8 to 14 months. It is interesting
that all patients who suffered from an exacerbation of
symptoms had a restenosis and that no patients who
had durable angioplasty experienced restenosis.
Overall, the procedure is well-tolerated, and patients
do not require sedation. The complications reported
in Zamboni’s trial were minimal. I have had one early
thrombosis that did not respond to thrombolytics and
one case of atrial fibrillation that I thought might have
been a response to treatment that modified autonomic
neural transmission, but resolved within 12 hours.
Those interventionists who have used stents have not
yet reported outcomes in the literature.
Dr. Zamboni cautions against stents because they
are not designed for placement at the confluens of the
jugular vein with the subclavian vein where the jugular
vein widens. Improved flow is shown to significantly
increase the diameter of these veins. He worried about
migration in his article, and indeed, one of the early
patients treated with stenting by another interventionist
is reported in the lay press to have required open
heart surgery for stent retrieval.
CAVEATS
CCSVI has not been well-accepted by the neurological
community. Many leaders strongly oppose this
treatment on the grounds that no randomized
prospective trials have taken place, and they describe

2010-07-19T16:05:00.001-04:00

Christopher's awesome letter to Ms. Aprile Royal of the Canadian MS Society:

Today at 2:28pm

July 19 2010

Mrs. Aprile Royal
Assistant Vice President
Medical Information & Education
Multiple Sclerosis Society of Canada
Toronto, Ontario

Mrs. Royal,

I am writing this letter to address some concerns in the position that you are putting forth to represent a Society that exists because I am sick. I was diagnosed with Multiple Sclerosis in 1992.

You recently were quoted by the Barrie Examiner in an interview that you did with them on the topic of Chronic Cerebrospinal Venous Insufficiency, or CCSVI for short. Some of the statements that you made only proved to me as an MS patient that the MS Society of Canada no longer represents me or the many ten of thousands of Canadians who have been diagnosed with Multiple Sclerosis.

To your benefit, I can honestly say that some of the statements that you made are true. You are quoted as saying, “It`s not so simple with one single cause.” It is true that there may be more than one single cause and that MS is a complicated, multi-facetted condition that has stumped the medical community and researchers since it was defined in the medical literature by Charcot, in 1868. It is also true that CCSVI has not yet been established as the ultimate cause for Multiple Sclerosis, and more research is needed to make the links and solidify the cause and effect relationship between venous flow problems and Multiple Sclerosis, if indeed these links exist – which I strongly suspect that they do.

You are well aware that the Multiple Sclerosis Society of Canada does not make decisions at the level of government as to which procedures are offered to the Canadian public, and which procedures are not. However, our government, policy makers and health officials, look to your organisation for the lead on these issues – therefore your power to influence either for or against CCSVI research and venoplasty treatment for MS patients is real and concrete. No decisions will be made until the MS Society of Canada gives the go ahead to leaders, politicians and medical experts or until your organisation has lost so much credibility that it will no longer take the lead in the research.

However, Dr. Zamboni himself, made a plea to the Canadian government to offer this treatment on a compassion basis, especially to those for whom the immunomodulatory therapies do not work, or who have progressive forms of the disease and therefore are not eligible to take these therapies. Many researchers and medical experts in Canada have also tried to influence the decision-making process and encourage further research at the same time as offering the actual treatment for CCSVI in the form of angioplasty, an effective, safe way to treat venous flow problems.

Let me cite the case of Barb Farrell, a woman in the Royal Victoria Hospital in Barrie, Ontario. As you are well aware of Barb`s case, it is appalling to me that this treatment was not offered to this woman, who would have obviously died in a very short time if she had not had the angioplasty to unblock the restricted blood flow in her internal jugular veins. A private benefactor paid not only for Barb`s procedure to be performed but for an entire medical team to accompany her on a private flight to and from the American clinic where the procedure was performed. If the MS Society`s position on CCSVI were not so utterly cautious, then Barb would have been able to have this procedure performed in a Canadian hospital. I do not even want to think of the outrage of the MS Community if Barb`s case had been ignored.

What more proof do you need to see the links ? Any member of the Canadian population, tax payers, and thousands of people that once donated to your society, can see the problems with the foot-dragging by the MS Society. You, your Society, and all that you represent, would have let this poor woman die, for the sake of not allowing a perfectly safe procedure that has been proven time and time again to improve the quality of life of patients with MS.

We have cases of medical doctors who have gone overseas for treatment. Dr. Gianfranco Campalani, a heart-surgeon in Ireland, had the treatment twice. I personally met a Canadian doctor who had primary progressive MS in Poland when I was there in May to have an angioplasty myself. A very close personal friend of mine knows a neurologist whose daughter has MS, and sought the procedure. Yet this person must remain under a cloak of silence for fear of a backlash from colleagues. Hundreds, if not thousands of Canadians, are seeking treatment outside the confines of double-blinded clinical trials. Many primary care physicians are eye-witnesses to the improved quality of life that can be offered to those who seek treatment overseas.

I have personally met more than a dozen people who have had the angioplasty, and have spoken on the phone with a total of at least 25-30 people who have travelled to Poland, Bulgaria, India, Germany and France to seek the treatment…..and they are all experiencing improvements. Many of these people, myself included, have progressive forms of the disease, and improvement was not something that was part of our vocabulary – until our problems with venous flow issues were dealt with.

Further on in the interview, you proceed to give some historical background on MS, and liken it to the electrical wiring in a house that is malfunctioning. I find it interesting that the list of symptoms given, namely “a loss of balance, impaired speech, vision problems, extreme fatigue, a cognition fog and physical weakness” are symptoms that are either diminishing or disappearing completely for hundreds of people who have had angioplasty. I`m not a medical expert, but it makes sense to me that if I have a venous flow problem or an inverted valve causing reflux of blood up into my brain, that I would see some improvements if the problem were fixed. Basically, as an MS Community, we fail to see why you fail to see the links that are so obvious. Anyone in the general population can see it, why can`t you ? Your resistance to the research and accusations of “placebo effect” are paving the highway to the downfall of your great organisation.

Furthermore, and one point that I have failed to see for quite some time : What makes you think you (or any other employee of the MS society, neurologist, etc.) are a vascular specialist, as CCSVI is a venous flow problem ? Why would I trust neurologists to take the lead in the research into a vascular issue any more than I would trust an endocrinologist to perform orthopaedic surgery ? In the four Canadian studies funded by the recent requests for CCSVI grants – Dr. Brenda Banwell, Dr. Fiona Evanne, Dr. Anthony Traboulsee and Dr. Katherine Know are all neurologists by training. Dr. Carlos Torres is a neuroradiologist. Why would we leave the research into a vascular condition in the hands of neurologists ? I know of no other area of research where we would allow this. Canada is already falling way behind in the research, as they try to protect organisations that I will not name here.

You try to put on an air of helping people, and funding research, yet you naysay anything that remotely proves Dr. Zamboni`s hypothesis of CCSVI. Your organisation has been at the forefront of gross misinformation provided to the public about CCSVI as well as the leaders in modern-day witch hunts. Let me give you a few examples:

1. The Buffalo Study – I have heard some of your top neurologists and members of your medical advisory board quote on many occasions the results of phase 1 of the Buffalo Study. Many in the medical field have quoted this study as “disproving” the theory of CCSVI, saying that 26% of the general population has narrowed veins as well. This is ludicrous, as Dr. Zadinov himself, in a presentation to the American neurological society, talked about these statistics, and the problems with this study. So on one hand, neurologists are all over the map when Zamboni himself says that more study needs to be done – which he never denied himself – but on the other hand, when it comes time to discredit Zamboni, your Society does so, only to put into question the true competency of their specialists. Dr. Zadinov himself admitted that this 26% of the population actually had familial links to the MS population being tested. Why would your “specialists” confidently quote statistics from a faulty study ?

2. The one case where a stent migrated. I have heard this argument ad nauseam about how dangerous this procedure is. It is true that a patient of Dr. Dake in Southern California died due to a reaction to a pharmaceutical product given post angioplasty. Even this woman`s family has written and stated that her death was not caused by the procedure, but by a pharmaceutical product. In the case of the migrating stent, it is true that the person in question needed further surgical intervention, and this is truly unfortunate. Yet how many surgeries every day in Canada go awry for other conditions, yet this is considered by the medical community the normal course of things ? In light of frequent new deaths from many of the pharmaceuticals used on MS patients, how can you even mention one incident in the hundreds of procedures performed ? If you truly want to continue touting yourselves as the providers of credible and reliable information, as you do on your national website in several places, then may I suggest that you keep abreast of the latest developments.

3. The BC witch trials. A few months back I remember hearing about a case of a doctor who performed angioplasty on a couple of patients in British Columbia. Unfortunately, these patients had MS, because if they had had any other venous condition and did not yet have a diagnosis of MS, they would have been provided medical treatment in a Canadian hospital. As you well know, both of the patients that had the treatment, are doing significantly better. Yet, a top neurologist, might I say one affiliated with the MS Society, decided to go on a modern-day witch hunt to burn this doctor at the stake. So, here we have a case of someone actually doing better, and yet the doctor that made him better had sanctions imposed on him. This is not the only case of doctors and clinics being shut down, as there are many other examples of this just south of the border, but I think the point has been made clearly enough.

All of these cases, and more, make me feel like I`m in the middle of the most amazing John Grisham novel that I`ve ever read. I can`t wait to live the ending.

Further in the course of your interview, you go on to state something to the effect that one of the concerns is that Zamboni didn`t use the EDSS scale in his trial. And this is a problem because ???? These misplaced arguments are scattered throughout the useless drabble and the confusing discourse that we are hearing time and time again from members of the MS Society when they don`t know what else to say. Please, sit down and come up with some stronger arguments than that. Most family doctors who deal with MS patients on a daily basis don`t even know where their patients are rated on the EDSS scale. That you would even mention that goes to show how little you have to say about the true issues at hand.

Another point that you raise is that of stenting. As a member of the medical profession, with the title of RN and an MEd, I can not fathom why you have not read the literature about vascular stenting, and the number of conditions in which it is readily and effectively used. Interventional radiologists and vascular surgeons stent all kinds of veins when there is a chance of restenosis. This information is readily available, and is accessible in any good medical textbook on the subject. It is in no way controversial for other conditions that affect venous flow.

Let`s do a little bit of cross curricular work, and touch on the area of mathematics. You mention that in Zamboni`s second study, there is a very high rate of re-stenosis, thus requiring another angioplasty after an average of nine months. Well, we know from Dr. Sandy MacDonald`s presentation to the Parliamentary Sub-Committee on Neurological Disease that the cost of an angioplasty in Canada is about $ 1,500. If I have an angioplasty every nine months, as this would be the worst case scenario, it would cost the medical system about $ 6,000 over a 3 year period. The cost of MS medications for the same period would easily surpass $ 60,000. The cost effectiveness of treatment for CCSVI is a much greater savings to the Canadian public and to private medical plans nation-wide.

I can hear your objection, “But we are not yet sure that the links are there between CCSVI and MS, therefore we need to continue taking the medications.” To that I will answer with a quote from Dr. Gianfranco Campalani, the Irish Heart Surgeon who has had two angioplasties: “I always refused to take any medication whatsoever because I don’t believe you should take drugs to treat something the doctors don’t know the origin of.” So even if there is no causal link between CCSVI and MS, we still have no further insight into the actual origin of the disease. Even all of the drug companies state something to the effect that “the origin of MS is unknown”. If the origin is unknown, how then can we treat it ? Yet you so confidently promote the use of pharmaceuticals from various companies as if you actually knew something about the nature of MS. All of the pharmaceutical companies have a disclaimer to the effect that the precise way that they act on MS is unknown. It is strange that you are so sure that MS is not a venous flow problem, and it is “an immune mediated demylenating disease of the central nervous system”. (Direct quote from your training session on April 2, 2008 in Toronto). Your beliefs on the origins of MS have no more credibility than do the initial beliefs that CCSVI is possibily at the origin of the disease. Yet you know from the historical writings of Dr. Jock T. Murray that MS was always thought to have a venous link – which is precisely why in the 1930s all MS patients were given blood thinners.

Anyawy, I do believe that I have addressed the most important issues raised during your recent interview with the Barrie Examiner.

I would love to discuss these issues with you over the phone, and would be more than willing to do so. I’ll send you my private e-mail, and phone number, and trust that you will get back to me at a time that is convenient for both of us.

Warmest regards,

Christopher

2010-07-16T13:53:00.000-04:00

in his own words

A treatment for multiple sclerosis that upsets Big Pharma

By Philip Lillies

| July 16, 2010

In a breakthrough in the treatment of multiple sclerosis, last summer Dr. Paolo Zamboni, a vascular surgeon from the University of Ferrara in Italy, made public the results of findings from his study of 65 MS patients.

Dr. Zamboni and colleagues investigated CCSVI -- Chronic Cerebrospinal Venous Insufficiency -- a condition characterized by blockages in the veins causing problems in the blood flow drainage from the brain and/or spinal cord of sufferers. This condition has been shown to contribute in a significant way to the many symptoms of multiple sclerosis. It can be relieved by angioplasty, which is a simple surgical treatment that removes the blockages.

Despite the results of Zamboni's and other significant studies, my research into the media's coverage of angioplasty as a treatment for multiple sclerosis reveals that the mainstream media, with some notable exceptions (examples of which are here, here and here) , is generally presenting arguments that are favourable to maintaining the pharmaceuticals' monopoly on treatment options (examples here, here and here). Overall, the media has failed to do its journalistic duty to research all sides of the issue. They have failed to take the numerous testimonials and positive research results seriously and are failing to take into account the costs and benefits of angioplasty versus those of MS drugs that in the end offer little to no long-term benefits.

Pharmaceuticals provide millions of dollars every year to MS Societies in the U.S. and Canada, and the MS Societies in turn advertise the drugs developed by the pharmaceuticals and encourage their members to have full confidence in these drugs, even when alternative treatments, such as diet and angioplasty, might be more effective in alleviating the symptoms of the disease.

In fact, the MS Society of Canada claims to receive less than two per cent of its funding in pharmaceutical grants -- see Myth #2 in the link above. Additional direct assistance to the MS Societies of Canada and the US would be in the form of free education materials, speakers, and expertise, as well as paid advertising in MS Society newsletters; however, total assistance would certainly be a relatively small percentage of total budget, hundreds of thousands in Canada and millions in the U.S., but direct assistance is perhaps not the main source of influence on MS Society decision making.

Eminent neurologists and MS research foundations also receive extensive funding from pharmaceuticals, as revealed in a full disclosure article critical of CCSVI treatment that appeared in the Annals of Neurology (Khan et al, January 2010, Annals of Neurology ).

In addition to funding their research, the pharmaceutical industry also influences through leaders -- see below -- through an educational organization known as the "Consortium of Multiple Sclerosis Centers." Page two of the report explicitly states that the CMSC is a partner with the pharmaceutical industry, other non-profit advocacy and services organizations (which would include MS Societies), and MS professional organizations.

Seven of the 11 authors of the report (including the first four, senior authors) disclosed receiving significant financial support from pharmaceuticals that produce drugs for MS. In addition, the pharmaceuticals are key players in an organization known as the "Consortium of Multiple Sclerosis Centers" whose main function is to influence MS thought leaders such as neurologists, researchers, and directors of MS Societies.

Advertising

The medical establishment, in general, is hesitant to embrace a finding that would shift some of the burden of treatment for MS from neurologists to interventional radiologists, vascular surgeons, and experts in blood flow and imaging. One can only speculate about why this shift is so difficult for them.

One factor might be professional pride, but a more important factor might be the re-training that is necessary, both for doctors and technicians. As it stands now technicians lack the training to detect the blockages, even when they have the latest Doppler ultrasound equipment; and surgeons are flabbergasted at the thought of performing interventions on veins, which unlike arteries, are pliable and difficult to manipulate.

The upfront investment required to support the required changes, which would affect personnel and equipment, is also an impediment to recognition of CCSVI treatment by provincial health plans. So despite the enthusiastic support of both the Liberal and NDP health critics at the federal level, without federal financial support, changes at the provincial level may be slow in coming. In fact, the upfront cost would quickly be recovered as use of MS drugs became less common.

It is not surprising, then, that the mainstream media, when it follows the lead of the medical establishment and the MS Society, presents a biased picture that does not contribute to our understanding of the costs and benefits of CCSVI treatment. MS patients demanding the right to angioplasty for CCSVI are often depicted as a mere advocacy group attempting to badger the scientific community because of their hope for a miracle cure. The hundreds of positive reports and internet videos depicting MS patients who have benefited substantially from the treatment are dismissed as mere testimonials with no scientific merit.

Then there are the weasel words that are used to depict MS patients as emotional, subject to the whims of an unpredictable disease characterized by attacks and remissions, which renders them susceptible to quackery, psychological boosterism, and the much touted "placebo effect." Angioplasty itself is often referred to as "the liberation treatment," which suggests the wild and radical aims of those advocating for it. Research directors working on projects funded by pharmaceuticals and spokespersons from the MS Society are frequently quoted speaking out against the treatment without regard for the inherent bias such spokespersons would be expected to have.

The Canadian Medical Association Journal recently featured an editorial in which it argued that the medical establishment was on the side of the plain folk, guarding them against being overwhelmed by unproven therapies that had not been evaluated for safety and effectiveness, while preventing public monies from being diverted for use in untested procedures.

The truth is that despite concerted efforts to depict it otherwise, the issue here is not one of science but one of ethics. There is already ample evidence that the treatment has a high probability of being beneficial to a large number of MS patients. Detractors, however, raise the question of whether the costs outweigh the benefits. There is, in fact, ample evidence for those willing to take the time to look for it that this question has been amply answered in the positive (see here and here). Angioplasty, which is a medical procedure of long standing, can easily be adapted to treatment of CCSVI, and the treatment works. Why it works is still undetermined, but no one is arguing that it works by some mysterious energy or élan vital. There are several promising leads (such as build up of iron within the brain) that can be the subject of future scientific investigation. Patients themselves are amassing the evidence of success on the electronic bulletin boards of websites like "This Is MS." The videos are very moving, and it is hard to dismiss them as anything but overwhelming evidence for the effectiveness of the treatment.

Detractors like to point out that the benefits of the treatment cannot be considered long-term because veins are subject to collapse after stretching. However, even if the veins collapsed again and needed to be re-stretched annually, this would still be more cost effective than most MS drugs, which cost up to $30,000 per year and marginally slow the course of the disease at best.

In fact, recent studies have suggested that the so-called CRAB drugs have no statistically significant long-term effects. CRAB drugs are Copaxone, Rebif, Avonex, and Betaseron, the standard drugs used to treat MS. They are administered by injection and cost up to $30,000 per year. Because we don't have a pharmacare program in Canada, the cost of these drugs can be a considerable burden to those lucky enough to be able to afford them at all.

In addition, using vein stents (no this is not a new technology either) could eliminate the need for additional treatments.

CCSVI itself is characterized in the mainstream media as unproven and controversial. Maybe, after all, it is a fairly normal condition. However, CCSVI is not controversial. It has been unanimously recognized by an expert international body as an undesirable congenital malformation. In 2009, at a conference on venous malformations (UIP09), experts from 47 countries voted unanimously in favour of officially including the stenosing lesions found in CCSVI in the phlebology consensus document and guidelines.

How dangerous is the treatment? As of today, the treatment has been applied over 1,000 times with reports of only one death following improper placement of a stent. Many MS patients, whose lives are in ruins, are willing to take the risk. And the risk can be compared with the risk of taking MS drugs, which are very unpleasant and hardly risk free. For example, a common drug for MS causes liver damage. Another recent study suggests that there are two types of MS -- similar symptoms but different diseases -- and if you treat one of the types of MS with one of the commonly prescribed CRAB drugs you may actually make the disease worse.

The medical establishment is demanding double-blind testing on the Zamboni method, which works well on drugs but is almost impossible to do with a surgical intervention. There is, of course, the questionable ethics of not correcting obvious problems once the surgical intervention has begun. In addition, given that the patients are not under general anaesthesia during the procedure, and in light of the fact that most doctors are probably lousy actors, the blind is going to be hard to maintain.

The University of Buffalo has received funding to try a double-blind test on a small sample, but any results are almost certain to be contested. The small sample size itself creates a problem because of the danger of sample bias, which is all the more likely as MS, unlike say breast cancer, is such a multi-faceted disease. Ideally you would want patients that were similar in background, venal malformations, and symptoms, except some would be given the treatment and some not. Unfortunately, this similitude is going to be impossible to achieve.

Double-blind testing does make sense for drugs, where the blind is relatively easy to maintain and ethics may be less of an issue when the benefits of the drug really are uncertain. It would seem that more usual for surgical interventions is to try it if it seems to work, and evaluate based on tracking of results over multiple treatments.

Perhaps this is what Dr. Zamboni means when he says that every Canadian should be given the treatment but also that the treatment should be given in a context of scientific study. This try-and-track approach was used with the original angioplasty procedures that were performed on arteries in the 70s, for example. It has also been used with radical mastectomy for breast cancer and caesarean sections, both of which have lately been given a serious re-evaluation. One notable procedure that the try-and-track approach was used on was scoping of knees. Now, after over a million trials, it would seem that scoping is being rejected as a valuable treatment.

Blind testing of drugs seems to suffer from a problem that is the contrary of the try-and-track approach. Once a drug is approved it may readily be prescribed for conditions that don't meet the test specifications. Notably, it may also continue to be prescribed even when tracking suggests that it may be dangerous under certain conditions. This appears to be the case with one of the commonly prescribed CRAB drugs, which as mentioned before under certain conditions may actually make the disease worse.

There is also a danger that the medical establishment will dismiss the benefits by setting the bar too high. Keeping in mind that the only long-term benefit of the CRAB drugs appears to be modulation of the attacks (so that the disease progresses just as quickly but with less serious attacks and remissions), we should not expect immediate and obvious benefits from every treatment. Benefits may, after all, be both restorative and preventive. Those in the early stages of the disease might not perceive any benefits even though unblocking their veins might prevent future deterioration. Those in the middle stages of the disease are most likely to notice perceptible benefits. Those in the final stages of the disease, after their muscles have atrophied making recovery impossible, might not notice any benefits, but at least they would benefit from prevention of further deterioration.

Some patients have complained that perceived benefits are fleeting, lasting merely months. Indeed, if their veins collapse again they may need to travel once again to Europe to have the treatment redone. Unfortunately, travelling abroad can easily cost $15,000, so can't be repeated too frequently. The solution is, of course, to make the treatment locally available, then it would cost only a few thousand dollars at most. Even if this procedure needed to be repeated annually, it would be much cheaper than treatment with MS drugs, which costs tens of thousands of dollars annually.

The MS Societies of Canada and the US have tried to accommodate pressure from the medical establishment while appeasing patients by providing $2.4 million of support to seven small basic research projects over the next few years. However, the paltry amount of funding and the focus on basic research has simply further raised the ire of the MS community. Not one of the projects is focused on improving intervention techniques, and some of them, such as testing for similar conditions in the brains of Alzheimer's patients, would appear to be aimed primarily at fortifying the arguments of detractors. In addition, some of the projects appear to have been chosen because the researchers have not in the past worked with Dr. Zamboni, which might seem logical, except that part of Dr. Zamboni's contribution was precisely in the area of techniques for the detection of venal blockages.

At this point, based on the evidence of thousands of case histories and several scientific studies, the science points to a cost/benefit trade off that is wildly on the positive for providing the treatment. The benefits would accrue not only to MS patients but to society as a whole which needs otherwise to pay for their MS drugs and accommodate their incapacities. The research at this point needs to focus on refining the technique. And despite how the mainstream media tries to depict it, pressure from advocacy groups is being correctly aimed, not at short-circuiting the scientific method, but at overcoming the intransigence of the medical establishment.

Philip Lillies is a community and labour activist, secretary to the Moncton chapter of the Council of Canadians, secretary to the Moncton District Labour Council, and vice-president for the Public Service Alliance of Canada to the New Brunswick Federation of Labour. He lives in Moncton, New Brunswick, with his wife, Anne, who is afflicted with multiple sclerosis and is on a waiting list for angioplasty at a treatment centre in New York State.

More proof of CCSVI and MS connection

2010-06-22T11:37:00.000-04:00

Endovascular Treatment for Chronic Cerebrospinal Venous Insufficiency
in Multiple Sclerosis: A Longitudinal, Magnetic Resonance Imaging,
Blinded Pilot Study
P. Zamboni,a R. Galeotti,a B. Weinstock-Guttman,b G. Cutter,c
E. Menegatti,a A. M. Malagoni,a I. Bartolomei,d J. L. Cox,b F. Salvi,d and
R. Zivadinov,b Ferrara and Bologna, Italy; Buffalo, NY; and Birmingham,
Ala
From the University of Ferrara, Ferraraa; NY State University in Buffalo,
Buffalob; University of Alabama, Birminghamc; and Bellaria Neurosciences.d
Background: Chronic cerebrospinal venous insufficiency (CCSVI) is
characterized by stenoses of the internal jugular veins or the azygous vein, or
both. It has been recently reported that this condition contributes to severe
dis-regulation of the physiologic mechanisms of cerebral venous outflow in
patients with multiple sclerosis (MS). Endovascular treatment (EVT) was
demonstrated to be a safe and effective CCSVI treatment, but only in an
unblinded clinical evaluation.
Methods: We designed an open-label, magnetic resonance imaging
(MRI)-blinded, two-center, randomized, EVT intervention parallel-group,
12-month study (EVTMS) after an initial cross-sectional (CVIMS) study.
CIVMS enrolled 16 relapsing-remitting MS patients (8 from Ferrara, Italy
and 8 from Buffalo, NY). All 16 patients who completed the CVIMS study
and presented severe Doppler venous hemodynamic (VH) anomalies accepted
participation in the EVT intervention prospective study (EVTMS).
Half of the cohort, the early intervention group (4 from Buffalo and 4 from
Italy), was randomly selected to have the EVT procedure in Italy at 3
months, whereas 6 patients comprised the delayed control intervention
group (late group) at 6 months; 2 patients were followed-up without any
EVT. The EVT procedure consists of selective venography complemented
by balloon dilatation when significant stenoses are detected. All patients will
be prospectively evaluated at 3, 6, 9, and 12 months with ultrasound
imaging, MRI, and clinical examinations.
Results: For the CVIMS cross-sectional study, mean age at baseline
was 36.1 7.3 years, mean disease duration was 7.5 1.9 years, and median
Expanded Disability Status Scale (EDSS) was 2.5. The mean number of
gadolinium-active lesions at baseline was 0.38 1.5. The mean number of
T2 lesions was 27.1 10.5. Median of VH of CCSVI was 4 (range, 2-5).
The six MS patients investigated and none of the HCs met the VH criteria
for CCSVI (P .0001). MS patients showed significantly lower net cerebrospinal
fluid flow compared with the HC (P 0.038), which was
associated with the number of anomalous VH criteria present (r 0.79, P
.001; Fig, A) and confirmed by the strong relationship with the venous
hemodynamic insufficiency severity score (r 0.77, P .0007). Moreover,
increases in the number of anomalous VH criteria present were negatively
associated with lower whole brain volume (Spearman R –0.5; P 0.05;
Fig B). The 1-year blinded EVTMS longitudinal study will be concluded
next October and results analysis completed within the Fall.
Conclusions: CCSVI is associated with abnormal cerebrospinal fluid
flow dynamics and decreased brain volume. Finally, the EVTMS study
should provide valuable data on preliminary efficacy of EVT for CCSVI
associated with MS.

2010-06-21T17:22:00.000-04:00

Website of the Telegraph Media Group with breaking news, sport, business, latest UK and world news. Content from the Daily Telegraph and Sunday Telegraph newspapers and video from Telegraph TV.

Enhanced by Google

NHS 'has wasted millions on MS drugs which did nothing to help patients'

The NHS has wasted millions of pounds on MS drugs which did nothing to help patients, according to experts.

By Kate Devlin, Medical Correspondent
Published: 7:30AM BST 04 Jun 2010

They called for a Government-backed scheme to provide the drugs to be scrapped and called for a public inquiry.

In total at least £250 million could have been saved if a review had been carried out on the “costly failure” after its first two years, they warn.

This money could have been used to help other health service patients, including those with multiple sclerosis.

Charities backed the call for the scheme to be abandoned.

Set up in 2004 it was intended to allow expensive MS drugs on the NHS.

A key feature of its design was that the price of the drugs would be cut if they proved ineffective.

However, there has been no price reduction over the past six years, despite signs that the drugs were not working.

Recent research results show that patients actually did worse on the drugs than if they were given a placebo.

Prof George Ebers, from Oxford University, one of a number of MS experts who have written articles in the British Medical Journal (BMJ) criticising the project, said: “The scheme may have been well intentioned, but perhaps the public interest would be served by an independent inquiry.”

More than 100,000 people suffer from the devastating disease in Britain.

Patients experience difficulty walking or speaking and there is currently no known cure.

MS itself is caused by the destruction of myelin, a fatty protective sheath surrounding the body's central nervous system.

The MS society backed calls for the scheme to be abandoned.

Simon Gillespie, the charity’s chief executive, said that while it had given many patients people access to drugs it was “stuck in the past and has failed to take account of the most up to date evidence and practices.”

He added: “We are calling on the new government to work to ensure that people with MS across the UK have equity of access to the right drug, at the right time in line with current evidence.

“This cannot be achieved through the current scheme."

The four drugs involved Avonex, Betaferon, Copaxone and Rebif, cost around £8,000 per patient per year.

In 2002 they were rejected for use on the NHS by the National Institute for Health and Clinical Excellence (Nice), the Government’s drugs rationing body, because they were too expensive.

However, the following year the Government and the pharmaceutical companies involved agreed to start a “risk sharing” scheme, which saw an initial reduction in the price with the promise of more to come if the drugs did not work very well.

Around 10,000 patients in Britain are thought to have received the drugs thanks to the scheme.

A Department of Health spokesman said: "The risk sharing scheme has brought many benefits to MS patients including better access to drugs, a stronger network of MS specialists including specialist nurses and a better platform for MS research.

“We continue to monitor the progress of the scheme to ensure best value for money.”

2010-06-19T14:36:00.000-04:00

BRIBERY IN MEDICINE

This is a 4-part story

ON HIS OWN, Don has determined that virtually every medical scientist in America is on the take one way or another, mostly for research funds. Almost all academic institutions are intentionally teaching their students lies about stem cells, straight from the embryonic playbook. “There is no way that we at RSCI can be right about the embryonic hoax time after time and these crooks don’t know they are lying.” Why does RSCI care so much? Because these are the murderers who would rather you die from a disease they will never be permitted to cure, than allow Repair (adult) Stem Cells to help you!

There are more books out today on medical corruption than any other subject in medicine. So let’s take a look at the entire picture---and we’ll even put the occasional book title in bold italics.

HOW CORRUPT IS THE FDA?

By far, one of the most disconcerting bribery-influenced systems surrounds the FDA and the USDA, two government agencies that are supposed to protect the American public. The FDA has been repeatedly linked to bribery, and this corruption is public knowledge, thanks to the 1989 generic drug scandals.** Ironically, it was a pharmaceutical company, Mylan, that exposed the pharmaceutical industry's influence on the drug approval process.

After suspecting corruption in the fast approval of some pharmaceuticals and not others, Mylan hired private detectives who "caught FDA agents red-handed taking bribes in exchange for expediting drug approval," explains Kenny Ausubel in When Healing Becomes a Crime. This resulted in the conviction of four FDA employees and, most significantly, loss of public trust.

Unfortunately, health care corruption in this country doesn't end with the FDA; it has infiltrated the whole system. Drug companies regularly use trips, dinners, cash and free drugs to "persuade" doctors to prescribe new and expensive pharmaceuticals, according to many sources. These bribery expenses pay for themselves many times over, as the most popular drug may not be necessarily the most effective or the one with the least number of side effects, but rather the one that has been promoted and advertised the most. In other words, the majority of American doctors care not a whit about their patients’ health compared to their commissions!

HOW CORRUPT IS BIG PHARMA?

Now, of course, the pharmaceutical companies disguise their bribes under the altruistic term "gifts," but Natural Alternatives author Michael T. Murray finds the term suspect, asking poignantly, "If the drug company didn't expect the gift to influence the doctor's decision, why would it give the gift?" He goes on to clarify, "A gift implies that there are no strings attached." As much as they would not like to admit it to others, or especially to themselves, doctors know that these "gifts" are linked to an ulterior motive, according to Dr. Jerome P. Kassirer in his book, On the Take. In other words, you may not always be able to trust your doctor to make an objective decision about your care.

AND THE RESULTS OF BRIBERY ARE DEATH, PERMANENT DAMAGE, AND FAILURE TO CURE:

What does this mean for you as the consumer? Plenty. Though bribery is harmful anywhere, the use of bribery in the health care system is especially dangerous, making it more important than ever for you to take an active, informed role in your health care. Yes, bribery is prevalent in modern society, but it doesn't have to control your life.

NEXT ISSUE The experts speak on bribery:

**EDITOR’S NOTE:

Generic drug bribery takes a new form in the 21^st century, stealing from you and making many drug companies richer!

When a patent runs out, the “law” says anyone may manufacture and sell the drug, and the price then drops significantly. But the crooks who keep you in their overpriced medical prison have an illegal way to keep the price up so they can keep robbing you beyond 20 years. They go to the generic companies and offer them more money than they can make legitimately to not make the drug! So it goes generic, but the price stays up at 300%, 400% 500% of the legitimate price, you get robbed, and all the crooked drug companies get even richer as you get sicker and poorer.

THE FDA COOPERATES IN THIS SCAM BY PRETENDING TO GO AFTER THE CROOKS BUT THEY NEVER DO. It’s still going on as you read this article.

Keep your sense of humor

2010-06-19T13:53:00.000-04:00

1. My husband and I divorced over religious differences. He thought he was God and I didn't.
2. I don't suffer from insanity; I enjoy every minute of it.
3. Some people are alive only because it's illegal to kill them.
4. I used to have a handle on life, but it broke.
5. Don't take life too seriously; No one gets out alive.
6. You're just jealous because the voices only talk to me.
7.. Beauty is in the eye of the beer holder.
8.. Earth is the insane asylum for the universe.
9.. I'm not a complete idiot -- Some parts are just missing.
10..Out of my mind. Back in five minutes.
11..NyQuil, the stuffy, sneezy, why-the-heck-is-the-room-s

pinning medicine.
12..God must love stupid people; He made so many.
13..The gene pool could use a little chlorine.
14..Consciousness: That annoying time between naps.
15..Ever stop to think, and forget to start again?
16.. Being 'over the hill' is much better than being under it!
17.. Wrinkled Was Not One of the Things I Wanted to Be When I Grew up.
18.. Procrastinate Now!
19. I Have a Degree in Liberal Arts; Do You Want Fries With That?
20..A hangover is the wrath of grapes.
21..A journey of a thousand miles begins with a cash advance.
22..Stupidity is not a handicap. Park elsewhere!
23..They call it PMS because Mad Cow Disease was already taken.
24..He who dies with the most toys is nonetheless DEAD..
25. A picture is worth a thousand words, but it uses up three
thousand times the memory.
26.Ham and eggs...A day's work for a chicken, a lifetime commitment for a pig.
27..The trouble with life is there's no background music.
28...The original point and click interface was a Smith & Wesson.
29..I smile because I don't know what the heck is going on

Post Liberation Update

2010-06-02T17:03:00.000-04:00

On Thursday the 27th. of May I had my "Liberation " in Albany,NY. I can tell you that after 3 angioplasty and a total time of 1 1/2 hr.'s and then a 2 hour wait flat on my back, I was up and on my way back to the hotel feeling better than I had in 4 years. I walked up the steps at the hospital,the way normal people do. No drop foot and walking without a cane or limp. That night we went out for dinner, still felt great and flew back to Raleigh on a 6 AM flight, walked through the RDU airport, still no drop foot, limp or cane. Got home and had to show off by lifting my legs in a marching gait and then up and down the stairs,then I decided that I would vacume the den. Well, that's when I think I over did it. The rest of the day(Friday) my symptoms were back and stayed that way until Tuesday, June 1st. I started to feel better with the ability to again walk without the drop foot and improvement in many of the other pain in the ass MS symptoms. My IRVS thinks it may be possible that the angioplsty veins may have re-stenoised,(collapsed) and we will see how I do over the next week or so and if necessary I will go back and be stented. Today I feel half way. Hope to get a Video posted soon.

Great Read, A Must Read

2010-05-24T18:00:00.000-04:00

EAE...how MS became classified as an immune disease

Saturday, January 9, 2010 at 5:12pm

Let's try to understand how the vascular connection to MS was dismissed, and why. It's all about EAE (experimental autoimmune encephalomyelitis) and drugs- Up until the 1930s, the prevailing thought was that MS was initiated by venous congestion. Dr. Tracy Putnam was at the center of this theory, blocking veins in dogs and creating MS-like lesions-until a new doctor found a new, SIMPLER animal model---

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2212888/

"In the early 1930s, Thomas Rivers and colleagues provided the first evidence that immune cells can attack the brain. Their simple experiments established what is now the most well-studied model of autoimmunity—the experimental autoimmune encephalomyelitis (EAE) model of multiple sclerosis.

Studies had shown that injection of foreign brain tissues into the brains of rabbits could cause paralysis (2). Intrigued, Rivers—then a virologist at The Rockefeller Institute—set out to duplicate these studies in monkeys. Rivers and his colleagues injected Rhesus macaques with normal brain extracts from rabbits and showed that most of the monkeys developed acute CNS disease with immune cell infiltration and demyelinating lesions. No infectious agent could be cultured from the animals, putting to rest suspicions of an infectious etiology. Rivers' group also noted that the disease-inducing capacity of the brain extracts paralleled their myelin content, providing the first hint that myelin was involved in disease induction. Thus, the experimental allergic (now “autoimmune”) encephalomyelitis (EAE) model was born. The group published these observations in three articles in the Journal of Experimental Medicine (3–5)."
++++++++++++++++++++++++++

+++++++++++++++

EAE continues to be the medical model neurologists and immunologists study today, even though this model for MS is deeply flawed. Researchers continue to give mice EAE by injecting them with antigen, and then try to "cure" them with a variety of immune blocking or modulating medicines.
++++++++++++++++++++++++++++++++++++++++++

Here's a paper from 2005
http://www.neuroimmunol.org/papers/16153891.pdf

"Experimental autoimmune encephalomyelitis (EAE) is a useful model for aiding the development of new treatments for MS. All therapies approved for MS ameliorate
EAE. Two approved medications, glatiramer acetate and Natalizumab, were developed directly from studies in EAE. Several trials are ongoing in MS after success in EAE, including altered peptide ligands of myelin, DNA vaccines and statins. However, EAE has failed to predict the outcome of certai n approaches. The reasons underlying such failures are discussed here.

Many scientists interested in developing new therapies for MS criticize the EAE model for its poor record of predicting outcomes in the clinic, especially for those instances when promising therapies indicate that they are beneﬁcial in models of EAE, yet then fail in subsequent clinical trials.

Nevertheless, the EAE models are rapid, and can quickly give indications of whether a particular mechanism of action of a speciﬁc drug has merit when taken into an in vivo model that recapitulates many aspects of the human disease, MS"

+++++++++++++++++++++++++++++++++++++

So, the reason we still use the EAE model for MS is because it is a RAPID proof of DRUGS? Because these drugs can cure mice of EAE????

MS researchers continue to use this disease model, to the exclusion of other research, even in light of the fact that these treatments appear to cure mice of EAE...but FAIL IN CLINICAL TRIALS OF HUMANS WITH MS.

Insanity is repeating the same actions over and over again and expecting different results. We have had seventy five years of EAE research, and we are not closer to understanding MS.
Perhaps we need to find a new model?

My Liberation Treatment

2010-05-24T12:25:00.000-04:00

I will be heading off Wednesday to get ready for my Liberation treatment. I have the procedure at 7 am on Thursday. The last time I was scheduled for the treatment the hospitals' legal department shut down the doctor who was gointg to do the procedure 1 hour before I was to be treated. This time I am very hopeful and excited that this will be done as scheduled. I am going to post a video of me and a list of my symptoms before and the effects and results of my Liberation treatment. Of course I am hopeful that the balance, numbness, cold feet, pain everywhere all the time, vision, bladder problems, fatiuge, heat intolerance,weakness right side, brain fog will respond once the blood flow is corrected. Once I have the procedure I will post updates as to the improvements in my symptoms and condition. Also I will let others know the contact information for the Doctor who is doing my treatment, this of course will be through e-mail and not posted openly. All prayers will and are appreciated.

2010-05-19T12:54:00.000-04:00

Dr. Embry responds to the Canwest editorial in Montreal Gazette-

Today at 11:20am

As always, Dr. Embry is articulate and on-point.
Here is the editorial
http://www.montrealgazette.com/health/Liberation+placebo+effect+surgery/3042812/story.html

Here is the response:

May 19, 2010

Dear Ms Levy and Dr Lang,

I read your recent column on the treatment of CCSVI (Liberation or placebo effect? MS surgery, Montreal Gazette) and was very surprised at how much you left out about the science of CCSVI. You completely missed the implications of the key scientific findings of CCSVI and why these findings strongly indicate that it is important to be treated for CCSVI sooner than later.

First of all the current science has left no reasonable doubt that CCSVI is associated with MS, that is, it is far more common in persons with MS than the general population. This is based on Dr Zamboni’s research as well as published information from other centres, including a major study at the University of Buffalo. No credible researcher is disputing this clear association. Of course, association alone does not mean cause. Your statement “CCSVI, if that condition actually exists” indicates that neither of you have not read the literature (e.g. the April issue of International Angiology which had 13 contributions on CCSVI). How you think you can write an intelligent column without such background reading boggles my mind.

Another critical scientific finding which you seemingly know nothing about is that the venous malformations that drive CCSVI are almost exclusively congenital, that is, they were there at birth. Again comprehensive papers have been published on this and it is very widely accepted. This is critical because it shows that CCSVI precedes the MS disease process and is not an effect of it.

Finally, it is also well accepted that biological mechanisms which are a consequence of CCSVI, such as reflux of venous blood back to the brain, the deposition of iron in the brain, hypoperfusion, and the upregulation of adhesion molecules on the endothelium of the venules, all can be reasonably related to the MS disease process.

I would also emphasize that no one credible is claiming MS is not an autoimmune disease. The huge MS data base shows it almost assuredly is. However, it also must be emphasized that the biological mechanisms associated with CCSVI all significantly enhance the autoimmune process.

This brings us to another of your ill-conceived statements. “CCSVI, and MS, breaks down on a number of other fronts, including the fact that patients who have impaired blood flow in their veins as a result of surgeries, for example, don't develop MS. Similarly, vessels tend to narrow as we age and yet MS is not a disease of older individuals. The blocked vein theory of MS is so out of keeping with our understanding of the disease that it might be compared to fixing a burned out car radiator by changing the tires of a car.” I was embarrassed for both you when I read it. MS is an autoimmune disease which is substantially aggravated by the co-occurrence of CCSVI. Not everyone with MS has CCSVI and not everyone with venous problems has MS. This again is well established in the literature. I cringe when I read ridiculous statements which attempt to discredit the CCSVI/MS association. You two are better than the nonsense you wrote.

I might note that CCSVI helps to explain a major puzzle in MS. As you both well know, the brain is protected from the blood-borne, immune system by what is known as the blood-brain barrier (BBB); greatly strengthened, blood vessel walls which prevent the passage of immune cells into the CNS. It has always been a problem to explain why the autoimmune cells were able to cross the BBB so easily in the MS disease process, given that evolution had ensured this would not happen. Of course the trick is that the biological mechanisms associated with CCSVI degrade the integrity of the BBB and allow the autoaggressive immune cells to cross the BBB much more easily. Thus, with CCSVI as part of MS, we now have an improved, more theoretically reasonable, disease model which fits an evolutionary perspective.

Given all of the above, there can be little doubt that CCSVI is an important part of the MS disease process because 1) it is associated with MS,2) precedes MS and 3) can reasonably contribute to the actual MS pathogenesis. As an analogy, just imagine if people with persistent back pain were found to have a pin sticking in their backs. If, in most cases, it was found the pins were there before the back pain and the pain was associated with the pin, then it would be reasonable to postulate the pins were part of the problem. Of course, if the pins were shown to be there after the pain, then one would assume the pin is not a big player in the problem and may be an effect of it (a failed treatment?).

The question now becomes now that once it is established that the pins precede the back pain and can help to explain it, do we wait for 7 years of research before pulling the pins, or do we pull the pins and at the same time do research to determine how they got there, how they cause the pain, what is the safest way to remove them etc. Clearly the latter is the common sense approach. Any advocacy of the first option immediately raises the spectre of a hidden, self-serving agenda.

Exactly the same logic applies to CCSVI and MS except it is more important that treatment be done as soon as possible. This is because, in the 7-10 years needed for all the research, many people with MS will suffer serious, irreversible damage to the CNS and will experience serious clinical symptoms because of such damage. Because CCSVI is almost assuredly an important part of the MS disease process as the current science has shown, then it is important that it be resolved as soon as possible. There is no doubt that large amounts of research are needed on CCSVI but treatment of those with MS cannot wait until this research is completed.

In summary, what the media (including you) have missed is that the current science says CCSVI is very likely a key part of the MS disease process and consequently needs to be treated as soon as possible. This is not a treatment which addresses symptoms but one which addresses a main driver. I am not surprised that many people are experiencing major improvements in their MS symptoms once CCSVI is relieved. I expect those with the pin in their backs would also enjoy some relief upon pin removal. Any time you counter a key part of a medical problem, from a bacteria which causes an ulcer, to immune suppression in autoimmunity, relief is to be expected. Claims that all the impressive improvements are simply “placebo effect” are also nonsense. They are just as real as the few cases of adverse effects.

Persons with MS are simply asking for a serious pathology (impaired venous flow from the brain), which science says is very likely to be a part of their disease process, to be corrected. To an objective observer, and hopefully to the media, this should be seen as a most reasonable request.

I also hope you can understand why pharmaceutical companies and those who receive substantial financial benefits from such companies (neurological community, MS Society), all of whom have much to lose from the introduction of CCSVI as a standard treatment, are strongly opposed to making CCSVI treatment available. Who can blame them? However, given their blatant and rather large conflict of interest, their opinions on this matter have to be weighed very carefully and seen in the light of the strong subjectivity they carry. Given that you are mouthing the same hollow arguments of those opposed to CCSVI, I have to wonder “who got to you”. A drug company, your favourite neurologist or perhaps a representative from the MS Society?

I hope this helps you understand why there is so much turmoil concerning CCSVI treatment. From an objective, scientific point of view, CCSVI needs to be treated anytime it is found. From a financial point of view, various factions are strongly opposed to such treatment. I hope some day the media gets at the real stories –1) science supports CCSVI treatment as soon as possible and 2) There is a war going on with the stakes being the physical health of persons with MS versus the financial health of drug companies, neurologists and national MS societies. Which is more important to our society? I know what side you two are on and it is not something you should be proud of. Beating up on persons with MS for financial reasons is as about as ugly as it gets. You are out doing the bankers in terms of a complete disregard for the values of our society.

I hope I have given you a broader perspective on CCSVI and the importance of treating it sooner rather than later. This issue will not go away until “the right thing to do” is done.

Sincerely,

Dr Ashton Embry
President, Direct-MS

2010-05-15T11:35:00.000-04:00

*This website is an informational website only.*	Print
	A A A

The recent press exposure for Paolo Zamboni's research into the vascular nature of multiple sclerosis (MS) has generated an unprecedented interest by MS patients around the world. Imaging sites have been inundated with 10,000s of patients seeking answers and contacts. Each site has made an effort to answer each of you individually but this been a drain on everyone's resources. We request that you please review the information below and contact your own doctor and neurologist at this time. Although there are ultrasound and MR imaging methods available to study the body's vasculature, the ability to study this new concept in a coherent fashion will take a lot of important and careful research. Many sites are in the process of getting approval from their local institutional review board (IRB) also known as an independent ethics committee (IEC) or research ethics board (REB). These are committees that have been formally designated to approve, monitor, and review biomedical and behavioral research involving humans with the aim to protect the rights and welfare of the research subjects. The research community is doing its best to respond to this new challenge. We will try and keep everyone apprised of the current situation from whatever public information is available at this site. Please be aware that this site does not solicit volunteers for research. Finally, please be patient as the scientific approach must take its course for the benefit and protection of all concerned.

The following is an opinion based on material available in the public domain. "In the last few years, researchers have recognized the presence of increased iron content in the basal ganglia and thalamus. This in itself suggests the possibility of venous damage in MS. But the interest and association of MS with veins dates back to Putnam (1) in the 1930s (and much earlier than this as well) and then later to Fog (2) in 1964 followed by a major decade's long effort to convince people of the role of the mechanical effects of changes in venous flow by Schelling (3). However, more recent evidence by Paolo Zamboni and his team (4) suggests that MS might be caused by a chronic cerebral spinal venous insufficiency (CCSVI). It may be that changes in shear stress can cause a biological response that is very similar to what we see in MS (see for example the work by John Bergan (5)). In fact, it is a logical explanation as to why the entire brain is affected in MS, why the disease tracks backward along the venous drainage system, and why it emanates from the white matter near the ventricles in the drainage of territory of the medullary veins."

E. Mark Haacke

2010-05-14T14:25:00.000-04:00

Darin Jackson

Do not spend all your money.

52 minutes ago

Hide

CCSVI in MS Toronto "The College of Physicians has a moral and social obligation towards all patients, including people with MS and in this sense, it should not deny them access to diagnostic tools used by recognized professionals. I suggest you find a strong case and clarify the position of the College if the moratorium is maintained for a long time because you are violating Articles 3, 4, 6 and 7 of your own code of ethics of physicians." - Alain Ouellet, former president
Canadian Society of Multiple Sclerosis? Region of Quebec (1999-2006)

2010-05-14T14:18:00.001-04:00

CCSVI in MS Toronto "If research would confirm its efficacy, this would be the first breakthrough for people suffering this debilitating disease. Until now, the only significant MS breakthroughs have been monetary ones for large pharmaceutical companies that promote their dubious treatments."

2010-05-13T16:04:00.000-04:00

Complete Statement of Dr. Sandy McDonald- May 11

Today at 11:17am

Thanks to Carolyn for hosting this as a pdf
http://www.zshare.net/download/76027234f038f35e/
Thanks to Wayne for sending me the pdf.

...and biggest thanks to Dr. Sandy McDonald---for using his own funds to test and study CCSVI in MS patients, for caring enough about MS patients to investigate and treat CCSVI. For being a true scientist and doctor. We are indebted to you, Dr. McDonald.

Statement of Dr. Sandy McDonald, May 11, 2010
1
STATEMENT OF DR. SANDY McDONALD
before the
SUBCOMMITTEE ON NEUROLOGICAL DISEASE
of the
STANDING COMMITTEE ON HEALTH
May 11, 2010
(passages in italics not delivered orally; no footnotes delivered orally)

INTRODUCTION
Madam Chair, Madam Vice-Chair, Honourable Members,
We will speak today of CCSVI.
CCSVI is a serious vascular problem. I am a vascular surgeon.
Thank you for this opportunity to address your Subcommittee on this matter of great
importance and, in my opinion, of great urgency.
You have the chance to help to put an end to an enormously troubling situation in which
thousands of innocent victims of Multiple Sclerosis are condemned to a slow or rapid
deterioration of every aspect of their lives, and are deprived of a simple procedure
available to
Every single Canadian found to suffer from a venous abnormality preventing blood from
draining properly from an organ, an abnormality treated perfectly easily by an
angioplasty, an intravenous ballooning procedure which stretches the abnormality away,
can easily get this treatment. Every single Canadian, that is, except those already
diagnosed with MS.
The cruel irony is that this procedure, if used to correct the abnormal cerebrospinal
venous flow, appears quite clearly to help those with MS. At present, however, the
diagnosis of MS precludes patients from this procedure.
I am here to ask you to help remove the obstacles which make it impossible for MS
sufferers to obtain treatment for Chronic Cerebrospinal Venous Insufficiency, and
impossible for doctors to give that treatment even as a matter of compassion.

Statement of Dr. Sandy McDonald, May 11, 2010
2
MY PERSPECTIVE
I am a cardiovascular surgeon.1 I practise in Barrie, Ontario.
I also founded a company called Barrie Vascular Imaging2, which performs imaging
services on referral from doctors across Canada and, indeed, around the world. I am the
sole shareholder and the President of BVI.

HOW I GOT INVOLVED
One day, not so long ago, BVI suddenly experienced a flood of calls for imaging to
diagnose venous abnormalities sufficient to cause the brain-drainage problem CCSVI.
We were receiving, and continue to receive, about a thousand calls a week. Many of
these calls, are in themselves heart-rending pleas for help from utterly distraught patients,
parents and spouses.
I researched the matter to see what might have prompted this flood of pleas for help. I
found the news about Dr. Paolo 3 and work on the diagnosis of
CCSVI. At BVI, we started to do some of the imaging requested, and found that an
astonishing percentage of the cases did indeed present verifiable, diagnosable
abnormalities. At first, we found these abnormalities in about 75% of cases.

DIAGNOSIS OF CCSVI
I realized I was uncertain about finding all the abnormalities. There are five veins
principally responsible for the draining, one of which the azygos running down beside
the heart is impossible to image from the outside and the other four of which, the two
vertebral veins running down the back of the neck and the two jugular veins running
down each side of the throat, have not been the traditional target of ultrasound imaging.
Furthermore, the abnormalities can be of various kinds. Valves inside the vein, meant to
keep the blood flowing the right way, can be faulty or even reversed. Veins can have tiny

(1 I am an FRCS(C) specialist in general surgery and in cardiovascular and thoracic surgery. My certifications are as follows:
ARDMS Certification RPVI 2007
Recertification exam American Board of Surgery 2004
ARDMS certification RVT 1999
Recertification exam American Board of Surgery 1993
B.F.R.C.S. (C) Cardiovascular & Thoracic Surgery 1984
American Board (General Surgery) 1983
F.R.C.S. (C) General Surgery 1982
2 http://www.barrievascularimaging.com/index.htm.
3 http://jnnp.bmj.com/content/80/4/392.full.
Statement of Dr. Sandy McDonald, May 11, 2010
3 internal obstructions or unusual sharp bends or narrowings which obstruct good blood
flow. )

I went to Italy and met with Dr. Paolo Zamboni and he kindly gave me the training
needed to detect the abnormalities and, on the basis of a rigid protocol, to diagnose
CCSVI.
BVI is now using Dr. Zamboni's technique and is finding abnormalities sufficient to
diagnose CCSVI in upwards of 90 percent of patients referred to us with MS.4
I am now sharing these diagnostic techniques with others.
I want to make it very clear. We are not finding something which is not there. We are
not using imaging which lies about the obstruction. We are not overdiagnosing these
obstructions. The obstructions are there.
Doing this diagnosis by ultrasound presents no risk to the patient.

CCSVI AND MS
It is too early to say whether CCSVI is actually causing the MS or even whether it is
worsening it, or whether the angioplasty in MS patients suffering from CCSVI will
predictably help them with their MS.
However, it is not too early to say that the logic of such connections is very plausible and
makes good scientific sense, and that the anecdotal evidence is already very compelling.
The logic is this. We know that patients with MS have a build-up of iron in deep brain
tissue, an area close to the draining veins.5 It is plausible that the compromised venous
drainage causes red blood cells, laden with iron, to leak from the thin-walled veins into
the brain tissue. As the leaked red blood cells break down, iron is deposited, an immune
response follows and nerve damage develops.
The anecdotal evidence is, as I say, very compelling. More and more doctors are
acknowledging the correlation between CCSVI and MS6, more and more countries are
acknowledging CCSVI as a formally approved diagnosis, and the experience of Dr.
Paolo Zamboni and now the experience of Dr. Marian Simka in Poland, is that virtually
all CCSVI sufferers with MS who undergo the corrective angioplasty experience a
lessening, sometimes dramatic, of their MS symptoms.

(4 In fact, these abnormalities are found very highly disproportionately in MS patients compared to non-MS
patients. We have done 130 imagings so far.
5 http://www.ncbi.nlm.nih.gov/pubmed/20351671;
http://content.karger.com/ProdukteDB/produkte.asp?Aktion=ShowFulltext&ArtikelNr=279305&Ausgabe=
253807&ProduktNr=223840;
6 http://ms-info.ca/node/22039.
Statement of Dr. Sandy McDonald, May 11, 2010 )

4
I have proceeded beyond diagnosis to refer patients for angioplasty in six cases. All six
have seen significant improvement; four of them have seen dramatic improvement.
There have been no adverse effects.
So, as I say, it is scientifically too early to conclude that there is a causal relationship
between CCSVI and MS or a one-to-one relationship between the angioplasty and MS
relief, but the evidence is already very promising.
For your purposes here, I think things can be said this way: if indeed there is a causal
relationship between diagnosable CCSVI and the MS or just the worsening of MS,
refusing the angioplasty and insisting that MS sufferers stick with only the traditional
treatments is insisting on treating the symptoms at huge expense rather than going after
the cause at very low expense. There is no compelling reason to wait before we take the
low-expense route, and there is no reason at all to force MS patients simply to put up with
a diagnosed restriction in normal blood flow.

THE PROCEDURE
Angioplasty is a well-known, universally practised procedure. Interventional radiologists
do it virtually every day. It is very low-risk. Angioplasty is commonly used for venous
obstructions (Budd-Chiari syndrome, May-Thurner syndrome, caval interruption).
Dialysis patients commonly require angioplasty to repair a venous stenosis (caused by a
dialysis catheter) and this can be in the jugular veins. There is nothing special about
venous angioplasty. The angioplasty we speak of for jugular and azygus veins7 is a 2-3
hour out-patient visit done under local anesthesia.
There is in my opinion nothing special about angioplasty8 in these veins rather than
somewhere else.9

(7 The vertebral veins are too small for current angioplasty techniques.
8 Angioplasty came into general acceptance without any of the generalized trials now demanded by some
before we can get on with treating CCSVI. As he wrote in his recent, May 6, 2010, The Mednews Express blog, Dr. Lorne Brandes, wrote (http://healthblog.ctv.ca/post/Treating-CCSVI-What-can-we-learn-from- coronary-angioplasty.aspx)

: )
"One would have to be forgiven, then, for suggesting that, had Dr. Zamboni made his discovery in with little or no hesitation, by the eager Gruentzig disciples of that era, and certainly without the stringent time-consuming clinical trials required in the 21st century.
Am I advocating a return to the past? No. But it is certainly sobering to learn that balloon
angioplasty, a highly effective, often life-saving procedure in wide use today, went through
neck veins without years of further study. "
9 Some clinics outside Canada proceed not only by angioplasty but also by the positioning of a stent at the position of abnormality. Dr. Simka is reported to have done this in about 100 cases, without any reported problems. Dr. Zamboni prefers to avoid the stent and to rely on the ballooning angioplasty. So do I. See also http://healthblog.ctv.ca/post/Treating-CCSVI-What-can-we-learn-from-coronary-angioplasty.aspx.)

Statement of Dr. Sandy McDonald, May 11, 2010
5
A previous witness here, Ms Laurel Radley has told you that the angioplasty in CCSVI
patients with MS has shown a 0/750 risk.

THE CATCH-22 AND THE MISERY
For reasons I do not fully understand, some doctors, some hospitals, some clinics, some
imaging companies have decided that MS patients ought, for no other reason than their
MS, to be deprived of the angioplasty.
For no other reason than their MS they will be deprived of a simple, straightforward
procedure that might actually help them.
As your previous witness Ms. Laurel Radley has explained and as I have seen as well,
some vascular specialists or hospitals with vascular specialists have refused to take
referrals of MS patients from their family doctors and insist on the referral coming from
neurologists (or refuse the MS patients altogether). With the greatest of respect for
neurologists, this puts the patient in a position akin to being refused the help of a
plumber, for a real plumbing problem, unless the electrician permits.
I am a cardiovascular surgeon. I fix blood flow. I am in that sense a plumber.
When I see a plumbing problem, particularly one which deprives the whole house of
good clean water, I want to fix it. When I see the whole house suffering, I want to fix the
pipes. I can do that without harming the wiring in any way and do not see why we
condemn the family to misery while we wait for the electrician.
Just this past week, I had to tell a young patient, whose young life is being expropriated
by MS, that I had found a clear obstruction in the blood flow from her brain. I had to tell
her that this obstruction clearly bears responsibility for her fatigue and likely bears
responsibility for other health problems, too. I could tell her that the technology exists to
correct this anomaly quite easily, quite cheaply and without undue risk. But I had to tell
her that the world as it is makes it impossible for that simple procedure, of a kind
available to everyone else, to be offered to her.

THE DANGERS WE RUN
She is not the only one. She is one of thousands. You have only to look at the blogs and
MS websites to know that there are tens of thousands of MS patients in Canada who
simply do not understand10 how it is possible to justify discriminating against them in this
way and depriving them of the chance to find some kind of respite.

(10 http://www.facebook.com/pages/CCSVI-in-Multiple-Sclerosis/110796282297;
http://www.cbc.ca/canada/story/2010/05/05/ms-rallies.html;
http://winnipeg.ctv.ca/servlet/an/local/CTVNews/20100505/wpg_CCSVI_100505/20100505/?hub=WinnipegHome; )

Statement of Dr. Sandy McDonald, May 11, 2010
6
They are right not to understand. You should not understand, either.
Unless we put an end to this Kafkaesque and perfectly discriminatory situation, we will
very predictably see, besides the misery we all know that MS sufferers and their families
must endure, besides the loss of quality of life and of productivity, besides the great cost
of current treatment, these dangers:
a) MS sufferers will go underground to seek diagnosis of CCSVI. This will increase
the risk of faulty diagnosis.
b) MS sufferers will go underground for the angioplasty, or go abroad,11 to doctors
whom they do not know and who are unpoliceable by Canadian medical orders
and governments.
c) MS sufferers will go to Canadian doctors whom they do not know and will lie
about their history in order to avoid the discrimination they know they will face if
they tell the truth.
d) MS sufferers will launch costly class actions which will needlessly clog our courts
and cost us all as a society.
e) MS sufferers will sue their doctors and hospitals for refusing them treatment on
the basis of spurious and in any event utterly discriminatory reasons.
f) A disproportionately large percentage of MS sufferers will, in their deepening
frustration and desperation, resort to suicide.
In my opinion, we will also see, among the general population, a gnawing worry that
government is there not to help us but to find ways to hurt us.12

THE URGENTLY NEEDED INTERIM SOLUTION
Yes, more study is needed. I am happy to contribute to the study. Indeed, through BVI, I
am doing diagnostic imaging which will help to establish what the correlation is between
CCSVI and MS.
The recently requested $10,000,000 for study13 by the MS Society is a good start but it
will not help any MS sufferer in the meantime and it is fatally partial if it does not include

(http://www.leaderpost.com/entertainment/CCSVI+rally+Regina+raise+awareness+Paola+Zamboni+researc
h/2991542/story.html;
11 Facebook discussion (see the site in the previous footnote) makes clear that intelligent, articulate people are already lining up trips not only to Italy and Poland, but to Scotland, Bulgaria, Japan, India and other destinations. See http://www.thebarrieexaminer.com/ArticleDisplay.aspx?e=2559231.
12 http://www.canadafreepress.com/index.php/article/22838.
13 http://www.theglobeandmail.com/news/politics/ottawa-notebook/two-mps-push-liberals-to-go-positive-
for-a-change/article1561031/; http://www.msscoiety.ca/en/releases/nr_20100505.htm. )

Statement of Dr. Sandy McDonald, May 11, 2010
7
a treatment arm for CCSVI. We will only learn the efficiency of the treatment if we
actually do it. If the study is used as an excuse to do nothing while we wait for the
results, 8 to 10 years, it will actually hurt MS sufferers.
We cannot wait while we study. We cannot tell the MS patients just to wait. We cannot
continue to disqualify MS patients from an angioplasty correction of CCSVI just because
they have MS.
One day, the provincial health authorities will decide that angioplasty to correct CCSVI
in MS patients ought to be paid for as part of our universal health care. One day, they
will realize that doing this will be spending, once, $4-5,000 to eliminate or reduce the
tens of thousands of dollars spent every year on special housing, special care and
enormous medication for every MS patient.
Maybe we have to wait for this to become a public expense. But we cannot wait for the
procedure to be given at all. We cannot tell MS patients just to wait.
We must allow MS patients to obtain, and we must keep the door open for doctors to
deliver, on a compassionate basis if necessary, correction of diagnosed CCSVI in MS
patients.

CONCLUSION
I conclude with my recommendation to this Subcommittee.
If universal health care is not accessible for treating CCSVI in MS patients, then we must
at the very least allow these patients to purchase these services in Canada (just as patients
purchase cosmetic surgery services, bringing revenue to hospitals whose facilities are
rented). These patients have a right to decide.
Please report to the Standing Committee on Health and advise the Minister of Health that
there are unconscionable and unacceptably discriminatory obstacles in the way of
corrective angioplasty for CCSVI sufferers who happen also to be diagnosed with MS.
Please find the way to make clear, at the earliest possible opportunity, that properly
diagnosed CCSVI should lead to angioplasty correction without any discrimination
between MS sufferers and non-MS sufferers.
MS patients have just as much right to proper blood flow from their brains as anyone
else.
Doctors are sworn to help their patients. Please let me help mine.

Dr. Sandy McDonald, MD

2010-05-13T08:35:00.001-04:00

How to treat CCSVI- from a vascular specialist-

Sunday, March 28, 2010 at 12:26pm

This doctor is treating CCSVI, and wants people to know the TRUTH about venous angioplasty. Not the rumors or false tales told to scare people. Here is his recent post on TIMS: Note: Venous angioplasty has been around a long time. Since 1979 in this doctor's institution. This is nothing new or terribly dangerous.
http://www.thisisms.com/ftopic-10680-255.html

In a generic sense, the procedure I am performing for ccsvi is angiography and angioplasty of veins. Venous angioplasty has been performed at our institutions since about 1979.; Our report (Glanz S, Gordon DH, Butt KM, Hong J, Adamsons R, Sclafani SJA: Treatment of stenotic lesions in upper extremity dialysis access fistulas by transluminal angioplasty: Four years experience. Radiology 152: 637-642, 1984) was among the first in the United States.

The most common indications are
1.the treatment of vein stenoses caused by hemodialysis catheters
2. the treatment of venous obstructions caused by cancers.
3. treatment of stenoses of jugular veins resulting from repeated dialysis catheterization and causing massive swelling of the head and face and microhemorrhages in the brain.
4. venous narrowings caused by malformations of veins, including Budd Chiari syndrome stenoses of the inferior vena cava and hepatic veins and the May Thurner syndrome, stenosis of the iliac vein.

Other types of venous malformations at our hospitals are treated by embolization and sclerotherapy.

In CCSVI (chronic cerebrospinal venous insufficiency) a malformation occurs mostly in the region of the confluens of the jugular vein and the subclavian vein. It has been shown that such veins and valves have an abnormal type of Actin. Fused valve leaflets, inverted valves, webs, septae and hypoplasia are seen. In 2009, the College of Phlebology, with representatives of more than fifty countries, voted unanimously to define this malformation.

It is often seen in patients with symptoms of multiple sclerosis, but is also seen in other patients without the diagnosis of MS. These patients have been found to have reduced cerebral blood flow and cerebral atrophy, potentially ischemic in nature, is postulated to be caused at least in part by the outflow problems.

Our procedure calls for percutaneous femoral vein catheterization under local anesthesia, followed by catheterization and angiography of the veins draining the brain and spinal cord, namely the jugular veins and the azygous veins. Occasionally catheterization of the vertebral veins is also performed. These procedures are comparable to the treatments for other venous malformations.
http://www.facebook.com/?ref=home#!/note.php?note_id=380143052210&id=110796282297&ref=nf

If venous stenoses, slow flow, reflux or collateral flow through the brain and spine are identified. angioplasty of the jugular veins or azygous vein is performed after confirmation of stenosis by intravascular ultrasound. Patient recovery is short with discharge about one hour after the procedure. No sedation is necessary.

As stated above, venous angioplasty is an accepted procedure with a very low complication rate. While no complications were reported by Zamboni, they do occur when venous angioplasty is performed in other veins, including thrombosis, perforation that are minor and usually self limited, and restenosis. Restenosis may have a role in management of restenosis, although the stents were not designed for ccsvi.

Stent placement is also a component of most other venous angioplasty procedures either as an adjunct, as a primary form of overcoming elastic recall or as a secondary procedure to reverse restenosis. These have been safe. There is one anecdotal report in the lay press of a migration of a stent from the jugular vein into the heart that required operative removal; stent migration has been reported during other venous stenting procedures but these are uncomomo

2010-05-11T11:51:00.001-04:00

Int Angiol. 2010 Apr;29(2):109-14.

Extracranial Doppler sonographic criteria of chronic cerebrospinal venous insufficiency in the patients with multiple sclerosis.

Simka M, Kostecki J, Zaniewski M, Majewski E, Hartel M.

Department of Angiology, Private Healthcare Institution SANA, Pszczyna, Poland. mariansimka@poczta.onet.pl

Abstract

AIM: The aim of this open-label study was to assess extracranial Doppler criteria of chronic cerebrospinal venous insufficiency in multiple sclerosis patients. METHODS: Seventy patients were assessed: 49 with relapsing-remitting, 5 with primary progressive and 16 with secondary progressive multiple sclerosis. The patients were aged 15-58 years and they suffered from multiple sclerosis for 0.5-40 years. Sonographic signs of abnormal venous outflow were detected in 64 patients (91.4%). RESULTS: We found at least two of four extracranial criteria in 63 patients (90.0%), confirming that multiple sclerosis is stronghly associated with chronic cerebrospinal venous insufficiency. Additional transcranial investigations may increase the rate of patients found positive in our survey. Reflux in internal jugular and/or vertebral veins was present in 31 cases (42.8%), stenosis of internal jugular veins in 61 cases (87.1%), not detectable flow in internal jugular and/or vertebral veins in 37 cases (52.9%) and negative difference in cross-sectional area of the internal jugular vein assessed in the supine vs. sitting position in 28 cases (40.0%). Flow abnormalities in the vertebral veins were found in 8 patients (11.4%). Pathologic structures (membranaceous or netlike septa, or inverted valves) in the junction of internal jugular vein with brachiocephalic vein were found in 41 patients (58.6%), in 15 patients (21.4%) on one side only and in 26 patients (37.1%) bilaterally. CONCLUSION: Multiple sclerosis is highly correlated with chronic cerebrospinal venous insufficiency. These abnormalities in the extracranial veins draining the central nervous system can exist in various combinations. The most common pathology in our patients was the presence of an inverted valve or another pathologic structure (like membranaceous or netlike septum) in the area of junction of the IJV with the brachiocephalic vein.

CCSVI

2010-05-07T11:37:00.000-04:00

It took only two years for the discovery of Insulin to be used on diabetic patients, why will it take 5 – 10 years to research CCSVI when so many patients, who have already been treated, report improvements?I truly hope the MS Society will be investing and investigating in this ground breaking research and that vascular doctors and researchers will be supported, in the hopes of discovering if venous insufficiency is part of my MS.

GREAT READ, A MUST READ & SHARE

2010-04-30T11:16:00.000-04:00

Friday, April 30, 2010

The Medical Industrial Complex: Sick People Required

Image by Getty Images via Daylife

Living life with a chronic illness such as Multiple Sclerosis gives one an inside view of the medical establishment, a view that healthy people rarely glimpse. In the blissful ignorance of good health, modern medicine appears to be bright and shiny, a miracle machine complete with magical elixirs, futuristic technology, and a sophisticated understanding of the maladies that strike human beings. Headlines and television news anchors shout about the latest medical breakthroughs, and a stream of television commercials assure us that there are pharmaceutical remedies for everything from cancer to osteoporosis to erectile dysfunction. Once sick and thrust into the belly of the beast, though, this illusion starts to fall away, and a different reality emerges.

Although there have been some incredible advances made in our efforts to heal sick humans over the last 50 years, there are still vast swathes of patient populations whose illnesses remain poorly understood, insufficiently and ineffectively treated, and ultimately incurable. Problematically, many of these patient populations generate billions and billions of dollars of profit for the modern medical machine, a situation that sets up a paradox within our profit driven medical establishment. Cure these patients, and vast sums of money and an elaborate infrastructure would simply evaporate; keep them perpetually reliant on hyper expensive medicines and medical procedures, and reap the fruits of a perpetual money machine.

Before I am accused of being a conspiracy nut, let me state outright that I do not believe that there is a cabal of evil, mustache twisting, demonic connivers assembled around a huge flaming conference table, snacking on deep-fried baby’s arms while plotting to keep cures and remedies hidden and out of reach from the desperately ill. If this were the case, the solution would be fairly straightforward; simply "out" the conspirators, and the walls would come tumbling down. Rather, the problem has become incorporated into the system itself, insidious and inherent, the logical outcome of the evolution of a medical industrial establishment that has come to view sick people as consumers and horrendous illnesses as opportunities for tremendous financial gain. This system does not require people with malicious intent to keep it functioning; it only needs decent people doing their appointed jobs to the best of their abilities to keep the gears turning.

As previously stated, the past 40 or 50 years have seen some incredible medical advances, most of them in the fields of surgery and in the treatment of traumatic injuries and infectious illnesses. Organ transplants, less invasive surgical techniques, and an ever increasing understanding of human physiology have combined to put a shine on many facets of modern medicine. A patient's chances of surviving a heart attack, or avoiding having one in the first place, are much better now than in 1950. Knee injuries that in decades past would necessitate complex and sometimes crippling surgery can now be done using arthroscopic techniques requiring only tiny incisions, with recovery times measured in a few short weeks rather than many grueling months.

The treatment of some of our most dreadful illnesses, though, have not seen such advances. Ask the average person about the chances of surviving cancer, and I would expect that most would tell you that your odds of beating the disease are much better now than they were 60 years ago, a belief driven largely by the almost relentless marketing done on behalf of the medical profession. The New York Times, though, reports that "the death rate for cancer, adjusted for the size and age of the population, dropped only 5 percent from 1950 to 2005." (Click here for article). Headlines blaring about the latest advance in cancer drugs rarely mention that the studies cited often declare a cancer drug "effective" even if it increases the lifespan of the patients taking it by only a handful of weeks. The fight against some forms of cancer has indeed benefited from modern medical advances, but for many cancers, little real headway has been made.

Since the cure for polio was found in the mid-1950s, very few if any diseases have actually been eradicated. Instead, the trend is towards turning diseases such as diabetes, AIDS, some cancers, and multiple sclerosis into treatable chronic illnesses, their patients heavily reliant on fantastically expensive medications and interventions. The reason for this lies largely in the fact that over 70% of our medical research is carried out by pharmaceutical companies, whose primary mandate is to generate financial profit.

The job of a publicly traded pharmaceutical company CEO is to constantly drive up the price of his company's stock, not to facilitate the creation drugs that would be of the most benefit to the patients taking them. This isn't a question of morality, but of economics. The drug companies, and those who manage them, are merely doing what every other business endeavors to do in our free-market capitalist system, to constantly increase profit. I'm all for free-market capitalism; in recorded history there has been no better economic driver and creator of wealth. Unfortunately, when applied to healthcare, in many cases good economics has led to very bad medicine. The corroding influence of big money, in addition to an environment of lax regulation, has led to some shocking abuses of the system, such as the marketing of drugs that are known to be dangerous (click here for info), and the suppression of studies whose results are unfavorable to the drug being tested (click here for info).

Over the past three decades, pharmaceutical companies have discovered that the best way to increase profit is to market "blockbuster" drugs that patients must stay on for the rest of their lives. In the case of multiple sclerosis, this has led almost all research to concentrate on compounds that alter or suppress the human immune system, based on the "autoimmune model" of the disease, which states that MS is the result of an immune system gone awry. In reality, it's becoming more and more clear that the aberrant immune response seen in MS patients is more a symptom than a cause of the disease. Some unknown agent is driving the immune system to attack the central nervous system, the latest and hottest theory being that the vascular abnormalities collectively known as CCSVI (click here for info) might be the cause.

Since the mission of pharmaceutical companies is to generate the most bang for their research bucks, they direct their research dollars to projects that have the best possibility of leading to substantial profit. This, in turn, influences the behavior of even the most well-meaning medical researchers, who, just like everybody else, need to feed their families and pay their bills, and who naturally seek to advance their careers. Thus, they are drawn to investigations that will most likely win hotly contested research dollars. That funding, the vast majority of which comes from the big pharmaceutical companies, goes almost exclusively into researching novel compounds that can be patented and remain the sole property of the company that discovers them for many profitable years.

This same dynamic inherently underfunds research seeking to eradicate diseases that have each, in effect, become multibillion dollar a year industries. This is not because of evil or malicious intent, but instead is the result of the economic engine that drives what can be called the "medical industrial complex", the misguided marriage between profit-seeking corporations and the healthcare industry, which requires a perpetual supply of sick people to keep the money flowing. This need for patients is so intense that it can sometimes lead previously untreated and relatively benign conditions to be deemed diseases that require pharmaceutical intervention, as in the case of osteopenia (click here for details).

This same drive also leaves many potentially effective but unprofitable remedies untested and relatively ignored. Drugs such as Low Dose Naltrexone (LDN) and the effects of diet and natural remedies have barely been studied for their impact on MS, simply because there is no profit to be made from them. Recently, a cheap blood pressure medication, Lisinopril, has been shown to have some promise as an MS drug. This discovery wasn't made by any run-of-the-mill research scientist, but by Dr. Jim Steinman, one of the inventors of Tysabri, a very expensive and controversial MS medication that is very effective but also carries with it the possibilities of very serious side effects. Dr. Steinman would like to see a full scale human study of the effects of Lisinopril, but says that "Lisinopril is as inexpensive as any prescription drug at this time, so pharmaceutical companies won't see any profits from financing a study" (click here for article). Thus, the drug remains unstudied in its effectiveness against MS, for now and probably forever.

It's hard to see a solution to this disheartening status quo, other than a significant increase in the government funding of medical research. Unfortunately, the trends are heading in the opposite direction, with more and more funding coming from the private sector, as public dollars become scarcer and scarcer in this age of soaring deficits and cries for smaller government.

As a patient suffering from MS, the situation is incredibly frustrating, as it's clear to me that much of the research now being done on the disease is not conducted with patient benefit as its primary underlying goal, but rather with the profit potential and market share that each patient represents as the target. The recent CCSVI controversy has brought this situation into focus for thousands of MS patients, because if relatively simple vascular surgery can indeed treat MS effectively, the multibillion dollar a year treasure chest that is MS will be wrested from the grasp of the pharmaceutical companies, whose financial influence within the medical and political sectors cannot be understated. The medical industrial complex is a self-perpetuating entity that will not easily be shut down, the sheer force of its financial weight creating an almost irresistible momentum.

I'll let my final words on the subject be these: As a just and honorable society, please, view me first as a patient, not as a consumer. Human suffering should never be treated as a commodity, regardless of the considerable economic incentives to do so.

2010-04-28T16:29:00.001-04:00

Angela Spindler Here's what I sent if anyone wants to use it as a template:

Hello! I am hoping to help you help me and countless others. At this very moment MS patients are prepared to pay out of pocket for a run of the mill, minimal risk medical procedure we are being denied. Some are truly growing desperate.

Based on a theory that Multiple Sclerosis is ... See Morelinked to chronic cerebrospinal venous insufficiency, or CCSVI, a condition where blocked veins in the neck or chest prevent blood from draining properly from the brain, an Italian vascular doc has devised a treatment similar to angioplasty as a fix.

We speculate denial of this procedure may be due to the millions of dollars drug companies and MS societies might lose should our debilitating disease be snuffed out. Simply a venogram to find blockages, found most often in the jugulars and azygous veins, is done for an official diagnosis of CCSVI. Then with the very same catheter, balloons are inserted to remedy blocks or kinks as needed.

Will you offer this or similar procedures to diagnose and remove vein blockages?

After much evidence, experts in 47 countries voted to include CCSVI in the latest 'Consensus on Venous Malformations,' now published at: http://tinyurl.com/yh8qgq3 . Many studies on safety and CCSVI links to MS are now available, but the most compelling argument for proceeding is the overwhelming number of success stories. Some tell of immediate improvements of MS symptoms. While others report remaining MS free four years since treatment.

The overwhelming news spreading throughout the internet cannot be ignored. Vascular surgeons, neurologists and interventional radiologists who take the time to read the evidence are recognizing the truncular venous malformations as preceding MS lesions. Our worsening MS symptoms aside though, shouldn't blocked veins restricting flow from the brain be of the utmost importance?

Many of us have traveled to Poland, India, Bulgaria, Eygpt and beyond paying upwards of $10,000 per procedure. But as you have recognized on your website - so many in need remain stranded at home unable to travel so far by plane. Thanks in advance, Angela

2010-04-24T12:50:00.000-04:00

The Great CCSVI Scandal of 2010

Yesterday at 9:38pm

I want to take a look at the future. A time when citizens of Canada look back to 2010. A watershed year in the history of MS.

I’m 52 and I remember the Tainted Blood Scandal of the 80’s. A time when people turned a blind eye to a mounting body of evidence that the national blood supply was tainted. Innocent people got sick, and many died of mystery diseases that we now call Hepatitis and AIDS.

In so many ways the drive to have CCSVI recognized and treated is being met with shameful roadblocks and silence. Could we be going down the same path?

Please look at this Tainted Blood Timeline from the CBC article:

1974: First cases of what was then called non-A, non-B hepatitis (later identified as hepatitis C) to be transmitted through blood transfusions, are identified.

1985: Canadian Red Cross starts testing blood products for the AIDS virus.

1990: The Canadian Red Cross starts direct screening for the hepatitis C virus. But unscreened plasma in blood products still reaches some patients, possibly for as long as two years

1993: Order in Council authorizes the Commission of Inquiry on the Blood System in Canada. Ontario Court of Appeal Justice Horace Krever appointed as commissioner.

1995: Krever Commission warns the Canadian Red Cross, federal and provincial governments, pharmaceutical companies and individuals, that they may be named for wrongdoing in the tainted blood inquiry.

1998: RCMP concludes review process and launches criminal investigation into Canada's blood distribution system.

2006: Dr. Roger Perrault goes on trial in Toronto on charges of criminal negligence causing bodily harm and criminal nuisance endangering the public. The trial of the former medical head of the Canadian Red Cross is scheduled to last into 2007.

2006: Prime Minister Stephen Harper announces a $1 billion compensation package for 5,500 people who contracted hepatitis C before 1986.

CBC - Canada's tainted blood scandal: A timeline:
http://www.cbc.ca/news/background/taintedblood/bloodscandal_timeline.html

CBC - Tainted blood scandal:
http://www.cbc.ca/news/background/taintedblood

To me the drive to have CCSVI recognized in 2010, is showing many parallels to the formative years of the Tainted Blood Scandal, so long ago.

At the end of 2009 many Neurologists just didn’t believe that people with MS would have blood flow problems, or CCSVI. On mass they said this was ridiculous, yet they never looked!

Month after month goes by and a vast majority of those tested around the globe now have documented cases of CCSVI. An estimated 1,400 people have had CCSVI testing done, more than 300 in Canada alone, and the evidence is building. Between 80% and 95% of those with clinically defined MS show CCSVI. The numbers tend to be higher, when Venography is used as an investigative tool.

Now in 2010 we are seeing people from around the globe get the Liberation Treatment. I would guess over 500-treatments have been performed, and an overwhelming majority show improvements. Some are subtle and some are more dramatic.

In 2010 I have not heard of a single case where anyone had an adverse reaction from the Liberation Angioplasty, and I cannot think of a single case where anyone got worse. Many times the Liberation Treatment is less than an hour. One person said the most painful part of their treatment, was taking off the sticky band-aid a few days later.

But just like the mid 80’s Blood Scandal, we are seeing Doctors, Government Officials, and respective governing bodies standing silent, or putting up roadblocks to those most in need.

Dr. Zamboni said time and time again, that the CCSVI Liberation Treatment should be offered immediately to those who are no longer responding to any known treatment, and who are facing certain permanent disability or death from this monster called MS. To do anything else is inhumane.

2010 is going to be a watershed year. Change is in the air, and a line is being drawn in the sand.

Unlike the mid 80’s we now have “social media” in many forms. Every keyboard click leaves a trail. Facebook and YouTube videos instantly inform, and TV signals continue to flow.

The roadblocks are being talked about. The real-time buzz is completely global. People who are in a position of power stand silent, and those who go out of their way to put up roadblocks, have left a permanent mark. An indelible record of their inhumanity.

The fight for the treatment of CCSVI is growing. It’s unstoppable now, because we are simply fighting for the right, a fundamental right, to have a blood flow problem treated.

The high-tech foundation of a CCSVI Treatment Scandal is forming. This time social media will be a strong enduring voice for those too weak to fight. It will shine light on the suffering of too many, who needlessly slip into the darkness of time. The timeline of shame has been archived on countless hard drives around the globe, for all to witness.

2.5 Million MS sufferers will soon see every MS patient in Kuwait Liberated. The mounting evidence in support of CCSVI treatment will be even stronger, and the justification to oppose this will be harder to justify. In fact it may become a Charter of Rights issue, because mounting evidence is being pushed aside.

Many years ago, Governments argued there was no test available to screen blood for the virus before 1986, so there was no way to protect the blood supply. Yet their inaction has cost over $1.1billion in compensation, because delays needlessly hurt Canadians.

With CCSVI we currently have tests right now. Those suffering from MS can be tested and treated today. To not do this now, will be the subject of both Federal and Provincial Inquiries. It’s just a matter of time. Regardless of legal liability, all Governments have a moral responsibility to Canadians.

I can see the media headlines now, where someone with MS dies needlessly in a hospital, when a quick minimally invasive treatment option sits idle, down the hospital hall. It’s just a matter of time. All because Vascular Surgeons and Interventional Radiologists have their hands tied, and roadblocks were put up, preventing them from doing what they are already trained to do.

Sadly this is happening right now from coast to coast, and there is no justification for this immoral inaction. 70,000 with MS in Canada are watching this unfold.

I predict that in a few years we will see history repeating, unless something is done now. We will see Federal and Provincial Inquires emerge, and they will all say that this must never happen again. Access to known and safe treatments must never be blocked.

Is this our dark future? Will this situation be turned around before we reach this tipping point?

Those who oppose CCSVI will look back to 2010 with great shame. Their day is coming when a vast majority in society will never forgive them for the needless suffering they have imposed. We will remember your names, your political agendas, and your bullshit arguments. Because you enabled roadblocks and denied precious hope and treatment from the very people who need it most...

WaYnE

Today With MS

Another example of greed, Doctors are as bad as the lawyers !

Stem Cell News

CCSVI in MS Toronto

Pain Management

More Hope

The Hubbard Foundation

Beet Juice and the brain

Canadian MS News

Doctor Hubbard theory of MS

WHY NOT PUT IT OUT NOW ON THOSE WHO WIILL RISK IT ?

You must read and share

Good read, good news

Here we go, watch and make up your mind.

Don't Smoke

Great article on CCSVI

The Druging of America

CCSVI Fund Raising

Let's get movng

MY BIRTHDAY BIBLE VERSE

Big Pharma

Friendship

MS study to be conducted by local doctors

Another good read

A Must Read

Requests

Photo Memories

Sponsored

Browse Notes

Subscribe

Blood Flow and white matter lesions

Taken from Melissa Medina's blog

The Saddest, Maddest Letter You Will Ever Read in Reply Canada's Health Minister

A treatment for multiple sclerosis that upsets Big Pharma

Advertising

More proof of CCSVI and MS connection

NHS 'has wasted millions on MS drugs which did nothing to help patients'

The NHS has wasted millions of pounds on MS drugs which did nothing to help patients, according to experts.

Related Articles

BRIBERY IN MEDICINE

Keep your sense of humor

Post Liberation Update

Great Read, A Must Read

My Liberation Treatment

CCSVI in MS Toronto "If research would confirm its efficacy, this would be the first breakthrough for people suffering this debilitating disease. Until now, the only significant MS breakthroughs have been monetary ones for large pharmaceutical companies that promote their dubious treatments."

Extracranial Doppler sonographic criteria of chronic cerebrospinal venous insufficiency in the patients with multiple sclerosis.

Abstract

CCSVI

GREAT READ, A MUST READ & SHARE

Friday, April 30, 2010