Friday, February 5, 2010
http://www.bnac.net/wp-content/uploads/2010/02/bnac_newsletter_02-04
Thursday, February 4, 2010
Wednesday, January 20, 2010
Concered
Roger Cawiezell Dionne-Antoinette Osborne: Dionne, went to my Neuro this A.M., he was completely against the CCSVI ,Liberation treatment, we actually had a argument about Big Pharma, FDA, and the Society's lack of support and zero media coverage here in the U.S. I am at a loss as to why they don't want to at least pretend they want to find a cure. Hope you are well. Roger
Tuesday, January 19, 2010
Friday, May 8, 2009
Will The FDA Kill Adult Stem Cell Medicine?
A recent news article raises some questions that are of utmost importance to any patient dealing with serious/chronic illness. Although the article is more an opinion piece then straight up journalism, the issues it talks about are vitally important.
In a nutshell, the piece is concerned with the fact that the FDA is currently in the process of deciding whether to classify adult stem cells as prescription medicines, which would thereby give the FDA the right to regulate the way such medicine will be administered. Please keep in mind, we're not talking about embryonic stem cells here, so there are no moral politics involved in this matter. At issue is adult stem cell therapy, which comes with none of the complicated moral questions surrounding embryonic cells. Instead, it's money, scads and scads of dollars, that are at the heart of the issue.
The drug companies (Big Pharma) are lobbying hard to get the FDA to declare stem cells "prescription drugs", thereby giving the drug companies considerable control over this revolutionary medical technology. Stem cells hold the promise of completely changing the face of modern medicine. They are the key to unlocking the human body's own ability to heal and regenerate itself. Stem cells could make the way medicine is currently practiced, with all of its invasive surgeries and use of potentially toxic pharmaceuticals, as obsolete as the medical practices of the 1700s are today.
This all presents a great threat to the pharmaceutical industry. Over the last 50 years, the marketing of pharmaceuticals has become an industry that generates hundreds of billions of dollars each year. Much of this money is generated by drugs used to treat "chronic" illnesses, such as diabetes and multiple sclerosis. Diseases such as these are cash cows for the industry, because patients stricken with them are forced to be consumers of the industry's products for life. Medicine is well on the way to transforming previously fatal diseases, such as some forms of cancer and AIDS, into chronic illnesses, creating yet more lifelong consumers of expensive pharmaceutical therapies.
The success of stem cells would mean that many of the medicines used to treat chronic illnesses would be rendered instantly obsolete. Big Pharma stands to lose billions and billions of dollars if the promise of stem cells turns out to be even only partially fulfilled.
It's important to remember that all of the companies that make up "Big Pharma" are public companies, and as such are by law beholden to their stockholders, not to the patients that take their products. Their primary mandate as public companies is not to benefit mankind through the creation of medical miracles, but to earn ever increasing amounts of money.
While on the face of it this would seem to be all well and good, as the best way for pharmaceutical companies to make money is to create effective drugs, there is actually a basic conflict to this equation. Turning potentially fatal or disabling diseases into manageable chronic illnesses generates huge amounts of wealth, but curing those same illnesses puts an end to the cash flow. Thus, we see great amounts of effort and capital going into researching drugs that treat illnesses, but not much going into research that might actually cure them.
I'm not suggesting that there is some evil conspiracy afoot, or that there is a cabal of miserly old men sitting in an opulent conference room somewhere, casually devouring infants as they plot to make untold billions of dollars by ensuring that illnesses are never cured. If that were the case, the solution would be easy, simply eradicate that opulent conference room and the baby eaters in it, and proceed on to the cures. Instead, the problem is much more insidious.
Over 70% of medical research in the United States is funded by the pharmaceutical companies. As stated before, the primary mandate of these companies is to make money, which they do best by discovering "blockbuster" drugs that will generate billions of dollars. Therefore, pharmaceutical research money is funneled towards projects that hold the promise of just such discoveries.
Research scientists, as well-meaning as they might be, still must rely on grants from pharmaceutical companies to fund their research (and therefore pay their rent, feed their families, and advance their careers), and thus are naturally inclined to conduct research that will attract pharmaceutical company dollars. In a way, it's a vicious cycle; pharmaceutical companies tend to fund only those projects which they think have the biggest profit potential, thereby influencing researchers and scientists, who, after all, need to make a living, to embark upon research that is likely to have the profit-making potential that the drug companies are looking for.
Stem cells threaten to throw this whole system on its ear. The process of extracting stem cells from a patient (usually from bone marrow or fat tissue) can be done in a doctor's office, and the processing of such cells can take place in laboratories outside the purview of the pharmaceutical companies. These procedures are not so complicated that the industrial might of the pharmaceutical industry is needed to make them a reality. They are more on the scale of fertility treatments, which are administered in local clinics by local doctors without the "help" of Big Pharma.
If the pharmaceutical industry is successful in its lobbying efforts to get the FDA to declare stem cells "prescription drugs", the power of stem cells will be ripped from the hands of physicians and placed in the hands of public companies whose profit-making mandate could actually lead to the suppression of potentially revolutionary stem cell therapies. This would have tragic consequences for the millions of patients that could potentially benefit from stem cell treatments.
Laboratory models and animal testing have shown that these treatments are extremely viable, and many could likely be ready to treat human patients within the next five years, if left in the hands of physicians and researchers. If, instead, stem cells are declared "prescription drugs", these therapies might not see the light of day for decades.
If you or a loved one suffers from a chronic illness, it is time for your voice to be heard. Call your senators, call your congressman, write letters to your newspapers. Demand that your friends and family do the same. Climb up on soapboxes and scream from mountaintops. Bang drums, put on face paint, and go on the warpath. Treat this issue as if your very life depends on it, because it does...
A Wealth of GREAT Information on CCSVI
CCSVI Presented in an Elegant and Thoughtful Way
As many of you know, I have been working on some articles around the theory, data and progress around CCSVI (chronic cerebrospinal insufficiency) and multiple sclerosis (MS).
I thought I would bring to you a lovely overview and personal perspective on CCSVI and MS that was written by someone who is able to sum things up in a tidy, yet thought-provoking way. I bring you CCSVI (the Vascular Theory of MS): Separating Fact from Fiction. The author, Marc, is also known as The Wheelchair Kamikaze, and he has been keeping up with the news on this developing theory since it was just a fairly obscure entry in the medical literature.
I was so impressed with the way that Marc was able to convey the basics on CCSVI and his opinion around this theory, that I have frequently found myself wondering how I could say the same thing as well as he did - until right now, when I realized that I could just bring the article to you to read for yourself (blame the delay on my MS-related cognitive dysfunction).
So, without further ado, go read this fresh opinion on CCSVI. While you are at it, check out some of the rest of the site, especially the photographs, which were taken from the perspective of a wheelchair.
Read what The Wheelchair Kamikaze has to say about CCSVI:
Is MS Actually a Vascular Disease?
Update on "MS as Vascular Disease"
CCSVI (the Vascular Theory of MS): Separating Fact from Fiction
Read more about CCSVI and MS:
Monday, January 18, 2010
This is what I did for my husband, and this is my best advice. Not everyone can get on a plane to fly to Poland. Most will need to find local help. You can do it.
Get a "team" together. This can be healthy spouses, siblings, children, friends. Assign them your case. You will work together to find a doctor to treat you.
Print out Dr, Zamboni's research papers.
http://jnnp.bmj.com/conten
http://www.ctv.ca/generic/
Get together Dr. Mark Haacke's protocol for MRV testing-
http://www.ms-mri.com/
Look for local "interventional radiologists". Search for these doctors on the internet. They often practice in groups or at universities. If you cannot find any of these doctors in your area, search for vascular surgeons. IR docs use magnetic resonance venography and venography to find venous abnormalities. They do it every day. Vascular surgeons understand the importance of venous return.
Call these doctors, email these doctors, tell them you would like to be tested for internal jugular vein and azygos vein stenosis, and send them the Zamboni research. Tell them you have headache and swelling as sign of blocked veins. Mention that interventional radiologist Dr. Michael Dake at Stanford University is conducting a clinical trial on this, and he believes that Dr. Zamboni is right.
Do not stop. We have a group of patients on the east coast of the US that spent months contacting hundreds of interventional radiologists. They found one willing to look at this, and now there are finally more coming on board. Once these doctors see the glaring evidence of venous malformation in MS patients, they are convinced it is real. Then they talk with their IR doc colleagues, and the word spreads.
When I went to Stanford last year, no one was talking about CCSVI. But slowly, the interventional radiology doctors are learning about this condition. Go to them with your team. Convince them to test you, to be a part of medical history. (You may have to offer to pay for your initial testing...but insurance will cover it once stenosis is proven. This is what we did.) Do it today.
We (MS'ER's) Need To Revolt
CCSVI – Some More Thoughts
Last modified: 16.01.2010 - 18:35 CET Created: 16.01.2010 - admWritten by Ashton Embry PhD. New Pathways Magazine. Nº 58. November/December 2009
Last month I described the basics of the concept of chronic cerebrospinal venous insufficiency (CCSVI) which undoubtedly marks the start of a new era in understanding and treating MS. In this issue, Ian Cook has followed up on CCSVI and has focused on currently-available treatments for relieving CCSVI as well as a major research project which will be done at the University of Buffalo over the next few years. In this column I want to address a few issues that have arisen with the advent of the CCSVI concept. These include the role of CCSVI in MS, the historical roots of the concept, the current response of the main elements of the MS community to CCSVI, and what might be done to get treatment of CCSVI available as soon as possible.
The idea that CCSVI is the cause of MS is already being bantered about. I can certainly understand this but to me such a way of thinking is not productive. What need to be answered in this regard are questions such as “Does CCSVI play a major role in the MS disease process?” and “Does CCSVI come before or after the onset of CNS autoimmunity?” To me I think we can answer the first question with, “Given the current data it is almost a certainty that CCSVI is a key part of the MS story”. I say this because 1) almost everyone with MS tested at four different research centres in three different countries exhibited CCSVI, 2) CCSVI explains a number of previously puzzling characteristics of MS lesions such the association of iron and the venocentricity, and 3) CCSVI is theoretically compatible with all we know about MS. Notably, inclusion of CCSVI as an important part of the MS disease process provides a much improved explanation of all the features of MS.
It is much harder to answer the second question. Currently, there is no evidence or theoretical reasoning that supports a model that has CCSVI following the onset of autoimmunity. It is much more reasonable to assume CCSVI precedes autoimmunity because such a model is theoretically sensible and has been sporadically postulated by MS researchers over the past 150 years. In regards to CCSVI coming first, some researchers have suggested that the venous blockages are congenital and are in place at birth. This is doubtful given that adequate vitamin D can prevent MS but right now our ignorance of how and when CCSVI is generated is profound.
The concept that MS is primarily a vascular disease can be traced back to 1863 when a researcher named Eduard Rindfleisch proposed that “the primary cause of MS is an alteration of individual blood vessels”. He based this interpretation on his consistent observations that a vein was present in the centre of each lesion. Over the next 100 years, the vascular basis for MS resurfaced every so often based on the close association of lesions with veins but never really took off due to a lack of any convincing evidence. The last main champion of the concept was Dr Roy Swank who thought venous blockages and resultant breeches in the blood-brain barrier were due to fat globules. This led him to advocate for his well known dietary therapy for relieving the fat-induced, vascular problems.
Over the last 60 years, the vascular hypothesis was completely overshadowed by the autoimmune theory for MS which came into vogue in the 1930s and which has become steadily more popular since that time. It must be emphasized that the vascular hypothesis has never been disproved; it has been simply ignored because of the complete focus on immunological aspects of MS.
Of course, with the discovery of CCSVI in virtually every person with MS, we finally have that elusive, convincing evidence that vascular problems are indeed a major part of MS. CCSVI marries all the vascular-related data gleaned from detailed studies of MS lesions with the huge immunological data base which has accumulated over the past 50 years. The two different data sets now fit very well together in a model in which impaired venous drainage causes breeches in the blood-brain barrier (vascular hypothesis) which then leads to autoimmune reactions (autoimmune hypothesis).
With the recognition of CCSVI and the resultant much better understanding of the MS disease process, one might expect that MS researchers and clinicians would be falling over themselves to redirect their efforts to take into account this major discovery. Unfortunately this is not the case and the main reaction from the clinicians is, at best, one of wait and see or, at worst, total rejection. One person with MS I know recently asked their neurologist about CCSVI and how they might get it treated. The neurologist became agitated and stated that CCSVI was nonsense and there was no evidence for it. I expect such an uninformed reaction is commonplace. MS clinicians are content to simply prescribe an MS drug and they don’t want to think about a completely new way of treating MS until they have to.
The MS research community has exhibited a similar, highly skeptical reaction to CCSVI and I expect they will not even consider incorporating CCSVI into their research plans until the data become so overwhelming they will have little choice but to do so. So where will this overwhelming evidence come from? The good news is that there are a few far-sighted researchers who have seen the obvious “paradigm shift” nature of CCSVI and are starting to undertake significant CCSVI studies. The most progressive of these are Drs Bianca Weinstock-Guttman and Robert Zivadinov of the University of Buffalo whose planned research is discussed by Ian Cook in this issue. I believe once the results of the Buffalo study are announced (2012?), CCSVI will experience a tipping point and everyone from researchers, to clinicians, to the main MS charities, will get on the CCSVI bandwagon.
Given the data we have, it is not a stretch to say that all persons with MS have impaired venous drainage which is actively, or potentially, contributing to their MS disease progression. Given this, it is not surprising that every person with MS who understands the implications of CCSVI wants to have their venous problems resolved by vascular surgery as soon as possible. Unfortunately very few medical centres are doing vascular procedures to relieve CCSVI and thus it is basically impossible for almost all persons with MS to get the important vascular treatments they need.
It is hard to know how the MS patient community can improve this appalling situation and get relief for both CCSVI and the great frustration many are feeling. It seems to me a patient revolt is needed and it is also essential that this unacceptable situation be widely exposed through the media. Perhaps persons with MS should follow the advice given in the 1976 movie, Network, and go to the window and shout “I am as mad as hell and I am not going to take this anymore” (http://www.youtube.com/watch?v=WINDtlPXmmE&feature=related).
Finally, another obvious question which needs to be answered is what nutritional strategies can be adopted to offset the effects of CCSVI. I will address this in my next column.
Source: direct-ms.org