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Monday, July 19, 2010

Christopher's awesome letter to Ms. Aprile Royal of the Canadian MS Society:
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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 Some of the statements that you made only proved to me as an MS patient that the MS Society of Canada no longer represents me or the many ten of thousands of Canadians who have been diagnosed with Multiple Sclerosis.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
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Friday, July 16, 2010

Home
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.

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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.
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Tuesday, June 22, 2010

More proof of CCSVI and MS connection

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.
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Monday, June 21, 2010

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.

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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.”

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Saturday, June 19, 2010

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 21st 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.

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Keep your sense of humor

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
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Wednesday, June 2, 2010

Post Liberation Update

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.
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