Christopher's awesome letter to Ms. Aprile Royal of the Canadian MS Society:Share
July 19 2010
Mrs. Aprile Royal
Assistant Vice President
Medical Information & Education
Multiple Sclerosis Society of Canada
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 Some of the statements that you made only proved to me as an MS patient that the MS Society of Canada no longer represents me or the many ten of thousands of Canadians who have been diagnosed with Multiple Sclerosis.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.