I would encourage you to investigate and bring this member of the Committee that oversees MS research in Canada to order. This type of behaviour is inacceptable and unbecoming to a member of the medical community. It also further tarnishes the image of the Multiple Sclerosis Society of Canada – an image that is, in my humble opinion, beyond repair at this time.
To refer to the CCSVI the movement as cultish - a movement that has given quality of life to many Canadians who have sacrificed their life savings for a glimpse of hope as they suffer with an incurable, life-long disease for which there is no medical treatment for the progressive forms – is simply inexcusable. This provides us with a glimpse of the disdain that Dr. Freedman has for his patients. On top of that, to know that this researcher, who has received almost $ 7 million dollars in research money from the MS Society of Canada (according to your research grant documents), money raised by volunteers to your organization, is truly pathetic.
If you continue to include neurologists who make outrageous remarks on your committees, and allow them to influence the medical decisions that affect the lives of 75,000 Canadians, you too are showing your disdain to MSers by associating yourself with this person or any other who lower themselves by uttering vile comments of this nature.
According to the list of disclosures in the “Abstracts: 26th Congress of the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS) 15th Annual Conference of Rehabilitation in MS” (http://msj.sagepub.com/content/16/10_suppl/S7.citation) Dr. Mark Freedman is: Advisor, consultant, steering committee member or speaker for and has received personal compensation from the following companies - Bayer Healthcare, Biogen Idec, Teva Neuroscience, Merck Serono, Novartis, Sanofi-aventis, Pfizer, Genentech . He is also the chair for the Canadian network of MS clinics (http://www.cnmsc.org/ContactUs.aspx). It seems to me that the type of emotional, outlandish reaction that he had to this patient is comparable to the reaction that we get from a wild animal when backed into a corner. Knowing that Dr. Freedman is a participant in one of the Canadian CCSVI studies that received funding is but a farce to the general population. However, to people living with MS this represents an influential strong-hold on the research funded by the MS Society of Canada.
Do I believe that CCSVI will be the answer to all of the questions we have about MS.....I certainly do not. But I do believe that it is a very interesting emerging theory that will only be squashed by the incompetency of Canadian researchers. Now I understand why Dr. Zamboni himself was quoted as saying that the Canadian and American studies are doomed to fail. Of course they are – they were designed to fail.
Furthermore, you know, Mr. Savoie, that the influence that the MS Society of Canada had on the decision of the Canadian Institutes of Health Research, are simply smokescreens to buy you more time. As for the Canadian studies that received funding from the MS Society of Canada, only one of the four studies have participants who have not been documented as being anti CCSVI. That your committee of international experts would even allow Dr. Freedman to participate as a secondary researcher in this important issue goes beyond my capacity to understand and beyond my willingness to forgive a Society that exists only because 75,000 Canadians suffer from an incurable disease, and that feeds off the desperation of these same people.
Since Dr. Freedman opened the door to the theme of “cultish” behavior, I’ve thought about what being in a “cult” actually means. Some characteristics of cultish behavior are synonymous with mind-control. Point one for Dr. Freedman. Other characteristics are ad hominem attacks on those who dare to think differently. Point two for Dr. Freedman. Cult leaders often command the utmost respect and require unquestioned obedience. Point three for Dr. Freedman. I`ll stop there, as I believe I have made my point very clearly as to where I am going with this.
I have no doubt that Dr. Freedman is a commendable researcher. He has probably done his best with the knowledge that he had. But to resist a change or a shift in paradigm and to think that he knows all about the history, origins, the causes of MS would be an outrageous statement on his part. Dr. David Hubbard, a neurologist from California has stated: “Forty years and billions of dollars of research into MS has yielded nothing; viral and autoimmune theories of MS remain unproven”. Not one publication of any MS Society or pharmaceutical company world-wide can state with absolute certainty that MS is solely an autoimmune condition. Yet this is where the majority of research dollars are funneled.
In defense of Dr. Zamboni, he stated from the very beginning of his research that he needed help. His original study may have had flaws, and his message has always been....let`s look into this link together. He does not seek to control the outcomes of his study, but rather seeks to work with others who will help him investigate this emerging theory. He never said that he could cure MS patients, or that it was the “be all end all” to MS therapy. All he wanted to do was to help those who suffer from MS, and offer them improved quality of life. I find it suspect that rather than wanting to investigate the theory, the researchers associated with the MS Society of Canada want to bury it. Or maybe it is a situation where they want to manipulate the outcomes to make it look like “they” have found the “answer” to MS. Whatever it is, as a patient with MS, and as a friend to many people with MS I officially request the resignation of Dr. Mark Freedman from any committee or research project associated with the MS Society of Canada. I would also request that he be permanently barred from any form of influence on research decisions in the MS Society of Canada`s numerous research boards.
Sincerely and respectfully,
Christopher ALKENBRACK
xxxxxxx, Nova Scotia
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