“Just spell the name right please.” If you think any controversy is good news, you are mistaken. People who try to pose Chronic Cerebro-spinal Venous Insufficiency (CCSVI) as being opposed by the Multiple Sclerosis (MS) Society of Canada are wrong. The MS Society functionaries are not the bad guys. The only people being hurt by this manufactured controversy are people with MS and their families.
Being a past president of the MS Society of Canada, a former executive member of the International Federation of Multiple Sclerosis Societies and being married to a person with MS for the past 50 years, we have some knowledge of the disease and what is being done about it. When we took over the MS Society in the early 1970s, it had a budget of $180,000 per year and that much in the bank to pay for its next year’s grants to scientists.
Our first act as president was to bring together all the leading neuroscience researchers from across Canada at the time and demand that they give us more and better research into MS to fund. We told them that whatever they brought to us, that our scientific board thought was of merit, we would fund it. When we stepped down from the executive, we were funding over $10 million a year in research and research fellowships.
At the same time, Canada had taken a lead position with the International Federation of Multiple Sclerosis Societies. We helped to strengthen the societies that existed, we helped create new societies where they were needed and we accelerated the growth of world-wide funding for MS research. We made MS a world-wide cause. Co-ordinated research from around the world was working on MS.
Our only regret is that we have yet to solve the mystery of MS.
And then along came Dr. Paolo Zamboni of Italy. A vascular surgeon and professor, Dr. Zamboni postulated the theory that it was constrictions of the veins from the brain that cause MS symptoms. His ‘Liberation Treatment’ for MS patients was to use balloons and/or vascular stents to improve the blood flow. He had anecdotal success. He did not have the resources to do a full scientific study of his theory.
Both the American and Canadian MS societies set aside research funds to investigate Dr. Zamboni’s approach. Some experts thought it was worth checking out. Others were sceptical. You expect some differences of opinion. That is why you do trials and the layman can only keep an open mind.
But some people cannot wait. Politicians jumped on this side and that. Everyone likes a cause. Impatient patients wanted solutions now. That is understandable.
But to send patients off to places where the medical ethos is not as rigid as ours is endangering them. To take funds away from the controlled medical research and pour it into an unproved theory is to make a lie of all the hard work of people around the world who want the solution to MS. There will be a stream of reports available in the coming year from legitimate research into CCSVI. We hope it quells the controversy.
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Copyright 2012 © Peter Lowry
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