The Parliamentary Sub-committee on Neurological Health

is meeting on Thursday to discuss CCSVI, so a number of TiMSers who just found out about it are sending them e-mails.  This is what I sent:

Dear Committee Members,

I would first like to thank you for addressing the topic of CCSVI in your deliberations.  In this brief I would like to speak to three main issues:  the possible impact of CCSVI research on MS, the way that the CCSVI theory has been discounted by vested interests, and the fact that MS sufferers must leave Canada in order to be competently tested and treated.  My point of view is that of an MS sufferer with secondary progressive MS, who has spent the last few months researching the topic, and who has recently returned from Poland where I was tested and treated for CCSVI.

The cost of MS in terms of its impact on our health care system and in terms of lost productivity are huge, and investing in research into a condition that is, at the very least, highly correlated to MS is likely to pay very high dividends.  The evidence that links CCSVI to MS is very strong and the theory that CCSVI is a causal factor in MS is bolstered by years of independent research that found interesting phenomena in MS patients such as those concerning abnormal blood flows, iron deposition and brain cell degeneration that pre-dates any immune system reaction. The possibility that CCSVI may be a major causal factor in the initiation and progression of MS has given those stricken with the disease the first real hope that the progress of the disease might actually be stopped.  Until now, all we have had available to us are very expensive drugs that sometimes slow the progression of the disease.  The potential payback of this new area of research in terms of benefit to the quality of the lives of MS sufferers is incalculable.

There are MS experts who have gone so far as to call the CCSVI evidence a hoax, or to demand a level of proof of its authenticity that they do not demand of the drug therapies they administer.  I would like to think that these are the reactions of otherwise thoughtful and caring people who have just been confronted by a paradigm shift that throws their entire belief system on its head, that says that much they believed to be the truth throughout their careers might be completely wrong.  However, it should be recognized that MS patients who are seeing their abilities and/or faculties degenerate on a daily basis cannot wait for these experts to slowly change their minds and reach a consensus concerning their previous errors.  Nor can you expect these same unfortunate MS sufferers to be temperate in their reactions to experts who do not even bother to look at the evidence before denigrating the idea that CCSVI could be the most promising new approach to MS treatment seen in a generation.

While I  believe that it is critical that a concerted research effort be undertaken into the nature and treatment of CCSVI as soon as possible, that should not be used as an excuse in delaying the testing and treatment of the condition.  Whether or not CCSVI is a major contributor to the initiation and/or progress of MS, it is a real pathological condition that should be treated.  It is a disgrace that some of the health community go so far as to say that people should not be tested for the condition, much less treated if it is found in a patient.  It is ridiculous that vascular specialists are being dissuaded from treating MSers for this vascular deformity (that almost certainly is not good for the body) just because it has not yet been “proven” to halt the progression of the disease.  Based upon my own research into the subject, I believed that there was a strong possibility that I had CCSVI.  Given the prevailing attitude of the medical community (or at least that part of it that “owns” MS), I have not been able to find an interventional radiologist or vascular specialist to assess me for the condition.  Even if I had found one to do the assessment, there was nobody (to my knowledge, at the time) in Canada to treat the condition if found, in part because these specialists were being “warned off” from doing their jobs on MS patients.  I was forced to go to Poland to be assessed and, ultimately, treated for CCSVI.  I had the financial resources to do it, but many MSers (who are often on disability) don’t.

I hope that this committee can see why CCSVI research is a good investment for Canada, and why assessment and treatment of CCSVI is the right thing to do.