Let me try to set out why I see the MS Society's position regarding CCSVI  as wholly insufficient and, indeed, sorely troubling coming from a Society which should be seeing first and foremost to the interests of the people today diagnosed with this disease.

For a  long time, the MS Society was against even the research of which it now boasts.

Even that research, to which it came late, and only after the most universal of outcry from its prime constituents, is very, very limited: it deals only with the statistical coincidence of CCSVI in MS sufferers.  It pointedly excludes an effort actually to treat people who have serious constrictions or blockages in their jugular veins.

Indeed, the MS Society was over months and months a vocal opponent to any kind of actual treatment, even in people for whom the traditional pharmaceutical treatment is doing no good and even in people whose veins are demonstrably blocked. This struck me as denying treatment to people BECAUSE they had MS, as strange way of treating one's prime constituents.  This was taken to the extreme of opposing even imaging of MS patients' necks, for fear that they might actually learn that their veins are blocked.  This struck me as, at the very best, paternalism.

The cold-hearted insistence on years of research into epidemiology prior to any treatment left an extremely sour taste in my mouth : (Ex: Angioplasty was developed to unblock coronaries, people dove right in and did it, because it made sense and was low-risk. The data came later. ) 

    1. MS patients are, on traditional treatments, condemned to predictable and unavoidable deterioration ;

    2. The Liberation treatment is virtually pain-free and almost entirely risk-free if done by angioplasty rather than stent;

    3. MS patients have been, in full awareness of the novelty of the treatment, been so keen to get it that they have even travelled in droves to get it in other countries;   

   4. The anecdotal evidence (anecdotal, but still evidence) is very compelling; many have spoken of dramatic improvement;   

  5. The MS Society position condemns thousands of sufferers to continued suffering, and perhaps to unavoidable worsening so that eventual Liberation treatment might be less effective; 

   6. The dollar equation is undeniable: the traditional pharma treatment costs several tens of thousands of dollars a year, per patient, and produces no improvement for many; the Liberation treatment is a very cheap procedure; 

 7. This terrible result appeared to be reached by boards and committees made up of neurologists  without any participation by intervention radiologists or by circulatory specialists (who do).  

All of this made me wonder just where the money goes ( we know too well where the money goes actually ) which donors give to the Society, and whether those in charge there weren't feeling just a little bit too comfortable.

What I would have liked to see would have been immediate and pressing calls not only for research but also for collection of data from funded clinical trials (not just statistical research), including use of some of the donors' money for that funding of actual trials.

We are now in a situation in which MS patients are actually being punished in Canada, by neurologists and the hospitals in which they work withholding follow-up treatment for those who felt compelled to get treatment abroad. This is orthodoxy and dogma taken to absurdity: if I get a broken leg treated abroad and have a follow-up problem, local health care sees to that follow-up. As far as I know, the MS Society has done nothing about seeing to this heart-breaking and perfectly avoidable problem.

So, I won't be sending any donation to the MS Society and will wait to see how things move over the coming year.

Mylène Therrien, Québec

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