Further to previous blog posts here, here, and here, I have certainly noticed the tendency to resort to name-calling an ad-hominem attacks against those who dare question Dr. Paolo Zamboni and his as-yet-unproven theories about Multiple Scleroris.
Dr. Zamboni may yet be proven right - and even if his theory doesn't find a direct causal effect, he may have stumbled across something that may be useful in helping some patients with MS.
The fact of the matter is - a fact no amount of name-calling or ad-hominem attacks can erase - is that much of the research so far has not replicated his findings. I'm not sure why some people react so viscerally to that fact, but maybe it has something to do with the fact that so many are so hopeful that Dr. Zamboni is right that they possibility he may not be is simply too much to bear.
Dr. Steven Novella (who we interviewed on Aug. 4 - you can find that interview at our podcast page) has a great post at Science-Based Medicine
exploring these questions. He concludes:
Clearly there is a need for more research so that both patients and professionals can feel comfortable that CCSVI has been given a thorough investigation and we can say with confidence what role, if any, it plays in MS. The results, also, do not have to be black and white. While it seems unlikely that Zamboni has discovered the sole and ultimate cause of MS in most or all patients, it is possible he has found a significant consequence of MS. Chronic inflammation may result in venous insufficiency in some patients. This venous insufficiency may further play a role in worsening the clinical course in a subset of those patients, who may benefit from treatment. So CCSVI may ultimately play a minor but important role in the management of MS.
Or it may all turn out to be a figment of Zamboni’s imagination, spawned by the sincere hope of finding a cure for MS. Time and research will tell.
My open plea to the MS community, especially those who are going down the rabbit hole of conspiracy theories, is to keep this discussion about the scientific evidence. This is not the place for cheap conspiracy theories. I fear my plea will fall on deaf ears, but it never hurts to ask.
In terms of finding answers and testing the evidence, Maclean's magazine columnist Colby Cosh has a brilliant idea:
Zamboni claims to be able to tell MS sufferers apart from healthy individuals with virtually perfect accuracy just by looking at suitable medical images of the neck veins. There is no reason why the world should settle for his mere assurance that he can do so, since this ability ought to be simple to prove.(...)
So why not let Dr. Zamboni declare what images he requires, take 50 sets of snapshots of MS patients and 50 sets from healthy controls, and let him have at the pile of 100 file folders? Invite him to Alberta. Pay his expenses. Give him as much time as he needs. Have clinicians (and, preferably, some conjurors) present to establish proper, bulletproof double-blinding. The cost would probably come in at well under $100,000 and we would have our result instantly. Either he identifies the MS patients at a rate much better than chance or he doesn’t. If he scores close to 100%, as he has implied he can, then we would have strong reason to believe that vein structures are associated with MS.
UPDATE: I've often said that anecdotes are not evidence, but since so many anecdotes are being presented as such, it seems appropriate to include this:
Neil Pierce, president of the Alberta division of the MS Society of Canada, said he knows other patients who don't want to publicly share their stories of disappointment, after the liberation procedure failed them, because of the backlash they expect to face from people within the MS community. "It's been so divisive," he said.
(...)For six weeks after undergoing the controversial therapy for her MS, May Feitsma said she felt immense relief, energy and hope. But the degenerative disease ultimately again chained her breath, hands, feet and head.
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