Neurologists and other self-professed experts on MS want to think that our belief in CCSVI stems, essentially, from ignorance. They want to believe that we have blind faith in some new discovery that’s been promulgated by a small group of people who somehow have an interest in this theory - and that we need to be protected from being emotionally (and perhaps physically) harmed in the event that we’re mistaken.
Certainly (the thinking seems to be), we shouldn’t be treated, because the treatment - assumed to be ineffective - does more damage than the disease.
But an interesting thing happened on the way to the 21st century: The Internet. Suddenly, previously isolated people could easily form communities and share information. It is not hyperbole to say that the level of information sharing is unlike anything seen in history: it’s instantaneous, global, cheap, durable, personal, public, and accessible.
Within the archives of a web site like ThisIsMS, you can follow the disease course of a large number of individuals. The history of these people begins well before they find out about CCSVI. You can see their drug regimes, symptoms, prosthetics, relapses and remissions. It can be heartbreaking, but people have been sharing this information for years, in order to help and support one another.
The members of ThisIsMS did not suddenly appear along with the emergence of CCSVI. Instead, the introduction of CCSVI into the lives of people with MS is part of the ongoing self-documentary of these people’s lives.
The archetypal example of this is Joan, the well-known “Cheerleader” of the CCSVI movement. Joan popularised Dr. Zamboni’s work by making his results known on ThisIsMS. She tracked down interventional radiologists in the US, and encouraged others to do the same, sharing techniques and numbers. Joan posted her thoughts as she took her husband on a long journey which resulted in the curing of his constant and crippling fatigue and the complete remission of his MS.
But Joan’s claims about CCSVI helping her husband would not be taken seriously if she hadn’t been an active member of the ThisIsMS community well before she learned about CCSVI. Joan had published a substantial medical history prior to her discovery of Zamboni’s work - and she is not alone. There are dozens of individuals at ThisIsMS who have long histories of posting about their symptoms and quality of life prior to finding out about and posting of their experience with CCSVI treatment.
The upshot is that we believe in CCSVI not because some stranger has posted about it on the internet, but because the person is no longer a complete stranger: they have provided us with documentary evidence of their lives which was written long before they had even heard about CCSVI. Their writing continues beyond the discovery of CCSVI to their liberation treatment, in which we find that their lives have almost uniformly been improved by the treatment.
We believe in CCSVI because we are part of a community who has watched it unfold. Neurologists and GPs are not generally part of that community. And this is why they don’t understand.
Far from being ignorant, those of us who have followed CCSVI on ThisIsMS are better informed and have more scientific evidence at our disposal than the denialists who tell us that CCSVI is, at best, unlikely.
The evidence for CCSVI is overwhelming, and despite the claims of professional scientists, it’s far from anecdotal. I hope to explore the scientific basis for this claim in a future posting.
