I have multiple sclerosis, but I also have blocked veins. Why can’t I get my veins unblocked in Canada, just because I have pre-existing multiple sclerosis? I agree, treatment for any disease should be based on science, not hope (see editorial on page 1151).1 So I ask, what is the best way to gather evidence in this case? The Multiple Sclerosis Society of Canada wants to spend two years determining whether patients have blocked veins, while providing no treatment. If there are blocked veins, why not provide the treatment, then study the patient? Wouldn’t we gather more evidence that way?
In fact, I guarantee more will be learned. I flew to Bulgaria June 10 and had the “liberation procedure” June 14. The procedure has provided continuous gradual improvement. There might be only published evidence from 65 patients, but over 1000 people have received this treatment, with a substantial number of them showing noticeable improvement. When I told the people at my multiple sclerosis clinic that I was going to Bulgaria for the treatment, I asked them if they’d like to see me before I went and again when I returned. They replied that they were too busy. The lack of resources allocated by the Multiple Sclerosis Society of Canada and their actions demonstrate their lack of interest in pursing this novel treatment. Government funding needs to go to research programs that involve patients’ views.
I am more than willing to be a study subject and a patient advocate. By studying the outcomes of the liberation procedure, maybe the medical community can gather the evidence to prove what I already know.
Footnotes
For the full letter, go to: www.cmaj.ca/cgi/eletters/cmaj.100835v1#574346
REFERENCE
- 1.Stanbrook MB, Hébert PC. Access to treatment for multiple sclerosis must be based on science, not hope. CMAJ. 2010;182:1151. doi: 10.1503/cmaj.100835. [DOI] [PMC free article] [PubMed] [Google Scholar]