Saturday, October 30, 2010

CCSVI Tracking Project Begins to Make Results Available

For the last several months I have been involved in a patient-led online tracking project for those of us who have had the liberation procedure.  Now they have enough participants (over 300, with 200 of these already treated) and number of months of results that they are able to make the information available to anyone who is interested:  There are some fairly striking results, useful to those who are considering having the procedure done, or for those who have had it done, to compare their symptom changes to those of others.  However, in order to view graph results based upon user-defined criteria (for example: people over 40, only people with secondary progressive, only people with 6 months of results, etc) it looks like you need to be a member of the site.

Of course, this begs the question: why isn't the medical establishment and/or the medical research community doing this?

Also, if you have had the treatment and aren't entering your data, what are you waiting for?


  1. I have been trying tyo contribute to this tracking project, and twice have submitted a user name and e-mail - no reply. What did you do to have them accept your stats?

  2. It was a while ago I did it, so I'm not sure why you're having a problem... perhaps the person taking care of it is away for a few days. If you e-mail me, I'll send you her contact info.