As promised, this Foundation will be starting our own CCSVI section. It is theorized that MS may indeed be a vascular disease and that the resulting destruction of myelin comes from iron deposits in the brain (due to lack of blood flow) which triggers the autoimmune response. However, we’ve been a bit slow in fact-gathering, but there are so many valuable sources of information already on the web, so we are going to start with a compendium of those sites.
The Reformed Multiple Sclerosis Society was started much like this Foundation because of one’s spouse fight for another’s treatment. Mr. Steven Simonyi-Gindele began the Society after his wife, Ruth, who suffers from Multiple Sclerosis, had the treatment for CCSVI.
Wheelchair Kamikaze, Marc, has written extensively on the procedure. Start here with his posting about CCSVI and his own experiences with it. It’s well-written and extremely informative. I urge you all to read his posting.
On Facebook, you can find the CCSVI in Multiple Sclerosis page. The comments from MS sufferers who have had the procedure are insightful and a good way to get in touch with someone you can talk to who has gone through the venoplasty.
Direct-MS dot com (DIRECT-MS, short forDIet REsearch into the Cause and Treatment of Multiple Sclerosis) has an information section on CCSVI. They are a Canadian group begun by families affected by MS and are now channeling most of their donation money into CCSVI research.
Finally on the list, a site begun by MS patients, is Venous Multiple Sclerosis Hypothesis | CCSVI and the goal is to gather all information about CCSVI. From their About Us page:
Who are we?
We are MS patients who want to give the research of the CCSVI hypothesis a chance simply by informing about it.
This project was founded 22 July 2009 and announced 6 Aug 2009.
If you want to contact us please use our contact form.
csvi-ms.net is an unbiased information platform for everyone interested in multiple sclerosis.
This web site is not sponsored and does not show ads. We work in our spare time on this web site and pay our expenses ourselves.