CCSVI and Multiple Sclerosis

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.

This Is MS Forums has many sections on research and discussion of CCSVI. Start here with their CCSVI Research section. They’ve done a good job at finding links to scholarly research.

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.

Independence

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.

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Multiple Sclerosis studies, especially about CCSVI, need to be done without ties to Big Pharma

A new article in the Annals of Neurology has made its way across various blogs and discussions about Multiple Sclerosis around the internet. It’s about CCSVI. And when we saw this article’s head line here, “Cerebrospinal Drainage Not Tied to Multiple Sclerosis,” along with the disclaimer:

Several of the researchers on this study disclosed financial relationships with pharmaceutical companies, including Pfizer, Sanofi-Aventis, and Merck-Serono.

Our first reaction was that any study that is to be done (especially one involving a treatment that could potentially make MS drugs a thing of the past)  the authors need to be free of any ties to pharmaceutical companies. The authors are:

  1. Claudio Baracchini MD
  2. Paola Perini MD
  3. Massimiliano Calabrese MD
  4. Francesco Causin MD
  5. Francesca Rinaldi MD
  6. Paolo Gallo MD, PhD

Here are the full conflicts of interest from the article:

C.B. has received compensation for being a board member, expert testimony, payment for development of educational presentations including service on speakers’ bureaus, and has had travel/accommodations expenses covered or reimbursed by Pfizer, Guidotti, Sanofi-Aventis, Novartis.

M.C. has been a member of the board of Merk-Serono, Sanofi-Aventis, and Bayer-Shering; a consultant for Merk-Serono and Sanofi-Aventis; given expert testimony for Biogen-Dompé Italy and Bayer-Shering; received honoraria from Merk-Serono, Sanofi-Aventis, and Bayer-Shering; and had travel/accommodations expenses covered or reimbursed by Biogen-Dompé Italy, Merk-Serono, Sanofi-Aventis, and Bayer-Shering.

P.G. has been a member of the board of Novartis, Biogen-Elan, Merk-Serono, Sanofi-Aventis, and Bayer-Shering; has been a consultant for Biogen-Elan, Sanofi-Aventis, and Bayer-Shering; has given expert testimony for Biogen-Dompé Italy, Sanofi-Aventis, and Merk-Serono; has received honoraria from Novartis Farma, Biogen-Elan, Sanofi-Aventis, Merk-Serono, and Bayer-Shering; and has had travel/accommodations expenses covered or reimbursed by University of Padova, Novartis Farma, Sanofi-Aventis, Biogen-Dompé Italy, Merk-Serono, and Bayer-Shering.

P.P. has received honoraria from Biogen-Dompé Italy, Sanofi-Aventis, and Merk-Serono; and has had travel/accommodations expenses covered or reimbursed by Sanofi-Aventis, Biogen-Dompé Italy, and Merk-Serono.

All of the above pharmaceuticals make Multiple Sclerosis drugs and have a large stake in those drugs. They cost a lot of money. See more about how much money here, here and here. And here as well.

This Foundation is not going to go into the details of the findings of the study. That is best left to experts in this field.

And as we find discussions on this study, we will post them here like the one at the MS blog on About.com. I threw in my two cents as well.

This Foundation just wants to point out the conflicts of interest to demonstrate that studies like these need to be done by those free and clear of the ties as shown above, like being members of the board of Pfizer, Sanofi and Merck. Seriously.

Much more information about CCSVI at The Reformed Multiple Sclerosis Society.