This Is MS Multiple Sclerosis Community: Knowledge & Support

The internet access

The Google search for "CCSVI multiple sclerosis" yielded over 650,000 results. The top result was a link to a clinic offering CCSVI evaluation services and MS liberation therapy (www.ccsvi-online.com), followed by the CCSVI Foundation (www.ccsvifoundation.org), which on its front page, reported on a patient who was denied the "liberation" treatment and filed a human rights complaint. Other links on the initial Google page led to pages explaining that there was a plot among neurologists to avoid referring patients to vascular surgeons because neurologists refused to believe in CCSVI (www.multiplesclerosissurgery.com). In addition, links to www.youtube.com presented over 700 videos of successful "liberation" treatment. The search on Yahoo! yielded over 80,000 results, including www.ccsvi-multiple-sclerosis.com, in which doctors willing to perform the liberation treatment could be located around the world, and www.ccsvi-for-ms.org, which advertised using the slogan "Liberation from Multiple Sclerosis - Free yourself".

Both Google and Yahoo! have several links accessing Facebook. The social network www.facebook.com contains dozens of discussion forums and social/charity events relating to CCSVI and MS. The largest CCSVI community on Facebook has nearly 30,000 participants. Although several participants are dubious about "liberation" treatment or have undergone it without success, the tone of the discussion is extremely optimistic.

During the European Congress of Multiple Sclerosis (ECTRIMS) in October 2010, in Gothenburg, Sweden, Zamboni explained that the term "liberation" originated from a radiologist talking about blood vessels with insufficient blood flow. The talk of "blood flow liberation in the vessel" mutated into "liberation treatment for MS" in very little time.

Folks, I have been asked to help in a Cochrane review of CCSVI research to date. Cochrane reviews are well respected and provide an opportunity to steer the medical community toward adopting new techniques quicker, if warranted, and to identify gaps in current research. I would like our CCSVI community to help by producing a bibliography of relevant research literature concerning CCSVI and its treatment. The people I'm working with probably have most of the important references we might supply, but this way we reduce the risks of gaps. Joan and Marie will help a lot, I hope, but I'm sure that there are others who can help, as well. Please send me a message and I'll e-mail you the draft objectives and initial bibliography. Info about Cochrane reviews can be found at http://www.Cochrane.org.
...Ted

The article opening this thread, as do most other recent articles, except those written by Zamboni, puts into question the very existence of ccsvi.

I don't agree, but even if it were true, at least we're stirring the pot. 150 years of MS research and we have very little to show for it. Finally someone (ie everyone involved in this research) has the cajones to challenge the status quo. That's what innovation is all about.