Friday, December 11, 2009

More testing sites and studies

MSers all over the world have been organizing to pressure MS societies, researchers, doctors and health officials to take the CCSVI theory seriously.  In Canada one private clinic has started doing CCSVI testing (though it's unclear if they know what they're doing at the time I write this) and talk of another opening in Gatineau in the NewYear.  It appears that researchers in Amsterdam want to do a study (after talking to Dr. Haacke of McMasters U), and it looks like something similar may start up in Western Australia.  US MSers are organizing letter-writing campaigns to get other American research centres to study CCSVI.  They are also "catologuing" big name researchers and clinicians according to whether they are open to the idea of CCSVI as a possible cause of MS.

Certainly there is a lot of suspicion (to put it mildly) that many doctors and researchers are either in the pockets of "Big Pharma" or have so much invested in the "autoimmune theory" that they aren't being open-minded.  It gets quite nasty in some of the discussion boards, and some of the comments in a CCSVI Facebook site had to be deleted: someone reported the comments as abusive.

Unfortunately, while a few of the suspicions might have a basis in fact, I worry that for some people it is becoming more about the battle than about finding out the truth about CCSVI and MS.

And I should point out that if CCSVI truly is what instigates MS, nobody is arguing that it doesn't also become an autoimmune disease after the effects of CCSVI (especially iron passing the blood-brain barrier) begin to result in damaged brain cells... it seems that it is well known that damage to axons (which the iron would cause) results in an autoimmune reaction, which then goes on to cause its own damage as it "over-reacts".  In one interesting discussion thread, someone proposed the hypothesis that the CCSVI induced inflammation is what causes relapsing/remitting (RR) MS because the damage is temporary, but as the CCSVI condition continues, the iron in the brain and the auto-immune reaction kick in, resulting in the permanent damage seen in secondary progressive (SP) MS.

There have also been a few posts where a small number of MSers have indicated that CCSVI wasn't found in their assessments, so maybe there is still another way that MS is initiated, even if CCSVI is found to be the usual cause.

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