Lyon wrote:I hope so too but it's not obvious that much emphasis is being placed on the accumulation of evidence needed for believable studies. Are those patients being followed by Doctors to the degree and testing being done to the degree necessary to make a believable follow up study?
I've been wondering lately if it's going to be a moot point anyway. People appear to be lining up in droves for every doctor willing to do the procedure, so at some point you have to wonder if the large majority of patients are going to already be treated long before any study can prove anything about CCSVI.
I have been thinking for a while that the UBC study is not even going to get off the ground - at least not in the quest to find a relationship between CCSVI and MS (it's actually a broader study - including Parkinson's and Alzheimer's). In December 2009, there were two known places to be tested, and treated for CCSVI - Poland and Stanford. Then Stanford stopped. Three months later, we have India, Germany, several places in the US, clinics coming in the UK, at least 2 new clinics in Poland, Jordan, Melbourne and Sydney in Australia, Bulgaria...
The studies are moot. As ozarkcanoer commented, we seeking and receiving treatment, are a huge open-label study, with dozens more subjects every day. The tracking project here is a good measure - especially if those treated are diligent in their reporting. EDSS, and all of those are accepted measures, and are largely improving dramatically in those treated.
One of the aspects of the studies that I am not confident in, is that they are being run by the same neurologists, and MS Clinics, and funded partially by the same MS Societies - who don't believe in the concept, and have a lot to lose by proving any validity. Kind of like the climate change debacle, are they going to be affecting outcomes with bias, or even fudged numbers? For those mentioned to advise against even being tested is bizarre. It would be easy enough to prove or disprove the connection between CCSVI in MS in just a few months if every MS clinic in the world did a 30 minute doppler exam on regularly scheduled MS patients (using the proper protocol, of course). That would be hundreds of thousands world-wide. If they have a problem, send them to the experts - interventional radiologists, etc., and let them practice their expertise. Then, they can go back to the MS clinics for follow up. Voila.
The command and control structure of institutions is crumbling, and people are becoming anarchic. Health Canada, or whomever, can try to squash down treatment, but we are quite a bit more determined than they. I have MS, and will find out next week whether I have CCSVI. If I have it, I will get it treated however I can. I don't think that I will consult a neurologist. I think I will consult an IR.
My name is not really Johnson. MSed up since 1993