sou wrote:It works the other way, too:
"scientific evidence racing behind the internet "
Exactly....
Patients also brought research papers from the internet to their IRs, back in 2009 and 2010, and that's what brought CCSVI to the attention of the IRs.
IRs speak the language of CCSVI (occlusions, angioplasty, luminal abnormalities, perfusion, elastic recoil, reflux, focal hypertension, venous congestion, CSA, ivus, diapedesis). Neurologists still don't speak the language.
edited to add: what I meant by agreeing with sou was that we'd compiled the research papers and everything relevant faster than it had receached the IRs who would then become our CCSVI researchers. We contributed to the process, we were the first to step forward to say, ok, unblock my veins. Not that it was internet evidence such as anecdotal evidence. We pushed this forward, we raised awareness, and good trials will be underway years earlier than they otherwise would have been, and that is a good thing, because we will get answers. Has everyone read Dr. Shannon's interview about the Canada trials? Dr. Shannon is a very good spokesperson and comes across as having a deep knowledge of trials and being relatively neutral about CCSVI, so it is all a matter of getting appropriate trial protocols that will answer the questions that we all still have. I know enough about CCSVI to know we have more to learn, and that trials will give us some of the answers.