In many ways, I feel we're on the sidelines watching. I don't know that, as advocates, we have as much of a job to do these days. It feels like it's in the hands of the researchers.....because the neurologist have a unified message that CCSVI has been proven wrong and that it had been a crazy dangerous fad.
You and many in America underestimate the power of the patient advocate voice. I recommend that when these poor science papers are published a response from CCSVI patient advocates in sent to the journal and NMSS. It needs to say:
-IRs who use Ven and IVUS find stenoses (refs)
-Neuros who use xyz do not find stenoses (ref)
-expert MS patient questions why neuros do poor science and do not use gold standard methods.
-expert MS patient reads that treating the symptoms of CCSVI syndrome benefits pwMS (refs)
-expert MS patients cannot understand why neuros do not offer a treatment to pwMS with CCSVI syndrome as it appears to offer symptom relief for many (more that half) pwRRMS.
Researchers who write in journal hate to be challenged with solid references. This should be copied to the NMSS if they are sponsoring, with the question why is NMSS paying for poor science?. I hope that American CCSVI advocates will band together and write these letters. It does not require original research but a good knowledge of the subject, which you Cece definitely already have. (You will need a thick skin for replies).
In the UK if you compare the first NICE document (neuro led) with the final guidance they are very different. The difference was CCSVI advocates highlighting actual data, any times.
I hope you and others will do this task.