Cece wrote:I think docs need to see these sites too, to see that at least there are many patients who like them still believe in objective evidence.
Thanks, willowford, I'd hope the docs would take a look at what we're doing here and on the Facebook site before making any unflattering conclusions. The social media aspect of CCSVI is a phenomenon, it is something altogether new, but I do not think of it as a bad thing. In general MS patients here at these sites are intelligent and capable. There is also a risk/benefit analysis that we all make and some are more comfortable with risk or more drawn to the benefit than others. We do the best with the information we have and I think we are all aware that we do not yet know all there is to know about CCSVI.
We might not have the answers but we have the questions and that is more than a start.
('What effect does CCSVI treatment have on MS progression?' HUGE question which I am personally invested in knowing the answer to.)
I know you are certainly very aware of all the research out there. But are others really open to the idea that we need to verify all this?
I started to suggest this idea that evidence is what we need - and I was met with very prejudicial view (about me of all people... as if I'm important! lol).
Were these ideas about research that outrageous? (I know you don't think so, that's your goal here; but maybe it's only well received by patients with MS - maybe people are less open to these ideas from patients with other problems?)