My point is, he sounds like someone who fears losing the support of the big money drug companies that help pay his salary. Non-objective at best. I think this new discovery is backing the NMSS into a corner. If they would be real and listen, they might be surprised at the outpouring of support from the folks who really matter: the patients!
I have never donated to the NMSS because I have never been sure that they were not being pressured and influenced about all of our options. This makes me even more convinced. Why does everything have to be such a fight? Why should these ideas be shot down so quickly when clearly there is a real effect on real people?
Maybe in time we can organize our own walk, call it the CCSVI walk, only it will be comprised of people like you who have improved dramatically and in that case we could change it to a run!
I totally agree with you, Pam. Its really scary if his motivation is his salary and not the lives of millions of people - the same people he claim to serve.
When people asked me why I never participated in any walks or donated money, THIS is the reason. I didnt have proof in the past, but now I do.
One thing that I always assume when dealing with people whom have letters behind their names (and use them), is ego. For that reason, I disdain, and then feel compassion for them. So lost... Then, I ignore their buzzing, for they are meaningless. A lot of egos are totally
money oriented. Assume that. Give me the MD who drives a 1973 Datsun, or walks to work.
The neuros have little to do with CCSVI, only give them the weight that they have to get you fixed up. It is the vascular people, and the interventional radiologists, etc. who will help us, and who will count. I believe that neurology has its place in our recovery, but we need to deal with the pathologies that precipitate the neuro effects, first.
Neurologists may have called the shots for pwMS for umpteen years, but they do not control the medical field.
My name is not really Johnson. MSed up since 1993