This Is MS Multiple Sclerosis Community: Knowledge & Support

FYI My nuero just sent me an e-mail saying that the Annals of Nuerology will have a story about the death this month. (Wow - she's pretty cool!)

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!

Pam

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.

Jay123,

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.

/ibabble

Yannick,
I'm sorry you feel this is so negative. I happen to feel it is important to know since so many doctors and MSers look to the NMSS as a resource.
We need to look at all sources of information on CCSVI and insist they remain honest and accurate. This can only help our cause. Believe me, no one is more excited to scream and yell the praises of CCSVI than me! I am living proof that it works.

Thats great that a doctor is going to Canada, learn from Dr. Zamboni and then report to the public! That to me is a huge step that I haven't heard of happening yet anywhere else.

It's too bad he's from Florida (and the dang fool is going to Canada in the winter - lol) where I imagine the density of MS patients is not real high, I know I couldn't handle the heat.

Anyone,
Where is Bryd Center?

Hello. We would like to provide some additional information into how the National MS Society is moving CCSVI research forward to benefit people living with MS. We want to assure you that Society is steadfastly committed to pursuing all promising avenues of research that can lead to improved treatments and ultimately, a cure for MS and that we have been working as quickly as possible to pursue the new CCSVI lead. We encourage you to visit our website, http://www.nationalMSsociety.org , to keep on top of the latest news regarding these CCSVI efforts. In reading the comments, we thought some additional background information would be of interest

On December 16th, the Society invited investigators from around the world whose research is relevant to multiple sclerosis to apply for grants that would explore the CCSVI lead. We have already received numerous letters of intent from scientists in the U.S. and six other countries abroad. Full grant applications are due on February 9.

To ensure that this will be a coordinated worldwide MS Society strategic effort, in May 2010, an international panel of MS experts will conduct an expedited review of applications submitted in response to the special request for CCCSVI grant applications.

In June 2010, funding decisions will be announced and on July 1st, we anticipate work will start on the approved research applications.

Although the Society expressed a cautionary note in its comments concerning CCSVI and endovascular surgery, this does not reflect our reluctance to immediately investigate every opportunity that might lead to the end of MS, but reflects our natural concern arising from our knowledge that the proposed corrective CCSVI surgery has resulted in a number of adverse events, including at least one known death.

We will continue to keep people with MS and the general public informed of our progress in CCSVI research as well as the other research we are funding to stop, reverse and prevent MS through our Web site, e-communications and Momentum magazine. We appreciate the opportunity to participate in dialogue with you around this topic.

-Arney with the National MS Society

John R. Richert, M.D., will be joining the Company as a Senior Fellow in Neurology Research and Development and Nancy D. Richert, M.D., Ph.D., will be joining as a Fellow in Neurology Research and Development.

Dr. John Richert joins Biogen Idec from the National Multiple Sclerosis Society (NMSS), where he served as executive vice president for Research and Clinical Programs for the past five years.

Dr. John Richert joins Biogen Idec from the National Multiple Sclerosis Society (NMSS), where he served as executive vice president for Research and Clinical Programs for the past five years.