This Is MS Multiple Sclerosis Community: Knowledge & Support

Here is a link for those of you who are not familiar with the http://www.msnewschannel.com

This is the newsletter from Barrows Neurological Institute in Phoenix, Arizona. They do a lot of research and clinical trials while attempting to cure MS.

This weeks issue is full of information about new drugs and I thought some people here would find it informative.

gwa

oo

Lyon--I just got the same message.

But I know a little about Barrow Neurological Institute as I am a participant in their North American Research Committe on Multiple Sclerosis (NARCOMS) registry. Usually I get a questionnaire twice a year to complete, but yesterday I got a letter....Here I will vent:

It began, "This letter is to notify you of an important study designed to learn about the informal or unpaid care provided to people with MS to help them cope with the effects of MS on daily life. This study is funded by the National Multiple Sclerosis Society and is being conducted on behalf of the Society by researchers at Mississippi State University and the Public Policy Research Institute at Texas A&M University."

I will not participate in this study and, in fact, intend to write them that I think it is a waste of money and research effort, which would be better used to find the CAUSE of this dreadful disease! Can't these universities make a more valuable contribution? Can NMSS think this is the best use of research dollars? Besides, it seems to me I have read of similar studies and conclusions ALREADY DONE. Another case of re-inventing the wheel?!!!

Thanks for the opportunity to air my thoughts!

oo

I have no idea why the link I posted doesn't work. Just type in the link yourself and it should get you to the site.

There is a lot of info there and it is worth a look. I can't get this link to work either, but when I just type the link into the space for links it gets me there. WEIRD.

gwa

If you look close. There is a period after the word com

This link works,

http://www.msnewschannel.com

oo

Hi Lyndacarol,
Is it possible that the research is about the role of the caregiver? I think it would be great if they researched that and brought the results to the attention of government so that there could be some compensation.

NN