ME/CFS gets new home within NINDS

[Merry]

Carol Head, Solve ME/CFS Initiative president, has just announced in an email that the National Institutes of Health has moved ME/CFS research to a new "home" at the National Institute of Neurological Disorders and Stroke (NINDS).

Read about this at the Solve ME/CFS initiative website:

http://solvecfs.org/nih-announces-new-effots-to-advance-mecfs-research?utm_source=getresponse&utm_medium=email&utm_campaign=research_1st&utm_content=Research+1st+News+|+November+|+SPECIAL+EDITION

"The National Institutes of Health announced today that it is taking two major steps to advance research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. NIH has assigned the National Institute of Neurological Disorders and Stroke (NINDS) as the lead of a multi-institute ME/CFS research effort and a re-invigorated Trans-NIH ME/CFS Research Working Group. NIH also is launching a research protocol at the NIH Clinical Center to intensely study individuals with ME/CFS. The move is a landmark one for ME/CFS, which has previously been housed in the Office of Research on Women’s Health and did not receive the attention or funds that a disease with its burden merits."

 

[Empty]

Really good news

 

[Cort]

Really big news. Check out this Atlantic Story for more - and the big study they're doing. More will be coming out and I will have a blog tomorrow.

http://www.theatlantic.com/health/a...for-chronic-fatigue-syndrome-research/413008/

“The effort aims to take advantage of the NIH Clinical Center, the largest research hospital in the world, to try to carry out every kind of imaginable analysis of the immune system, neurological system … metabolism … all of the things you'd want to know to try to get a handle on what is driving this very mysterious, puzzling disorder,” the NIH director Francis Collins said in an interview. “Given the seriousness of the condition, I don't think we have focused enough of our attention on this.”

 

[Cort]

Another good article from Jon Cohen who has written on ME/CFS before:

NIH Director Francis Collins told Science that some investigators have long shied away from studying ME/CFS because it has been a “tumultuous” research arena, with high-profile leads that imploded and a vocal advocacy community. The attitude among many researchers has been “maybe this is an unsolvable problem, let’s just work on something else,” Collins says. “I’m happy to say we’re countering that attitude rather strongly here.”

Gotta love this!

Collins says NINDS Director Walter Koroshetz is “determined to move pretty fast on this,” including soon issuing a new request for proposals to extramural researchers. “Give us a chance to prove we’re serious, because we are,” Collins says.

That's what I wanted to hear!

 

[Cort]

For what its worth - I am NOT convinced this is as big a step forward as it's been made out to be - I will have a blog coming up on Monday..

 

[Merry]

For what its worth - I am NOT convinced this is as big a step forward as it's been made out to be - I will have a blog coming up on Monday..

Ok, But until Monday's blog I can lie here in ignorant bliss.

 

[Cort]

I'm feeling a little better. Collins has said so much and he has so impressed the people he has talked to that hopefully it will all work out.