NIH takes action to bolster research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

[jimells]

I think it may be reflective of an uncomfortable compromise between Tag-You're-It, and CYA.

We're still orphans, but at least there is posturing for custody?

More like trying to avoid paying child support.

Cash Talks - Nobody Walks

Where's the cash, Dr Collins? Thirty years and waiting...

 

[jimells]

"According to the Centers for Disease Control and Prevention, ME/CFS is estimated to affect more than 1 million Americans, and has been reported in people younger than 10 years of age and older than age 70. ME/CFS is an acquired, chronic multi-system disease characterized by systemic exertion intolerance, <- that's different.

. . . "resulting in significant relapse after exertion of any sort. The disease includes immune, neurological and cognitive impairment; sleep abnormalities; and dysfunction of the autonomic system, which controls several basic bodilyfunctions.
<- the neurological and autonomic inclusion here is an excellent addition in the basic description of CFS from the past where is was tacked on as an afterthought and then only sometimes.

Sir Simon and pals have finally been cut loose by the NIH, haha. It won't be long before the insurers claim

Simon Who? Never heard of him.

 

[RustyJ]

I get the feeling now and again that govt initiatives like this NIH announcement are more about dealing with govt-preferred researchers rather than patients, not what patients want to hear, I know.

Already the cracks are showing. Consider this statement in Cort's latest blog, talking about the NIH announcements, bearing in mind that Cort does have conflicts of interest in this area:

There is also a potential downside to this study. The study clearly got it’s genesis from Ron Davis’s End ME/CFS project. Davis and Linda Tanenbaum met several times with NIH officials in an attempt to secure funding for their intense examination of ME/CFS patients. NIH officials were reportedly gratified by the brain-power Davis had enlisted in his project but funding was denied by NINDS. Now the NIH has turned around and is doing a similar project; i.e. Davis’s grand project now has competition.

As good as the NIH’s clinical study will be, given the choice between Davis’s project and the NIH’s one, the Davis project is the clear winner for the ME/CFS community.