Promises To Keep: NIH Commits to Reinvigorate Effort on ME/CFS (Cort blog)

[Simon]

Promises To Keep: NIH Commits to Reinvigorate Effort on Chronic Fatigue Syndrome - Health Rising

It's a long read - which I'm still working through - but really interesting on history, politics and most importantly the future of ME/CFS at the NIH

The news had been rumored for months - something big was happening at the NIH. The NIH indeed finally moved on ME/CFS in a big way but exactly how was unclear. Were we indeed in NINDS? Can we expect a major grant announcement (RFA)? What are the next steps?

It took some time but I got some answers. Put up your feet and check out a long blog on the NIH and ME/CFS. What we got. What we didn't get and what (hopefully) we can expect...

Seems ME/CFS is not in the NNIDS, but that may not matter.

 

[Scarecrow]

Does anyone have any more information on the 40 patient study at the NIH, which is planned for next year? How long will patients have been ill?

The NIH will soon begin an “intense” and comprehensive study of ME/CFS patients with acute flu-like onset at its Clinical Center – the largest research hospital in the world.
Collins stated the NIH would use the newest technology available to them.

The effort aims 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. Given the seriousness of the condition, I don’t think we have focused enough of our attention on this.