We can trust Cort Johnson to get access to movers and shakers in the ME / CFS world and break down news into easy-to-understand words. In his most recent report, he also finds out more details about the NIH announcement of increasing ME / CFS research efforts.In the lengthy piece, Cort tells of our conversations with NIH in trying to bring this change: “Meanwhile, Ron Davis collared Francis Collins at a meeting several months ago and got agreement that something needed to be done. They’ve been in touch ever since.”
In reference to the NIH study to be conducted at their hospital, Cort says: “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 . . . .”
Some have asked us if we will continue our ME / CFS Severely Ill-BIG DATA Study. The answer is yes, and we explain how it’s different from the NIH initiative in this post.
There’s been confusion about whether ME / CFS will now have an institute “home” in the National Institute of Neurological Diseases and Stroke. Cort’s report attempts to get to the bottom of that confusion.
He also gives some historical context that can reveal how ME / CFS research will now be different at the NIH.
