by Cort Johnson | Apr 22, 2019 | Advocacy, Homepage, NIH
The NANDS Council Working Group for ME/CFS Research is a NINDS (National Institute of Neurological Disorders and Stroke) effort designed to get NINDS off its butt (so to speak) and accelerate the research done on ME/CFS. It will ask NANDS – the group which... 
by Cort Johnson | Mar 30, 2019 | Advocacy, CDC, Homepage, NIH
The ME/CFS community has been making valiant stabs at advocacy for quite a while. The stabbing, though, is over. That kind of ad hoc effort disappeared when the Solve ME/CFS Initiative (SMCI) hired the first full-time advocate for ME/CFS ever – Emily Taylor.... 
by Cort Johnson | Mar 23, 2019 | Brain, NIH, Research
Clutching our little maps we gloomily stared at the rain pelting the grey labyrinth that was the NIH. We were utterly lost and very late for our appointment with Dr. Nath, the leader of the NIH Intramural study on ME/CFS. Thankfully, we eventually found our way and... 
by Cort Johnson | Feb 16, 2019 | Advocacy, Homepage, NIH
“We’re saying that ME/CFS is a program priority now…..Give us a chance to prove we’re serious – because we are.” Francis Collins “We recognize and empathize with the suffering experienced by people with ME/CFS and their frustration that so little is known... 
by Cort Johnson | Feb 12, 2019 | Homepage, NIH
Conferences are exciting because they’re virtually the only place one can go to learn about breaking research. The NIH ME/CFS conference, with its bevy of new faces that’s taking place on the NIH campus itself on April 4th and 5th, certainly fulfills that... 
by Cort Johnson | Sep 17, 2018 | Advocacy, Homepage, NIH
“I think some people are angry for good reason. This disease hasn’t gotten enough attention.” Vicky Whittemore My partner and I made our way to Vicky Whittemore’s office in a building off the NIH campus. Security was tight as always. We signed in...
