The National Institutes of Health (NIH), with its pitiful funding, has been a thorn in the ME/CFS community’s side for decades. For decades advocates have thrown everything they could – heartbreaking stories, demonstrations, insults – at the NIH in...
Beginnings In 2016, Vicky Whittemore asserted before NANDSC (the National Advisory Council for the Institute for Neurological Disorders and Stroke (NINDS)) that a desperate need existed to bolster research for chronic fatigue syndrome (ME/CFS). (NANDSC Council is the...
I listened miserably to the sounds of silence broken by my occasional exclamations: “really?”, “no kidding”, “fascinating!”. During my two long sessions with Dr. Klimas, the recorder app on my phone had decided to record only my...
ME/CFS Rears Its Head Again A commitment to social justice runs in Carol Head’s blood. She founded a non-profit which has given away millions to support entrepreneurs who work on global poverty, and was a founding board member of another non-profit that tells the...
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...
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....
