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Tag Archives: speaking out
For Serious?
It’s time for another round of “How Stupid Is This?” That’s a game I just invented. There are no rules, and definitely no prizes. Trust me. It’s a great game. It’s even more fun if you read this whole post … Continue reading
Posted in Advocacy, Commentary
Tagged accountability, CFSAC, DHHS, government, occupy, politics, speaking out, stupid, testimony
39 Comments
The Truth Is Not Always Nice
My parents used to tell me, “If you can’t say something nice, then don’t say anything at all.” But they also raised me to tell the truth, especially when speaking to authority. I have to say some true things today, … Continue reading
Posted in Advocacy, Commentary
Tagged accountability, action, activism, advocacy, advocacy groups, conspiracy, fatigue, living with, nice, noncompliant, occupy, PACE, pejorative, politics, priorities, researchers, speaking out, stereotypes, tired, truth, voice, Walitt
27 Comments
Bottom of the Ramp
In aggregate, 2017 turned out to be the biggest year of ME/CFS funding at NIH ever. But when I scratched the surface, I found bad news buried within the superficially good news. We are still at the bottom of the … Continue reading
Posted in Advocacy, Commentary, Research
Tagged accountability, action, biomarkers, funding, government, grants, NIH, orthostatic intolerance, pathogenesis, politics, priorities, researchers, RFA, speaking out, spending, suffering, treatment
22 Comments
CDC Website Update
In this guest post, Mary Dimmock summarizes the latest updates to CDC’s ME/CFS website. In early July, the Centers for Disease Control and Prevention (CDC) replaced its website for myalgic encephalomyelitis (ME), previously called chronic fatigue syndrome (CFS) and now … Continue reading
Posted in Advocacy, Commentary
Tagged accountability, case definition, CBT, CDC, CFSAC, DHHS, exercise, fatigue, GET, government, guest post, IOM, medical education, PACE, pacing, politics, post-exertional malaise, recommendations, speaking out, treatment
34 Comments
Expectations
Unrest, Jen Brea’s documentary about ME, will be shown on PBS stations around the United States on Monday night – January 8th. The film is already available worldwide, and is short-listed for an Oscar nomination (my review of the film … Continue reading →