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Category Archives: Commentary
A Big Helping of Defamation
I’m going public with an incident that exposes the dirty underbelly of the ME/CFS community. It’s not the first time I’ve been personally targeted, and surely won’t be the last. But bullying and defamation directed at me, or any other … Continue reading
Posted in Advocacy, Commentary
Tagged government, living with, occupy, P2P, speaking out, truth
58 Comments
Illness Beliefs (or Why I Am Not an ME/CFS Activist)
Today, Joe Landson shares his thoughts on how the false illness beliefs (or even cognitive bias) among scientists is holding our field back. Joe says it is time to tear down the walls and think horizontally – to the horizon, … Continue reading
Posted in Commentary
Tagged case definition, guest post, NIH, pathogenesis, priorities, psychosocial, researchers, speaking out
9 Comments
Evidence Review Comments Preview
This post comes via Mary Dimmock, Claudia Goodell, Denise Lopez-Majano, and myself. You are welcome to publish it on your site with attribution and a link back to this post. You are also welcome to use this (and other material … Continue reading
Posted in Advocacy, Commentary
Tagged action, AHRQ, case definition, DHHS, evidence review, exercise, funding, GET, government, NIH, occupy, P2P, politics, priorities, recommendations, researchers, speaking out, treatment
24 Comments
They Know What They’re Doing (Not)
This post comes via Mary Dimmock, with assistance from Claudia Goodell, Denise Lopez-Majano, and myself. You are welcome to publish it on your site with attribution to Mary Dimmock. Last week, Jennie Spotila and Erica Verillo posted summaries of … Continue reading
Posted in Advocacy, Commentary
Tagged action, AHRQ, case definition, CBT, DHHS, drugs, evidence review, funding, GET, government, guest post, NIH, occupy, P2P, politics, post-exertional malaise, priorities, recommendations, speaking out, treatment
18 Comments
A Review of the P2P Systematic Review
The draft systematic evidence review on the Diagnosis and Treatment of ME/CFS was published online last week. It’s a monster – 416 pages in total. I know many ME/CFS patients may not be able to read this report, so in … Continue reading
Posted in Advocacy, Commentary, Research
Tagged action, AHRQ, case definition, CBT, DHHS, evidence review, GET, government, occupy, P2P, politics, priorities, recommendations, speaking out
44 Comments
Burning Underground
Just over a year ago, advocate Leela Play noticed something odd on a federal contracting website. What she found was a notice of intent to award a sole source contract to the Institute of Medicine to create clinical diagnostic criteria … Continue reading
Posted in Advocacy, Commentary
Tagged case definition, DHHS, government, IOM, occupy, politics, recommendations, speaking out
11 Comments
P2P: The Question They Will Not Ask
by Mary Dimmock and Jennie Spotila The most important question about ME/CFS – the question that is the cornerstone for every aspect of ME/CFS science – is the question that the P2P Workshop will not ask: How do ME and … Continue reading
Posted in Advocacy, Commentary, Research
Tagged case definition, DHHS, government, IOM, NIH, occupy, P2P, politics, researchers, speaking out
38 Comments
Guest Post: Longtime Patient, New Advocate
I am very pleased to share this guest post from Darlene Prestwich in which she shares her experiences as a new(ish) advocate. I’ve been doing this so long, sometimes I forget what it was like to jump in the deep … Continue reading
Posted in Advocacy, Commentary
Tagged coping, IOM, living with, occupy, pacing, politics, speaking out, stress
12 Comments
Parsing CFSAC
I feel like a broken record, saying that the June 16-17th CFS Advisory Committee meeting was frustrating. This meeting struck me as a tangle of threads that can only be understood by teasing them apart. There were signals buried in … Continue reading
Posted in Advocacy, Commentary
Tagged case definition, CDC, CFSAC, DHHS, government, NIH, occupy, P2P, politics, priorities, recommendations, researchers, speaking out, testimony
17 Comments
CFSAC: Stand Up for Your Work
I delivered this public comment by telephone at the December 3, 2014 CFS Advisory Committee meeting. This committee’s legitimacy is at stake. Nine months ago, your March meeting recommendations were substantially altered after your public vote. Documentary evidence that I … Continue reading →