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Tag Archives: GET
AHRQ Evidence Review Changes Its Conclusions
Mary Dimmock has led the way on this issue, and is co-author of this post. In response to requests by U.S. patient organizations and advocates, the U.S. Agency for Healthcare Research and Quality (AHRQ) has issued an Addendum to its … Continue reading
Posted in Advocacy, Commentary, Research
Tagged accountability, AHRQ, case definition, CBT, CDC, DHHS, evidence review, exercise, GET, government, living with, NIH, P2P, pacing, politics, psychosocial, recommendations, speaking out, systematic review, treatment
47 Comments
Scandal
Give me 90 minutes. Whoever you are, whatever your connection to or interest in ME/CFS, take 90 minutes to listen to this discussion with academic/journalist David Tuller, DrPH (Lecturer at the School of Public Health and Graduate School of Journalism … Continue reading
Posted in Advocacy, Commentary, Research
Tagged accountability, action, AHRQ, awareness, case definition, CBT, CDC, exercise, GET, occupy, open data, PACE, pacing, politics, post-exertional malaise, researchers, speaking out, treatment
19 Comments
PACE-Gate
It is International ME/CFS Awareness Day, and what is most on my mind is the status of PACE-Gate: the controversy over the design, conduct and results of the PACE trial. PACE is the largest clinical trial in ME/CFS, and it … Continue reading
Posted in Advocacy, Commentary, Research
Tagged accountability, action, AHRQ, awareness, case definition, CBT, CDC, exercise, GET, May 12th blog bomb, occupy, open data, PACE, pacing, politics, post-exertional malaise, researchers, speaking out, systematic review, treatment
9 Comments
We Are All Noncompliant
I learned something about ME/CFS advocacy from a comic book. Now wait, stay with me. I realize this sounds bizarre, especially coming from me. I haven’t read a comic book since I was eight years old. Enter Bitch Planet, a … Continue reading
Posted in Advocacy, Commentary
Tagged accountability, action, CBT, CDC, DHHS, FDA, feminism, funding, GET, government, grants, living with, NIH, occupy, politics, priorities, recommendations, researchers, speaking out, treatment
20 Comments
Add Your Voice to the Call to Investigate PACE
(reprinted with permission) Twelve U.S. ME/CFS organizations have called on the Centers for Disease Control and Prevention (CDC) and Agency for Health Research & Quality (AHRQ) calling on them to investigate the PACE trial concerns outlined by David Tuller and … Continue reading
Posted in Advocacy
Tagged action, AHRQ, CBT, CDC, exercise, GET, government, PACE, pacing, politics, recommendations, researchers, speaking out
2 Comments
A Request That Should Not Be Ignored
Six scientists have sent a joint letter to the Editor of The Lancet asking for an independent re-analysis of the PACE trial data. The letter, published today on Virology Blog, is signed by Dr. Ron Davis (Stanford), Dr. Jonathan Edwards … Continue reading
Posted in Commentary, Research
Tagged case definition, CBT, GET, PACE, pacing, politics, psychosocial, researchers, speaking out
13 Comments
No CDC Funding for CFS?
ME/CFS advocates focus almost exclusively on research funding from the National Institutes of Health, and with good reason. But now it appears that funding for the Centers for Disease Control’s CFS program may be at risk in the 2016 appropriations … Continue reading
Posted in Advocacy, Commentary, Research
Tagged action, case definition, CBT, CDC, CFSAC, Congress, DHHS, exercise, funding, GET, government, IOM, living with, occupy, politics, post-exertional malaise, priorities, recommendations, speaking out, spending, treatment
225 Comments
Showing the Back of Their Heads
The final P2P report is published, and now it’s time to evaluate the quality of the recommendations and how well the process served ME/CFS patients. There are many good things in the P2P report, and I’ll be focusing on those … Continue reading
Posted in Advocacy, Commentary
Tagged action, AHRQ, case definition, CBT, CFSAC, DHHS, evidence review, funding, GET, government, grants, IOM, NIH, occupy, Oxford, P2P, politics, priorities, recommendations, researchers, speaking out, testimony
42 Comments
P2P Final Chapter
The final P2P ME/CFS documents are coming out today. I am severely crashed from family obligations, so in-depth analysis will take me a little longer than normal. But here are quick descriptions of the various articles to get you started: … Continue reading
Posted in Advocacy
Tagged action, biomarkers, case definition, CBT, DHHS, drugs, exercise, funding, GET, government, IOM, NIH, P2P, politics, priorities, recommendations, researchers
32 Comments
PACE: Grossly Exaggerated
On September 9, 2016, Queen Mary University of London released data from the PACE trial in compliance with a First Tier Tribunal decision on a Freedom of Information Request by ME patient Alem Matthees. The day before, the PACE authors … Continue reading →