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Tag Archives: CDC
Comment by Terri Wilder, 1/12/17
Terri Wilder made these remarks at the January 12, 2017 meeting of the CFS Advisory Committee. I’m pleased to publish her complete comments, with her permission. Good Afternoon- My name is Terri Wilder and I’m a person living with ME. … Continue reading
Posted in Advocacy
Tagged accountability, action, CDC, CFSAC, DHHS, exercise, fierce, funding, GET, government, grants, living with, NIH, occupy, politics, priorities, recommendations, speaking out, spending, testimony, treatment
26 Comments
CFSAC Around the Corner
The next meeting of the CFS Advisory Committee will be held Thursday, January 12th, and Friday, January 13th. This is an in-person meeting, and will also be webcast. Note that the Thursday meeting runs from 12 pm to 5pm, while … Continue reading
Posted in Advocacy
Tagged accountability, action, CDC, CFSAC, DHHS, funding, government, NIH, occupy, politics, priorities, recommendations, speaking out, testimony
8 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
Posted in Advocacy, Commentary, Research
Tagged accountability, AHRQ, CBT, CDC, exercise, GET, living with, PACE, pacing, psychosocial, recommendations, researchers, speaking out, treatment
18 Comments
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
CFS Advisory Committee Meeting Outcomes
The CFS Advisory Committee is charged with advising the Secretary of Health and Human Services on issues related to ME/CFS. HHS has a very patchy record in its responses to CFSAC recommendations, but the committee’s public meetings remain highly significant. … Continue reading
Posted in Advocacy
Tagged action, CDC, Centers of Excellence, CFSAC, DHHS, FDA, funding, ME, NIH, politics, priorities, recommendations, SMCI, speaking out, spending, testimony
7 Comments
CFSAC Comments, Terri Wilder
Editor’s note: Terri Wilder made these remarks at the May 18, 2016 meeting of the CFS Advisory Committee. I’m pleased to publish her complete comments, with her permission. For new readers, ME refers to myalgic encephalomyelitis, a neuroimmune disease. Good … Continue reading
Posted in Advocacy
Tagged action, CDC, FDA, funding, government, NIH, occupy, politics, priorities, recommendations, researchers, speaking out, suffering, testimony
48 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
#MillionsMissing
For as long as I have been an ME/CFS advocate, I have heard people say we should protest/take to the streets/be more like ACT UP. But for the most part, demonstrations have been small (even one woman) shows. That is … Continue reading
Posted in Advocacy
Tagged action, CDC, clinical trials, DHHS, drugs, FDA, funding, government, grants, living with, medical education, NIH, occupy, politics, priorities, recommendations, speaking out, spending, treatment
9 Comments
CFSAC Public Comment, January 2017
I prepared comments for the January 13, 2017 CFS Advisory Committee meeting, but when my time arrived I decided to wing it. Below is my best reconstruction of what I said, a mixture of my prepared and spontaneous remarks. Start … Continue reading →