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Tag Archives: P2P
RFA Ticker, 12/12/16
It’s December and the news we’ve all been waiting for – the announcement of ME/CFS RFAs – has not come. But other things of note have been happening. On the RFA front, NIH has passed half a billion dollars in … Continue reading
Posted in Advocacy, Research
Tagged accountability, action, funding, government, grants, NIH, P2P, politics, priorities, recommendations, researchers, RFA, RFA Ticker, speaking out, spending
9 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
Staying the Course to Where?
Dr. Francis Collins, Director of the National Institutes of Health, made a request of the ME/CFS community. During the March 8, 2016 NIH telebriefing, Dr. Collins said: So please take our commitment with great seriousness. Please also stay the course … Continue reading
Posted in Advocacy, Commentary, Research
Tagged accountability, action, biomarkers, case definition, CFSAC, DHHS, drugs, funding, government, grants, NIH, P2P, politics, priorities, recommendations, researchers, RFA, speaking out, spending, treatment
17 Comments
Someone Had To Say It
A long story about this moment in ME/CFS research and advocacy by journalist Virginia Gewin was published in Mosaic, a publication of the Wellcome Trust today. The article includes a great profile of Dr. Lenny Jason, coverage of the PACE … Continue reading
Posted in Advocacy, Commentary
Tagged action, DHHS, FDA, funding, government, grants, NIH, P2P, politics, post-exertional malaise, researchers, speaking out, spending
11 Comments
The NIH Plan
(updated November 9, 2015) Unless you have been avoiding the internet for the last week, you already know that NIH has made a big announcement regarding its plans for ME/CFS research. Dr. Francis Collins has made some remarkable and welcome … Continue reading
Posted in Advocacy, Commentary, Research
Tagged action, biomarkers, Collins, DHHS, funding, government, grants, NIH, P2P, politics, priorities, recommendations, researchers, RFA, spending
23 Comments
CFSAC Testimony, Jennie Spotila, August 18, 2015
Unfortunately, I am too sick to offer public comment by telephone for the August 18-19, 2015 meeting of the CFS Advisory Committee. I submitted these written comments for the record. Thank you to all of the advocates who are speaking … Continue reading
Posted in Uncategorized
Tagged action, CFSAC, DHHS, funding, government, grants, IOM, living with, NIH, occupy, P2P, politics, priorities, recommendations, researchers, speaking out, spending, testimony
28 Comments
The Return of CFSAC
Publicly, the CFS Advisory Committee has been MIA this year. There were some comings and goings, and general silence, but now there is finally movement to report. UPDATE July 28, 2015: The Federal Register notice for the meeting has been … Continue reading
Posted in Advocacy
Tagged CDC, CFSAC, DHHS, funding, government, IOM, NIH, P2P, politics, priorities, recommendations, speaking out, testimony
7 Comments
The Government Attitude Needed
Government/advocate interactions frequently happen on a public stage, where everyone is rightly careful about what they say. Sometimes, though, we can get access to behind the scenes communication. In emails that the authors probably believed would remain private, we can … Continue reading →