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Tag Archives: IOM
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
Brian Vastag to Dr. Francis Collins
Yesterday, an open letter from science writer Brian Vastag to Dr. Francis Collins (Director, NIH) flashed around the ME/CFS social media-sphere like lightning. Then it spread among Brian’s high profile colleagues, like Martin Enserink and Carl Zimmer. Brian’s letter is … Continue reading
Posted in Advocacy
Tagged action, exercise, funding, government, grants, guest post, IOM, NIH, P2P, politics, post-exertional malaise, priorities, recommendations, researchers, speaking out, spending, suffering
13 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
Stuck? Four Months of Almost Nothing
In this guest post, Dr. Alan Gurwitt argues that it is time for ME/CFS advocacy to move on and move forward. The post first appeared on the website for the Massachusetts CFIDS/ME & FM Association, and is reprinted here with … Continue reading
Posted in Advocacy, Commentary
Tagged action, case definition, CDC, CFSAC, DHHS, funding, government, guest post, IOM, NIH, occupy, P2P, politics, priorities, recommendations, researchers, speaking out, spending
9 Comments
Awareness Reboot
Today’s post comes from Denise Lopez-Majano. She makes a powerful argument for the kind of awareness campaign we need. The release of the Institute of Medicine report resulted in an unprecedented amount of media coverage and public discussion. As has … Continue reading
Posted in Advocacy, Commentary
Tagged action, awareness, case definition, CDC, CFSAC, Denise Lopez-Majano, DHHS, funding, government, guest post, IOM, occupy, politics, priorities, recommendations, speaking out
30 Comments
This Week in Virology Covers ME/CFS
You may remember This Week in Virology (TWiV) from their XMRV coverage several years ago. I’ve remained an avid listener of the show, simply because it is such a great ongoing conversation about science. And TWiV has continued its coverage … Continue reading
Posted in Commentary
Tagged case definition, CFIDS Association, funding, IOM, IOM panel, NIH, occupy, politics, recommendations, researchers, SEID, speaking out, TWiV
23 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 →