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Tag Archives: government
RFA Ticker, 2/6/17
I have no words this week, friends. I’m tracking the numbers because that is all I can do. One announcement: The NIH Clinical Care Center study of post-infectious ME/CFS is now recruiting participants. You can see the flyer here, and … Continue reading
Posted in Advocacy, Research
Tagged accountability, action, funding, government, grants, NIH, politics, priorities, recommendations, researchers, RFA, RFA Ticker, speaking out, spending
13 Comments
RFA Ticker, 1/30/17
At long last, the promised RFAs are here. Last week NIH published the RFA for the Collaborative Research Centers and the Data Management and Coordinating Center. Unfortunately, my mother-in-law passed away last week. Between that and other sources of upheaval, … Continue reading
Posted in Advocacy, Research
Tagged accountability, action, funding, government, grants, NIH, politics, priorities, researchers, RFA, RFA Ticker, speaking out, spending
12 Comments
RFA Ticker, 1/23/17
Second verse same as the first. The wait continues. Two dates are coming: January 31st, by which Dr. Francis Collins said the RFAs would be issued. February 1st, on which NIH will hold another ME/CFS advocacy call. Call-in information has … Continue reading
Posted in Advocacy, Research
Tagged accountability, action, funding, government, grants, NIH, politics, priorities, researchers, RFA, RFA Ticker, speaking out, spending, treatment
8 Comments
RFA Ticker, 1/16/17
NIH issued no RFAs last week, but we have plenty to talk about after Dr. Vicky Whittemore’s presentation at the CFS Advisory Committee on Friday. Dr. Whittemore’s announcement was simultaneously welcome and disappointing. During her update to the committee on … Continue reading
Posted in Advocacy, Research
Tagged accountability, action, biomarkers, CFSAC, DHHS, funding, government, grants, NIH, politics, post-exertional malaise, priorities, recommendations, researchers, RFA, RFA Ticker, speaking out, spending
15 Comments
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
RFA Ticker, 1/9/17
So. Is anyone surprised that it is January 9th and we do not have the promised RFAs? I didn’t think so. Will we hear an announcement at the CFS Advisory Committee meeting this week? I don’t know. The question that … Continue reading
Posted in Advocacy, Research
Tagged accountability, action, funding, government, grants, NIH, politics, priorities, recommendations, researchers, RFA, RFA Ticker, speaking out, spending
32 Comments
Zero, Zilch, Zippo
Zero, zilch, zippo, nada, cero, null, nulla, sifr, nul’, ling, nialas, sero, naught. No matter how you say it, we got nothing. Despite the promise in October 2015 that a request for proposals would be issued “soon.” Despite Dr. Collins’s … Continue reading
Posted in Advocacy, Commentary, Research
Tagged accountability, action, funding, government, grants, NIH, politics, priorities, promises, recommendations, researchers, RFA, RFA Ticker, speaking out, spending
15 Comments
CFSAC Meeting Information and Logistics
The federal CFS Advisory Committee meeting is only two weeks away. This will be an in-person meeting, but will not be held in the Health and Human Services building. Denise Lopez-Majano and I reached out to HHS for important information … Continue reading
Posted in Advocacy
Tagged action, CFSAC, DHHS, government, occupy, politics, priorities, recommendations, speaking out, testimony
1 Comment
A Myalgic Carol
Or, A Most Merry Tale of Encephalomyelitis, by Joe Landson Dr. Stephen Straus was surely dead. Lo, he had been dead these nine-and-one-half years, but that made no difference to Ebenezer Scrooge, MD, PhD, as he locked up the Office … Continue reading
Posted in Commentary
Tagged biomarkers, case definition, CBT, funding, GET, government, grants, living with, NIH, occupy, pathogenesis, politics, priorities, psychosocial, researchers
20 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 →