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Tag Archives: researchers
Best Practices
How can people with ME be more engaged in research? I mean really, meaningfully engaged from the design phase all the way through to the dissemination phase? I have an answer! With the help of #MEAction, I led a group … Continue reading
Posted in Advocacy, Research
Tagged action, funding, government, grants, NIH, participation, partnership, patients, priorities, recommendations, researchers
11 Comments
RFA Ticker, 2/20/17
Following an excellent suggestion from J.A. on last week’s post, I have added a line to the table of cumulative RFA numbers. This line will track the RFA dollars committed to ME/CFS. I don’t expect it to change this year. … Continue reading
Posted in Advocacy, Research
Tagged accountability, action, funding, government, grants, NIH, politics, priorities, researchers, RFA, RFA Ticker, speaking out, spending
Comments Off on RFA Ticker, 2/20/17
RFA Ticker, 2/13/17
NIH issued one RFA last week, for cellular therapies to treat radiation injuries. In that one RFA, the National Institute of Allergy and Infectious Diseases committed $4 million for FY 2018. The maximum project length is five years, although future … Continue reading
Posted in Advocacy, Research
Tagged accountability, action, funding, government, grants, NIH, politics, priorities, researchers, RFA, RFA Ticker, speaking out, spending
4 Comments
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
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
Posted in Advocacy, Commentary
Tagged action, CDC, CFSAC, DHHS, drugs, education, FDA, government, healthcare, medical education, NIH, occupy, politics, priorities, recommendations, researchers, speaking out, stakeholders, suffering, testimony, treatment, truth
20 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
The Cut
Trump’s proposed budget is out. Among all the cuts – because you have to cut in order to increase defense spending while simultaneously giving the rich a tax cut – among all these cuts is one that people with ME … Continue reading →