Category Archives: Advocacy

RFA Ticker, 4/25/16

NIH issued more than $42 million in new RFAs last week. My question is whether RFAs will crack $2 billion before ME/CFS finally gets its own. Total RFAs Issued by NIH: 198 (October 2015 to date) Total Dollars Committed to … Continue reading

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RFA Ticker, 4/18/16

It was a light week for RFAs in general, but NIH still committed almost $7 million to areas that are not ME/CFS. Total RFAs Issued by NIH: 188 (October 2015 to date) Total Dollars Committed to RFAs: $1,914,725,000 (October 2015 … Continue reading

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RFA Ticker 4/11/16

Last week, five Institutes announced interest in receiving applications for administrative supplements for existing grants to increase ME/CFS research. Obviously, it’s not the announcement we’ve been waiting for, but it is a step. Let’s take a closer look at how … Continue reading

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RFA Ticker, 4/4/16

Last week was a big one for RFA news. NIH issued revised responses to the August 2015 CFS Advisory Committee recommendations. Regarding RFAs, NIH said: “The Trans-NIH ME/CFS Working Group is in the final stages of putting together a comprehensive … Continue reading

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Epic Eye Roll

I had a shocking experience at a doctor’s office yesterday. It was my first visit to his office for an issue unrelated to ME/CFS. After breezing into the room and making a sarcastic remark about the quality of doctors’ notes … Continue reading

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RFA Ticker, 3/28/16

As I mentioned last week, these numbers apply to NIH issued RFAs only, not FDA or other agency-funded RFAs. Also, I think it might help to review some terminology. “RFA” stands for a Request for Applications. This mechanism sets money … Continue reading

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RFA Ticker, 3/21/16

I’ve reexamined the RFA data, and found a total of 12 out of 174 RFAs that are actually being funded by FDA. I’ve removed the dollar figures being set aside by FDA from the weekly and overall totals. I also … Continue reading

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RFA Ticker, 3/14/16

During the March 8, 2016 NIH conference call with ME/CFS advocates, I asked Dr. Walter Koroshetz of NINDS if he could commit to the community that an RFA would be forthcoming. He said no, and then qualified the answer by … Continue reading

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RFA Ticker, 3/7/16

Just one RFA last week, and it wasn’t for ME/CFS. The wait continues. Total RFAs Issued by NIH: 150 (October 2015 to date) Total Dollars Committed to RFAs: $1,612,990,000 (October 2015 to date) Total RFAs for ME/CFS: ZERO (October 2015 … Continue reading

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We Are All Noncompliant

I learned something about ME/CFS advocacy from a comic book. Now wait, stay with me. I realize this sounds bizarre, especially coming from me. I haven’t read a comic book since I was eight years old. Enter Bitch Planet, a … Continue reading

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