Tag Archives: accountability

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 , , , , , , , , , , , , | 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 , , , , , , , , , , , , , | 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 , , , , , , , , , , , , | 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 , , , , , , , , , , , , , | 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 , , , , , , , , , , , , , , , , , | 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 , , , , , , , , , , , , , , , , , , , , | 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 , , , , , , , , , , , , , | 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 , , , , , , , , , , , , , , | 15 Comments

RFA Ticker, 12/26/16

No Christmas joy for ME/CFS research at NIH. Only two RFAs were issued last week, and neither were the RFAs promised to us. It appears that the RFAs are coming . . . at some point. Dr. Vicky Whittemore told … Continue reading

Posted in Advocacy, Research | Tagged , , , , , , , , , , , , , , | 5 Comments

Dr. Collins: Keep Your Promise!

This is a call to action. I hope you will join me in demanding that Dr. Collins keep NIH’s promise to the ME community. (Edited to add: this action originated with MEAction. I’m just helping to boost the signal.) The … Continue reading

Posted in Advocacy, Research | Tagged , , , , , , , , , , | 28 Comments