Tag Archives: action

Comment by Terri Wilder, 1/12/17

Posted on January 13, 2017 by Jennie Spotila

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

Posted on January 9, 2017 by Jennie Spotila

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

Posted on January 2, 2017 by Jennie Spotila

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

CFSAC Meeting Information and Logistics

Posted on December 30, 2016 by Jennie Spotila

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 , , , , , , , , , | 1 Comment

RFA Ticker, 12/26/16

Posted on December 26, 2016 by Jennie Spotila

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!

Posted on December 21, 2016 by Jennie Spotila

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

CFSAC Around the Corner

Posted on December 20, 2016 by Jennie Spotila

The next meeting of the CFS Advisory Committee will be held Thursday, January 12th, and Friday, January 13th. This is an in-person meeting, and will also be webcast. Note that the Thursday meeting runs from 12 pm to 5pm, while … Continue reading →

Posted in Advocacy | Tagged , , , , , , , , , , , , , | 8 Comments

RFA Ticker, 12/19/16

Posted on December 19, 2016 by Jennie Spotila

There was a veritable flurry of RFAs last week, with the most issued in any single week since I started tracking last year. But more than halfway through December, the promised RFAs for the ME/CFS research consortium and data center … Continue reading →

Posted in Advocacy, Research | Tagged , , , , , , , , , , , , , | 4 Comments

RFA Ticker, 12/12/16

Posted on December 12, 2016 by Jennie Spotila

It’s December and the news we’ve all been waiting for – the announcement of ME/CFS RFAs – has not come. But other things of note have been happening. On the RFA front, NIH has passed half a billion dollars in … Continue reading →

Posted in Advocacy, Research | Tagged , , , , , , , , , , , , , , | 9 Comments

RFA Ticker, 12/5/16

Posted on December 5, 2016 by Jennie Spotila

The news in the past week was more about NIH generally, rather than ME specifically. President-elect Trump has nominated Representative Tom Price to be Secretary of HHS. This has touched off a war of words within the medical community, as … Continue reading →

Posted in Advocacy, Research | Tagged , , , , , , , , , , , , , | 6 Comments