Tag Archives: government

CFSAC Public Comment, January 2017

Posted on January 18, 2017 by Jennie Spotila

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 , , , , , , , , , , , , , , , , , , , , , | 20 Comments

RFA Ticker, 1/16/17

Posted on January 15, 2017 by Jennie Spotila

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

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

A Myalgic Carol

Posted on December 27, 2016 by Jennie Spotila

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 , , , , , , , , , , , , , , | 20 Comments

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

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