Author Archives: Jennie Spotila

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

The Wall of Nope

Posted on December 7, 2016 by Jennie Spotila

I have reached a new low in life with ME. I call it: The Wall of Nope. The Wall of Nope is not a physical crash. It’s an inability to deal with obligations and necessary things. Here’s an example: I’m … Continue reading →

Posted in Commentary, Occupying | Tagged , , , , , , , , , , , , , , , | 44 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

RFA Ticker, 11/28/16

Posted on November 28, 2016 by Jennie Spotila

A short week due to the Thanksgiving holiday doesn’t slow NIH down, apparently. More than $40 million was committed to RFAs last week. ME/CFS research didn’t even get the giblets. Will we be more successful in December? Here are the … Continue reading →

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

The Government Attitude Needed

Posted on November 22, 2016 by Jennie Spotila

Government/advocate interactions frequently happen on a public stage, where everyone is rightly careful about what they say. Sometimes, though, we can get access to behind the scenes communication. In emails that the authors probably believed would remain private, we can … Continue reading →

Posted in Advocacy, Commentary, Occupying | Tagged , , , , , , , , , , , , , | 17 Comments

RFA Ticker, 11/21/16

Posted on November 21, 2016 by Jennie Spotila

The big news (apart from the election, of course) is that Carol Head and Dr. Zaher Nahle of the Solve ME/CFS Initiative had a brief meeting with Dr. Francis Collins, Director of NIH. SMCI reported: Dr. Collins could not offer … Continue reading →

Posted in Advocacy, Research | Tagged , , , , , , , , , , , , , | 7 Comments