Category Archives: Advocacy

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

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

RFA Ticker, 11/14/16

Posted on November 14, 2016 by Jennie Spotila

It got a bit crazy with NIH last week, didn’t it? The talk by Dr. Shorter went ahead as scheduled on November 9th, much to the chagrin of the entire patient community. Afterwards, NIH issued a follow up response which … Continue reading →

Posted in Advocacy, Research | Tagged , , , , , , , , , , , , , | 12 Comments

The Proverbial Olive Branch

Posted on November 10, 2016 by Jennie Spotila

In what will probably be the last word from NIH on the invited lecture by Dr. Edward Shorter, the Trans-NIH ME/CFS Working Group has issued a follow up response to the ME community. For background, read my open letter to … Continue reading →

Posted in Advocacy, Commentary, Research | Tagged , , , , , , , , , , , , , , , , , , , , , | 21 Comments

Small Steps of Progress

Posted on November 9, 2016 by Jennie Spotila

Progress, no matter how small, is still progress. Any tiny incremental change advocates can achieve is improvement, and it’s important to acknowledge when it happens. I am pleased to report that NIH has taken a small step towards providing more … Continue reading →

Posted in Advocacy, Research | Tagged , , , , , , , , , , , , , | 21 Comments