Category Archives: Advocacy

Quick NIH Updates

Posted on October 6, 2016 by Jennie Spotila

A few quick hit NIH updates, all drawn from the website for the Clinical Care study: The consent form for the study has been posted. Of note, people with depression, anxiety, etc. are excluded if their symptoms are not well-controlled … Continue reading →

Posted in Advocacy, Research | Tagged , , , , , , , , , | 18 Comments

RFA Ticker, FY 2016 Wrap Up

Posted on October 3, 2016 by Jennie Spotila

Fiscal Year 2016 ended on Friday, September 30th. Were you holding your breath for that ME research RFA? I hope not. NIH did not issue an RFA for ME research in FY2016. However, NIH did issue 352 RFAs in that … Continue reading →

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

Still #MillionsMissing

Posted on September 27, 2016 by Jennie Spotila

Today is another, larger #MillionsMissing protest, and I am missing it. I miss a lot of things. One of the best things I ever did in my life was to drive cross country, camping in national parks. It changed my … Continue reading →

Posted in Advocacy, Occupying | Tagged , , , , , , , , , , , , , , , , , | 14 Comments

RFA Ticker, 9/26/16

Posted on September 25, 2016 by Jennie Spotila

We are down to the wire, friends. The #MillionsMissing protest is on the 27th, and we have millions upon millions missing from ME research at NIH. Specifically, NIH issued 15 RFAs last week for $62 million, but ME did not … Continue reading →

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PACE: Grossly Exaggerated

Posted on September 21, 2016 by Jennie Spotila

On September 9, 2016, Queen Mary University of London released data from the PACE trial in compliance with a First Tier Tribunal decision on a Freedom of Information Request by ME patient Alem Matthees. The day before, the PACE authors … Continue reading →

Posted in Advocacy, Commentary, Research | Tagged , , , , , , , , , , , , , | 18 Comments

RFA Ticker, 9/19/16

Posted on September 19, 2016 by Jennie Spotila

Imagine a woman waiting for a train. She has been waiting a long time, and the train is the only way to get to her destination. She waits as many other passengers get on their trains and proceed down the … Continue reading →

Posted in Advocacy, Research | Tagged , , , , , , , , , , , , | 15 Comments

CFSAC Renewed

Posted on September 12, 2016 by Jennie Spotila

As expected, the charter for the CFS Advisory Committee has been renewed for another two years. This has become a routine operation, but the new charter makes some intriguing changes to the CFSAC. I also have new information on potential … Continue reading →

Posted in Advocacy | Tagged , , , , , , , , , , | 11 Comments

RFA Ticker, 9/12/16

Posted on September 12, 2016 by Jennie Spotila

I have to admit, maintaining this RFA Ticker is a bit like watching a train wreck in slow motion. As the fiscal year winds down, and the RFAs slowly shrink in size and number, I keep asking “Will they or … Continue reading →

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RFA Ticker, 9/5/16

Posted on September 4, 2016 by Jennie Spotila

Another light week – a mere $11 million for diseases that are not ME. Cort Johnson reported that NIH is preparing two RFAs, one for collaborative research centers and one for a Data Management Coordinating Center. Marian Emr told me, … Continue reading →

Posted in Advocacy, Research | Tagged , , , , , , , , , , , , , | 3 Comments

RFA Ticker, 8/29/16

Posted on August 29, 2016 by Jennie Spotila

Last week was surprisingly light for RFAs. NIH issued five RFAs, setting aside $14.3 million for those projects. One of the RFAs may be of particular interest to the ME community. The National Institute of Neurological Diseases and Stroke issued … Continue reading →

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