Tag Archives: recommendations

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 →

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

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

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 →

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

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 →

Posted in Advocacy, Research | Tagged , , , , , , , , , , , , , | 1 Comment

RFA Ticker, 8/22/16

Posted on August 22, 2016 by Jennie Spotila

As I predicted, last week was another bonanza for RFAs. Another $130 million dollars was set aside, and NIH has now issued $2.6 billion in RFAs this fiscal year. There’s a package for clinical centers and a data coordinating center … Continue reading →

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

AHRQ Evidence Review Changes Its Conclusions

Posted on August 16, 2016 by Jennie Spotila

Mary Dimmock has led the way on this issue, and is co-author of this post. In response to requests by U.S. patient organizations and advocates, the U.S. Agency for Healthcare Research and Quality (AHRQ) has issued an Addendum to its … Continue reading →

Posted in Advocacy, Commentary, Research | Tagged , , , , , , , , , , , , , , , , , , , | 47 Comments

RFA Ticker, 8/15/16

Posted on August 15, 2016 by Jennie Spotila

It’s a good thing I was forced to write this post lying down, because I might have passed out or thrown up when I saw the RFA totals for last week. Take precautions before you keep reading: NIH issued more … Continue reading →

Posted in Advocacy, Research | Tagged , , , , , , , , , , , , , | 10 Comments

RFA Ticker, 8/8/16

Posted on August 8, 2016 by Jennie Spotila

August 8th is Severe ME Day, observed on Sophia Mirza‘s birthday. Today we remember and honor the memory of all ME patients who have left us (and there are too many). We also raise awareness about severe ME, and the … Continue reading →

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