Tag Archives: government

#MillionsMissing

Posted on May 10, 2016 by Jennie Spotila

For as long as I have been an ME/CFS advocate, I have heard people say we should protest/take to the streets/be more like ACT UP. But for the most part, demonstrations have been small (even one woman) shows. That is … Continue reading →

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RFA Ticker, 5/9/16

Posted on May 9, 2016 by Jennie Spotila

We observe International ME/CFS Awareness Day this week, and there are still #MillionsMissing in essential research dollars. Total RFAs Issued by NIH: 210 (October 2015 to date) Total Dollars Committed to RFAs: $1,996,940,000 (October 2015 to date) Total RFAs for … Continue reading →

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Staying the Course to Where?

Posted on May 3, 2016 by Jennie Spotila

Dr. Francis Collins, Director of the National Institutes of Health, made a request of the ME/CFS community. During the March 8, 2016 NIH telebriefing, Dr. Collins said: So please take our commitment with great seriousness. Please also stay the course … Continue reading →

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RFA Ticker, 5/2/16

Posted on May 2, 2016 by Jennie Spotila

The last week of April was not the lightest week for RFA’s, but it was pretty close. Three of those RFAs came from the Office or Research Infrastructure Programs in the Office of the Director. NIH has now issued over … Continue reading →

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RFA Ticker, 4/25/16

Posted on April 25, 2016 by Jennie Spotila

NIH issued more than $42 million in new RFAs last week. My question is whether RFAs will crack $2 billion before ME/CFS finally gets its own. Total RFAs Issued by NIH: 198 (October 2015 to date) Total Dollars Committed to … Continue reading →

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RFA Ticker, 4/18/16

Posted on April 18, 2016 by Jennie Spotila

It was a light week for RFAs in general, but NIH still committed almost $7 million to areas that are not ME/CFS. Total RFAs Issued by NIH: 188 (October 2015 to date) Total Dollars Committed to RFAs: $1,914,725,000 (October 2015 … Continue reading →

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RFA Ticker 4/11/16

Posted on April 11, 2016 by Jennie Spotila

Last week, five Institutes announced interest in receiving applications for administrative supplements for existing grants to increase ME/CFS research. Obviously, it’s not the announcement we’ve been waiting for, but it is a step. Let’s take a closer look at how … Continue reading →

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RFA Ticker, 4/4/16

Posted on April 4, 2016 by Jennie Spotila

Last week was a big one for RFA news. NIH issued revised responses to the August 2015 CFS Advisory Committee recommendations. Regarding RFAs, NIH said: “The Trans-NIH ME/CFS Working Group is in the final stages of putting together a comprehensive … Continue reading →

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RFA Ticker, 3/28/16

Posted on March 28, 2016 by Jennie Spotila

As I mentioned last week, these numbers apply to NIH issued RFAs only, not FDA or other agency-funded RFAs. Also, I think it might help to review some terminology. “RFA” stands for a Request for Applications. This mechanism sets money … Continue reading →

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RFA Ticker, 3/21/16

Posted on March 21, 2016 by Jennie Spotila

I’ve reexamined the RFA data, and found a total of 12 out of 174 RFAs that are actually being funded by FDA. I’ve removed the dollar figures being set aside by FDA from the weekly and overall totals. I also … Continue reading →

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