Author Archives: Jennie Spotila

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 →

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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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Pretty Much the Worst

Posted on September 9, 2016 by Jennie Spotila

One of the worst things someone said to me recently about my disability was: With all the stuff you’re doing, you work just as hard as someone working full time. The charitable and loving way to interpret this statement is: … 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 →

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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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Reality Checking, Dr. Nath

Posted on August 24, 2016 by Jennie Spotila

This is the second of a two part series. Part One described the controversy and my fact checking. Part Two presents my analysis of the potential danger to the Clinical Care study. As part of the renewed focus on ME/CFS … Continue reading →

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Fact Checking, Dr. Nath

Posted on August 23, 2016 by Jennie Spotila

This is the first of a two part series. Part One describes the controversy and my fact checking. Part Two will present my analysis of what I found. As part of the renewed focus on ME/CFS at NIH, the National … Continue reading →

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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 →

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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 →

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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 →

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