Category Archives: Advocacy

Still #MillionsMissing

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

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RFA Ticker, 9/26/16

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

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

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RFA Ticker, 9/19/16

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

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CFSAC Renewed

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

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

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

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

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

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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