Monthly Archives: September 2016

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 →

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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 →

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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 →

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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 →

Posted in Occupying | Tagged , , , , , , , , , , , | 42 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 →

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