Author Archives: Jennie Spotila

RFA Ticker, 10/17/16

Posted on October 17, 2016 by Jennie Spotila

Have you heard the expression “Go big or go home?” That is the perfect description of last week’s RFA totals. NIH only issued one RFA last week, but it was a big one. The set aside funding of $28,750,000 more … Continue reading →

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Tasha

Posted on October 14, 2016 by Jennie Spotila

There are many beautiful, powerful images from the September 27th Millions Missing protests. My friend Tasha spoke at the #MillionsMissing New York City event, and I’m proud to share her comments with you here. Hi, my name is Tasha and … Continue reading →

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Collins Responds to Congress

Posted on October 10, 2016 by Jennie Spotila

In September, fifty-five members of the House of Representatives sent NIH Director Dr. Francis Collins a letter in support of more ME/CFS research. Dr. Collins has now responded, but it is hardly satisfactory. You may recall that Representatives Lofgren and … Continue reading →

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RFA Ticker, 10/10/16

Posted on October 10, 2016 by Jennie Spotila

It’s a new year (in Washington DC, anyway). I didn’t have to turn the RFA Ticker back to zero, since that is where it was all of FY 2016. But here we are, so let’s get started on FY 2017. … Continue reading →

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Quick NIH Updates

Posted on October 6, 2016 by Jennie Spotila

A few quick hit NIH updates, all drawn from the website for the Clinical Care study: The consent form for the study has been posted. Of note, people with depression, anxiety, etc. are excluded if their symptoms are not well-controlled … Continue reading →

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RFA Ticker, FY 2016 Wrap Up

Posted on October 3, 2016 by Jennie Spotila

Fiscal Year 2016 ended on Friday, September 30th. Were you holding your breath for that ME research RFA? I hope not. NIH did not issue an RFA for ME research in FY2016. However, NIH did issue 352 RFAs in that … Continue reading →

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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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