Tag Archives: recommendations

Meeting with the Assistant Secretary

Posted on August 5, 2016 by Jennie Spotila

As I mentioned in this week’s RFA Ticker, I participated in a meeting with the Assistant Secretary for Health Dr. Karen DeSalvo. You can read the meeting summary on MEAction, and I’ve reprinted the full text below. From a personal … Continue reading →

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RFA Ticker, 8/1/16

Posted on August 1, 2016 by Jennie Spotila

Alrighty then. Last week? NIH issued more than $128 MILLION in RFAs. NIH has broken the $2.3 billion mark for Fiscal Year 2015. So the same week we found out about activist Tom Jarrett’s suicide? Diseases that are not ME … Continue reading →

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RFA Ticker, 7/25/16

Posted on July 25, 2016 by Jennie Spotila

Well hey, another Monday! And guess what? It’s another Monday with no ME/CFS RFA to report! This is like a bad habit you cannot break. They say that the definition of insanity is repeating the same behavior and expecting a … Continue reading →

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RFA Ticker, 7/18/16

Posted on July 18, 2016 by Jennie Spotila

Last week was awesome for researchers waiting on an RFA . . . at least for non-ME/CFS researchers anyway. NIH issued RFAs totaling more than $75 million, pushing the fiscal year total over the $2.2 billion mark. Life is especially … Continue reading →

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Responding to the NIH RFI

Posted on June 14, 2016 by Jennie Spotila

For the first time, NIH has requested public input into the future direction of ME/CFS research. This is a chance for researchers, organizations, advocates, and others to provide input directly to the Trans-NIH ME/CFS Working Group on the following questions: … Continue reading →

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CFS Advisory Committee Meeting Outcomes

Posted on May 21, 2016 by Jennie Spotila

The CFS Advisory Committee is charged with advising the Secretary of Health and Human Services on issues related to ME/CFS. HHS has a very patchy record in its responses to CFSAC recommendations, but the committee’s public meetings remain highly significant. … Continue reading →

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CFSAC Comments, Terri Wilder

Posted on May 18, 2016 by Jennie Spotila

Editor’s note: Terri Wilder made these remarks at the May 18, 2016 meeting of the CFS Advisory Committee. I’m pleased to publish her complete comments, with her permission. For new readers, ME refers to myalgic encephalomyelitis, a neuroimmune disease.  Good … Continue reading →

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#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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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 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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