Category Archives: Advocacy

Brilliant Scientist Among the #MillionsMissing

Posted on May 25, 2016 by Jennie Spotila

My friend Barb opened a window into the extraordinary loss she has endured because of ME/CFS. Please read her powerful statement, and count her among the #MillionsMissing. If you want a tiny peek into what I live with every day, … Continue reading →

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I Am Among the #MillionsMissing

Posted on May 25, 2016 by Jennie Spotila

I miss hiking. Getting into the woods, to the enveloping strength of nature, was my favorite thing to do. I wanted to through-hike the Appalachian Trail. I miss more weddings, graduations, and funerals than I can count. I miss having … Continue reading →

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RFA Ticker, 5/23/16

Posted on May 23, 2016 by Jennie Spotila

NIH issued only two RFAs last week, but last week we learned much more about what is coming for ME/CFS. As I explained in my summary of the CFS Advisory Committee, Dr. Vicky Whittemore reported that she will be presenting … 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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RFA Ticker, 5/16/16

Posted on May 16, 2016 by Jennie Spotila

NIH cracked the $2 billion mark in RFAs, but there are still #MillionsMissing in essential research dollars for ME/CFS. Total RFAs Issued by NIH: 221 (October 2015 to date) Total Dollars Committed to RFAs: $2,029,040,000 (October 2015 to date) Total … Continue reading →

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PACE-Gate

Posted on May 12, 2016 by Jennie Spotila

It is International ME/CFS Awareness Day, and what is most on my mind is the status of PACE-Gate: the controversy over the design, conduct and results of the PACE trial. PACE is the largest clinical trial in ME/CFS, and it … 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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RFA Ticker, 5/9/16

Posted on May 9, 2016 by Jennie Spotila

We observe International ME/CFS Awareness Day this week, and there are still #MillionsMissing in essential research dollars. Total RFAs Issued by NIH: 210 (October 2015 to date) Total Dollars Committed to RFAs: $1,996,940,000 (October 2015 to date) Total RFAs for … 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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