Category Archives: Advocacy

RFA Ticker, 6/20/16

Another week, another $20,000,000+ in RFAs, and nothing for ME/CFS. It’s an unfortunate routine. But it bears repeating that we have an opportunity to speak up, and tell NIH what priorities should be the focus of future ME/CFS research. The … Continue reading

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Responding to the NIH RFI

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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RFA Ticker, 6/13/16

A note about reading the fine print: news circulated last week that NIH was making grants to early-stage investigators of ME/CFS. If you only read the headlines or Twitter, you might think these grants are for research. But they aren’t; … Continue reading

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RFA Ticker, 6/6/16

There is an interesting case study among last week’s RFAs. The National Institute of Alcohol Abuse and Alcoholism, along with two other Institutes, issued three RFAs with funding to continue the National Consortium on Alcohol and Neurodevelopment in Adolescence. This … Continue reading

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RFA Ticker, 5/30/16

NIH took two steps down the road that leads to more ME/CFS research funding last week, but it’s important to understand what those steps actually mean at this point in time. First, NIH issued a Request for Information: Soliciting Input … Continue reading

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Brilliant Scientist Among the #MillionsMissing

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

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

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

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

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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