Tag Archives: DHHS

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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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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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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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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#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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Epic Eye Roll

Posted on April 2, 2016 by Jennie Spotila

I had a shocking experience at a doctor’s office yesterday. It was my first visit to his office for an issue unrelated to ME/CFS. After breezing into the room and making a sarcastic remark about the quality of doctors’ notes … Continue reading →

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We Are All Noncompliant

Posted on March 2, 2016 by Jennie Spotila

I learned something about ME/CFS advocacy from a comic book. Now wait, stay with me. I realize this sounds bizarre, especially coming from me. I haven’t read a comic book since I was eight years old. Enter Bitch Planet, a … Continue reading →

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Someone Had To Say It

Posted on November 10, 2015 by Jennie Spotila

A long story about this moment in ME/CFS research and advocacy by journalist Virginia Gewin was published in Mosaic, a publication of the Wellcome Trust today. The article includes a great profile of Dr. Lenny Jason, coverage of the PACE … Continue reading →

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