Tag Archives: politics

Naming

Posted on July 22, 2016 by Jennie Spotila

Do you notice anything different at the top of the page? Occupy CFS is now Occupy M.E. I thought long and hard about the change, and would like to share my reasoning. First of all, CFS is a crappy name. … Continue reading →

Posted in Advocacy, Occupying | Tagged , , , , , , , , , | 26 Comments

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 →

Posted in Advocacy, Research | Tagged , , , , , , , , , , , , , | 4 Comments

Scandal

Posted on July 10, 2016 by Jennie Spotila

Give me 90 minutes. Whoever you are, whatever your connection to or interest in ME/CFS, take 90 minutes to listen to this discussion with academic/journalist David Tuller, DrPH (Lecturer at the School of Public Health and Graduate School of Journalism … 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 →

Posted in Advocacy, Occupying | Tagged , , , , , , , , , , , , , | 17 Comments

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 →

Posted in Advocacy, Occupying | Tagged , , , , , , , , , , , , , | 13 Comments

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 →

Posted in Advocacy | Tagged , , , , , , , , , , , , , , , | 7 Comments

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 →

Posted in Advocacy | Tagged , , , , , , , , , , , , , | 48 Comments

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 →

Posted in Advocacy, Commentary, Research | Tagged , , , , , , , , , , , , , , , , , , , | 9 Comments

#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 →

Posted in Advocacy | Tagged , , , , , , , , , , , , , , , , , , | 9 Comments

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 →

Posted in Advocacy, Commentary, Research | Tagged , , , , , , , , , , , , , , , , , , , | 17 Comments