Category: Featured news

The Emotional Toll of Not Being Heard

This story won’t be particularly unique or shocking to anyone living with ME. Every single one of us has a plethora of stories like this, and far worse than this. It has happened so many times over the last 11 years. What shocks me is the degree to which it still occurs and manages to affect me, no matter how much time I spend trying to advocate for ME.

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Scientists gather for ME/CFS symposium this Saturday: Watch online!

Influential scientific researchers in the ME/CFS community will come together this Saturday, Aug. 12 for a one-day community symposium focused on the molecular basis of ME/CFS at Stanford University Palo Alto, California. Register here to join the livestream and be part of the conversation. View the agenda here. (DVDs can also be ordered for $15 from

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THE PACE TRIAL: THE MAKING OF A MEDICAL SCANDAL

Journal of Health Psychology Special Issue on The PACE Trial, Vol. 22,  No 9, Aug. 2017 Publication date: 31 July 2017 http://journals.sagepub.com/toc/hpqa/current   A Special Issue of the Journal of Health Psychology on the PACE Trial, is to be published and freely available online on Monday 31 July 2017. It marks a special contribution of

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Jennie Spotila: NIH's management of conflict of interest

EDITOR’S NOTE: This reporting is written by Jennie Spotila Next week, the NIH will convene a peer review panel to evaluate and score the applications submitted under the Data Center and Collaborative Research Center RFAs. NIH’s management of conflict of interest is key to understanding who is – and who is not – on the

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Trifecta for ME awareness in Knoxville, Tennessee

Trifecta in Knoxville, Tennessee In an example of Knoxville leading the way for Tennessee, Mayor Madeline Rogero and the Knoxville City Council have provided an ME/CFS Proclamation and Resolution in honor of May 12th, International ME/CFS Awareness Day. Supporting the global movement of lighting bridges and buildings in the ME blue awareness color, Knoxville’s Henley

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Tuller on PACE Investigation Plans: Not Beholden to Anyone

#MEAction sat down with David Tuller recently for a wide-ranging discussion about the crowdfunding effort to help him continue his PACE investigations, the devastating stories he has heard from patients around the world, the poor media coverage of the PACE Trial flaws, and the ideal end result of all of the work he is doing. David Tuller

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Voices from Sacramento: Janet Dafoe and Ashley Haugen

Some of you may know Dr. Janet Dafoe and her daughter Ashley Haugen through their tireless advocacy work for ME.  Dr. Dafoe’s son and Ashley’s brother, Whitney Dafoe, has severe ME, and is the impetus behind their efforts to raise funding, raise awareness, and raise hell. These statements were read at the Sacramento California rally on June 2, 2017.

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