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Jennie Spotila: NIH’s management of conflict of interest

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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 ...

Trifecta for ME awareness in Knoxville, Tennessee

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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 ...
David Tuller: "I am committed to seeing this effort through to the end"

Tuller on PACE Investigation Plans: Not Beholden to Anyone

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#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

Voices from Sacramento: Janet Dafoe and Ashley Haugen

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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

Passionate Pragmatist: Carol Head and the Fight for ME/CFS Equality: The SMCI Pt. I

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One of my deeply held personal values is that ALL people must be treated  respectfully…I have found that respectful, highly knowledgeable, forceful advocacy language that expresses the desperate needs of our community is the most effective. But please do not mistake my professional, respectful demeanor as anything less than a

Proclaim it Loud: States Issue Resolutions for ME

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Government moves slow. Any action requires lengthy processes - all of the checks and balances intended to create better, more deliberate legislation. Activists for Myalgic Encephalomyelitis (ME) across the country understand the sausage-making well as they have sought for their state legislators to recognize the urgent challenges facing ME, including

#MillionsMissing Will Take to the Streets on May 12th – Join Them!

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The #MillionsMissing are taking to the streets in 17 cities across the world on Friday, May 12th to once again demand change for people with Myalgic Encephalomyelitis (ME). Five cities in the UK are hosting #MillionsMissing rallies - with London taking a stance before the department of health for the third

#BedFest is almost here – Join the call Saturday!

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#BedFest is an international art, performance and music festival created by people with Myalgic Encephalomyelitis

Eleven Years with Severe ME – a Young Woman Writes Her Story

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Jessica Taylor-Bearman has written a book called “A Girl Behind Dark Glasses” about her "forgotten years" of having severe Myalgic Encephalomyelitis (ME) for 11 years since the age of 15. Her book focuses on the four years she spent hospitalized during which she was unable to speak, eat or move

The ME/CFS Biomarker Rollercoaster

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Biomarkers are a holy grail for ME/CFS because they have the potential to help diagnose disease, track disease progression or progress and help inform which treatments might help. The need for biomarkers is immense and researchers will identify many possible ones. It is encouraging that there have been more possible biomarker reports

Thirty U.S. House Reps Show Support for Appropriation Language

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Thirty U.S. House representatives signed a letter last week urging their colleagues on the House Appropriations Committee to attach language to its report on the fiscal year 2018 budget that encourages the NIH, CDC and HHS to accelerate and enhance its work in research and education for ME/CFS.

The Sleepy Girl Guide to Social Security Disability (U.S.)

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Renegade disability guide for Myalgic Encephalomyelitis

Engaging People with ME as Partners in the CRCs

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The National Institute of Health’s RFA for ME/CFS Collaborative Research Centers breaks new ground. For the first time, the funding agency is strongly encouraging researchers “to establish partnerships with patients groups and solicit their input” as part of their research plan. #MEAction assembled a team of volunteers to assist researchers in

Musician with ME produces EP from her bed

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#MEAction is working with musician Kaeley Pruitt-Hamm to re-release her music video, “Believe Her,” to showcase the broader face of the ME community.   Send in a still photo or 5-second clip of yourself in bed holding a sign that says #BelieveME or #BelieveHer by April 30th. We will include these
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