Tag: advocacy

Jen Brea's 'Unrest' to Debut at Sundance Film Festival

After years of work and hundreds of hours of footage, Jen Brea’s documentary, now entitled Unrest, is ready for its debut.  The film will be shown at the Sundance Resort as part of the Sundance Film Festival in January 2017; Brea’s Unrest was selected to premier as one of the Festival’s narrative documentaries.  The Sundance

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#MEAction US protest demands

These demands were originally issued for the May 25, 2016 MillionsMissing demonstrations. Minor revisions were made to the demands in November 2016 to reflect community input on the definition, the primer, the name, and the need for improvements in clinical care.   You can access and download a pdf of the revised protest demands by clicking

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Tell the NIH about your experience of PEM

Dr. Mark VanNess and Staci Stevens recently visited the National Institutes of Health (NIH) to present their findings on cardiopulmonary exercise testing (CPET) and the importance of the symptom of post-exertional malaise to the NIH ME/CFS Special Interest Group. Out of this conversation, Dr. Brian Walitt, lead investigator of the ME/CFS Intramural Study, extended an

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Director Collins responds to 55 Congressional Representatives' Letter of Concern

Recently, #MEAction in conjunction with other advocacy organizations and many individual advocates have also successfully lobbied Congressional members to achieve: Favorable language to ME in the FY 2016 House appropriations report; Congressional tweets of support for the #MillionsMissing Day of Action on Sept. 27, 2016, which called attention to the millions of Americans struck down by

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No more 'should': the aim to stop punishing myself for having ME

Have you ever noticed how so many of us beat ourselves up for having this chronic illness, almost as if it is invisible even to us, even as we feel the pain and exhaustion? While we feel the need to not give up and keep a hold of all we can of our lives, I’m becoming aware that I for one often get this fight tangled up with a lot of damaging self-judgement.

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Increasing Efficacy of the CDC’s ME/CFS Educational Program

INTRODUCTION The Centers for Disease Control (CDC) is revising and creating new educational materials for its Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) educational program. The hope is that this fourth try at producing ME/CFS educational materials will result in equality of care for ME/CFS patients and they will, for the first time, experience appropriate care throughout

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