Author: #MEAction

Tell Congress "Don't defund ME/CFS!"

Last week, the House Appropriations Subcommittee on Labor-HHS zeroed out the $5.4 million line item for Chronic Fatigue Syndrome at the CDC….again. Tell your members of congress to restore the funding for ME/CFS for next year’s budget. We cannot abandon the progress we’ve made so far!

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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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#MEAction UK response to NICE 2017

#MEAction UK response to NICE 2017 Background information UK clinical guidelines are written by a body called the National Institute for Health and Clinical Excellence (NICE). The current guidelines were last revised in 2007 and contain recommendations that people with ME consider unsuitable and potentially harmful. These guidelines also impact how ME is perceived in

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NICE 2017 response

10 year surveillance (2017) – Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy) (2007) NICE guideline CG53 Stakeholder consultation comments form – proposal for ‘no update’ Consultation on the proposal for ‘no update’ opens on: 9am Monday, 10 July 2017 ​ Comments on proposal to be submitted: no later than 9am Monday, 24 July 2017 Organisation name

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

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 cover for my righteous indignation and outrage at the inhumanity of our community’s treatment” Carol Head

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New York State Health Commissioner Sends Letter to Physicians about ME

On Friday, May 26th, New York State (NYS) Health Commissioner Dr. Howard Zucker emailed a letter regarding Myalgic Encephalomyelitis (ME) to eighty-five thousand physicians in NYS. In the letter he describes the illness, encourages physicians to consider ME as part of a differential diagnosis when evaluating patients with symptoms, and refers readers to Jen Brea’s

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Thank Senator Markey for Sponsoring the Congressional ME Briefing

Back in February 2017, Senator Ed Markey (D-MA)  publicly announced at a packed town hall meeting that he would advocate for ME. A few short months later, he did just that! His first act as an ME advocate was to sponsor a Congressional Briefing on Capitol Hill on May 18th. The briefing — which included

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