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Category Archives: Past actions

U.S. Votes to Track ME/CFS on BRFSS Survey

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Back in March, we urged you to take action and inform your state health officials and departments to begin tracking ME/CFS as part of the their annually-conducted Behavioral Risk Factor Surveillance System (BRFSS). Many chronic health conditions are tracked using this system.  State health departments use the data collected to plan health ...

Urgent Congressional Action! Ask your Rep. to Sign Letter for ME/CFS

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URGENT Congressional Action! Please take this opportunity to call and email your House representative today to request they sign a letter that inserts favorable language about Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) into the House Appropriations Committee report for the FY19 budget. The deadline for your representative to sign the ...

Invite Congress to experience UNREST film and VR!

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#MEAction is teaming up with the Time for Unrest campaign and Solve ME/CFS Initiative to bring two new exciting opportunities to educate people on Capitol Hill about ME next week. On Wednesday, September 13, there will be a screening of the the Sundance award winning film, Unrest, directed by and ...

Tell Congress “Don’t defund ME/CFS!”

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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! ...

Thank Senator Markey for Sponsoring the Congressional ME Briefing

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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 ...

ME/CFS Advocacy Down Under in 2016

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2016 was a big year for ME/CFS advocacy. As we turn over the page to the fresh new year, the #MEAction Network Australia group reflects on some of the highlights of its advocacy efforts in 2016 ...

Clarification on NINDS role in ME/CFS Research

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After the March 8th telebriefing with the NIH, many advocates in the ME community still came away with questions. Billie Moore, NJME/CFSA Advocacy Chair, and member of the USAWGaAnd CDC's TDW Workgroup, was one of them. Though representatives of the NIH spoke at great length about the big picture of the new ME/CFS efforts ...

James Coyne Stormont talk on YouTube: PACE “outrageously bad”

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Professor James Coyne’s February 9 Belfast talk, “The Scandal of the £5m PACE Trial”, is now available on YouTube. The talk, given at Stormont, the home of the Northern Ireland Assembly, was delivered to a 40-strong audience of Members of the Legislative Assembly (MLAs), doctors, researchers and key health decision-makers. Professor Coyne ...

Complain about NIH’s Claims on CBT and GET

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Medline Plus, NIH's web site for patients, just published an article from health news distributor Healthday, based on the recent, discredited U.K. PACE study. The new article states that "cognitive behavioral therapy and graded exercise therapy are among the best available treatments for extended relief" of ME/CFS. Fortunately, if you ...