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3 Ways You Can Join in a #TimeforUnrest

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Update: View a recording of the call here -  --------------------------- The September kickoff of the #TimeforUnrest campaign is just around the corner, and we at #MEAction couldn't be more excited! Last week we recorded our first community call where we got to know the Unrest team, hear about the film's release plan and got a sneak peek into the impact ...

Support Severe ME Day: Join the Silence Challenge

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August 8th is Severe ME Day. It is a day of awareness raising for those suffering severe Myalgic Encephalomyelitis as well as a day of remembrance. August 8th was the birthday of Sophia Mirza, a 32 year-old woman who died of ME. One way you can participate and raise awareness for ...

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! ...

Speak Up, Tweet Back, Write ME: Activist Messaging 101 in the Social Media Age

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UPDATE: A recording of this community call can be found here. Join us for our next activist teach-in with Jennifer Johnson Avril* on Sunday, August 13th at 1:00pm E.T. The call will run for 90 minutes. Our storytelling is a powerful component of activism, whether we're making a video, writing a press ...

#MEAction UK response to NICE 2017

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#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 ...

Troubled by NICE guidelines? Three easy ways you can help

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When you go to the doctor, you expect treatment to help, not harm you. But the NICE (NHS) guidelines for ME/CFS only recommend two main therapies for ME: Graded Exercise Therapy (GET - which asks you to gradually increase your exercise each week, ignoring any worsening symptoms) and Cognitive Behavioural Therapy ...

Write to Your MP in 5 Minutes about the ME/CFS NICE Guidelines

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  The NHS' NICE guidelines are badly out of date, and only offer two main treatments: Graded Exercise Therapy and Cognitive Behavioural Therapy. We've just heard that NICE, despite being due for a revision this year, are intending not to revise the guidelines after all. This is worrying for all patients ...

ACTIVIST TEACH IN: THINK GLOBAL ACT LOCAL (Sat. July 8)

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The ME community can greatly benefit by adopting a local philosophy to activism ...

New York State Health Commissioner Sends Letter to Physicians about ME

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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 ...

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 ...

 

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