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#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  The NHS' NICE guidelines are badly out of date, and only offer two main treatments: Graded Exercise Therapy and Cognitive Behavioural Therapy.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 ...

City Proclamation for ME: How-To Guide and Case Study

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Timbre Livesay and Mary Dimmock contributed to this article. This is an outline of the steps a California ME advocate, Mark Camenzind, took for getting city proclamations for ME. Below the steps is a template you can use for your own city proclamation. Feel free to adapt either for your city's ...

State Resolution for ME: How-to Guide and Case Study

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Rivka Solomon and Mary Dimmock contributed to this article This document includes the steps ME advocates are taking to get a State Resolution for ME passed in their State House (aka State Assembly or State Legislature). It also includes a draft template of a resolution for you to use in your state. Why ...

Julie Rehmeyer’s memoir is out. Purchase her book today!

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“I read an early version of Through the Shadowlands while I was driving around the country, tent in my rental car, terrified that something inexplicable was wrong with me, convinced that I was losing my mind. Julie Rehmeyer’s book showed me that I wasn’t ...

Contact your local journalist about #BedFest

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Invite a journalist to cover the story of #BedFest in which artists with Myalgic Encephalomyelitis from all over the world have come together - many of them bed or homebound - to express themselves and showcase their music, art and poetry. Share the #BedFest website with your journalist - a living gallery and concert hall of ...

Netherlands: Artists to showcase their work to raise awareness for ME

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Anil van der Zee, 38, is a former professional ballet dancer in Amsterdam. In 2007, he contracted a viral infection, Cytomegalovirus, and never fully recovered. A few years later he was diagnosed with Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS). He describes his transition from being a strong, ...

Show your Face to the World: #BelieveME

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When you see a media representation of someone suffering with Myalgic Encephalomyelitis (also called Chronic Fatigue Syndrome), do you feel that you are being represented? Do you see your face when you see photos of people with ME or CFS in the media?  "Who can become ill with ME/CFS? Most of ...

 

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