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Category Tag: Myalgic Encephalomyelitis

Cochrane Analysis: What’s Here, What’s missing, Conclusions

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Exercise therapy for chronic fatigue syndrome Lillebeth Larun, Kjetil G Brurberg, Jan Odgaard-Jensen, and Jonathan R Price Editorial group: Cochrane Common Mental Disorders Group As of October 2, 2019, the Cochrane review of GET in ME has been re-issued after the evidence was reassessed. You can read the whole review and a quick ...

#MEAction Volunteer-of-the-Month: She’s been Fighting for Change for Four Decades

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This month, #MEAction is honored to nominate Wilhelmina Jenkins as our Volunteer-of-the-Month. Wilhelmina has been fighting for recognition and progress for myalgic encephalomyelitis (ME) for nearly four decades since she suddenly became ill in 1983. She brings a wealth of knowledge, wisdom and fortitude to our community, and we are ...

#MEAction’s Postcards to Doctors is an Unprecedented Success!

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#MEAction’s Postcards to Doctors initiative has been successful beyond our wildest hopes!  Since August 1, we’ve received requests for more than 3,500 postcards from hundreds of individuals and groups.  People from all over the United States have signed up to write to their clinicians asking them to take #MEAction’s CME ...

Attend the 3rd Annual Community Symposium on Molecular Basis of ME/CFS – Register to Attend or Watch

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Stanford University is holding its 3rd Annual Community Symposium on the Molecular Basis of ME/CFS at Stanford University on Saturday, Sept. 7, 2019, sponsored by the Open Medicine Foundation. Patients, caregivers and the community are encouraged to join the community symposium to learn about the most current research, and to meet the scientists and clinicians in ...

Australia to Launch its First ME/CFS Biobank and Patient Registry

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Australian philanthropic trust the Mason Foundation will establish the first Australian national ME/CFS biobank and patient registry, with a $1 million grant. The grant consists of two components: the biobank and patient registry, and a research project which uses the samples stored in the biobank. This is significant news for ...
Individuals who were lied to and misrepresented by Netflix’s Afflicted include (left to right): Jake, Pilar, Jamison, Jake & Bekah, Jill & Janine

Netflix’s “Afflicted” Cast Sues for Defamation

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Four cast members of the Netflix series, Afflicted, have filed a lawsuit against Netflix and Doc Shop producers for defamation for portraying them as 'hypochondriacs and/or malingerers." The lawsuit indicates that the Doc Shop producers lied to the Afflicted participants “because the series was not a documentary in any sense of ...

Today, We Honor and Remember those with Severe M.E.

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Today, we honor the millions of people around the world living in darkened rooms where sound and light and touch are beyond reach, where eating, bathing and standing have become impossible. Our community is fighting every day to bring hope, health and justice to people with myalgic encephalomyelitis (ME), and, today, ...

Why the Fight is Personal

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I am so honored to work with the #MEAction community on a daily basis. Our organization is fighting hard everyday to communicate the truth about myalgic encephalomyelitis (ME) - to shout it out loud and clear - to the world. My role as the #MEAction Editor & Communications Manager is ...

Hannah Bowlus: Fighting Inequality, Finding Power in Community

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  I'm Hannah Bowlus and I’m the administrative assistant at #MEAction. I take care of basic things like mailing t-shirts, archiving and scheduling calls. I talk with a lot of you. The more I get to know this community the more urgent and vital our work feels. I get to see ...

#MEAction Responds to NIH

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As many of you know, #MEAction activists for myalgic encephalomyelitis (ME) met with the director of the National Institutes of Health (NIH), Dr. Francis Collins, on December 7 to discuss accelerating research in order to more rapidly provide diagnostics and treatments to people with ME. To read about the details of ...