Tag: Myalgic Encephalomyelitis

Demystifying the Diagnostic Criteria for ME and Related disease

  Additions and corrections Initially we stated that ICC requires three months before diagnosis; this was in error. ICC specifies that the disease can be diagnosed immediately. This has been corrected in the text and within the pdf comparing criteria. One reader pointed out a very useful misconception regarding different criteria for different purposes, which

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

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 summary by

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

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 incredibly grateful for her perseverance

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

#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 program – we’ve sent out

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

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 person. Registration closes on Aug.

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

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 the Australian ME/CFS community, and has been picked up by mainstream media.

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Netflix’s “Afflicted” Cast Sues for Defamation

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 the word, but a

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

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, we take time to

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Why the Fight is Personal

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 to support, guide and spearhead

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Hannah Bowlus: Fighting Inequality, Finding Power in Community

  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 everything that’s going on

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