#MEAction

Proclaim It Loud: States Issue Resolutions For ME

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    By Adrianne Tillman in #MEAction.   Government moves slow. Any action requires lengthy processes – all of the checks and balances intended to create better, more deliberate legislation. Activists for Myalgic Encephalomyelitis (ME) across the country understand the sausage-making well as they have sought for their state legislators to recognize the urgent challenges […]

Engaging People With ME As Partners In The CRCS

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    From #MEAction.   A view from the US.   The National Institute of Health’s RFA for ME/CFS Collaborative Research Centers breaks new ground. For the first time, the funding agency is strongly encouraging researchers “to establish partnerships with patients groups and solicit their input” as part of their research plan. #MEAction assembled a […]

#MEAction Plans Virtual Concert For May 6th: Submit Your Art

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    From #MEAction.   Whether you are a musician, poet or puppeteer, expressing yourself through a body devastated by Myalgic Encephalomyelitis (ME) or Chronic Fatigue Syndrome (CFS) is suddenly an impossible feat – and an improbable opportunity. #MEAction is excited to announce the launch of a virtual concert called #Bedfest on May 6th to […]

Australia University Will Study Effects Of XBOX On Physical Activity In ME/CFS Patients

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    By Sasha Nimmo in #MEAction.   The University of South Australia has approval to begin the trial, “Active video gaming to increase physical activity in adults with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis.” The study has no set research criteria, despite studies that show 2 out of 5 patients are misdiagnosed with CFS/ME in Australia. The study does not […]

Julie Rehmeyer: Hope And Despair In Through The Shadowlands

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    From MEAction.   Recently, #MEAction sat down with Julie Rehmeyer to discuss her new book Through the Shadowlands, her op-ed in the New York Times with David Tuller, and next steps. What made you embark on a project like Through the Shadowlands? I’m a writer, and it was a big experience I was […]

Illinois House Of Reps To Vote On Resolution For ME

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  From #MEAction. A View From The USA.   The Illinois House of Representatives will vote on a state resolution this Thursday, March 23 that recognizes Myalgic Encephalomyelitis (ME) as a tragic, disabling disease, and that commits the state to improving the availability and quality of medical care, as well as encourages universities in Illinois […]

Update: The Ongoing Work Of #MillionsMissing

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    By Adrianne Tillman in #MEACTION.   Momentum continues from the #MillionsMissing campaign that was born last May. Activists took to the streets worldwide in 11 cities in May –  and in 25 cities in September – to protest their government’s neglect of people with ME. While the posters are now stored away, activism […]

The Global Protest For M.E. Rights

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      Demand equality for people with Myalgic Encephalomyelitis  #MillionsMissing is a movement to raise awareness for M.E., an underfunded and ignored disease. This September 27th, 25 cities in nine countries will demand change. We will present protest demands asking for increased government funding for research, clinical trials, medical education and public awareness. It’s not too […]

#MEAction Delivers Lancet PACE Petition, Makes Wall Street Journal

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  #MEAction has sent an 11,000-signature petition to The Lancet, calling for the retraction of “misleading” analyses and claims published in a 2011 PACE trial paper concerning the effectiveness of cognitive behavioural therapy and graded exercise therapy for ME/CFS. Copies of the petition, which when printed were over 400 pages, were also delivered to the UK […]

Study Finds Evidence Of Down Regulated Immune System In ME/CFS Patients

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  What was the study? Researchers used 100 blood samples from the Solve ME/CFS Biobank of patients who were long-term patients of expert clinicians and met the Fukuda and/or Canadian Consensus case definitions. These blood samples were compared in a blinded method with 79 healthy control samples from people who were matched on criteria such […]

PACE Trial’s ‘Sister’ Study Overlooked

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  Sasha Nimmo reports on David Tuller’s blog in #MEAction.   In his Virology blog post, David Tuller examines results of ‘sister’ to the PACE trial In 2003, when the United Kingdom (UK) Medical Research Council announced the PACE trial, they also announced the Fatigue Intervention by Nurses Evaluation (FINE) trial. Why haven’t we heard […]

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