As I Age With ME


  By Marianne Granger in #MEAction. In my forties I was moving forward fulfilling my drive to be a community organiser/communicator/coach (my day job) and also a screenwriter (a remnant of my earlier training and work as a stage actor). Being there for my grown children and reveling in the bliss of holding my grandchildren […]

What Is ME ?


  From #MEAction.   Myalgic Encephalomyelitis (ME), commonly known as Chronic Fatigue Syndrome (CFS) or ME/CFS, is a devastating multi-system disease that causes dysfunction of the neurological, immune, endocrine and energy metabolism systems. It often follows an infection and leaves 75% of those affected unable to work and 25% homebound are bedridden. An estimated 15-30 million […]

Unseen: Black People Living With ME


    By Wilhelmina Jenkins in #MEAction.    When I became ill in 1983 with what is now called ME/CFS, my life as I knew it was abruptly destroyed. I dropped into a world of pain, exhaustion, and dozens of other baffling symptoms, most particularly the cognitive disruption that robbed me of the life in […]

Toxic Masculinity Made My ME Much More Punishing


    By Jack Croxall in #MEAction.   I came to on the floor of a supermarket in an affluent London borough. I was staring up at a paneled ceiling, half-blinded by piercing white lights. After a groggy moment of confusion, panic set in. I leapt up, finding myself in the middle of a queue […]

What Is ME ?


  From #MEAction.   Myalgic Encephalomyelitis (ME), commonly known as Chronic Fatigue Syndrome (CFS) or ME/CFS, is a devastating multi-system disease that causes dysfunction of the neurological, immune, endocrine and energy metabolism systems. It often follows an infection and leaves 75% of those affected unable to work and 25% homebound are bedridden. An estimated 15-30 million […]

Amy Carlson – An Ally To The ME Community


    By Adriane Tillman in #MEAction.   Allies are critical to the success of any movement and even more so in the case of people with myalgic encephalomyelitis (ME). So many people with ME are bedridden or housebound and unable to participate in some advocacy and activist actions. While we at #MEAction work hard to […]

Homeless: How AMMES Is Keeping People With ME In Their Homes


By Erica Verrillo, who is President of the American ME and CFS Society (AMMES) in #MEAction. Years ago, Dr. Bell made the observation that many people currently living in cars most likely had chronic fatigue syndrome (CFS). (The acronym myalgic encephalomyelitis (ME/CFS) was not used at that time.) Under any circumstances, the threat of homelessness […]

Community Roundup – End-Of-Year, 2018


From #MEAction.   As always, our community continues to amaze us with its tenacity, creativity, intellect, hard work and generosity. Enjoy a round-up of some of the community happenings these past few months where people with myalgic encephalomyelitis (ME) around the world continue to fight for recognition, treatment, care and dignity. Austrian broadcast station @ATV […]

Living Deeply In Tiny Rooms


  By Zeraph Dylan Moore in #MEAction.   Here is a question for you:  Is your life small or large? How do you know? Is it possible to have a big life in a single, small room? Or to lead a small life that is lived in many places? Questions like these have become more pertinent to […]

Scottish Lib Dems Pass Motion For ME, With Amendment


  By Susan Cole in #MEAcion.   ME history was made this week in the historic capital of Scotland when delegates at the Scottish Liberal Democrats autumn conference voted to support conference motion SC5: Investing in ME – Recognition, Research, and Education. So it’s official, the motion, drawn up in consultation with #MEAction Scotland, is […]

“Listened To But Were We Heard ?” The NICE Guidelines Scoping Workshop


  From #MEAction.   On 25th May 2018, NICE held an engagement workshop with stakeholders, looking at the draft scope for the new guideline on ME/CFS. This is the second workshop held by NICE in which stakeholders were given a chance to influence the development of the new guidelines. The draft scope will be amended […]

When Medicine Fails A Child


  By Caroline Christian in #MEAction.   I am lucky in that I did not realize the fallibility of medicine until I reached the age of 38. This is when I was diagnosed with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a devastating neuroimmune disease wrongly believed by many doctors to be a psychiatric condition. Throughout the past decade of navigating […]

The Failure Of Clinical Guidance For People With ME


  From #MEAction.   ME advocate Mary Dimmock has written a comprehensive report about the flawed science that led to the recommendation of cognitive behavioral therapy (CBT) and graded exercise therapy (GET) for people with Myalgic Encephalomyelitis.  The patient community has long reported these treatments to be ineffective and harmful, and, yet, health societies and […]

#MEAction Rejects The Findings Of The SMILE Trial Of The Lightning Process For Chronic Fatigue Syndrome


    From #MEAction.   Trial Uses Flawed Methodology That Can Lead To False Positives Following the release of the results of the SMILE trial, Ben HsuBorger of ME Action said: “The SMILE trial of the Lightning Process, a known quack treatment, for ME/CFS, used unblinded treatment coupled with subjective, self-report outcomes. It illustrates that such serious […]

As Summer Ends, A Warning To NIH


  By Adriane Tillman in #MEAction.   Johanna Kaiser, a person who has had ME for decades, sent this open letter over Labor Day to Dr. Walter Koroshetz, director of the National Institute of Neurological Disorders and Stroke (NINDS) and Dr. Francis Collins, director of National Institutes of Health (NIH). Staff member Adriane Tillman only posted the article.  Dear Dr. Walter Koroshetz and […]

An Entire State Goes “M.E.” In Congressional Breakthrough


    By Cort Johnson in Health Rising.   An entire state goes “ME”. That’s never happened before. Courtney Miller of Simmaron, Emily Taylor of the Solve ME/CFS Initiative, MEAction and the USAWG worked together to enroll the entire Nevada Congressional delegation to put its total support behind increased funding for ME/CFS. This is notable not just […]

Proclaim It Loud: States Issue Resolutions For ME


    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


    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


    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


    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

Julie Rehmeyer

    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


  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


    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


      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


  #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 […]

PACE Trial’s ‘Sister’ Study Overlooked


  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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