Category: Featured news

Unseen: Black People Living With ME

By Wilhelmina Jenkins 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 physics that I loved. After

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Missing No More: Improving the Lives of People with ME and CFS

Senator Jordon Steele-John has announced the Australian Greens’ policy on Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS), planning to commit $15 million to biomedical research, a national summit, better access to the National Disability Insurance Scheme (NDIS) and money for advocacy organisations. This policy is welcomed by the ME and CFS community in Australia. The Australian Greens

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Meet The Scientist: Professor Anthony Komaroff

Anthony Komaroff, MD, is the distinguished Simcox-Clifford-Higby Professor of Medicine at Harvard Medical School and Senior Physician at Brigham and Women’s Hospital in Boston. He has published over 230 research articles and two books. From 1997-2015 he was editor in chief of the Harvard Health Publications Division of Harvard Medical School, the division responsible for disseminating all of the medical school’s

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Toxic Masculinity Made my ME Much More Punishing

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 winding towards one of the tills. A family

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Celebrating Our Wins for ME!

It has been been an exciting time for the myalgic encephalomyelitis (ME) community these past few weeks. We are in awe of the sacrifices and hard work people with ME and their allies have made to make their voices heard.     #MEAction and the Solve ME/CFS Initiative organized the largest Advocacy Day ever with more than 200

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#MEAction Medical Travel Scholarship Award Winners

#MEAction Medical Travel Scholarship   Because of the generous donation from a private family foundation, #MEAction has been able to provide travel scholarships to medical practitioners and medical students to attend the National Institutes of Health conference on ME this Thursday and Friday.   The goal of the meeting is to showcase high-quality studies to

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What A Day…

What A Day… ME Advocacy Day 2019 was a huge success! #MEAction and Solve ME/CFS Initiative were very excited to partner for this year’s Advocacy Day and we were blown away by everyone’s response and involvement. With over 200+ people registered to attend in person and even more of you taking action from home, we

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GET and CBT are not safe for ME – summary of survey results

Listen to the recording:  #MEAction UK Lay Summary of the 2019 Forward ME Group CBT & GET Survey Topline findings A new patient survey of 2274 respondents has confirmed that graded exercise therapy (GET) is harming a large majority of people with ME receiving this treatment in the UK. A majority of people with ME

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#MillionsMissing: Tell Your Story to the World  

One of our goals for #MillionsMissing is to tell our story of myalgic encephalomyelitis (ME) to the world. Since 2016, we have been collecting stories of people missing from their lives due to ME, which we display at demonstrations around the world, and circulate on social media. We are collecting short personal stories again this year

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Food, Clothing and Shelter: Delivering the Basics to People with ME

Erica Verrillo is President of the American ME and CFS Society (AMMES)  When I was a child, my mother taught me the three basics of human survival: Food, clothing, and shelter. These, she said, are essential for our existence. At the time, I understood food to be essential, and possibly shelter, but I did not

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