Category: Global

OMF Creates Harvard ME/CFS Collaborative Research Center

The Open Medicine Foundation (OMF) is proud to announce that it has funded $1.8 million for the establishment of a new ME/CFS Collaborative Research Center at the Harvard Medical School affiliated hospitals, which includes Massachusetts General Hospital (MGH), Brigham and Women’s Hospital, and Beth Israel Deaconess Medical Center.  The new Harvard Center will be led

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Calling all Patients: Fill Out the Research Survey about PEM

DePaul University is asking the patient population to fill out a survey to better understand the effects of post-exertional malaise (PEM) in people with Myalgic Encephalomyelitis and Chronic Fatigue Syndrome. The patient community aided in the development of this questionnaire to more accurately define and measure abnormal responses to physical and/or cognitive exertion. “We are

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The Global Impact of #MillionsMissing

The impact of #MillionsMissing 2018 was phenomenal. Protestors took to the streets in 100 countries across the world with demonstrations taking place in North America, South America, Europe, the United Kingdom, South Africa and Asia. Along with people taking action from home, there was a total of 300 visibility actions. More than 50 news organizations ran

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Sharing UNREST through Library Donations

  Activism doesn’t always have to take place in government offices or with signs and shouting; it can take place in quiet libraries. Library systems are the target of Cindy Downey’s efforts to make Jen Brea’s documentary Unrest accessible to all. Downey, of British Columbia’s Okanagan Valley, donated copies of Unrest to three provincial library

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A Tribute to Mag Friel

I know hardly anything of Mag’s life before she fell ill in 1993. We were witnesses to each other’s ‘now’. There are clues though: when I sent our shoes to the #MillionsMissing protest, Mag selected a pair of dainty black Velours stiletto heels with pointed toes. Imagine her staccato gait – upright and stable! Last year, while Cannes was in the news, she wrote: “May 1991 sailed to Cannes on my partner’s yacht, hoping to complete on 5 million film deal we’d worked on for 4 years. May 2017 achieved my goal of having bed sheet changed, first time in months. Heaven. Happy ME Awareness Day. Love and eternal hope for us all. xxxxxx”

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Voices from Sacramento: Janet Dafoe and Ashley Haugen

Some of you may know Dr. Janet Dafoe and her daughter Ashley Haugen through their tireless advocacy work for ME.  Dr. Dafoe’s son and Ashley’s brother, Whitney Dafoe, has severe ME, and is the impetus behind their efforts to raise funding, raise awareness, and raise hell. These statements were read at the Sacramento California rally on June 2, 2017.

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Three ways to help Unrest change the story

1) Sign up Sign-up to receive Unrest email updates, so you know when the film is coming to a city near you, your family, or your friends! Help us use the film to create a circle of allies, build the movement to fight for equal treatment, and find a cure. 2) Get social Join the Unrest social

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Julie Rehmeyer: Hope and Despair in Through the Shadowlands

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 going through, having ME.  It

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Stanford team announces update on ME/CFS research

A research team at Stanford gave an update yesterday on some of the breakthroughs its team has made in understanding the metabolic cycles that are not working properly in people with ME/CFS that might be at the heart of the disease. Ronald W. Davis, PhD, made the announcement via YouTube. Davis directs the CFS Research Center

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