Browse News: Global

Sharing UNREST through Library Donations

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  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 ...

A Tribute to Mag Friel

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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 ...

Voices from Sacramento: Janet Dafoe and Ashley Haugen

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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 ...

Julie Rehmeyer: Hope and Despair in Through the Shadowlands

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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, ...

Stanford team announces update on ME/CFS research

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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 ...

pwME to NIH: People with ME are Being Murdered by Neglect

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An American with ME had strong words for the National Institute of Health (NIH): You have stolen 40 years of my life. Johanna Kaiser gave a brave testimony about the neglect of people with ME during the February 1, 2017 phone meeting with the NIH in which institute leaders answered questions about ...

ME Activist Basics: Bird-Dogging and YOU!

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Bird-dog: (verb) search out or pursue with dogged determination. Contact with elected officials at town hall meetings cannot be overvalued. Handfuls of bird-doggers attend meetings around the country and change the course of history everyday.  Never heard of bird-dogging?  Bird-dogging is a strategy used by activists who seek out elected officials, ...

Drastic changes to Ampligen clinical trial hurts ME patients – sign the petition to fight it

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Patients in the Ampligen clinical trial are asking for community help to protest changes that will force many to stop getting this medicine. Please sign our petition urging Hemispherx to put ME patients first, always ...

Dimmock, Mirin & Jason: Estimating disease-burden in the US

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Yesterday, Mary Dimmock, Arthur Mirin and Leonard Jason published a hallmark study in disease burden in myalgic encephalomyelitis. Why is funding so low? Funding for ME/CFS is arguably the lowest per patient for any major disease in the United States, averaging to about $5 per patient per year.  Compare this to multiple ...

Dr. Nahle’s Webinar Provides Overview of Current Research

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The Solve ME/CFS Initiative (SMCI) hosted a webinar December 15 in which Zaher Nahle, PhD, MPA, summarized research in which they are participating or supporting. Nahle is the Vice President for Research and Scientific Programs at SMCI. Nahle began by listing the problems associated with ME’s perception, funding, and research.  “The ...
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