Category Archives: Global

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 ...

Three ways to help Unrest change the story

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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 ...

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, ...

Canada uses “bird-dogging tactics” to force meeting with health minister

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Toronto: #MillionsMissing activists attended their federal health minister’s “meet-and-greet” on Jan. 14th to ask the health minister to respond publicly to their request that she announce Myalgic Encephalomyelitis (ME) is a biological - and not psychological - illness. This tactic to pin down an official with a specific question in ...

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 ...

Is SIRS, CARS, MARS – and now PICS – causing the “CHAOS” in ME/CFS?

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Could ME/CFS be the post SIRS ‘immune paralysis’ state of CARS (Compensatory Anti-Inflammatory Response Syndrome)? Or MARS (mixed antagonists response syndrome)? ...

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 ...

Epic Measures: How One Man Changed the World (and Possibly ME/CFS and FM As Well)

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Chronic fatigue syndrome (ME/CFS) and fibromyalgia (FM) have a long, long way to go before they get the attention and resources they deserve. It would take a heroic leap to quickly achieve what people with these diseases deserve and what the diseases themselves - given their economic costs / burdens ...
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