Category Archives: Global

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, ...
Health minister Jane Philpott, right, held a meet and greet at the Markham District Veterans Association building. Scott Simpson,left, and Jeffrey Smith, centre with hat, are part of a planned protest. Protesters want more funding and a change of thinking towards neurological illness ME myalgic encephalomyelitis. Jan 15, 2016

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, ...
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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 ...
GBD-Compare

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 ...

Winners of the #MillionsMissing Art competition

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We're excited to announce the winners of the #MillionsMissing Art competition. 1st prize went to CJ Janzen from Cambridge, Ontario who made two amazing songs about ME. Listen here: Myalgic Encephalomyelitis Song - Rough by CJ Janzen | Free Listening on SoundCloud A Song For M.E. by CJ Janzen | Free Listening ...
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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 ...
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