Tag: Myalgic Encephalomyelitis

IL. House of reps shows support for ME

The plight of people living with Myalgic Encephalomyelitis (ME) was heard in Illinois this week. The parent of a young daughter with ME, Amy Mooney, worked with her state representative, Michael J. Zalewski, to introduce a state resolution that recognizes ME as a tragic, disabling disease, and that commits to improving the availability and quality of medical care

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"Unrest" premieres in Copenhagen to major media coverage

There is one more screening of Unrest at the CPH:DOX film festival on March 24th, and then Unrest heads to the RiverRun International Film Festival in Winston-Salem on March 31st. Unrest made its international and European premiere in Copenhagen, Denmark at CPH:DOX, one of the leading festivals for documentary film in the world, on March 17.

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Congress delays vote on American Health Care plan – Act now

Please note: #MEAction welcomes submissions from all contributors regarding issues that affect the health care of people living with Myalgic Encephalomyelitis. This action reflects the viewpoint of the individual submitter and not necessarily of #MEAction. We welcome all submissions regarding the American Health Care Act. #MEAction is a non-partisan organization, and is not affiliated with any political party.

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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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SF Bay Area: Get Stanford Some Healthy Controls!

If you live in the San Francisco Bay Area, or know any others who do, please consider asking them to donate blood to the Stanford Genome Technology Center as a healthy control. The blood will be used for multiple purposes, including in Ron Davis‘s ME/CFS research.  If you know individuals who are happy to help

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How an Australian’s FOI request busted open a UK science scandal

The 2011 PACE trial examined the effect of graded exercise therapy and cognitive behavioural therapy against standard medical care, but refused to share their data.
West Australian Alem Matthees filed a UK Freedom of Information Act. The ruling released the data and further examination found glaring problems with the study.

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

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 a public venue is called

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US: Family testifies about CDC's harmful recommendations at CFSAC

A member of the Shaw family reads their testimony during the comment period at the January CFSAC meeting: Good afternoon. I have had untreated ME/CFS for 38 years. Our testimony today is on the topic of the Center for Diseases Control’s (CDC) CFS group. The 2015 National Academy of Medicine report characterizes post-exertional malaise, or

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