Category Archives: Awareness

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 ...

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, ...

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

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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 ...

US: Read Terri Wilder’s CFSAC Testimony

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  The CFS Advisory Committee (CFSAC) provides advice and recommendations to the Secretary of Health and Human Services (HHS) through the Assistant Secretary for Health on issues related to myalgic encephalomyelitis and chronic fatigue syndrome (ME/CFS). The committee meets twice-yearly, and recently met Jan. 12-13, 2017.  #MEAction activist, Terri Wilder, spoke during the ...
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US: Read Lily Chu’s CFSAC Testimony

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Thank you for this opportunity to address the CFS Advisory Committee. I am writing to in response to the call for comments regarding how the US government might engage members of the ME/CFS community, especially patients and their lay supporters, in addressing and solving the clinical, research, educational, and public ...
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ME/CFS Advocacy Down Under in 2016

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2016 was a big year for ME/CFS advocacy. As we turn over the page to the fresh new year, the #MEAction Network Australia group reflects on some of the highlights of its advocacy efforts in 2016 ...

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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Send TGIF Letters to Francis Collins

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Friday Letters to Francis Collins ...
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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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