Category Archives: Arts & Letters

We’re upright in all but body!

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#BedFest was quite the occasion. People appeared in PJ's, crumpled t-shirts, crochet vests, keen to address the wider world; people whose voices are seldom heard, called together by #MEAction and its volunteers to share music, art, photography and multifarious creativity and raise ME-Awareness. We didn't have to leave the house.. ...

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’s memoir is out. Purchase her book today!

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“I read an early version of Through the Shadowlands while I was driving around the country, tent in my rental car, terrified that something inexplicable was wrong with me, convinced that I was losing my mind. Julie Rehmeyer’s book showed me that I wasn’t ...

#MEAction plans virtual concert for May 6th: Submit your Art

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Whether you are a musician, poet or puppeteer, expressing yourself through a body devastated by Myalgic Encephalomyelitis (ME) or Chronic Fatigue Syndrome (CFS) is suddenly an impossible feat - and an improbable opportunity. #MEAction is excited to announce the launch of a virtual concert called #Bedfest on May 6th to showcase ...

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, ...

Coming Out of the Closet

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Obviously, I still have not integrated the sick person I am with my self-concept. In my heart, I aspire to be an adventurer. In my brain, I am a popcorn popper of plans and temptations. In reality, I can do one activity and, on a good day, maybe two, but ...

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 ...

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 ...

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 ...
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