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Category Archives: Arts & Letters

It’s Not “All in My Head”: Living with a Misdiagnosed Disability Five Years on. Volume Three

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Read Volume One and Volume Two.  Day #5 cont’d. My partner and I hit a point of exhaustion. From him having the flu, my turn in symptoms and the lack of wheelchair friendly locations, creating your own fun on a holiday is an easy concept when your cup is full but both our ...

A song for ME: Blowin’ in the Wind

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    The following arrangement of Blowin’ in the Wind, with alternative lyrics about the struggles faced by people with ME, is performed by patients and their carers from around the world: If you would like to play and/or sing this song at a #MillionsMissing protest on 12 May, or at any other event, ...

A Tribute to Mag Friel

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I know hardly anything of Mag’s life before she fell ill in 1993. We were witnesses to each other’s ‘now’. There are clues though: when I sent our shoes to the #MillionsMissing protest, Mag selected a pair of dainty black Velours stiletto heels with pointed toes. Imagine her staccato gait ...

Hold On, Firebird

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Once upon a time, I woke up on fire. This burning was one of invisible flames, curling themselves around me and offering nothing but excruciating pain and the sort of exhaustion which bears down on you like a weight your whole body must carry ...

‘Unrest’ at the Scottish Parliament

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The Time for Unrest event at the Scottish Parliament on 30th January was an opportunity to raise awareness of Myalgic Encephalomyelitis (ME) among Members of the Scottish Parliament (MSPs), and ask them to take action to support the 21,000 people with ME in Scotland. Attended by over 70 people, it ...

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 ...