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Category Archives: Arts & Letters

Living Deeply in Tiny Rooms

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Here is a question for you:  Is your life small or large? How do you know? Is it possible to have a big life in a single, small room? Or to lead a small life that is lived in many places? Questions like these have become more pertinent to me lately. They surface when ...

Beauty Sleeping: A Real Life Fairytale

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Once upon a time there lived a very beautiful princess, and the way you could tell she was beautiful was that she knew it. She didn't bother with big puffy dresses, or make up—she was beautiful on a tyre swing out in the woods of her poor little kingdom, and ...

You Are Lovely.

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Artwork by Elizabeth D'Angelo, who has severe ME. View, purchase and commission her artwork here. People can be infuriating. People can tell you that you are wrong about your own experience. That if only you were braver, bolder, cleverer, or otherwise different you’d be more. Whether the more they have in ...

Netflix Docuseries “Afflicted” is Terrible

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Read a response from some of the subjects of Afflicted: "The Truth Behind Netflix’s ‘Afflicted.'" We anxiously awaited the release of Netflix's docuseries, "Afflicted," on Aug. 10 and are appalled by the dismissive, psychosomatic lens through which the patients are ultimately portrayed. The casting director had said that the “intention is to look ...

PBS Audience Award: Vote for Unrest

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We are thrilled to announce that Unrest is in the running for the 2017-18 Independent Lens Audience Award! It was an honor to have Unrest premiere on PBS | Independent Lens this past January and it would mean the world to us if we could count on your support for ...

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 ...