Category Archives: Arts & Letters

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

/ by / 15 Comments
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

/ by / 7 Comments
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

/ by / 6 Comments
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

/ by / 7 Comments
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)

/ by / 0 Comment
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

/ by / 1 Comment
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

/ by / 0 Comment
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 ...

Send TGIF Letters to Francis Collins

/ by / 6 Comments
Friday Letters to Francis Collins ...

#MillionsMissing Holland gets the ear of the Minister of Health

/ by / 0 Comment
#MillionsMissing Holland has made its voice heard in the House of Representatives.   House of Representatives member Linda Voortman has filed questions about ME based on the protest demands with Holland’s Minister of Health, Welfare and Sport, Edith Schippers. In the letter, Voortman asks the minister of health if she is ...

#MEAction Network UK: FITNET letter published in Positive Health Online

/ by / 1 Comment
#MEAction Network UK’s statement denouncing CBT as a form of treatment for ME has been published in the January edition of Positive Health Online today. The letter was sent in response to FITNET, a controversial study that purported children and young people with ME could be successfully treated through CBT conducted ...
Menu