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Category Archives: Arts & Letters

Individuals who were lied to and misrepresented by Netflix’s Afflicted include (left to right): Jake, Pilar, Jamison, Jake & Bekah, Jill & Janine

Netflix’s “Afflicted” Cast Sues for Defamation

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Four cast members of the Netflix series, Afflicted, have filed a lawsuit against Netflix and Doc Shop producers for defamation for portraying them as 'hypochondriacs and/or malingerers." The lawsuit indicates that the Doc Shop producers lied to the Afflicted participants “because the series was not a documentary in any sense of ...

Announcing the Art Picks for Postcards to Doctors

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#MEAction is launching an initiative that will allow you to help educate your local clinicians, called Postcards to Doctors! Postcards to Doctors will work a lot like Postcards to Voters. The Postcards to Voters campaign leveraged handwritten postcards to individuals in order to encourage them to vote.  Postcards to Doctors will ...

Aid Without Asking: How to Support Someone with ME

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The love of my life battles ME/CFS. It’s a disease that my father has also struggled with since I was a boy, so it’s one I know well. I knew life wasn’t going to be simple when we met, but I dove in head-first anyway.  I can’t say it’s been easy, ...

Photographer Seeking Bay Area Subjects to Tell Story of ME

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A Bay area-based photographer is seeking people with myalgic encephalomyelitis (ME) who are willing to share their stories and to be photographed for his new awareness raising initiative.  Photographer Mark Tuschman's work can be seen on his website, his book project on the lack of human rights for women and girls and through ...

Are You a Young Person Affected by ME? How do you Visualize Health Equity? Join a National Contest

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The U.S. National Academy of Medicine (NAM) is holding a contest for young people (ages 5 to 26) to submit art, music, writing, videos, dance, etc. related to social determinants of health equity. This is an excellent opportunity for youth with Myalgic Encephalomyelitis (ME) - and their friends and siblings - ...

Community Roundup – End-Of-Year, 2018

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As always, our community continues to amaze us with its tenacity, creativity, intellect, hard work and generosity. Enjoy a round-up of some of the community happenings these past few months where people with myalgic encephalomyelitis (ME) around the world continue to fight for recognition, treatment, care and dignity. Austria Austrian broadcast station ...

A Poet Contextualizes Our Struggle

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Poet and artist, Christiana Baltais, writes about moving the mountains of stigma that harm people with myalgic encephalomyelitis (ME) in this poignant poem. She asked that we share her poem to encourage our community and beyond - people with ME, friends, family and allies - to donate to our cause on #GivingTuesday. Facebook ...

Community Roundup – Telling Our Story to the World

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Across the globe, we are pursuing creative projects across all mediums to tell the world about myalgic encephalomyelitis (ME). In our fall roundup, you'll be inspired reading about the work and accomplishments of some of our community heroes. Support the #MEAction community by donating to our #GivingTuesday campaign this Tuesday, Nov. 27  where ...

Sept & Oct — Research Roundup

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The end of September was a whirlwind! Between the CDC's website work, the CDC's awarding of a sole contract, the planning sessions for the NIH meeting, and the Stanford symposium, there wasn't much time to devote to breaking down the science.  If you'd like to see a quick run-down of ...

Living Deeply in Tiny Rooms

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Listen to the article:   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 ...