Category: Awareness

Netflix’s “Afflicted” Cast Sues for Defamation

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 the word, but a

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Announcing the Art Picks for Postcards to Doctors

#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 use the same model

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UK Teenager with Severe ME Threatened with Forced Institutionalization

The ME community is rallying around 17-year-old Jehan “Gigi” who has been hospitalized with severe myalgic encephalomyelitis (ME) in the UK, and is now being threatened with being sectioned  – forced institutionalization – against her will to a psychiatric hospital for her inability to eat, speak or walk due to the effects of severe ME

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Aid Without Asking: How to Support Someone with ME

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, but I can definitely

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Photographer Seeking Bay Area Subjects to Tell Story of ME

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 his recent project on

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As I Age with ME

By Marianne Granger In my forties I was moving forward fulfilling my drive to be a community organizer/communicator/coach (my day job) and also a screenwriter (a remnant of my earlier training and work as a stage actor). Being there for my grown children and reveling in the bliss of holding my grandchildren was a part

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Read #MEAction’s Request for Information response to the NIH

The story so far NINDS, the National Institute for Neurological Disorder and Stroke at the NIH has solicited an RFI, or a Request for Information, from the ME community on how to advance research for myalgic encephalomyelitis.   With only a few weeks’ turn-around, the #MEAction NIH working group produced a compelling response based on information conveyed in

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South Carolina Raises Awareness about ME

My name is Robert Jacobs, MD and I am a retired Physician and caregiver for my wife who has had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) for more than 9 years. Despite the historical, tourism and quality-of-life allure of this beautiful state, we discovered a paucity of medical care available to patients with ME/CFS, minimal medical

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