Photo is of Rosie with her niece 10 years ago. Today we honor the life of Rosie Bayman who died from severe myalgic encephalomyelitis (ME) one year ago, today.* Rosie, from Warwickshire, England, had ME for five years before she died. Rosie wrote poetry in her head when she had to lie in darkness and in silence,
California advocates for myalgic encephalomyelitis (ME) are fighting for the state to institute a statewide Centers of Excellence program that would train ME specialists, provide state-of-the-art treatment for people with ME, and undertake advanced research. Activists across the state have already met with 24 state legislators to discuss this initiative. Activist and parent of a
We are excited to announce our newest Social Media Ambassador, Clarinda Viviers, from South Africa! A social media ambassador is a volunteer who is knowledgeable, an enthusiastic supporter of the ME community and #MEAction, and has a strong social media presence. Each ambassador amplifies #MEAction’s social media efforts and share news with #MEAction’s social media
The Greater London Authority’s offices have held two Unrest screenings over the past few months to raise awareness of myalgic encephalomyelitis (ME). The screenings, held for staff, took place at Union Street and City Hall, and were part of ME Awareness Week and the #MillionsMissing campaign. Officers and staffers attended the two screenings, held in
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
An update on Gigi’s situation: Gigi’s family are launching an urgent appeal to find lawyers to bring their daughter, 17, home from Children’s Ward in Lewisham Hospital, London. Her family is desperate to bring her home, but the hospital has withdrawn Gigi’s pain medication, leaving her in steadily rising pain and making the move impossible.
Listen to the article: Part 1: Part 2: In the past two weeks, The Guardian/The Observer and Psychology Today US have published articles portraying the myalgic encephalomyelitis (ME) community as an angry, misguided mob using social media to denigrate scientific research. Both articles focus on the criticism that Dr. Michael Sharpe, one of the
#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
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
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
