Today, we honor the millions of people around the world living in darkened rooms where sound and light and touch are beyond reach, where eating, bathing and standing have become impossible. Our community is fighting every day to bring hope, health and justice to people with myalgic encephalomyelitis (ME), and, today, we take time to
August 8th is Severe ME Day. It is a day of awareness raising for those suffering severe Myalgic Encephalomyelitis as well as a day of remembrance. August 8th was the birthday of Sophia Mirza, a 32 year-old woman who died of ME. One way you can participate and raise awareness for Severe ME Day is to
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
Originally published on ME Australia. by Sam* Sam (*not her real name) is a teenager living in Australia’s largest city without access to treatment to help her. Sam was prescribed graded exercise therapy (GET) and cognitive behavioural therapy (CBT) repeatedly. After doing GET, Sam became housebound. Sam now has very severe ME and says even
Frontiers in Neurology, an open-access journal, published an article about the UK ME/CFS Biobank this week. This narrative paper describes the journey of how people with Myalgic Encephalomyelitis /Chronic Fatigue Syndrome (ME/CFS) came together with a multidisciplinary team of researchers to conceptualize and establish the biobank, which provides a critical resource for biomedical research into
Twenty-year-old, Linda, from Sweden shares her story about getting ME at the age of 4, living with a mild version of it, which has since turned severe. Originally posted on #MillionsMissing Sweden’s Facebook page. Isolated from the outside world, stuck in-between four walls, trapped in the prison of my own body… I was only 17
Photo of the Caged Bird who writes about her experiences living with severe ME here. Today, August 8th, marks Severe Myalgic Encephalomyelitis (ME) Day of Understanding and Remembrance. It is a day to remember and honor the 25 percent of ME patients who are housebound or bedbound, and those who have passed away from ME.
An anonymous testimony given before the Chronic Fatigue Syndrome Advisory Committee (CFSAC), which met last week for its bi-annual meeting to discuss recommendations to make to the Secretary of Health and Human Services (HHS) on issues related to Myalgic Encephalomyelitis and chronic fatigue syndrome. *Note, an anonymous person gave this testimony. #MEAction has published it but did not
Australian Ricky Buchanan has written a much-needed report about the issues facing bedbound and homebound people in getting access to medical care.
An inquest into the death of Merryn Crofts, 21, concluded that she died from starvation due to severe Myalgic Encephalomyelitis (ME) – making her the second person in the U.K to have ME listed on a death certificate. Merryn weighed less than six stone (84 pounds) at the time of her death, and had spent
