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
Category: Severe ME
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
Samuel Wales, who has had ME for many years, has kindly allowed us to republish his latest blog post, which can be found here. Intro My previous post contains my open letter to Francis Collins. It got a lot of readers. Many were from NIH. But who exactly at NIH is listening? I was hoping
I know hardly anything of Mag’s life before she fell ill in 1993. We were witnesses to each other’s ‘now’. There are clues though: when I sent our shoes to the #MillionsMissing protest, Mag selected a pair of dainty black Velours stiletto heels with pointed toes. Imagine her staccato gait – upright and stable! Last year, while Cannes was in the news, she wrote: “May 1991 sailed to Cannes on my partner’s yacht, hoping to complete on 5 million film deal we’d worked on for 4 years. May 2017 achieved my goal of having bed sheet changed, first time in months. Heaven. Happy ME Awareness Day. Love and eternal hope for us all. xxxxxx”
Following the tragic death of Robert Courtney, some of his friends created the tribute below, and provided the message that precedes it. We at #MEAction are pleased to reproduce both here. We, some of Bob’s many friends, have put together this tribute to him. We do not think it is appropriate to discuss the circumstances
Severe ME patients publish paper questioning central findings of Dutch CBT/GET trial
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