Category: Severe ME

The World Needs to See This: Living with Severe ME

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

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Honoring those with Severe ME on Aug. 8

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.

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NIH Director: Our Judge and Jury, Prison Guard and Executioner

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

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Inquest Rules Merryn Crofts Died Due to Severe ME

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

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A Tribute to Mag Friel

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”

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Support Severe ME Day: Join the Silence Challenge

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

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