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Category Archives: Severe ME

Words from the Depths of Severe ME: Honoring the life of Rosie

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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 ...
Gigi riding a mobility scooter.

Gigi Update: Lewisham Hospital Removes Gigi’s Pain Medication, Leaving Her in Rising Pain

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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 Her family is desperate to bring her home, but the hospital has withdrawn Gigi's pain medication, leaving her in steadily rising pain ...

Today, We Honor and Remember those with Severe M.E.

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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, ...

Support Severe ME Day: Join the Silence Challenge

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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 ...

UK Teenager with Severe ME Threatened with Forced Institutionalization

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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 ...

Australian Teenager with Severe ME Describes Forced Psychiatric Treatment

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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 ...

Journal Publishes Article about ME Biobank

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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 ...

The World Needs to See This: Living with Severe ME

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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 ...

Honoring those with Severe ME on Aug. 8

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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 ...

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

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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 ...