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Category Archives: Severe ME

We Remember and Honor the Life of Heather Colman-McGill 

Our dear community, Let us take a moment to gather together and comfort one another. We are saddened to bring you news of a death in the community. Heather Colman-McGill has passed away. We send our heartfelt condolences to all of Heather’s loved ones. We know that many in our community had ...

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

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 ...
Gigi riding a mobility scooter.

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

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 Her family is desperate to bring her home, but the hospital has withdrawn Gigi's pain medication, leaving her in steadily rising pain ...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

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, ...

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 ...

UK Teenager with Severe ME Threatened with Forced Institutionalization

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

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 ...

Journal Publishes Article about ME Biobank

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 ...

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 ...

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 ...