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.

People around the world are marking the day with stories about severe ME using the hashtag #SevereMEday, and honoring those whose lives have been taken by this disease.

The day of remembrance began in 2013 by the 25% ME Group as a response to the death of Sophia Mirza who died of severe ME in 2005 at the age of 32. Her GP told her that she was trying to get attention, and that her mum was enabling her. Sophia was sectioned against her will and sent to a psychiatric facility after refusing to go to a particular ME clinic; the experience devastated her health. The coronor’s report showed that Sophia had massive spinal cord inflammation, and that she died as a result of acute renal failure arising from the effects of ME.

Aug. 8th is Sophia’s birthday.

The experience of living with severe ME has been chronicled in the films Voices from the Shadows featuring the story of Sophia; Perversely Dark, which shows two ME patients in Norway who live in total isolation and darkness, their bodies unable to handle the smallest amount of mental, social, or physical stimulus; and most recently in the documentary, Unrest, which tells, among others, another horrifying story of a young women forcibly removed from her home and placed into a state institution for psychiatric intervention.

The crew filming Perversely Dark writes that they were “astounded by these patients’ non-despairing fortitude, courage, and level of intellectual reflection despite the lack of proper stimuli or external battery life recharging them when confined to be in the dark with a great unknown.”

Donate to the Cause

Amanda Hendrie has challenged her carers to 24 hours of silence to raise money for the 25% ME Group. Donate to the cause here. The idea for the challenge was Amanda’s idea. Amanda is completely bed bound and unable to eat or drink anything, fed by a tube, laying in the dark, suffering severe symptoms (including needing resus). She has also lost the ability to speak or move her facial muscles.

Remembering Those We have Lost

We remember and honor those we knew with ME who passed away this year, though we know there are many more:

Harvey Keith Carden

Harvey was a US Army Veteran who first developed ME in 1973, which progressed to severe ME in the mid-eighties. Before getting sick, he worked primarily in the construction trades, owning his own small company for some years.

Harvey was a fearless warrior educating the public and the medical profession about the disease while at the same time helping and supporting others with the same condition. He secured city proclamations for ME, and successfully got Houston to light up City Hall for May 12th Awareness Day. Watch him giving a speech on the steps of the Michigan State Capitol for #MillionsMissing in 2016. (Starting at about 4 minutes, his closing appeal is really powerful.)

Harvey was also an advocate for veterans, especially those with Gulf War Syndrome, which shares many characteristics with ME. Read more about Harvey’s life.

 Anne Ortegren

Anne was a well-loved and well-respected ME advocate from Sweden who lived an abundant, adventurous life — often outdoors — until she fell severely ill with ME at the age of 28. She was one of many who was advised by doctors to push through her symptoms, only to worsen her health. Anne wrote an incredibly poignant essay about living with severe ME.   

Anne took months to write a letter to the community about her decision to end the unbearable suffering she experienced. Read her letter here. Her closing words to the ME community were, “Take care of each other.”

Robert (Bob) Courtney

At age 48, Bob had suffered from ME for thirteen years, and had experienced a drastic decline in his health at the time of his death. Formerly a care worker, he was passionate about the quality of ME research, and authored numerous published letters in medical journals, including a reanalysis of the PACE trial.

Bob’s meticulous, dogged Freedom of Information requests began a shared and arduous quest for the truth about the research, along with other patient-researchers. This work led ultimately to the revelation that the supposedly successful £5 million, government-funded PACE trial of talking therapy and exercise for ME patients was, in fact, a failure.

The ME community adored Bob, considering him a gift to the community composed of warmth, wit and kindness. Friends of Bob wrote a long tribute to him.

“It didn’t matter that most of us never met him in person or spoke with him on the phone. We may not have known his face or the sound of his voice, but we loved him. As one patient said, ‘It is the mark of the man that I, someone living on the other side of the world who only knew him through his online posting, should feel so deeply saddened by his death.’

His humanity and compassion were absolutely dependable. We could trust him to calm any situation with his wisdom and diplomacy, and many of us went to him in private with our troubles. He was humble and modest about the value of his advice, but it was always even-handed, insightful, and hugely valuable. We would come away calmer, happier, and often having learned something about ourselves.

Mourning those we’ve lost, we can’t help but reflect on their kindness, their resilience, their strength, and their advocacy.  This ME day, share your memories of those we’ve lost to ME, and help spread awareness today on social media.  Ensure no one can forget the 25%.