Adam

@ABrokenBattery • 8,175 subscribers

Severe ME patient currently on a 10% battery, the gas goes out more than I do. I also compile ME/CFS Awareness videos.

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Adam

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ME “is as serious as AIDS, cancer, multiple sclerosis. You feel as ill as those people do, but neglected a lot by friends and family because they don’t realise how sick you really are.” ME patient Barbara Kell, BBC Look North 2012 #MECFS

“He was a doctor who ran marathons. Now, walking to the bathroom is harder than any marathon he ever ran. In this grade of severity ME is only invisible if people purposefully look away.” Evelien van den Brink calling for biomedical #MECFS research in European Parliament in 2019

"For years and years I've been passed from doctor to doctor with me saying I'm so fatigued I've got all this pain... and noone could give me any answers." Miranda Hart talking about her diagnosis of ME caused by Lyme Disease on the Graham Norton show. #MECFS

TW: Jon Stewart recently joked about hantavirus coverage and said: “this virus can cause Chronic Fatigue Syndrome, mostly amongst the experts who have to repeatedly answer the same questions.”

12-yr-old Aveline loved trapeze &amp; sports until #LongCovid changed everything. “Within a day my entire life was flipped around… it’s been a constant battle against my own body.” “It’s really isolating. All my friends go to school together and I would give anything to be there.”

BBC Morning Live covered the new £4.75m UK government funded #MEcfs DNA study yesterday, which will sequence 6,000 samples as part of the wider DecodeME project. Unfortunately Dr Oscar Duke said Chronic Fatigue Syndrome is “probably the best way to describe” the illness.

Brief clip: Whoopi Goldberg raises concerns about #LongCovid on The View. She says one of her employees’ mothers has the condition and can no longer go out to do her job, so now works from home. She also raises concerns about the CDC.

BBC Morning Live addresses complaints after Dr Oscar Duke said that Chronic Fatigue Syndrome was “probably the best way to describe” the illness. Feedback from viewers outlines how it trivialises the illness, is just one symptom, and it does not reflect the reality of #MECFS.

Sleep hygiene can be just as “damaging as graded exercise” for patients with #MECFS Dr Nigel Speight describes a girl with severe sleep reversal. She walked into hospital and was carried out a month later needing to be tube fed.

“This is not a life, it is miserable. So how do I feel? Not even human anymore.” A 36-year-old woman with severe #MECFS confined to bed, on oxygen and a feeding tube, unable to tolerate light, sound or vibrations. Gwyn Clip from Swiss TV

“I don’t think I can think of another condition that would be treated this way.” Dr Anna Brooks, Liggins Institute. A powerful opening to Zoe Madden-Smith’s award-winning RE:News documentary on #MECFS Also featuring Rhi

🧵 Suzanne O’Sullivan on the Amol Rajan podcast says #LongCOVID is psychosomatic for a large proportion of patients. There are several problems with this claim.

Powerful testimony on #MECFS by Emma Shorter in the Scottish Parliament from 2018 “It turns fit and active people into ghosts… I know teachers who can’t teach, children who can’t play, and parents who can no longer hold their children.”

Emma Shorter was told people who don’t recover from behavioral treatment for #MECFS have made the illness their personality. She was told not to meet other patients and to trust the therapist over her own body. She went from walking 4 mins a day to needing a wheelchair.

Dr William Weir on how the influence of Simon Wessely and his colleagues created an overriding tendency among doctors to insist that #MECFS is a psychological disorder. Clip from Hope 4 ME & Fibro NI Collaboration for Change 2026

“They’ve had their lives completely demolished by this illness.” Millions are living with #LongCovid while society has moved on. Former Team GB rower Oonagh Cousins developed #MECFS following Covid and had to retire.

Wes Streeting wants GPs to stop writing so many sick notes and send people to the gym. Worth remembering Brynmor John MP had #MECFS and died on Westminster Bridge in 1988 after exercising in the House of Commons gym. He had been advised to exercise his way back to fitness.

Highlights from today's BBC Breakfast Interview with Binita Kane and Sarah Boothby (sarah) about Severe #MECFS and doctors who have had no training not understanding/listening when they see severly ill patients with #MECFS

Covid has led to an increase in #MECFS. In Germany, numbers have gone from ~250,000 to over 600,000 since the start of the pandemic. It’s been around for decades, yet many patients still aren’t believed and are given harmful advice by doctors, as one patient reports.

12-yr-old Aveline loved trapeze & sports until #LongCovid changed everything. “Within a day my entire life was flipped around… it’s been a constant battle against my own body.” “It’s really isolating. All my friends go to school together and I would give anything to be there.”