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Adam

@abrokenbattery

“They’ve grown up with me always being ill and I feel that I’ve let them down because of that.” Andrea has lived with severe #MECFS for 33 years and is confined to bed nearly 24 hours a day. From BBC Lifeline: Action for ME

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“Having earned my living as an inventor and a thinker, having limits on my thinking is pretty awful.” Mark, a retired technologist, developed #MECFS after catching chickenpox in the mid-80s and gradually became more disabled. From BBC Lifeline: Action for ME

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“Having ME is not a choice.” A 37-year-old woman with severe #MECFS says the disability assessment process in Switzerland is “simply dangerous and unsuitable for people like us”. Clip from Swiss TV on severe #MECFS.

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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.

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Clip from the Death Clock Podcast - Dr Leonard Jason explains why healthcare professionals often interpret post-acute infection syndromes as “psychological” — and how patients are traumatised not only by the illness itself, but by people’s reactions to it as well.

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Clip #MECFS 1993: Many believed it was psychological or simply depression, as many still do today. A patient also describes her frustration at appearing well but “paying for it for weeks” afterwards. An early description of post-exertional malaise.

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Short German TV clip. Kalea, 17, has lived with #MECFS since 2019. Post-exertional malaise means she must carefully ration her energy, even small activities can trigger a drastic deterioration in symptoms, leaving her unable to see anyone, in a dark, quiet room.

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Patients with #MECFS in Living Hell (1993) describe their interactions with doctors. “Drug addict” “Alcoholic” “School phobia” “210 doctors told me I was crazy” Patients still report similar experiences today.

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