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"Covid has just ruined my life and the lives of so many other children" Samir, 16, has seen little improvement 5 years after developing #LongCovid. He is still disabled, housebound, and wheelchair-bound. The only medical help has been private because there was nothing on the NHS.

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“Very ill person lives here. Please do not knock.” Rosalind Amor has had #ME since the age of 8. Aged 25, she could not tolerate much light or noise, could not get out of bed, was partly fed by tube and could only speak in a whisper. (Clip from 2017.) #MECFS

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"This is not rare. This is one of life's worst diseases." Professor Chris Ponting speaking about harm from graded exercise therapy and hospital care, and how patients have been let down for decades because #MECFS was wrongly thought to be psychological. (Clip from 2024)

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Councillor Bill Armer, whose late wife had #MECFS, said patients were given a label, but “nothing at all to follow up”. After hearing evidence at a Kirklees Council meeting, he said “I don’t think we’ve made much progress in the last 15–16 years.” He was “disappointed” and “concerned”.

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“He has difficulty with chewing and swallowing… it’s a struggle to make sure that we’re getting the right nutrition, the right hydration into him… basically to be keeping him alive.” @karenlhargrave.bsky.social on caring for her husband James, who developed very severe ME following COVID. #MECFS

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“To live this life is bad enough, but to try and face the scepticism, the disbelief and even the ridicule… is very, very hard to deal with on top of having an illness.” Joan McParland from Hope 4 ME & Fibro Northern Ireland talking about living with #ME in 2012. #MECFS

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Arguments for a biological cause are “mocked” and “overwhelmed”, science is “ignored”, and clinicians with success treating ME are “hounded out of business”. The Countess of Mar speaking about a “school of psychiatry” in the House of Lords, 2010. #MECFS

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“On my bad days I can’t walk properly. I can just about get out of bed. Some days I can just about lift my arm up.” 16 year old Olivia Cole talks about living with ME on Good Morning Britain in 2015. #MECFS

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My 27-minute #MECFS Medical Scandal Explainer video has now passed 300,000 views on YouTube. YouTube’s AI summary has analysed over 3,100 comments.

“I went down to 36 kg because I stopped being able to tolerate a whole range of foods.” Wendy Matthews has lived with #MECFS for 28 years and has been bedbound for the last 7. She talks about her symptoms, how the illness has impacted her, and how #MECFS is not rare.

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"They perpetuated a real misunderstanding around the world" about what #MECFS is. @davetuller1.bsky.social speaking on the South African investigative programme Carte Blanche about the impact of the discredited PACE trial in 2017.

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"This is serious neglect, and in some situations, abuse... As a former child protection social worker, I've seen some harrowing things and the way some people with severe ME are treated is up there.” Sonya Chowdhury, CEO of @actionforme.bsky.social #MECFS

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“ME is a really horrific illness… Many people tell us that ME steals their lives quite literally.” Sonya Chowdhury, CEO of @actionforme.bsky.social, explains Myalgic Encephalomyelitis (ME) and its symptoms. Clip from the Biology Matters podcast by @precisionlife.bsky.social. #MECFS

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“For people with severe and very severe ME, the amount they can do without triggering post-exertional malaise is very small, and this group of people are just too ill to work.” Action for ME’s Clare Ogden giving evidence to the UK Parliament #MECFS

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“We surveyed 5,000 people with ME. The majority were not completing any paid work at all, and those who were, only 1 in 10 were able to work full-time.” @actionforme.bsky.social’s Clare Ogden, giving evidence to UK Parliament #MECFS

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“They’re cross and they’re upset… many are only finding out through social media.” Dr Charles Shepherd, Medical Adviser to the @meassociation.org.uk, discussing the closure of the specialist #MECFS service at George Eliot Hospital, Nuneaton.

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I hate the term Chronic Fatigue Syndrome because “fatigue doesn’t even come close to describing what it is” and it’s “a minor symptom” compared to the others. Natalie Williams explains why CFS is misleading. #MECFS

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Clip from Stephen Bartlett's recent interview with mitochondrial researcher Dr Martin Picard. Bartlett says the top question on Martin’s videos was about #MECFS and #LongCOVID, but he's not sure what #MECFS is. Interesting, given the earseeds controversy.

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“It was horrendous, it was almost like being in a semi-coma. All my very basic bodily functions were struggling and my capacity to do anything like read or watch TV was zero.” Dr Nina Muirhead, describing how ME affected her in 2020 #MECFS

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“5 years after the introduction of NICE guideline NG206 [for #MECFS], little has changed. Service provision according to NG206 remains patchy and poor, with many patients having traumatic experiences” Helen Morgan MP, UK Parliament

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