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Adam

@abrokenbattery

Professor Chris Ponting on how findings from the largest genetic study in #MECFS show “there is an organic disease called ME”. “We’ve had letters from GPs saying we have changed their minds” Clip from Hope 4 ME & Fibro NI Collaboration

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“To fight for ourselves is dangerous.” @maggieboxey.bsky.social has #MECFS following a suspected Covid infection. In her TEDx talk, she explains that after speaking to Congress, she spent several days in a crash and that if she’s not careful, it could permanently lower her baseline.

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Olympian Montell Douglas presenting BBC Lifeline for Action for ME “For years, I’ve had chronic pain due to a medical condition and know how difficult it can be to live with. And those with ME also have to deal with social stigma and a lack of support.” #MECFS

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Clip from yesterday’s BBC South report about the #MECFS Alliance event on the future of #MECFS and #LongCOVID research. Sam, an ME patient, says the government failing to fund further research after the success of DecodeME is “absolutely disgraceful”.

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“Chronic fatigue is not the only symptom. It is one symptom amongst so many others.” Dr Ranj explains what ME/CFS is, why the term Chronic Fatigue Syndrome does not reflect the reality of the illness, and why many patients prefer the term ME.

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Natasha Devon raising concerns about Simon Wessely being involved in the government’s mental health review. Wessely has “already said that he thinks that mental illness is overdiagnosed. So he's not coming from a place of impartiality”. 25 April 2026.

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Highlights from BBC Radio Gloucester. Helen Stout, who has lived with ME since 2020, and Clare Ogden from @actionforme.bsky.social say the UK government’s £4.75m research investment is welcome, but a ‘drop in the ocean’.

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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.

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#MECFS “is a real hidden illness and it can shrink lives” Fliss and Rob Shepley spoke on BBC Radio Merseyside about their upcoming Land’s End to John O’Groats cycle ride to raise funds for the ME Association. They are taking on the challenge for their daughter, who lives with #MECFS

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Clip 2 (WDR German TV): Dr Astrid Weber from the Long Covid Clinic in Koblenz says ME/CFS cases have exploded since Covid. ME/CFS isn’t new — despite being around for decades, many doctors know little about it. She wants to educate them. It’s a physical, not a mental, illness.

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Psychiatry has caused a lot of delays and damage in the field of #MECFS. A lot of work needs to be done to undo harm from theories such as patients excessively resting, being afraid to exercise, or perpetuating their illness. Dr Nina Muirhead, interview in The Times (2020)

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