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Adam

@abrokenbattery

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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Clip from a WDR German TV report: Pascal Hilgruber developed ME/CFS following a Covid infection or vaccination. He now spends 80–90% of his day in bed and says being able to go to the toilet on his own feels like an achievement.

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Congratulations to @sharonhodgsonmp.bsky.social on her new role Minister for Public Health and Prevention. Sharon has been a strong supporter of people with ME/CFS and has spoken in a number of parliamentary debates. Here are some highlights from a debate in 2019.

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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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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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As George Monbiot says in this clip @davetuller1.bsky.social’s work was “absolutely crucial” in helping him understand the problems with #MEcfs research when writing his seminal article. I’ve just donated to David’s crowdfunding campaign to help keep his work going.

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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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Really good explanation of Post-Exertional Malaise (PEM), the hallmark symptom of ME/CFS, and why pacing activities is so important. Clip from German TV science program.

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