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Adam

@abrokenbattery

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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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.

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Adam

Clip 2 from Austrian TV report about Samuel ME/CFS was largely ignored in Austria until Covid. The hallmark symptom is that exertion can make the illness worse. Many doctors are completely unaware, even though patients have been saying this for decades. #MECFS #LongCovid

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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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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: Dr @binitakane.bsky.social explains how ME is an energy-limiting illness. The hallmark symptom, Post-Exertional Malaise (PEM), means even normal activities can trigger a worsening of symptoms. Some of her patients have to choose between a shower or preparing a meal that day.

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In response to a question from @ZackPolanski.bsky.social on #LongCovid @DrAmirKhanGP.bsky.social says “I feel really helpless when I see them.” People who were healthy just a few years ago, a lot of them have lost their independence & ability to earn and there’s nothing in place to look after them.

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The CDC made a public awareness ad about #MECFS in 2007. I’m not aware of a similar public health campaign since, despite increasing numbers linked to long Covid and the lack of awareness that exercise can make people worse.

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Imagine you couldn’t watch television because the sound and colours were too exhausting or needed help just to eat, wash or go to the toilet. This can be a reality for people with a severe form of #LongCovid and #MECFS. Clip from German TV.

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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.”

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12-yr-old Aveline loved trapeze and sports. Long Covid 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.”

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