Adam
@abrokenbattery
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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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.
Post exertional malaise (PEM) is the hallmark symptom of #MECFS It’s not fatigue following activity. It is a dramatic deterioration and worsening of symptoms. Short video explainer - triggers, symptoms, and management. Repost for the last day of #MEAwarenessMonth
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)
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.
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.
#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
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.
Emma has #LongCovid and slowly built up to working 30 hours a week over 3 years but had to take sick leave. She then got COVID again and is back to square one. Reinfection risks making Long Covid worse.
“It made me much worse… Most people I know with ME have exactly the same experience with it.” Annette Barclay, a patient with #MEcfs describing her deterioration following Graded Exercise Therapy.
“It’s been devastating… it’s capsized my life as a mother.” Jane had to give up her 18yr career to care for her child with #LongCovid MP Jo Platt, who has #LongCovid and #MECFS warns we’ve stopped counting cases so don’t even know the extent of the problem. Clip from ITV News.
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