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Adam

@abrokenbattery

“I don’t think I can think of another condition that would be treated this way.” Dr Anna Brooks, Liggins Institute. A powerful opening to Zoe Madden-Smith’s award-winning RE:News documentary on #MECFS

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Clip 3 BBC Politics North: Luke Akehurst MP says it’s “shocking” that #LongCovid services are being closed when ~2 million people live with the condition and about half consider themselves disabled. Covid is “not yesterday’s problem”, it is still causing events to be cancelled.

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“Having ME is not a choice.” A 37-year-old woman with severe #MECFS says the disability assessment process in Switzerland is “simply dangerous and unsuitable for people like us”. Clip from Swiss TV on severe #MECFS.

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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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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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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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Dr Charles Shepherd (@meassociation.org.uk) explains how in the 80s and 90s psychiatrists claimed #MECFS was due to “deconditioning” and “abnormal illness beliefs”. Graded exercise therapy made many patients worse, with some ending up in wheelchairs. It was only removed from NICE guidance in 2021.

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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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Lotte has lived with #LongCOVID for 6 years. At her worst she spent 22 hrs a day in bed and was unable to hold a conversation. She worries about her future as the Dutch government doesn’t treat it as a priority and not enough is being done to help her take part in society again.

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TW: Jon Stewart recently joked about hantavirus coverage and said: “this virus can cause Chronic Fatigue Syndrome, mostly amongst the experts who have to repeatedly answer the same questions.”

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#MECFS patients and advocates not only had to fight flawed research and harmful treatments, they also had to deal with attempts to discredit them, like a PACE author calling an MP “unbecoming” and accusing MPs of defamation and libellous comments for scrutinising his work.

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