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Adam

@abrokenbattery

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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More from Adam

6 years since the first UK lockdown. #LongCovid hasn’t gone away. ONS estimates from 2024 suggest ~2 million people in England & Scotland. Every infection carries a ~1 in 50 chance of developing long Covid that could last anything from four weeks to being effectively permanent.

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Adam

BBC Morning Live covered the new £4.75m UK government funded #MEcfs genetics study yesterday, which will sequence 6,000 DNA samples as part of the wider DecodeME project. Unfortunately, Dr Oscar Duke said Chronic Fatigue Syndrome is “probably the best way to describe” the illness.

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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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#MECFS is a “medical” and a “social catastrophe.” — Jörg Heydecke, founder of Germany’s ME/CFS Research Foundation. One patient waited 19 years for a diagnosis. Another said she was told her symptoms were psychological and that she needed to get on with it.

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Adam

Tomos is bedbound with Severe #MECFS. His mother says at his worst he looked as if he was “paralysed”, “a dead weight”, unable to open his eyes, talk or move. Clip from BBC Wales Today.

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Adam

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: 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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Adam

“These people have been not only severely affected, but severely neglected by the National Health Service.” Dr Charles Shepherd speaking on UCB Radio about the lack of NHS care for people with severe ME/CFS during ME Awareness Week.

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George Monbiot describes the treatment of #MECFS as “The Greatest Medical Scandal of the 21st century”. Repost of the introduction to my 27-minute explainer video for #MEAwarenessMonth — now optimised for phones.

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Nikki Proctor on BBC Radio 4’s Feedback says she was surprised Amol Rajan didn’t raise #MECFS with Suzanne O’Sullivan on his podcast, after O’Sullivan said #LongCOVID was largely psychosomatic, given the “backlash and criticism of her position” on #MECFS.

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