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Adam

@abrokenbattery

“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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“So what you’re really telling us is that everything we’ve been taught in our training as nurses is wrong for this condition.” Dr Nigel Speight describing a nurse’s reaction after he explained how to care for a patient with severe #MECFS.

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BBC Wales Today. Carer and campaigner Rob Messenger, who has two children with #MECFS in their 30s, says there are no specialists to turn to and describes care for Severe and Very Severe ME in Wales as a ‘desert’.

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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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Karen Quinn spent most of the 1990s bedbound with #MECFS. “We didn’t have Sky, we didn’t have computers, we didn’t have internet… I just laid there.” (Highland Radio, Ireland)

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TW: Assisted Suicide Clip from German TV. Kim has #MECFS and describes how her illness has progressed, leaving her bedbound and sensitive to light and sound. At 25, she talks about her decision to apply for assisted suicide, saying she can no longer live like this.

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“They sometimes aren’t supported by their families. They almost always aren’t supported any longer by their friends.” Caroline Kingdon, on the profound isolation experienced by people with severe #MECFS.

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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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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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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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Emma Shorter was told people who don’t recover from behavioral treatment for #MECFS have made the illness their personality. She was told not to meet other patients and to trust the therapist over her own body. She went from walking 4 mins a day to needing a wheelchair.

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