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Adam

@abrokenbattery

Caroline Kingdon speaking about functional impairment and mortality in #MECFS Biobank research has shown people with ME/CFS to be more functionally impaired than people with MS. And between 2001–2016, ME/CFS was mentioned on 88 death certificates in England and Wales.

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More from Adam

Short German TV clip. Kalea, 17, has lived with #MECFS since 2019. Post-exertional malaise means she must carefully ration her energy, even small activities can trigger a drastic deterioration in symptoms, leaving her unable to see anyone, in a dark, quiet room.

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Clip from the Death Clock Podcast - Dr Leonard Jason explains why healthcare professionals often interpret post-acute infection syndromes as “psychological” — and how patients are traumatised not only by the illness itself, but by people’s reactions to it as well.

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Short German TV clip. #MECFS cases have doubled since 2020, many linked to #LongCovid. Patients describe lives wiped out overnight, years housebound or bedridden, and having to choose between showering or playing with their child.

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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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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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Gabby Rudge-Cox caught Covid in 2021 and has been diagnosed with #LongCovid #MECFS #Fibromyalgia and #POTS. “I'm gradually getting worse and it just scares me that if it continues to decline, life is going to get even smaller.”

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“Having earned my living as an inventor and a thinker, having limits on my thinking is pretty awful.” Mark, a retired technologist, developed #MECFS after catching chickenpox in the mid-80s and gradually became more disabled. From BBC Lifeline: Action for ME

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Dr @binitakane.bsky.social explains how a theory that #MECFS is caused by deconditioning and a fear of exercise permeated medicine and framed the illness as psychological. This led to the patients being neglected, gaslit, and some would say abused. Causing huge trauma for the community.

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“She actually asked me a couple of times, you know, am I going to die? She felt so unwell.” Isla is 10 and developed #MECFS after a COVID infection. She is 95% housebound and just wants to “have fun and do things with her friends”. From BBC Lifeline: Action for ME

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Gabby Rudge-Cox caught Covid in 2021 and has been diagnosed with #LongCOVID #MECFS #Fibromyalgia and #POTS. Her husband had to give up his job as a policeman after a Covid infection as well ”it has ruined our lives”.

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☕️🇺🇦You can support me with a one-time or monthly donation. ✅For Donations: buymeacoffee.com/24hoursukraine

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