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Adam

@abrokenbattery

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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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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“The injustice of it, I couldn’t believe it.” Former Team GB rower @oonaghcousins.bsky.social talking about the #MECFS “scandal” where patients were told they were deconditioned and needed Graded Exercise and CBT. It is the “opposite of what they needed” and that legacy still runs “super deep”.

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Professor Chris Ponting on how findings from the largest genetic study in #MECFS show “there is an organic disease called ME”. “We’ve had letters from GPs saying we have changed their minds” Clip from Hope 4 ME & Fibro NI Collaboration

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“They’re in a darkened room, they can’t tolerate light or sound… some are even tube fed. They’re so unwell, you almost can’t fathom it” Former Team GB rower @oonagh_cousins on people with very severe #MECFS and #LongCovid and the importance to advocate for those who can’t.

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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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“They’ve grown up with me always being ill and I feel that I’ve let them down because of that.” Andrea has lived with severe #MECFS for 33 years and is confined to bed nearly 24 hours a day. 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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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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Powerful clip @johnthejack.bsky.social on the BPS model for #MECFS It meant he was “an unreliable witness” to his own body, he could get better if he just changed his thinking and his behaviour. People viewed him differently, they thought they knew what he needed better than him.

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