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Adam

@abrokenbattery

Covid has led to an increase in #MECFS. In Germany, numbers have gone from ~250,000 to over 600,000 since the start of the pandemic. It’s been around for decades, yet many patients still aren’t believed and are given harmful advice by doctors, as one patient reports.

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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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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 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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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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As George Monbiot says in this clip @davetuller1.bsky.social’s work was “absolutely crucial” in helping him understand the problems with #MEcfs research when writing his seminal article. I’ve just donated to David’s crowdfunding campaign to help keep his work going.

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“This is not a life, it is miserable. So how do I feel? Not even human anymore.” A 36-year-old woman with severe #MECFS confined to bed, on oxygen and a feeding tube, unable to tolerate light, sound or vibrations. Clip from Swiss TV

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“To fight for ourselves is dangerous.” @maggieboxey.bsky.social has #MECFS following a suspected Covid infection. In her TEDx talk, she explains that after speaking to Congress, she spent several days in a crash and that if she’s not careful, it could permanently lower her baseline.

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People with #LongCovid, #MECFS and similar conditions don’t get the recognition and funding they deserve — @DrAmirKhanGP.bsky.social Unless decision makers have been personally affected, it’s almost as if they think ‘it won’t happen to me’ — @ZackPolanski.bsky.social

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NIH Director Jay Bhattacharya says patients with ME/CFS, long COVID, vaccine injury and chronic Lyme are often gaslit and told their symptoms are psychological, making them feel crazy. He’s told NIH staff he wants to invest in finding real answers for these conditions.

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Clip from a WDR German TV report: Pascal Hilgruber developed ME/CFS following a Covid infection or vaccination. He now spends 80–90% of his day in bed and says being able to go to the toilet on his own feels like an achievement.

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