Communiqué: Fatigue isn't the same as post-exertional malaise (PEM)
"PEM is real. It is serious. And it must not be made worse by misunderstanding."
Signed by researchers, clinicians and advocates.
https://t.co/8TSDI6Leva
#MEcfs#LongCovid
I hope people can wake up and see what this is really about: controlling access to information. The internet democratized access to news and information, and people in power do not want that!
The worst part about Long COVID & ME is that it takes away your ability to ‘fight’ or ‘push through’
If I had cancer I’d probably be doing marathons for charity, but with Long COVID or ME, if I push through and type too long a message, I end up with paralysed muscles for a week
Genauso ging es mir auch, als ich in das Thema reingestolpert bin.
Die leichteren Fälle werden nicht als ME/CFS erkannt, die schweren Fälle sieht man in Spital und Praxis nicht mehr.
Und generell wird das eh alles als psychosomatisch gesehen...
I genuinely think one of the highest forms of alienation is watching your people’s suffering become an intellectual exercise for people who will never bear any consequences from being wrong.
Ob Wissen oder Unwissen - ich habe jedenfalls schon zu viele Betroffene gesehen, die trotz ärztlicher Warnung, dass dies zu PEM und Zustandsverschlechterung führen wird, zu Gutachten erscheinen mussten.
Und dann PEM und Zustandsverschlechterung hatten.
Absolut kontraproduktiv.
We really need to be clocking alternative explanations for long covid as propaganda and it's subtler than most people think. Obviously, we're getting articles that blatantly ignore science saying LC is made up, but what about messaging about stress affecting your health that...
During Ean’s time in hospital, he was subjected to mistreatment, including being dropped into a swimming pool when he was paralysed, to see whether he would save himself.
Here is a clip of Ean talking about his experience.
“People with ME have sadly had to endure far too much disbelief and delay.”
Clip of Dr Hans Kluge, WHO Regional Director for Europe, opening the @Invest_In_ME 2026 International ME Conference #IIMEC18.
Popular narratives about disability mirror right wing narratives about poverty so often, idk how more people don't see it. The victim blaming and personal responsibility narratives, the false positivity, the self-help grifters... it's all the same 🫠.
I can’t tell you how traumatizing it has been to see ppl making jokes, rolling their eyes&straight denial of a condition that took away any chance of me going to Graduate School for music education.
25 years of classical training gone.
And ppl still pretend you can will it away.
The sad reality that I’ve noticed is that the biggest social crime is to make people feel “uncomfortable” and one way you do that is when things aren’t fine and you don’t pretend that they are
Hey @WIRED, how about interviewing neuroscientists who are actually studying the brains of people with #LongCovid? I'm available, and so are many others in the field.
"When the brain gets stuck in a feedback loop of fight or flight" What does that even mean? #Pseudoscience
"trauma dump" is going up on the shelf where we put words the internet shouldn't be allowed to have anymore. Your FRIEND is telling you about their LIFE and you should LISTEN even if it's a LITTLE BIT UNCOMFORTABLE
Seeing this becoming more and more of a problem, so just to be clear, being too disabled to work is never a privilege and certainly doesn't mean you "don't have to work". The people who don't have to work are rich people. They're landlords & capitalists, not disabled people.
Many people have this unrealistic expectation that once you become disabled, you’ll automatically be supported by government, friends, family, and neighbors. Sadly, once you become disabled, it’s common most will abandon you. If you have a lot of social support, you’re lucky.
3/
Die nicht übermittelte/ erkannte somatische Erkrankung wird im Antrag des Psychotherapeuten zur Depression, Angst, Persönlichkeitsstörung.
Aus POTS wird Angst,
aus Kraftlosigkeit Vermeidung,
aus einer schweren körperlichen, multisystemischen Erkrankung eine Frage des Willens.
I cannot cope anymore with what the CT contrast has done to my brain. Every second of every day is torture. I wouldn’t wish this on anyone but I miss having people to talk to about how I feel. This appears to be substantially rarer than Long COVID. I feel completely alone now.