Yann (ME/LC)
Disabled by very Severe Post-COVID ME/CFS. Not always able to use phone. Bedridden. Unable to Speak.
I care.
Ⓐ💚, (FR/DE/EN, but posts in english)
Clinging onto the ledge above the abyss.
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- Reposted by Yann (ME/LC)Calling pwME in the UK- please fill out this survey if you haven't yet! I'll be using data from this survey to better understand at what ages people develop ME and from what types of triggers. Thanks to everyone who has taken part so far!
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- Apparently Wessely threatening to sue people writing on ME/CFS. I imagine this is the tip of the iceberg. I hope people who this happens to come out. Because this is exactly the kind of behind the scenes stuff we know happens but are difficult to gather evidence on.
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- I’ve noticed Google’s Gemini LLM often refuses to answer if you mention having a health condition or disability. Ask the same question without that context and it tends to answer. An example of how LLMs and “LLM moderation” can create inequities, as they come to be increasingly relied on.
- ME Protest planned in Marseille (France)
- “I am still bedbound now, still unable to talk, or listen to music, or watch TV. But I will do more when able to, this is a natural instinct or process and needs no intrusive input from others. It happens whenever people get over a cold or flu.” - Alem Louder for the psychologisers at the back!
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- Those mini nutritional drinks are kind of surreal. Like what do you mean I can drink 320 calories in 2 gulps?
- It’s nice to be reminded of the narrowing down and new clues that have been found this year. mecfsscience.org/2025-looking...
- Western (especially European) medicine is obsessed with “over-medicalisation”. But, under-medicalisation kills. A lot. We’ve normalised having to repeat serious symptoms to a doctor multiple times before anyone acts. So who does this “over-medicalisation” narrative benefit?
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- Reposted by Yann (ME/LC)Theoretically, everyone deserves the right to do what they want to their own bodies. But in practice, these laws lead to further devaluation of disabled lives. They invariably lead to people choosing MAID because they can't afford healthcare, cajoled into this cheaper choice by an uncaring system.
- Noticing that Democrats are passing “right to die” laws before passing “right to housing” or “right to healthcare” laws www.nprillinois.org/government-p...
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- In the lower levels of very severe ME/CFS. Your capacity to communicate is very limited. You have to engage in a sort of “pauciloquy”. Trying to communicate in few words. Do a triage of communication. 1/3
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