Joined November 2013
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I've never believed "recovery isn't possible". It hasn't made me better though.
#pwME
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I constantly try to convince myself I'm not sick. Push past what I should. Do things when I'm symptomatic.
(Things being cooking myself a meal, trying to clean my room, or talking "too long" in a message).
Imagining I can get better does not cure multisystem chronic illness.
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The cohort of ME haters in the LC community will blame us for "conflation" or "lumping together" as the reason for events like the Wired piece.
But they never talk about how *every* long tail illness following C19 is classified as LC, whether that be sinus issues, PVFS, heart...
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...conditions or ME.
The scale of C19 and the infinity possible outcomes ensures no end of people who will attribute recovery to any matter of things. And as many grifters willing to capitalise on it.
But sure if only it wasn't for #pwME everything would be different.
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Nevermind the stigma attached to chronic illness in general, the history of disregard of the impact of infections on human health, teamed with the overall pandemic denial and the capitalist interest in not acknowledging these illnesses.
No the problem is #pwME π
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I have nothing mature, articulate or thoughtful to say anymore. I don't want to show them the facts, present research, the decades of stories, or evidence to the contrary. I just want to them all to go fk themselves.
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#pwME are so accustomed to seeing research papers circulated with misinformation about #MyalgicEncephalomyelitis, and its dominant feature, PEM, that it barely gets a rise out of anyone anymore.
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Absolutely this.
And fk them.
x.com/elle_carnitine/status/β¦
Exactly. Theyβre trying to distance themselves from ME by barely mentioning it by name when they talk about phenotypes, while at the same time drawing on the knowledge produced by people with ME and ME researchers about eg PEM. But of course in a botched way
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The paper uses "chronic fatigue syndrome" FFS. In 2026.
It's lazy and disrespectful.
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Apr 25
What's probably the most vital and effective thing to do when you are recovering from infection or injury to give yourself a better chance at not developing a chronic illness/condition?
Rest.
What is one of the hardest things for humans to be able to do in this society?
Rest.
I've said this before, but I need to reiterate, I don't think the powers that be in this capitalistic society can allow awareness and knowledge of a disease like Myalgic Encephalomyelitis. I especially don't think they can let the public know that it's common.
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Apr 22
This morning (I woke at 4:30am and dozed off again around 6am) I dreamt that I was walking... I thought where I needed to go wasn't a very far distance...
...suddenly I couldn't walk anymore so I got down on the ground and tried to crawl... but I couldn't...
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Apr 22
..a car stopped and a person got out (to help me?)... and then I woke up.
The first time I can remember a dream in which I have ME.
#pwME
#MyalgicEncephalomyelitis
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Apr 22
The feeling of complete and utter exhaustion as I was trying to take each step and then slowly withered down to the ground was visceral.
A slow realisation as it was happening "I can't do this".
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Apr 10
Doctors bitching about "over diagnosis" and "self diagnosis" of neglected conditions that primarily affect women is just misogyny. π€·ββοΈ
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Apr 10
...research and sharing information.
They are trapped in the late 19th century, except for now it isn't as easy to institutionalise us.
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Apr 10
If they could get over their hubris and contempt for women, their eyes would also open to the men who suffer with these illnesses too.
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