I'm really sick of the people in my life treating my reaction to years of chronic illness and disability like it were a mental illness. It's a perfectly sane reaction to an insane situation #MECFS

I feel like if I had a friend who developed MS or something after being totally healthy I'd have a deep interest and personal investment in it

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One of the wild things about having #MECFS is that I have friends who are well aware of my condition and have seen me degenerate over many years and still have no interest in the disease and don't ever want to hear about it from me

Years ago somebody with mild chronic illness told me, "You know, I'm just not the type of person to lay in bed all day." I was like, hate to break it to you, but nobody is that type of person!

Yeah no i'm pretty comfortable saying ME is one of the worst diseases ever, the fact that it's so common and still untreated just makes it even more insane

I don't get how an illness this shitty exists and nobody cares about it #MECFS

We're dropping like flies and the world couldn't care less #MECFS

the pandemic never ended

I honestly think the name ME/CFS is worth keeping for historical reasons, or just ME, even if it's not technically accurate. No one is going to call it systemic exertion intolerance disease, and more names are just confusing. Nightingale's Disease I do like though. #MECFS

Feeling pretty sad and alone about the state of #MECFS today. I'm sure things are happening treatment and research wise, but so many of us are getting worse in the meanwhile, and most people STILL don't get it.

the fact that people actually think social media is causing people to be sick -- encouraging them to play up their "illness identity" and so forth -- just goes to show how out of touch we've become.

they really think we're all a bunch of hypochondriacs, it's insane #MECFS #LongCovid

most people I know would sooner give you a self-help speech or recommend exercise therapy and that you get out more than simply google ME/CFS

I'm sorry but idgaf about methelyne blue or any fucking bullshit supplements or lifestyle things, that's not an answer, it's just patch work

I don't mean to be a debbie downer but I am gradually coming to terms with the fact that there will be no real answer for #MECFS in my lifetime. I'd say we're a hundred years away from true medical understanding and treatment of this disease

New @davidtuller1 virology interview just droooopped https://t.co/yuTJ1E64Vb

You really couldn't come up with a more scandalous or compelling story than the history of #MECFS It involves disability, politics, bad science, human evil, sexism, money, the whole gamut Why are journalists too cowardly to write about it?

It's crazy that, for decades, you could go tell a doctor you're having chronic energy issues after an infection and they just look at you like you're an alien from outer space. #MECFS

A huge part of the denial around #MECFS and #LongCovid is just that people don't want to imagine they could be this sick without dying, it's literally too much for the ego to handle

honestly man, it takes courage to go out there with a mask -- you know you're going to be misjudged every damn time and just bite the bullet for the most practical of reasons: to spare your health.