Alex☮︎

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Tw death Bridget has passed from #MECFS. Her own mother has hung up the phone after she called her and said she was afraid she might die. I am heartbroken and angry. This whole system tears patients down, and even relatives don't care.

..a for-profit enterprise. The idea that recovery is only possible or available for those with deep pockets really irks me. And the idea that you can think your way out of a physiological condition is just BS. Keeping a positive mindset is important, but it isn’t a cure. END.

2025 & the doctor I saw at an NHS hospital yesterday had never heard of ME. This is where we are at #pwME. She did take the time to enquire if I believed in God & if I prayed,apparently this would help my 'anxiety' 🤬

Anyone who’s spent time in the ME community knows this disease isn’t just profoundly disabling - it can kill. And the trend is clear: mentions of ME/CFS on death certificates are rising globally 📈 This mini-series takes a look at data from 🇬🇧🇺🇸🇦🇺 🧵 (1/4)

Clip Sarah Boothby on todays BBC Breakfast segment on the UK government's new #MECFS Delivery Plan “I was accused of fabricating Maeve’s symptoms right up to the point in which she died. Two days before she died, we were subject to safeguarding investigations.”

How many more will have to die before we can get help to live? #mecfs #sos #PwME #severeME #help

CW: death Every day it seems I learn of another pwME who’s died. Advocates in their 60s, 40s, 20s. And those are just the folks on my radar, pals who’ve also been howling into the void for ages. When’s the #GreatestMEdicalScandal inflection point? @jonstewart @iamjohnoliver

Today, I tried to honor the memory of Bridget O'Shea by emailing every single legislative aide and representative I have connections with in my state. I shared with them her story and suffering, in hopes that people learn from it and things finally change. We need to do something…

I've told my husband many times... I just want to make it ten more years without becoming fully bedbound. I want to be in our child's life. That's it. That's all I want. I don't expect more. I don't expect a cure. Just hold off the worst of this disease until she's grown. Please.

Heartbroken to hear about @Bridget_OShea. I spoke to her on Spaces many times and she was a truly lovely woman. (This was her flyer we handed out on LC Awareness Day) #LongCovid and #MECFS kill!!!

If you think that I (severely chronically ill) can work from my bed for a customer service because occasionally I can tweet, you must know that my responses would be the same as here because that's all I can do. Customer: I didn't receive the book I ordered Me: 💔🫂

You cannot "incentivise" work for people who cannot work. You cannot punish people into work if they can't work.

ME/CFS is a ridiculously relentless disease that gives you ZERO breaks. This disease doesn't care about you or your life. The only thing ME/CFS wants you to do is die. I don't want to die though. I want to be CURED, to be able to live again.

Sometimes I feel like I'm in outer space watching earth from far off, floating in a space suit alone. But on better days, I get to come home and be a part of the world and it feels so good to be home. But then I get spit out into the darkness again, trapped and alone and…

📣 Hey #MECFS community — I could really use your help! A journalist reached out and wants to write about ME/CFS. Do you know any clear, beginner-friendly explainers (articles, videos, infographics) to help her get the basics? Please drop links below! 🙏💙

Another one forced to end their life bcos govts & medicine have dismissed/ignored/gaslit ppl with #mecfs for decades. A shameful situation - and you have the responsibility to reverse it with adequate biomedical research & medical education @Mark_Butler_MP @RACGP @RACGPPresident

TW Death . . . Sincere thanks to SJ's Father for speaking passionately to the Asst Coroner about the severe effect M.E. had had on his daughter's life #MEAwarenessHour #PreventionOfFutureDeaths #MEKills 2 x Reg 28 #MyalgicEncephalomyelitis in 10 months judiciary.uk/prevention-of-…

I feel so much guilt about how much my parents have to care for me at their age. They will soon need care themselves, but they care for me around the clock and their whole lives revolve around me. #SevereChronicIllness