Nele

I wish there was more written on very severe #POTS #dysautonomia. It's always "take your fluids + beta-blockers and you'll be fine". Once in a while I read that people need a wheelchair. But it can be way worse. It's never mentioned that some people can't sit or are bedbound 🔋⬇️

Only 3 donations in the last 2 weeks for me, I’m nervous, I must return for neurosurgical care this and next year I can’t keep getting care unless more people donate, Medicare/Medicaid/financial aid don’t cover all of the costs, each trip costs $2-3K Please donate, RT, comment

Just an unpopular opinion: If you’re one of the people that films your high support needs disabled loved ones for content on the internet, it’s not okay. They cannot consent to you doing that, and you’re showing them in vulnerable states under the guise of “awareness.”

People with ME/CFS, have you tried GLP-1 agonists like Ozempic? Did it improve your ME/CFS symptoms? (Not talking about weight loss)

Decisions decisions decisions. I'm so overwhelmed every time I need to make a decision. That's partly because my head is 🤯 because of this illness. But also, how can you make decisions that affect the future when you're not even sure how any random day will go. #ChronicIllness

In BE is men nog bezig aan een behoeftenonderzoek, ook belangrijk maar heel erg laattijdig… Aan iedere ME/cvs-patiënt in BE: laat het RIZIV weten waar je in de zorg tegen aanloopt (vragenlijst ca 30 min) survey.kce.be/974677?lang=nl

For anyone wondering if Severe ME can kill people: yes it can and does. Many will be aware of the cases where pwME have died from malnutrition, but the disease can also lead to *early* death from all causes, with the top 3 being suicide, cardiovascular reasons & cancer ⬇️

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!!!

Bridget Denise Jhanne Elmear Jana Sharon David Klara Lena Loes Lauren Céline Kara Jane Andrea Daniela Melanie Lisa Maeve And so many more 💙 #MEKills

RIP Bridget, Denise and Sarah 🕯💙 And these are only the people we know of who've died in the past two weeks 😞 #MEcfs

Omg, I just learned that @Bridget_OShea has passed. I am so angry at this disease for killing my friends. Rest in peace Bridget, I’m sorry for all the suffering you had to endure.

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: 💔🫂

With all the "if you can use social media you can work" it's time to shamelessly retweet myself.

“If you can post on social media you can work” entails that if you work and post on social media you should be able to work two jobs

Has anyone had a bad reaction to famotidine (I had severe weakness) have u tolerated another H2? Debating asking about another but also worried as all the others were recalled due to dangerous ingredients. Don’t particularly want to keep taking a PPI. #LongCovid #MECFS #MCAS TIA

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

People who are mainly bedbound, do you have a single bed or a double/queen/king bed? And which one would you prefer?

Disabled people don’t want to be “inspirational.” We want to be believed. Paid fairly. Given access. Hired without barriers. Housed safely. Treated with respect. Existing shouldn’t have to be a protest.

I've received $25 in donations in the past week towards avoiding eviction. I'm super grateful, but I REALLY need more help to stay housed. Idk when LL is going to serve papers. He said he will come evict soon if I don't pay. Please help 🙏 Links attached--->>>