One of the hardest parts of #LongCovid is the lack of prognosis. Will I ever walk again? Shower regularly? Prepare my own meals? And even worse: that prognosis is entirely reliant on scientific infrastructure which is actively collapsing.

It’s my 4 year anniversary of Long COVID. The worst anniversary to have.

instagram.com/kinder_mecfs?i… BMFTR Karin Prien BMFSFJM

That’s certainly not what I expected my room to look like at 27 yrs old. (Mind you the commode is being refused to me for YEARS and was gifted by a friend). #pwme #severeme #mecfs #longcovid

There is no way that in 2025, 6 YEARS LATER, #LongCovid Researchers are STILL trialing LDN, SGB, and GLP-1 agonists. They should be charged with attempted murder. People are dying, bedbound, in and out of hospitals, can't form sentences, or do simple math. ARE THEY BLIND ?

6 years bedbound with very severe ME/CFS. No solids, no light, no sound. Recovered, then relapsed to bed bound for 18 months. Again. Hope stretched thin but never broken. Still here. Still fighting. Still believing. The tide has turned once again. #Millionsmissing

I made it to 46 today 🥳 Due to #LongCovid and POTS, I rarely go out, but I did get to spend a little time at the park over the summer. This photo is from one of my favorite moments 🙏🦋

Das war monatelang mein einzig möglicher Blick „nach draußen“. Zum Sonnenuntergang konnte ich das Licht manchmal ertragen. Meistens war ich dankbar für diese Möglichkeit. Manchmal hat mir dieser kleine Ausschnitt von der Welt aber auch Tränen abgerungen. Gefangen #mecfs

“Only after 5 years #LongCovid has surpassed asthma as the most common chronic illness in children. I am terrified for the children who do not, or soon will not, know a world with out debilitating pain and exhaustion… I am furious on their behalf.” — Violet Affleck

I want everyone to know … Violet Affleck is everything we hope she is. She is genuine, fierce, kind, and brilliant. A true warrior for clean air and youth. What a privilege it was to get to know her and inhale some of her passion. Thank you, Violet. 🫶🏼

You ignore my words, my pleas, my existence, as if I don’t matter. But I do matter. Your silence doesn’t erase me. Your cruelty doesn’t define me. I see it clearly now: you’ve shown me who you are, & I will not keep begging to be seen. I deserve better than erasure. #MEAwareness

CN SUIZID Der nächste assistierte Suizid in den Niederlanden … das Sterben mit und an #MECFS hört nicht auf. Furchtbar. Vaarwel! 😔

Thanking Violet Affleck for her powerful advocacy and hearing her speak was the highlight of my UN trip. "I am furious on their behalf... it is a neglect of the highest order to look children in the eyes and say, 'We knew how to protect you, and we didn't do it.'"⁠ Leadership

really don’t think i can do another year of this.

I can’t do this anymore. This is pure torture. I’m feeling like knives in my ears. My bones hurt so much. My brain is frying. Everything keeps getting worse. Family doesn’t care and they make me even worse with sounds, light and lack of care. This is inhumane. #severeme

Liebe Ärzte, hier meine Gedanken zu all dem was ich in den letzten 4,5 Jahren online und offline teilweise miterlebt habe. #mecfs

🕯️#RIP Diewertje †26.9.2025🕯️ Im blühenden Alter von 18 erkrankte Diewertje an #MECFS. Da auch in den Niederlanden keine Medikamente für #MECFS zugelassen sind, blieb ihr nur Sterbehilfe als einziger Ausweg aus der #SevereME-Hölle. Sie wurde nur 32 Jahre alt.🥀 Du fehlst... 💔

Almost 4 years of severe/very severe long covid. 4 years of doing nothing and “resting”, waiting for pacing to work for me while I deteriorate further and further. I am sick of resting, pacing and this life. I cannot rest anymore, what is the point? I keep this broken body alive

People who are aware of what's happening wear masks to protect their health and future.