rot girl @unseen_rotting

If I wanted to give my body to Long COVID or ME research, what organizations could I specify which would have the capacity to take it? Preparing a living will

TW: SI I think sometimes about how, if and when i decide to exit this unbearable life, so many people will express angst about how i "gave up" and didn't even "try everything". Some already do. Maybe I'm staying alive mostly out of spite at this point

Syd @fcknsyd

24 hours ago

It's hard not to think about all the people that have abandoned me during my illness and but I bet they would probably show up at my funeral when it's too late and say how much they cared and how they wish they could have done more

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really feel some type of way seeing previously healthy people describe symptoms of neurodivergence newly brought on by Long COVID as horrific and debilitating but which I’ve been experiencing my whole life that were dismissed by everyone around me in various demeaning ways

Tired of being chronically ill so I would rather just not “be.”

My quality of life is so low. I honestly just want to die, at this point. I don’t want to be in severe pain anymore.

I’ve been completely bedbound for a little over a year and I’ve lost almost everything about who I used to me—I’m nothing now but suffering, anger, and emotional repression

The OAT imho is a total waste of money. I did one at the start of my illness in 2017 & another one recently now I am a lot worse. And yet, allegedly I have A LOT less wrong now than I did when I was mild. Also actioning results helped 0% Remember this because I delete my tweets.

Naomi Harvey PhD #WearAMask @Naomi_D_Harvey

4 days ago

If you have ME or Long Covid, have you ever done an organic acids test (OAT)?

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When someone actually starts to listen to what I am saying for a while, I can always see the shock in their eyes. So many people pretend to understand and care about us, but sometimes it turns out they had no idea what we were trying to communicate all along.

People won’t do the bare fucking minimum if it inconveniences their lives to the slightest even if it could GREATLY improve someone else’s and possibly even save it

Lying flat, doing absolutely nothing. With a HR of 215. However, Alice has been awake for OVER 140hrs, could this be making it worse? 🤪😭#VerySevereME #PoTS #vasculardysfunction #pwME #NEISvoid #insomniac #tachycardia #hEDS #severeME

I just wrote a letter demanding #LongCovid research funding be included in the FY25 budget. It takes less than a minute! Write one here 👇 actionnetwork.org/letters/long-c…

I am at a point that I can't even imagine telling a doctor or family that I have "chronic fatigue syndrome". Not doing that. That's how you get the severity of your illness dismissed and get prescribed "omega 3 fish oils" and vitamin B12.

reddit.com/r/cfs/s/I8qPd7… #MECFS this just got posted on Reddit?

#mitodicure launched its website: mitodicure.com We are the only #MECFS start-up company worldwide developing a novel targeted drug. Support innovative drug development aimed at healing ME/CFS, which is also the most severe form of #LongCovid. #BMBF #MECFSAwarenessDay

all of the masking we’re seeing in anti-genocide student protests is a downstream result of all of us here not shutting up about it for 4 years. even for those of us who are bedbound, we still did this. good job everyone

The New York War Crimes @nywarcrimes

7 days ago

UCLA right now, as LAPD prepares to descend on the encampment in full force. Solidarity with our steadfast comrades!

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PEM is NOT just malaise/exhaustion/symptoms after exertion. PEM IS A DETERIORATION IN THE VERY DISEASE PROCESS THAT DRIVES #MECFS !!! This is why it is so dangerous and can make you PERMANENTLY more disabled!!! Cancer doesn’t spread/PwMS don’t loose more myelin from exertion!

@unseen_rotting I'm sorry you're suffering with this too, you're absolutely not alone in it though🫂

So the appointment I waited a year for wasn't particularly helpful, just trying a new sleeping pill🤦🏼‍♀️ here's to declining further into very severe ME 🥂

does the NIH not see how embarrassing they are, how useless and pathetic and obviously incompetent they are? that they're puppets for an transparent eugenicist agenda?

My girlfriend is the best. Organising a screening of Unrest at the university I had to drop out of due to severe ME.