Alex🏳️‍🌈🇸🇪🇪🇪🇵🇱

🥀(v)severe ME & cci
artist and writer
Due to illness - slow or no replies ❤️‍🩹

[Alex🏳️‍🌈🇸🇪🇪🇪🇵🇱 @Aelvidra]

@MECFS2011 Skickat dm till dig 💕

[Alex🏳️‍🌈🇸🇪🇪🇪🇵🇱 @Aelvidra]

Eight years ago I began studying. Life with my two sons was wonderful. I wonder what we’d be now if I hadn’t gotten sick.

very #severeME #pwME #mecfs #MEawarenesshour

[Alex🏳️‍🌈🇸🇪🇪🇪🇵🇱 @Aelvidra]

@aimee_hirayama Dm! :)

[Alex🏳️‍🌈🇸🇪🇪🇪🇵🇱 @Aelvidra]

@aimee_hirayama @TraceyABurgess Lots of love your way ❤️‍🩹❤️‍🩹🫂

[Emily Johnson (is on Mastadon and Bsky) @emily_rj]

In 3 months, I’ll get another major neurosurgery: Craniocervical Fusion, Extradural
Decompression of the LLCT/MTH, Bilateral C1 Tubercle Resection

This procedure will be out-of-state, costly and have a long recovery

Please donate and boost! Ty

https://t.co/lts1LL5ocX

[Alex🏳️‍🌈🇸🇪🇪🇪🇵🇱 @Aelvidra]

@MECFS2011 Tysm im sorry you are suffering so much too🫂

[Laura Miers @LauraMiers]

“Women with autoimmune conditions are up to 74% more likely than men to be told their symptoms are psychological or psychosomatic, and face much longer waits for a diagnosis and treatment.” https://t.co/7vdvD92wCK

[Greta Thunberg's Frog Hat 🐸 @worriedsunshine]

TW: assisted suicide
Hi twitter, I’m not sure if anyone will see this but I’m putting it out there just incase anyone in australia knows of a doctor with experience with ME/CFS /long covid who offers telehealth and bulk billing. I have a very close friend who’s making

[Adam @ABrokenBattery]

People with #MECFS are 6.85 times more likely to die by suicide.

A 2026 study examined memorials for people with #MECFS and noted contributing factors such as hopelessness, pain, social isolation, loss of independence, and dismissal or poor treatment by healthcare providers.

[Alex🏳️‍🌈🇸🇪🇪🇪🇵🇱 @Aelvidra]

@SaveLizNevra 🍀💚🍀💚

[Save Liz Nevra @SaveLizNevra]

Respectfully wtf

https://t.co/c6iyY7Uu2r
https://t.co/RkmzAnl7I6

#pwME #mecfs #severeME #verysevereME

[Carnivora  @CarnivoraCC]

I’ll make it short & painless…

…months of work, loss of sleep, & the constant meowing of my cat, but it’s finally done!

Presenting you my covid centred counselling website 🙌

https://t.co/oUWxa3NNh0
(English)
https://t.co/UTXrtC2txP
(German)

1/3

[Chris Alvino @ChrisAlvino]

Meet my friend Cindy. They've been a HUGE ally of mine for years. They're chronically ill, haven't worked in over a year, and now struggle to afford FOOD while facing vet bills for their rabbit Fluffy and dog Rollo.

They need £1,118.73. Please read. 🧵

[Antoine 🇫🇷 V.Severe MECFS @AntoineMECFS]

CW: Death

I met Lea (not her real name), who was also suffering from very severe ME/CFS, on Reddit in early August. She also had POTS, MCAS, EDS, and gastroparesis. We started talking after realizing how similar our situations were, especially when it came to nutrition, struggling to eat enough, and losing so much weight. She was hospitalized because of these difficulties and had spent five of the previous seven months in the hospital.

I could tell from the very beginning that Lea was an incredibly kind person. She was smart and caring, always trying to help others even when she was struggling so much herself. She always found a way to make jokes despite her suffering, which was something I truly admired about her. We exchanged messages here and there, as much as our conditions and the time zone difference allowed.

On August 30, she told me she would reply in a few days because she was feeling particularly unwell. But the days went by, and then the entire month of September passed without any news from her. I feared the worst. And sadly, I was right... A few days ago, Lea's father reached out to let me know that she had passed away in the hospital in early September.

I'm still deeply saddened by her death, but I'm also angry. Because she was in the hospital, a place where she should have received the care she needed and been safe. Instead, she was denied help because she "didn't meet the criteria." Until she finally did. But by then, it was too late. Perhaps all of this could have been avoided if she had received the help she needed sooner.

No one should ever have to go through something like this, especially not in their early twenties, after battling such a devastating illness for almost a decade. I can't even begin to imagine how much she must have suffered in her final days.

Rest in peace, my dear friend. You deserved so much better. I will not forget you.🌹💙

#MECFS #MEKills

[Alex🏳️‍🌈🇸🇪🇪🇪🇵🇱 @Aelvidra]

@kirstler31 Yes ♡

[Alex🏳️‍🌈🇸🇪🇪🇪🇵🇱 @Aelvidra]

@AbyssPearl 🫂

[LosinghopeinCanada @losinghopein]

Hi friends,
I need some help paying a bill, some grocery items and laundry help. If anyone can contribute a few dollars towards my goal of $250, it would be really appreciated.
Thank you. 💐

[email protected]

[Alex🏳️‍🌈🇸🇪🇪🇪🇵🇱 @Aelvidra]

@Dfrizz007 👋🏻

[Alex🏳️‍🌈🇸🇪🇪🇪🇵🇱 @Aelvidra]

@SquashedSiren Bp causes spillage and requires too much strength: lifting/ shifting the hips/ turn over.
Bottle works better, but still difficult.

[Alex🏳️‍🌈🇸🇪🇪🇪🇵🇱 @Aelvidra]

#severeME #bedbound, hard to write. Using a female urinal bottle. Any better alternatives for lying down? Links/pics appreciated.
#pwME #mecfs

[Alex🏳️‍🌈🇸🇪🇪🇪🇵🇱 @Aelvidra]

They are ok-ish but you need to be hand steady and strong enough to lift pelvic