#SevereME
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pumpkinstars.bsky.social
it sucks doing better enough to care and everything still sucks a lot

it sucks being sick so long that so many things fell apart and i have to dig myself out of it all again

it sucks not having enough help

it sucks how fucking abusive and/or harmful home care people are. they wreck my SevereME
January 12, 2026 at 6:05 AM
tomkindlon.bsky.social
CN: Death

This heartfelt tribute was written by MassME member Nick Joliat in honor of his friend who had severe ME/CFS.
massmecfs.org/members/memb...

Image is screenshot from @massmecfs.bsky.social 's January 2026 newsletter:
massme.monkeypod.io/mailcoach/we...

#SevereME #MEcfs #CFS #PwME

1/
Spotlight: MassME Remembers Walker Storz Photo of Walker Storz with a guitar This heartfelt tribute was written by MassME member Nick Joliat in honor of his friend who had severe ME/CFS. Last spring my friend Walker Storz died of ME/CFS in New Mexico. He was 30 years old. I met Walker on an @MEAction internet forum about five years ago and recognized him as an artistic kindred spirit. I never met him “IRL” but we stayed in touch and a couple years ago when we were both a little less sick we worked on some music together. Walker was very smart, very talented, had a mischievous and slightly deranged sense of humor, and above all was insatiably curious about the world, a quality which shone even more brightly when he was sicker than most people even realize you can be while still being alive. I wish I could’ve seen where he would’ve gone. Click here to read Walker's full tribute.
January 10, 2026 at 9:07 PM
arizona10238417.bsky.social
Es geht übrigens, sollte sich ein Arzt zu uns verirren, nicht um "wird etwas gefunden oder kann man etwas verbessern", sondern vorrangig um, schädigt der Arztbesuch mangels Kenntnis über #MECFS #SevereME #VerySevereME?

Das ist moderne Medizin
#PingPong
#LongCovidKids
January 10, 2026 at 3:12 PM
padpadpadpad.bsky.social
First trip of 2026. Soph's vertigo has gotten worse. This has made everything worse. I really cannot convey how hard that visit was. Or how she gets through every day.

07/01/2026 The worst visit ever. #severeME #MECFS #pwME

padpadpadpad.netlify.app/posts/caring....
January 9, 2026 at 4:04 PM
bettinagrande.bsky.social
Danke dem @fatigatioev.bsky.social
für diesen starken
#SevereME Kalender 2026!
#MECFS #PEM #VerySevereME
Ein Foto eines Kalenders für 2026 liegt auf einem Holzschreibtisch. Das Titelbild zeigt einen Leuchtturm in einer Dünenlandschaft unter blauem Himmel mit Wolken. Darüber steht der Schriftzug ‚#severeME‘ und das Logo von Fatigatio e. V. Unten ist die Jahreszahl ‚2026‘ zu sehen.
January 8, 2026 at 6:45 AM
alex-wears-crocs.bsky.social
#ME is not #FND. I have both conditions, and my #health deteriorated because it was assumed that my severely disabling #chronicfatigue was just another FND #symptom.
#spoonie #chronicillness #severeME #disabled #disability #medicalgaslighting #medicalneglect
January 7, 2026 at 9:49 PM
tamaradnomad.bsky.social
Meanwhile I’m #severeME warm in my bedroom and with my mom’s help, Daryna in #Ukraine also severe with #MECFS has endured a night with over 40 bombs & will have weeks of water & electricity shortage. Please help us help her. We need a #probono #lawyer in #Germany. We need her safe #pwME #War
January 7, 2026 at 9:10 PM
alex-wears-crocs.bsky.social
It is both horrible to be unable to do anything and freeing to just do nothing. #severeME
January 7, 2026 at 10:15 AM
tamaradnomad.bsky.social
A group of #severeME patients are trying to save Daryna, a young woman from #Ukraine with severe #MECFS, from the bombs & negligence. We want to take her as #refugee to #Germany. We find no help from anyone, including associations & NGO. Would you volunteer to help? Contact me. #pwME
January 6, 2026 at 7:59 PM
tomkindlon.bsky.social
Carer for her daughter with very severe ME, Dr Greer @drjogreer.bsky.social has developed her articles into an advocacy project described in this series of blog articles.

www.theredtreeandme.com/p/the-red-tr...

Screenshot from latest Science for ME weekly update

#LongCovid #MEcfs #SevereME
Blog: The Red Tree and M.E. by Dr Jo Greer "As an educational psychologist working with children in care in the UK, I often used therapeutic stories in my practice. I especially loved The Red Tree by Shaun Tan". " Amidst the disconcertingly dark imagery in The Red Tree, the recurring motif of the red leaf offers peace and assurance as it speaks to hope." Carer for her daughter with very severe ME, Dr Greer has developed her articles into an advocacy project described in this series of blog articles.
January 6, 2026 at 2:00 AM
alex-wears-crocs.bsky.social
Having very severe ME is like having insomnia, but experiencing those hours you spend trying and failing to fall asleep all day every day. No stimulation, no getting out of bed, until you get so frustrated that you have to take a break. And then you try again. Over and over.
#severeME
January 5, 2026 at 3:16 AM
nlizaki.bsky.social
2/2 Call it what you want...

If you can support Nevra with funds to stay housed and access lifesaving medical care, please consider donating:
PayPal: www.paypal.com/paypalme/Sav...
GoFundMe: www.gofundme.com/f/save-nevra

#severeME #MillionsMissing #MEcfs #pwME #chronicillness
Pay Adrian Bamforth using PayPal.Me
Go to paypal.me/SaveLizNevra and type in the amount. Since it’s PayPal, it's easy and secure. Don’t have a PayPal account? No worries.
www.paypal.com
January 3, 2026 at 7:50 AM
alex-wears-crocs.bsky.social
Standing up with very severe ME is like going rock climbing without a rope. Sure, maybe some people can do it, but it's incredibly dangerous and risky, no matter how much you plan, and really not worth it except in exceptional circumstances.
#severeME #chronicillness #spoonie
January 2, 2026 at 10:26 PM
nlizaki.bsky.social
LOWEST BASELINE YEAR
LOST MY HAIR

If you can help Nevra stay housed, please donate:
PayPal: www.paypal.com/paypalme/Sav...
GoFundMe: www.gofundme.com/f/save-nevra

#severeME #MillionsMissing #MEcfs #pwME
January 2, 2026 at 7:15 PM
nlizaki.bsky.social
🚨 Please boost and engage with Nevra's posts, even (and especially) if you can't donate. This is an emergency. She is at risk of homelessness 🚨

If you can, please donate:
PayPal: www.paypal.com/paypalme/Sav...
GoFundMe: www.gofundme.com/f/save-nevra

#severeME #MillionsMissing #MEcfs #pwME
Graphic reads "Please boost stories and posts. No funds coming in for housing. Nevra cannot be homeless. Please #SaveLizNevra." There is a clock emoji at the bottom.
January 1, 2026 at 11:02 PM
anilvanderzee.bsky.social
At some point it will happen right?

Staying chronically optimistic...

Happy less crappy new year to you all!!

#pwme #myalgicE #millionsmissing #severeME #photophobia #hyperacusis #POTS #banPEM #art2cureME #canyouseeMEnow #balletdancer #zorgbetervoorME #chronicillness #science
December 31, 2025 at 5:52 PM
somethingchronic.bsky.social
@swastrosarah.bsky.social do you think Streeting can be trusted to listen? It massively concerns me he’s appointed Wessely because surely he knows the issues with him from #pwME? Sorry if I’m getting it wrong and you haven’t spoken to him before re: #SevereME – I thought you had so figured I’d ask!
December 29, 2025 at 12:53 PM
nlizaki.bsky.social
3/3
Nevra has no respite from severe symptoms and no help locally.

If you can, please donate:
PayPal: www.paypal.com/paypalme/Sav...
GoFundMe: www.gofundme.com/f/save-nevra

#severeME #ChronicIllness #MillionsMissing #MEcfs #Endo #MCAS #POTS #EDS #Neuroimmune #pwME #DVSurvivor #DVAWARENESS
Pay Adrian Bamforth using PayPal.Me
Go to paypal.me/SaveLizNevra and type in the amount. Since it’s PayPal, it's easy and secure. Don’t have a PayPal account? No worries.
www.paypal.com
December 26, 2025 at 10:23 PM
ethyricalartist.bsky.social
Happy Holidays from someone with severe Myalgic Encephalomyelitis

I’ve only been getting 3 hours of sleep a night since becoming homeless - I hope you can get some good rest today ❤️‍🩹

#pwME #SevereME #disability #Christmas #Homelessness

bsky.app/profile/ethy...
ethyricalartist.bsky.social Donia 🖖 ♾️ ♿️ @ethyricalartist.bsky.social · 19d
Hope you’re having a cozy holiday🎄

A friend brought my fake fireplace from storage bc the motel heater (where we’re staying while homeless) is way too loud for Monkey (always jumpy) & me w/ my neurological conditions.

Can’t go anywhere today, but at least could open the blinds #Cat #MerryChristmas
December 25, 2025 at 8:58 PM
somethingchronic.bsky.social
8
We’re too ill to advocate for ourselves but often push beyond what’s safe (as I am) because if we don’t nothing changes.

@ashleydaltonmp.bsky.social you know all this. *You* have the power to change it and save lives. Why aren’t you?

#GreatestMEdicalScandal #JusticeForME #SevereME #HumanRights …
December 25, 2025 at 1:51 PM
somethingchronic.bsky.social
5
But this isn’t just Christmas, and it isn’t just me; it’s every day for decades for people with #SevereME. Some people are much worse than me.

Please could you spare a minute to think what this would be like for you to endure every day with no end in sight? Or watch your loved ones go through? …
December 25, 2025 at 1:51 PM
somethingchronic.bsky.social
1 of 9

My #SevereME Christmas

* All day mostly alone
* No TV, music or twinkly lights due to extreme sensory sensitivities
* I won’t be able to see anyone except my husband (also my caregiver) as I don’t have enough energy to interact with them. We’ll mostly sign for the things I need …
December 25, 2025 at 1:51 PM
somethingchronic.bsky.social
Sending love to everyone in the #MEcfs, #SevereME and #LongCovid family today

As @whitneydafoe.bsky.social says: Alone, Together

💙💙💙
December 25, 2025 at 7:37 AM
halcionandon.bsky.social
#Urgent Appeal: Help Anna Escape #Abuse – Time is Running Out!

@phonakins.com kindly helped make a Chuffed ♥️

Please help: 🔄SHARE, 💬 COMMENT, 📝QUOTE &💸 GIVE if you can. Share on all social media platforms.

chuffed.org/project/1619...

#SevereME #MutualAid
#Disability #MECFS #ChronicIllness
### Urgent Appeal: Help Anna Escape Abuse – Time is Running Out!
🚨EMERGENCY: Anna's Life Hangs in the Balance – Act NOW to Rescue Her from Abuse and Neglect!
chuffed.org
December 24, 2025 at 1:53 PM
halcionandon.bsky.social
Please repost & give if you can. Help me get away from #abuse & have a chance.

#PoveratiXmas #MutualAid
#ChristmasMutualAid
#SevereME #LongCovid #Disability #ChronicIllness
halcionandon.bsky.social Anna (needs a SAFE HOME) @halcionandon.bsky.social · Dec 12
🎄My Xmas wish: escape abuse & find safety. Help if can.🙏No energy for full wishlist/GFM. Got:

Fundraising: buymeacoffee.com/halconandon Beem: halcionandon

eGift cards (Aus online): eg
amazon.com.au/hz/wishlist/ls/1B9A74NSROTQZ
prezzee.com.au

To: Halcionandon @ gmail .com

#PoveratiXmas
#MutualAid
Check out my list on Amazon
amazon.com.au
December 24, 2025 at 1:27 PM