Latest posts tagged with #severeMe on Bluesky
Yeah, I’ve had ME since 1997, but wasn’t diagnosed until it became #SevereME in 2015… I didn’t realize just how much my life had eroded until I went back through pics to make this blog post in 2016.
Becoming homeless last year has further broken me 💔
#PEM #pwME #chronicillness #disability #artist
Manchester Evening News: 'I was in a dark room 24/7 for 18 months': The mystery illness that left a 25-year-old man bedbound
Nick Benton, from Stockport, discusses his ME/CFS & the serious crash that left him bedbound for 18 months.
https://tinyurl.com/7rzdwnkj
#pwME #MECFS #SevereME
Not been on the social media much recently as between the 16 hour sleeps, I've been socialising with @izzy.brennand.net on my bed instead. So glad I'm well enough to have her in here most days now, even if we still want more :) #SevereME #ChronicIllness #MyalgicEncephalomyelitis
picture of black cat sleeping in Donia's arms. Text overlay: FAQS about the plight of a homeless & disabled black cat & her profoundly disabled & homeless human... @MonkeyMyBlackCat (Be a hero & share / help!) Gfme: link in bio • Vnmo: Donia-Lilly • Ppal: donia@donialilly.com
Deep purple and pink background with white text: FAQ #1 Why are you homeless? • My landlord decided to sell the property after 5+ years renting from them. • I couldn't find ADA housing in time & ended up in an emergency housing program. • It's a tiny motel room & lasts 6 months, max: ending March 31st, no extensions. (Yes, my landlords knew my severe level of disability & that I had nowhere to go, but gave me no extra time to find somewhere to live...) GFM: link in bio • Vnmo: Donia-Lilly • PPal: donia@donialilly.com
Deep purple and pink background with white text: FAQ #2 Don't you have friends or family to stay with? • My friends all live in tiny studios or places with stairs - which I can no longer manage due to my disabilities. • I don't have family to help. GFM: link in bio • Vnmo: Donia-Lilly • PPal: donia@donialilly.com
Deep purple and pink background with white text: FAQ #3 Why not just move somewhere cheaper? • 1am mostly bedbound & my health is too fragile to relocate any great distance. • Staying local isn't just a preference - it's medically necessary. GFM: link in bio • Vnmo: Donia-Lilly • PPal: donia@donialilly.com
FAQs re: severely disabled homeless autistic Latina & cat. Ask more in replies…
We're 2 weeks from being on the street when emergency motel voucher runs out.
Worsening #SevereME & #rareillness…
Pls share, donate, help:
linktr.ee/EthyricalArt...
#SignalBoost #cat #disability #lgbtq #pwd #MAboost 🇵🇷
Thank you for this thread🩷
I'm profoundly disabled, homeless, & my disabled cat & I are going to end up on the street in 2 weeks!
Fundraising for #cat meds, storage unit (we’re living in a tiny motel room) etc
linktr.ee/EthyricalArtist
#Emergency #chronicillness #KeepFolksAlive #SevereME #HELP 💸💕
Miss life preCovid.
Even though I had #severeME I caught a cold maybe once a year & returned to baseline in several weeks.
This is 4th #Covid infection in 2 years.
It’s given me organ damage & is destroying my immune system.
Abusers don’t mask.
They infect me every time.
Happy Birthday to me 🥺
Trial By Error: Norway Disability Case Exposes Flaws in Draft Guideline for “Long-Term Fatigue–including ME/CFS” 2 Comments / By David Tuller / 13 March 2026 By David Tuller, DrPH A recent disability case in Norway provides a good example of why the draft of a new guideline for “long-term fatigue—including ME/CFS” is so problematic.
Very sad to read of this 23-year-old with severe ME, ill since age 4.
Authorities are trying to claim that improvement/recovery is possible with the right attitude! ☹️
An example of the problem biopsychosocial models for ME/CFS cause.
virology.ws/2026/03/13/t...
#MEcfs #PwME #CFS #SevereME
Thank you for this thread ❤️🔥
I’m profoundly disabled, homeless, & my cat & I are going to end up on the street in a couple of weeks!
linktr.ee/EthyricalArt...
#Emergency #SOS #chronicillness #disability #SevereME #pwME
Sehr zu empfehlen, weil #severeME ein oft negiertes Thema ist und die beiden Vortragenden @kathrynhoffmann.bsky.social und @verhac.bsky.social großartig sind!
#MyalgicEncephalomyelitis punishes me for being #human. I was curious and stubborn and intelligent and caring, but I'm not allowed to be that person anymore. I have to choose not to think too hard, or this #illness will choose that for me.
#severeME #millionsmissing #spoonie
#MyalgicEncephalomyelitis might not kill you (in most cases), but it doesn't make you stronger.
It just takes everything away from you, little by little, until there is nothing left but you and the void.
It's scary in here. 🕳️
#severeME #MECFS #chronicillness #spoonie
Still unresolved but they want to do a CT scan of my liver & upper endoscopy… I’ve had a splitting headache for the past 18 hours from the pain meds they gave me.
My impending loss of temporary shelter is not helping my stress 💔
linktr.ee/EthyricalArt...
#chronicpain #disabled #pwME #SevereME
Background image of a hospital room from the viewpoint of the patient on a hospital bed with the words: I was in the Emergency Room from 1am to 5:30am in IMMENSE upper abdominal pain... they don't know what's going on but need to do more imaging on my stomach, which may be shutting down, and my liver. Monkey & l are 18 DAYS from being on the street when our motel voucher expires… PLEASE HELP. Venmo: Donia-Lilly #homeless #SevereME
In ER 1am to 5 in IMMENSE pain... they need more imaging on my stomach which may be shutting down, & liver
I’m 18 DAYS from the street when motel voucher expires
#homeless #SevereME #MA
Pls HELP 🆘
V: venmo.com/u/Donia-Lilly
Art: donialilly.com
eBay: ebay.com/usr/island_art
PP: paypal.me/donialilly
Bit of a word salad from me this trip. I left a day early because she needed more time to recover from my visit before the Cheltenham Gold Cup Week. I was there for three days and saw Soph for three hours. She must be so lonely.
#pwME #severeME #MECFS
padpadpadpad.netlify.app/posts/caring....
Ankündigungsgrafik des Psychotherapie Netzwerks ME/CFS. Blauer Hintergrund mit einem stilisierten Puzzle-Teil in der Mitte, das durch weiße Linien wie ein Netzwerk verbunden ist. Text: „ME/CFS in der Forschung – was ist wirklich zielführend?“ Darunter der Hinweis auf das 13. Treffen des Netzwerks am 12.03.2026.
Psychotherapie Netzwerk
ME/CFS
13. Treffen am Donnerstag, 12.03.26 · 19–20:30
ME/CFS in der Forschung – was ist wirklich zielführend?
Versorgungsstudien · psychosomatische Forschung
Stakeholder & Beiräte
PEM · Patientensicherheit
#MECFS #PEM #NoGET #SevereME #VerySevereME
#PEMistnichtverhandelbar
Screenshot from quella_the_dizzy_octopus on Instagram. Screenshot reads "Hi all! Nevra is currently in hospital. She is very ill right now so it is excellent she is getting medical attention. However, her GFM donations have stalled and she needs funds to pay for her hospital stay. A clean private room that protects her from infection and MCAS triggers is about 260 GBP/day. Nevra also does not have funds to pay for rent. It is essential we fundraise for this so she can recover in a safe place after being discharged. Please screenshot and share with her GFM links on as many platforms as possible. This is an emergency situation."
🚨 Nevra's situation is urgent. She can't afford both rent and hospital bills. 🚨
Please donate if you can, and share this post to spread the word.
PayPal: paypal.me/SaveLizNevra
GoFundMe: gofundme.com/f/save-nevra
#pwME #SevereME #MyalgicEncephalomyelitis #MillionsMissing #mecfs
Pancarte avec photo d’Antoine. Il est allongé dans un lit, on voit le haut de son corps. Il porte un casque anti-bruit et un masque sur les yeux pour se protéger de la lumière. Il est écrit 28 ans, malade depuis décembre 2024. Sa citation, “ll est grand temps que les médecins soient formés à l'EM pour une prise en charge adaptée des patients sévèrement atteints”.
🚨 “It is high time that doctors were trained in ME for the appropriate care of severely ill patients."
#severeME #pwme #mecfs
3/3
Sur la Canebière à Marseille, un homme, Baptiste, se tient debout devant un grand lit sympbolique. Il porte un bonnet, un masque et un tee-shirt du collectif voxEM. Il tient une pancarte sur laquelle il y a une photo d’Antoine. Il est allongé dans un lit, on voit le haut de son corps. Il porte un casque anti-bruit et un masque sur les yeux pour se protéger de la lumière. Il est écrit 28 ans, malade depuis décembre 2024. Sa citation, “ll est grand temps que les médecins soient formés à l'EM pour une prise en charge adaptée des patients sévèrement atteints”.
💯 La prise en charge des malades d'EM les + sévères est une urgence absolue !
Revendication d'Antoine, portée par Baptiste, lors de notre action à Marseille le 7/02 dernier.
Merci à Antoine et à ses amis de l'association ToiNous (voir 👇)
#pwme #EMSFC #severeME
1/2
#LifeShrinks #chronicillness #mecfs #me/cfs #MyalgicEncephalomyelitis #SevereME ##BeautifulDiagram
#SinkingIntoTheDepths
Trying to work out how I can have a life when I need to lie down 95% of the time.
It’s just so incredibly isolating. Family don’t care. Friends gave up. Can’t work or study. Hell, I can’t even shower.
Not sure what I do now. Do I just lie here until I die? It’s a little depressing. #SevereME
My circadian rhythm is a party animal #circadianrhythm #N24 #severeME
Screenshot of a post from Nevra's Instagram. It's a photo of Nevra in a hospital bed. She's wearing a mask and a hospital gown and she has an IV in her arm.
Please don't stop boosting my recent posts
#SevereME #pwME #food #pain #water
Life is too exhausting to have regrets. #severeME
4/
Read Lee’s main fundraising page here including information on his brother’s struggles with ME (he eventually became severe and passed away)
https://www.awalkforme.com/
#severeme #pwME #severeme #CFS #MEcfs
www.awalkforme.com
My thoughts as an adult should be “I or they will deal with it in the morning“ not “What fresh hell is waiting for me tomorrow so I can add to trauma & my #dysautonomia collapse even more. On top of #SevereME & PEM”
20yearsof this & much worse.
Can’t do this no more.
Graphic is a screenshot of an Instagram post that reads "Can't eat. Can't drink. Very severe ME. Keeps leading to infection. If we don't raise funs. I'm done for. It's goodbye from this Pakistani pwME. I have no words. All we know is that I have a compression. We need fun.ds ASAP in the next one day."
🚨 Nevra's situation is urgent. She can't afford both rent and hospital bills. 🚨
Please donate if you can, and share this post to spread the word.
PayPal: paypal.me/SaveLizNevra
GoFundMe: gofundme.com/f/save-nevra
#pwME #SevereME #MyalgicEncephalomyelitis #MillionsMissing #mecfs
I donated today.
This is a #pwME with #SevereME and other co-morbidities who had to escape their home situation.
On this #DisabilityDayOfMourning, I want to prevent any more loss. Join me. gofund.me/0b70a3928
#disability #MyalgicEncephalomyelitis
