#pwME#ChronicIllness
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darthfoo.bsky.social
Still below baseline. Bad PEM. Work tomorrow 9-5. Long COVID and ME/CFS don’t care about your schedule.

#LongCOVID #MECFS #PwME #ChronicIllness #PEM
January 31, 2026 at 11:19 PM
ozgib.bsky.social
I think many of my followers will have these flags raised.

#ChronicIllness #Disabled #pwME #LongCovid #EDS #Pots #fibromyalgia
3 striped flag signalling the phrase "i am manoeuvring with difficulty" and a diamond shape within a rectangle flag signalling the phrase "I am disabled; communicate with me"
January 30, 2026 at 11:31 AM
newlondonboy.bsky.social
Having quite a bad flare up of #CFS symptoms this week 🥴 Sleeping 11 hours a night but waking up still exhausted. Another duvet day 🛌
#ChronicIllness #pwME #MECFS #NEIS
a man is pulling a suitcase down a hallway with the words when we feel a flare above him .
Alt: a man is pulling a suitcase down a hallway with the words when we feel a flare above him .
media.tenor.com
January 29, 2026 at 3:45 PM
maryeilmicdom.bsky.social
virology.ws/2026/01/27/t...

Insightful, incisive essay on inter alia the essential trap at the core of severe ME. Please do read, you will learn something.

#pwme #MECFS #chronicillness
Trial By Error: An Essay on Living with Severe ME | Virology Blog
By David Tuller, DrPH I’ve been totally out of commission for three weeks while recovering from bruised ribs sustained in a fall. I have devoted most of my ...
virology.ws
January 29, 2026 at 12:13 PM
chessawrites.bsky.social
Me: I feel almost spry today.

Spouse: well good

Me: for some definition of spry

Me: What I mean is, I don't feel like I was run over by a truck.

#spoonie #PwME #MECFS #LongCovid #ChronicIllness
January 28, 2026 at 1:16 AM
ozgib.bsky.social
Twice in 4 days I've left my keys hanging out of the front door. The Amazon man found it very funny just now. I did the laugh out loud but secretly winced & shouted at myself inside.
😶‍🌫️
#brainfog #chronicillness #pwME
January 26, 2026 at 12:39 PM
hla72.bsky.social
The chronic illness rage and burnout is definitely real.

Today I've either been crying with exhaustion or wanting to smack someone really hard.

Now I'm exhausted, crying and hangry. Time for some food.

#chronicillness #pwme #chronicpain #loneliness #nohelp #loneliness #mecfs #fibromyalgia
January 24, 2026 at 5:05 PM
achronicvoice.com
"I moved back in with my parents. “Temporarily.” “To find a job.” “To get my shit together”..I spent the rest of the year pinging and ponging between #doctors who might help #diagnose the strange..#illness":: buff.ly/cRbUrgd

by @Mollyfree.bsky.social
#MECFS #pwME #ChronicIllness #disabled
On my Eight Year Bed-iversary
Time flies when you're having... whatever this is
mollyfree.substack.com
January 23, 2026 at 10:30 AM
lianvanberkel.bsky.social
The hardest thing I’ve ever had to do in my life is to apply pacing
#LiveLikeME #ThatsLifeWithMEForMe
#MyalgicEncephalomyelitis #MEAwarenessHour #SevereME #LivingDeath #MECFS #MECFSAwareness #pwME #MECVS #chronicIllness #PAIS #InvisibleDisability #InvisibleIllness #ImSoTired #spoonie
January 22, 2026 at 5:01 PM
achronicvoice.com
“There’s no getting round it really. With Severe ME the flare up happens every time despite my best efforts to prevent it..rest as much as yr body needs u to..Don’t feel #guilty – rest is a vital part of managing #ChronicIllness. – @chronic_hopeful": buff.ly/h9KUzUS

#pwME #ChronicFatigue #disabled
40 People with Chronic Illness Share Their Best Pain Management Tips (What to Do if an Unforeseen Pain Flare Hits)
A roundup of best chronic pain management tips from 40 people who live with chronic illness, for when a pain flare strikes without warning.
buff.ly
January 21, 2026 at 7:30 AM
ethyricalartist.bsky.social
This was my favorite part 😆
(I was surprised to find myself grinning while reading such a shameful compilation, but this section brought me joy)

(thank you @abrokenbattery.bsky.social for compiling all of this!)

#MyalgicEncephalomyelitis #pwME #SevereME #MedSky #ChronicIllness #Disability
“Medium June 2018 Following a Twitter exchange about the PACE trial, Simon Wessely tags his old school friend Mike Godwin, suggesting that a critic's tweet is an example of his famous law [35]. After examining the evidence, Godwin concludes that PACE is "so profoundly flawed that it cannot be trusted". He also signs David Tuller's open letter requesting an independent reanalysis of the trial [36].”
January 20, 2026 at 9:36 AM
ethyricalartist.bsky.social
It’s my birthday - I’m hoping you’ll reply with cat pics to cheer me up as my cat & I are still homeless (& we’re both chronically ill / disabled) 💙

linktr.ee/EthyricalArt...

#Cat #ChronicIllness #Disabled #CatsofBluesky #pnw #Snohomish #pwME
#MyalgicEncephalomyelitis
Black cat with green eyes looking at the camera with two birthday cards leaning up against her body
January 15, 2026 at 12:29 PM
ptswithpower.com
If we stop fighting for doctors to have awareness of each of our specific conditions, join forces and fight for doctors to start educating themselves and listening to patients, I feel like we might actually get somewhere.
⚡ #ChronicIllness #EDS #pwME
January 13, 2026 at 3:54 PM
tomkindlon.bsky.social
Video essay: "On hope and chronic illness"

www.youtube.com/watch?v=jMiV...

Screenshot from latest Science for ME weekly update

#chronicillness #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
Video essay On hope and chronic illness. Jonathan, who has had ME/CFS since age 14, describes vividly his experiences with a series of damaging alternative and medical treatments, and the importance of getting a diagnosis after 6 years of misdiagnosis. He discusses the importance of hope, but, says: "I had no idea that the world of illness was so full of predators. They’d dispute that label, but they harm desperate people by offering false hope".
January 6, 2026 at 1:48 AM
hochsen.bsky.social
My Fitbit have a new way of informing me of how broken my health is.

#MEcfs #PwME #ChronicIllness
Fitbit watch with display falling off
January 5, 2026 at 4:41 PM
hla72.bsky.social
My stupid body and especially my legs really don't like the damn stairs! Jeez... it's like climbing Mount Everest!

#chronicillness #chronicpain #mecfs #fibromyalgia #pwme
January 4, 2026 at 3:57 PM
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
nlizaki.bsky.social
#CharlieXCX #girlsoconfusing #brat #pwME#ChronicIllness
Graphic reads: I asked of a mask With a bounce and a snap, Who had practised all day Doing loops in my lap. "They nod and agree!" Said the mask with a wheeze, "Then remove me politely For comfort and ease." Graphic reads: I asked of my body, All buzzy and slow, Why friends flee at once When I tell them just so. My body replied, With a wobble and bend: "They adore helping vaguely- But not to the end." Graphic reads: So I lay with my sock And my spoon and my crash, And my mask doing somersaults Under the sash. And I waved very gently, Too tired to shout: Graphic reads: "If you wish me quite well- Please don't breathe all about."
January 1, 2026 at 6:21 AM
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
tomkindlon.bsky.social
Blog post about using props (like pillows, bolsters, and wedges) to help promote relaxation, by a sympathetic and knowledgeable occupational therapist who focuses on ME/CFS and long Covid.

onelifelivedwell.substack.com/p/repose-the...

#LongCovid #MEcfs #chronicillness #Spoonie #CFS #PwME
One Life Lived Well Repose: The New Relaxation Welcome to Week 1 of our new series on restful practices that promote sustainable recovery. Explore how using props can guide you closer to experiencing repose. Abby Mar 20, 2025
December 31, 2025 at 4:00 PM
tomkindlon.bsky.social
From @chronicliving123.bsky.social newsletter:
2025 articles round up!

Links:
chroniclivingtherapy.com/news/

chroniclivingtherapy.com/dan-wyke-int...

chroniclivingtherapy.com/katharine-ch...

chroniclivingtherapy.com/couple-talks...

#chronicillness #MEcfs #CFS #PwME @lammasleaves.bsky.social
2025 articles round up! We've published a mix of interviews, news updates, research updates and more... You can see them all on the news section of the site. Here are three of my highlights: Dan Wyke - don't miss this insightful contribution from Dan, a therapist with ME, who is one of the inspirations for this project Katharine Cheston - an academic, recovered from ME, who now researches stigma and attitudes to the illness Michelle and Ian - a married couple speak openly and movingly about life with ME (this one sent the site stats through the roof...) Check out all our articles here
December 27, 2025 at 5:40 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
belasco.bsky.social
I’ve been invited to go do a few things over the 2 days. It’s been nice to be invited, but what’s been really cool is the total acceptance when I say I can’t. They wanted to give me the option if I happened to be up for it & that’s it. No guilt, no ego.

10/10
No notes

#chronicillness
#pwme
#pwlc
December 26, 2025 at 7:51 PM
tomkindlon.bsky.social
Recap of Bateman Horne Center @batemanhornecenter.bsky.social support group meeting: “Support Group: Managing the Holidays with Chronic Illness-Solutions and Strategies”

batemanhornecenter.org/wp-content/u...

#chronicillness #spoonie #mecfs #longcovid #fibromyalgia #pwme
batemanhornecenter.org
December 24, 2025 at 11:04 PM