Barely any sleep for me, cannot switch off.
#Insomnia #ChronicPain #Fibromyalgia #CFSME #CFS #Anxiety #Painsomnia

4/

“When the people in your life don’t understand PEM [post-exertional malaise], they’re not just failing to understand a symptom. They’re failing to understand the central mechanism that governs your entire existence. They’re missing why you can’t just meet them for a meal, why you can’t work full-time, why you can’t be the person you used to be”
@mecfs @longcovid #longcovid #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME

From: "Assessment of Post-Exertional Malaise (PEM) in Patients with ME and CFS: A Patient-Driven Survey" (2019) by a Leonard A. Jason team pmc.ncbi.nlm.nih.gov/articles/PMC...

#MyalgicE #PwME #MEeps #CFSME #CFIDS #PwLC
#PostCovidSyndrome #postcovid
https://pmc.ncbi.nlm.nih.gov/articles/PMC6468435/pdf/diagnostics-09-00026.pdf
pmc.ncbi.nlm.nih.gov

2/
From: "Assessment of Post-Exertional Malaise (PEM) in Patients with ME and CFS: A Patient-Driven Survey" (2019) by a Leonard A. Jason team https://pmc.ncbi.nlm.nih.gov/articles/PMC6468435/pdf/diagnostics-09-00026.pdf

#MyalgicE #PwME #MEeps #CFSME #CFIDS #SEID #PwLC
#PostCovidSyndrome #postcovid
@mecfs

Tired, sore, dizzy & quiet after the past couple of afternoons sorting out post-Christmas mess in the house, and getting my office cleared and ready for a new year of work (when I'm actually able to work in it as opposed to bed or the sofa 🙄)

#CFSME #ChronicIllness #Spoonie

2+ weeks of this cold so far, which seems to have evolved into a throat infection. Had to cancel #therapy today.
Feels like it's worse/lasting longer than before I developed M.E.
Day 68836644 of rest. No-one tells you how boring enforced rest is.
Fed up 🙄😔

#ChronicIllness #cfsme #WinterBlues

+++ Off-Topic: ME/CFS +++

Im Krankenhaus habe ich die Dokumentarfilmerin und Regisseurin Sibylle Dahrendorf kennengelernt, die seit Jahren mit ME/CFS lebt. Ihre Ausdauer und innere Stärke haben mich tief beeindruckt.

Die Dokumentation „Chronisch krank, chronisch ignoriert“ (ARTE, 2025) thematisiert eindringlich die Multisystemerkrankung ME/CFS, ihre Komorbiditäten und die strukturellen Versorgungslücken.

Bitte um Beteiligung, damit die wichtige Doku verfügbar bleibt:
https://www.openpetition.de/petition/online/verlaengerung-der-online-verfuegbarkeit-arte-doku-chronisch-krank-chronisch-ignoriert

#MECFS #LongCovid #CFSME #ChronicFatigueSyndrome #MEAwareness #CFSAwareness #Spoonie #ChronicIllness #OpenPetition #Petition #ARTE #Gesundheitssystem #ChronischKrankChronischIgnoriert

Jak odróżnić Zespół Przewlekłego Zmęczenia ME/CFS od depresji?

@alex_lad_bug wstawiło na https://szmer.info/post/11612983 wpis:

> Encefalopatia mialgiczna/zespół przewleklego zmęczenia (angielski skrót ME/CFS) to choroba która może być wywołana infekcją wirusową, w tym przez covid-19. W wyniku pandemii przybyło wiele osób cierpiących na tę chorobę, ale niestety lekarze i lekarki bardzo mało o niej wiedzą. Często w przypadku nadmiernego zmęczenia po infekcji zalecają stopniowy powrót do aktywności fizycznej. Jednak przy ME/CFS może to wywołać więcej szkody niż pożytku, dlatego bardzo ważne jest właściwe postawienie diagnozy. Polecam cały kanał Chroniczynka na YouTube.

https://www.youtube.com/watch?v=sc68QUazFDA

Dodam, że Zespół Przewlekłego Zmęczenia wynika także ze Stwardnienia Rozsianego!

#covid #cfsme #zmeczenie #stwardnienierozsiane

2/

Of note: “exertional dyspnea” with a prevalence of approx. 80% in ME/CFS: Shortness of breath during exercise (exertional dyspnea) produces a sensation of not being able to "get enough air" and a feeling of being "out of breath

#MyalgicE #MEeps #CFSME #LongCovid #NeuroME
@mecfs @longcovid

📢 NEW POST 🎉
📅 2025 Reflections 🕯️ A Change Of Pace 🍂

2025 feels harder to sum up than previous ones. Usually I’d be full of enthusiasm about my achievements, excited about the new year ahead and signing off with dramatic flair and energetic flourish. This year, things are very different.

Find out what changed for me this year, in my 2025 Reflections feature 👉

https://carasutra.com/2025/12/2025-reflections/

#2025Reflections #LivingWithChronicIllness #TraumaRecovery #LifeUnscripted #chronicillness #cfsme

Absolutely failing at pacing at the moment. Over my pacepoints daily and today I had to go to a Proper Shop so energy expenditure was sky-high. I hate this

#CFSME #ME #ChronicIllness #Visible #pacing #PacePoints #PEM

You know you’re chronically ill when the drs is always selected whenever you open your contacts 😂

Absolute nightmare getting through this morning, I managed a to get a telephone appointment, I’ll go to walk in/A&E if anything gets worse.

#Fibromyalgia #Fibro #Type2Diabetic #CFSME #CFS #ME #Depression #Anxiety #Agoraphobia #AuDHD #ADHD #Autistic #Allergies #MCAS #HistamineIntolerance

#Fibromyalgia #Fibro #CFSME #Diabetic #Type2

Huge epiphany also filed under duh🤦‍♀️:

Technician today was asking what ME stood for and I said myalgic encephalomyelitis. And it suddenly clicked the term literally means muscle pain, and brain and nervous system inflammation.

And I have been SO fekkin gaslit about all this weird neurological stuff, and now I can just shrug and say:

"Well that would be the encephalitis part of ME."

#spoonieMicDrop #spoonieClapback #chronicIllness #cfsME #myalgicEncephalomyelitis #brainFog #pots

2/
From: "Assessment of Post-Exertional Malaise (PEM) in Patients with ME and CFS: A Patient-Driven Survey" (2019) by a Leonard A. Jason team https://pmc.ncbi.nlm.nih.gov/articles/PMC6468435/pdf/diagnostics-09-00026.pdf

#MyalgicE #PwME #MEeps #CFSME #CFIDS #SEID #PwLC
#PostCovidSyndrome #postcovid @longcovid @mecfs

He knows how debilitating extra illnesses and stress can be for me. If I’d asked them not to go, they wouldn’t have gone, but then I would have got a load of shit off him.

Also feeling guilty for youngest feeling rubbish, our illness would probably be better if I could afford to put the heating on.

#Fibromyalgia #CFS #CFSME #ChronicPain #FibroFlare #ChronicIllness #AuDHD #Autistic #ADHD

2/

Of note: “exertional dyspnea” with a prevalence of approx. 80% in ME/CFS: Shortness of breath during exercise (exertional dyspnea) produces a sensation of not being able to "get enough air" and a feeling of being "out of breath.

#MyalgicE #MEeps #CFSME #LongCovid #NeuroME @longcovid @mecfs

I don’t know what is wrong with me, apart from all the things that are wrong with me, but I just can’t today. I’m so exhausted.

#ChronicFatigue #CFSME #Fibromyalgia #IBS #Type2Diabetic #Anxiety #Depression #AuDHD #Autistic #ADHD #Exhausted

This is going to seem naïve of me in our fascist world, but my old friends that I'm recently revisiting could maybe donate to Chronic Fatigue research or vote for politicians that fund science rather than being literally angry at me for being unable to socialize 🙄
#CFS #cfsme #mecfs