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“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
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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 🙄)
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 🙄😔
+++ 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
Encefalopatia mialgiczna/zespół przewleklego zmęczenia to choroba (angielski skrót ME/CFS) 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.
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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
Tom Kindlon
BenNevis
Cara Sutra
cris
Barto Nemo Kopeć | they/them | ♿ MS+, 🏳️⚧️