Does anyone else get zaps? Like little electric shocks in their body. Had some scary ones across my chest this morning, they didn’t hurt, but very uncomfortable.
Apparently could be linked to POTS or mould, which would fit with the MCAS and histamine intolerance.
I’m seeing my gp on Tuesday, but will go to walk in/emergency if gets worse etc.
#POTS #MCAS #HistamineIntolerance #Fibromyalgia #CFSME #CFS #ME #Anxiety #Depression #Agoraphobia #AuDHD #ADHD #Autistic
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 🙄)
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.
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
Brain Stew (Idris)
Tom Kindlon
BenNevis
Cara Sutra
cris
Barto Nemo Kopeć | ♿ MS+ | 🏳️⚧️