Show threadkit lecter 🦇👹1d ago
was extra tired this morning, as I was distracted out of going to bed at a reasonable time, but basking in the sun while Floki was in the garden helped charge some batteries, even if not the spoons drawer.

#CFSME #MECFS #ChronicFatigue #ChronicPain #Spoonie #SpoonieLife
Show threadkit lecter 🦇👹Mar 20
night not very restful, still. but didn't wake up with a flare up, so it's a win.
pain levels, however, are higher than I'd like, thanks to yesterday's shenanigans. today will be a strictly minimum activity day.
ah well. we can't win them all.

#CFSME #MECFS #ChronicFatigue #ChronicPain
Brain Stew (Idris)Feb 20

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

Brain Stew (Idris)Feb 11
Barely any sleep for me, cannot switch off.
#Insomnia #ChronicPain #Fibromyalgia #CFSME #CFS #Anxiety #Painsomnia
Show threadTom KindlonJan 26

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

BenNevisJan 16

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

Show threadTom KindlonJan 16

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

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Cara SutraJan 14

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

Cara SutraJan 10

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

crisJan 6

+++ 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