I've never related to a Leonard Cohen lyric more than "I'm angry and I'm tired all the time." It's #fibromyalgia for me.
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#mecfs
74 posts41 participants9 posts today
Gardening has happened! Not as intense as it used to be, because I'd keep going for hours. I waited for the sun to go around the corner of the house so I got some shade, and I brought out one of our fold chairs to sit on which definitely let me work a little bit longer with less pain.
Yesterday I prepared the coconut soil, so I didn't have to do that today, just add a little bit more water to it.
I repotted 3 plants today, and cleaned up afterwards which is definitely something I'm going to plan into my energy allotment for this stuff!
New ME Research UK-funded study with Australian samples
Neurodevelopment Genes Encoding Olduvai Domains Link Myalgic Encephalomyelitis to Neuropsychiatric Disorders
https://www.mdpi.com/2075-4418/15/12/1542
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
Replied in thread
@donray They’re beautiful!! I currently have a jar of broccoli seeds on my kitchen table in the process of sprouting. I can’t grow vegetables because I live in an apartment in zone 5, but I can grow sprouts in a jar on my kitchen table so I do.
There’s something in broccoli that’s supposed to be very helpful for people with #MECFS.
Rutsche wohl endgültig in very severe ab. Habe gestern nach über drei Wochen zum ersten Mal geduscht. Bin heute komplett gecrasht. Kann kaum sprechen. Der ganze Körper ist bleischwer. Muss im Liegen essen.
Ich hab solche Angst.
#MEcfs #severeME #verysevereME
Minutes of the first All Party Parliamentary Group on ME and Long Covid last month:
https://appgme.co.uk/meetings/minutes-for-appg-meeting-14-may/
"people should not fall into the trap of thinking this is historic"
Der Widerspruch meiner Frau gegen eine Schwerbeschädigung von nur 30 Prozent bei ärztlich bestätigtem #mecfs und Fibromyalgie wurde vom Landesamt für Soziales (was für ein unpassender Name) Rheinland-Pfalz zurückgewiesen. Ich bin wütend.
Will be spending some hot days in #karlsruhe with our dog Axel while @mcfly will attend #gpn Looking for suggestions for nice shady places where we can go, preferably with possibilities to sit down from time to time because of my #LongCovid #mecfs #dogsofmastodon #wirehairedvizsla #gpn23
It's so good to see Dianna (Physics Girl) recovering finally. Such good news.
"What is ME/CFS?": 4-page factsheet created by members of the Science for ME Forum (February 2025)
https://s4me.info/docs/WhatIsMECFS-S4ME-Factsheet.pdf
Takes a conservative approach e.g. with regard to prevalence.
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
"Robbing Peter to pay Paul" where "Peter" is your lack of energy and "Paul" is your lack of energy last week.
Recap of Bateman Horne Center Support Group: Tapping Into the Collective Wisdom of the Group
May 13, 2025
https://batemanhornecenter.org/wp-content/uploads/2025/06/20250513-Support-Group-Recap.pdf
#chronicillness #MEcfs #LongCovid #spoonie #PwME @mecfs @longcovid @chronicillness @spoonies
Continued thread
Am Tag nach den "sozialen Kontakten" (bei mir zu Hause, alle Besucher*innen kommen zu mir, zeitlich stark begrenzt) hab ich dann meistens trotzdem eine Art Kater, wie als hätte ich wilde Party gemacht bis 6h früh. (Klassischer "Crash-Crash" ist das aber keiner).
Was für ein wildes Leben ich mal führe, hätt ich mir nie gedacht. :) *Achtung, Ironie*
Late in 2024, Kathryn Vercillo of Threadstack and Create Me Free sent me some intriguing interview questions which I used as journaling prompts between liver infections. The interview is now online for all to read. #SciArt #embroidery #MECFS
Threadstack · THREADSTACK Interview with Lia Pas of The Slowest Thread
Warum ich aktuell wenig schreibe hier? Ich versuche gerade wieder ein paar wenige "soziale Kontakte", offline, zu ermöglichen. Das geht mit #LongCovid #MECFS aber nur, wenn ich irgendwas aus meinem Energiebudget streiche.
Die, die mir schon länger folgen, wissen, dass ich mit 40 Jahren 8/23 schwer an #MEcfs erkrankt bin, inkl. #POTS, #MCAS und #SFN (ME kommt selten allein). Aber nicht genug: Ich habe binnen weniger als einem Jahr eine CCI (craniozervikale Instabilität, instabile HWS) entwickelt, und auch der Rest meiner Wirbelsäule fällt sprichwörtlich auseinander. Gestern am Spätabend nun stolperte ich über eine aktuelle Studie und bin mir zu 100% sicher:
Ich gehöre zu Cluster 1:
1/ https://www.healthrising.org/blog/2025/06/15/craniocervical-instability-chronic-fatigue-syndrome/
Health Rising · Did a Lab Study Just Uncover a Craniocervical Instability Subset in ME/CFS? - Health RisingA cerebral spinal fluid study finds a cluster of ME/CFS patients who may have spinal issues including craniocervical instability.
[Australian context]
Ooh just got an email saying recruitment is open for this.. I don't qualify but what cool research!!
https://www.omf.ngo/mellow-tracking-hormone-fluctuations-in-me-cfs-and-long-covid/
Email had a link to register but I can't see one on the website :/
Open Medicine Foundation · MELLOW: Tracking Hormone Fluctuations in ME/CFS and Long COVID - Open Medicine FoundationStudy examines how hormone fluctuations affect metabolism and immune responses in ME/CFS and Long COVID by analyzing biofluid markers.
The Implications and Predictability of Sleep Reversal for People with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Machine Learning Approach
https://www.mdpi.com/2227-9032/13/11/1255
Image is from the latest Science for ME weekly update
'Reframing beliefs about their illness does not lead to recovery of tube-fed patients with very severe ME/CFS. Analysis of the BMJ article by Miller et al.'
https://papers.ssrn.com/sol3/papers.cfm?abstract_id=5284667
Image is from the latest Science for ME weekly update
Continued thread
2/
"Conclusions about effort preference are unwarranted when group differences in ability could account for disparities in task performance"
https://www.frontiersin.org/journals/psychology/articles/10.3389/fpsyg.2025.1593269/full
Image is from the latest Science for ME weekly update