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@khuruuk.bsky.socialOct 8, 2026, 9:11 PM

Question for #mecfs #longcovid #pwme folks: I have the above and have been seeing a complex care specialist and most things are going fine, I guess. I can work (from home) day to day, with no extras and be ok.

BUT, I’ve started waking in the middle of the night screaming from dreams.

@ustinoff.eurosky.socialOct 8, 2026, 8:15 PM

Man kämpft buchstäblich um ein paar Kissen.
#MECFS

@ustinoff.eurosky.socialOct 8, 2026, 8:15 PM

Wenn man #MECFS hat, kann es passieren, dass man sehr viel liegen muss. Vom vielen Liegen kann sich ein Dekubitus entwickeln, was sehr übel ist.
-Krankenkasse angerufen: was sollen wir machen?
Krankenkasse: frag mal Sanitätshaus.
Sanitätshaus: frag mal Pflegedienst.

@hallofrech.wsocial.euOct 8, 2026, 7:58 PM

oh my god...it's pickle rick...but with me/cfs 😑

#picklerick #mecfs

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@parunzel.bsky.socialOct 8, 2026, 7:40 PM

Aimovig
Vyepti
Ajovy

Habt ihr zu einem davon Erfahrung mit #MECFS, #POTS und #Migräne? Mein Neurologe schickt mich zu euch, weil ihr das besser wisst und ich darf dann aussuchen was ich gerne hätte. 🥹

Erfahrungsberichte von "nur" Migränikern sind aber auch herzlich willkommen!

@tomkindlon.bsky.socialOct 8, 2026, 7:05 PM

Hope to see a few of you at this. 👋

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid

@mcordellier.bsky.socialOct 8, 2026, 6:48 PM

ich brauche eine ehrliche, schonungslose Meinung zu www.longcovidklinik.at #MECFS @sabinehermisson.bsky.social @bettinagrande.bsky.social anderen? Geht um einen Schwerkranken (aber nicht schwerst), der Hilfe braucht aber unsicher ist. Nicht rehafähig, jedoch Behandlungwillig. Gerne PN

@solveme.bsky.socialOct 8, 2026, 6:42 PM

Sign up for our Nov. 10 webinar on the Renegade Research SIGNAL study. We’ll discuss how people with #MECFS and #LongCovid can join and borrow therapeutic devices for home use at no cost & contribute data to the BIC unhide® platform for research.

Register:
https://ow.ly/LGx250ZIvx7

Portraits of four Renegade Research reps who are panelists for the Nov. 10 Solve M.E. webinar on the SIGNAL study. The study lends therapeutic devices to people with ME/CFS and Long COVID at no cost for home use and collects their data for research.
@irishmecfsassoc.bsky.socialOct 8, 2026, 6:36 PM

Informal ME/CFS social meet-up in Dublin hosted by Tom Kindlon @tomkindlon.bsky.social on Friday, October 23

Hopefully we’ll see some of you there
irishmecfs.org/blog/friday-...

Carers/parents/similar welcome.

#MEcfs #LongCovid #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

Informal ME/CFS social meet up in Dublin 2:30 PM-4 PM, Friday, October 23 The Bell Bar & Restaurant, Dublin 15, D15 EW77 https://www.thebell.ie All welcome incl. relatives & people with long Covid Buy your own food +/or drink Register for any updates (in case cancelled - hasn't happened so far): tomkindlon@irishmecfs.org Host: Tom Kindlon Irish ME/CFS Association for Information. Support & Research logo
@chronicloaf.bsky.socialOct 8, 2026, 6:09 PM

The first episode of #AmericanHorrorStoryApocalypse just started in the #ChronicLoaf stream

mzelo.com/app/rooms/ch...

#Criptober #Mutation #Halloween #spookyseason #OctoberArtChallenge #AHS #DisabilityCommunity #mecfs #ActuallyAutistic

American Horror Story Apocalypse season poster
@dgmecfs.bsky.socialOct 8, 2026, 4:36 PM

💻 #MECFS - Betroffenen bleibt der Zugang zu wichtigen Sozialleistungen und Unterstützungsangeboten - wie etwa der Erwerbsminderungsrente oder einem Pflegegrad - oft verwehrt. In diesen Situationen leisten Sozialverbände wie der VdK rechtlichen Beistand. Die ehrenamtlichen Lots*innen investieren ↘️

Schriftzug: Vortrag der DG.ME/CFS beim Sozialverband VdK BaWü zur Aufklärung ehrenamtlicher Lots*innen über ME/CFS
@lyssinum.bsky.socialOct 8, 2026, 4:25 PM

#MEcfs will keiner
Hätte gerne all meine bescheidenen Jobs zurück.

@youjustgo.bsky.socialOct 8, 2026, 4:25 PM

#MECFS "is real, and not just real, it is deeply deeply serious. It is one of the worst diseases you can have."

George Monbiot from The Guardian says stop blaming ME patients for their illness, recognize it is a biological illness that ruins lives, and we need MUCH more funding to find treatments.

@tomkindlon.bsky.socialOct 8, 2026, 3:34 PM

4/
Another extract that quotes me from "Patient's knowledge, doctor's ignorance: The production of knowledge about myalgic encephalomyelitis" by @chloedecanson.bsky.social

#MEcfs #PwME #CFS #epatient #MyalgicEncephalomyelitis

Lay scientists do not merely criticise existing institutional research on the disease, but also produce their own. In this way, they produce not only extitutional, but also what they have called patient-led and what we might call more generally lay-led science (McCorkell et al., 2021). They produce, sometimes in collaboration with institutional scientists, new studies, review articles, opinion pieces, and conceptual-definitional groundwork, which they publish in scientific journals.30 I devoted considerable time and energy in writing a narrative review of the reporting of harms associated with graded exercise therapy and cognitive behaviour therapy in ME/CFS. This included collating data from patient surveys, data which generally had never been submitted to the peer-reviewed literature. I subsequently published other papers on the topic of the safety of graded activity therapies and harms reporting, along with reanalyses of the PACE Trial, a major UK trial which was designed to be the definitive assessment of CBT and graded exercise therapy for CFS. (Tom Kindlon)
@miskaknapek.bsky.socialOct 8, 2026, 3:06 PM

Miska needs help fighting a severe immune damaging disease that is beating me up and putting an end to him.
Severe #MECFS often does as much to the immune system like HIV/AIDS, so the body can't fight disease and develops organ damage, to the point it stops working

www.gofundme.com/f/help-miska...

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@fwm.bsky.socialOct 8, 2026, 2:57 PM

Behördlicher #Ableismus bei #MECFS : Dreistigkeit

Einen Tag nach der Einsicht in die zensierte Akte teilt uns die untergeordnete Behörde mit, dass sie unserem Widerspruch nicht abhilft und beruft sich auf ein Dokument, das nicht in der Akte war. Den Job der zuständigen Rechtsabteilung will keiner.

@meassociation.org.ukOct 8, 2026, 2:46 PM

This leaflet explores the history & causes of #MECFS, its overlap with #LongCovid, & predisposing, precipitating & perpetuating factors. It reviews what we know - & don’t know - about this multisystem illness, & current & future research. Written by Dr Shepherd.

https://meassociation.org.uk/w6ph

IMAGE DESCRIPTION: Someone holding the MEA's booklet 'What causes ME/CFS?' on a purple background. Wording reads: What Causes ME/CFS? Updated booklet.