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@yoginho.spore.social.ap.brid.gyOct 9, 2026, 5:48 AM

RE: https://troet.cafe/@DanielLuecking/117409338050829013

Ich bin nächsten Dienstag dran. Grippeimpfung dann im November. Und gegen RSV bin ich ebenfalls immunisiert.

#PAIS #MECFS ist kein Spass. Ich hab es seit drei Jahren. Impfungen sind wichtig, damit es mir nicht schlechter geht. Und sie […]

@neurostingl.bsky.socialOct 9, 2026, 5:17 AM

#MECFS-News der letzten Tage: 1) Sozialministerium lässt Gutachter über ME/CFS von PVA schulen 2) neue ME/CFS-Ambulanz ist nach 36 Stunden überlaufen 3) mysteriöse therapeutische Haltungen zu ME/CFS manifestieren sich in KVT-Manuals

@marlaamara.bsky.socialOct 9, 2026, 4:50 AM

Was ich schön langsam wirklich nicht mehr aushalte.
Die Missstände bei den Begutachtung bei #PVA sind BREIT bekannt.
Für @schumannkorinna.bsky.social stehen trotzdem die Antragssteller unter Generalverdacht. Und nicht etwa die #PVA für die #Mecfs psychisch ist.

@bigpolarbear.bsky.socialOct 9, 2026, 12:54 AM

今日は伊勢湾台風浸水位をお届けします😃

筋痛性脳脊髄炎が広く周知され、治療法が見つかりますように。

#ブルーフォトチャレンジ
#筋痛性脳脊髄炎
#笑顔の花びら集めたい
#5月12日
#mecfs
#bluephotochallenge

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@tomkindlon.bsky.socialOct 9, 2026, 12:19 AM

"The survey has identified multiple different ways that psychologists can potentially give that support & help people with ME/CFS"

Extract from British Psychological Society ME/CFS Guidelines (September 2026 Update)

meassociation.org.uk/wp-content/u...

#MEcfs #PwME #CFS #MyalgicEncephalomyelitis

Welcome to the third British Psychological Society ME/CFS Guidelines update. We have been carrying out further analysis of the responses to our survey about what people with ME/CFS want psychologists to know to support both the guidelines and a planned research paper. Participants have said very clearly that the guidelines must recognise ME/CFS is a biological illness that cannot be cured by psychological methods. The role of psychology is support. The survey has identified multiple different ways that psychologists can potentially give that support and help people with ME/CFS: • Build trust: by believing people, listening compassionately, respecting lived expertise and taking limits seriously. • Support life with ME/CFS: including grief, identity change, loss of autonomy, loneliness, uncertainty, hope and changed relationships. • Support pacing: by helping people recognise limits, plan around exertion and reduce guilt, shame, self-blame or pressure to push through. • Adapt care: so psychological support is accessible, paced, flexible and appropriate for the person’s severity and energy limits. • Support mental health safely: by adapting work on anxiety, depression, trauma or other difficulties so ME/CFS symptoms are not misinterpreted. • Work with wider systems: including families, carers, schools, employers, healthcare, benefits, social care and voluntary-sector support to help support and educate others. • Reduce harm: challenge psychologization, coercion and patient blaming. Avoid minimising comments and inappropriate pressure to increase activity. - Help process trauma: disbelief, dismissal, psychologisation, delayed diagnosis, medical gaslighting, coercion and previous harmful treatment can impact mental health. - Signposting to resources: help with practical problem solving and system navigation, including benefits, social care, mobility aids, workplace adjustments, education, housing and finances where appropriate.
@ahimsa-pdx.bsky.socialOct 8, 2026, 10:35 PM

Thanks for posting, Tom!

A good intro for folks who know nothing about ME/CFS. Let's hope it spreads.

If anyone needs a version with an alt text description (transcript with image descriptions and sound effects) here's the version I posted on Mastodon

disabled.social/@ahimsa_pdx/...

#MEcfs #PwME

@alemmatthees.bsky.socialOct 8, 2026, 9:51 PM

(2/3) I had to glimpse the cards to organise them. Then one day I did the unthinkable. I took a printout of the Wikipedia article on #MECFS and read a whole sentence. Later a whole paragraph, then another! My eyes hurt and my brain crashed, but after a week I read it all and started on DecodeME.

@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