I never thought I'd end up with a chronic illness where the most useful health advice comes from an old Vaudeville joke:
Patient: Doc, it hurts when I do this!
Doctor: Then don't do that!
Edited 2y ago
neisvoid
Dringende Frage für einen Notfall im Familienkreis:
Falls irgendjemand Tips hat, wie man mit gesicherter Diagnosis Magenlähmung (Gastroparese) an nen Arzt kommt der ne Ernährungssonde legt, haut raus.
KH versteht die Dringlichkeit nicht, der Patient verhungert seit Monaten weil er nichts essen kann, Ärzte denken es wären nur Schluckbeschwerden oder Essstörung (trotz, ich wiederhole, gesicherter Diagnose) und reden die komplexen Vorerkrankungen des Patienten klein. Notaufnahmenbesuche ohne Erfolg.
Massive Nährstoffmängel, rapider Gewichtsverlust ("ist doch schön, dass Sie abnehmen!"),, in dem Tempo wird er vor Ablauf des Sommers tödlich verhungern.
Wir sind bereit, deutschlandweit zu fahren.
Edited 59d ago
📣 Reminder: #MEAction is giving away 2 copies (one paperback, one audiobook) of the book "Pillow Writers Anthology 1: Near-Life Experiences"
Their "Chronically Complex" podcast has extracts from the book:
https://www.meaction.net/chronically-complex-meaction-podcast/
Deadline for entry is December 15, winners will be selected the next day
I can't find an announcement on the #MEAction website but here's a link to what they posted on Bluesky:
https://bsky.app/profile/meactnet.bsky.social/post/3lbkjfa4w6c2t
@mecfs
What if movement didn't have to be big to matter? Unbound is a film woven from 20 bodies, 20 stories, and 1 thread of connection.
Join us for the premiere on July 29th at 6:30 PM ET. https://www.eventbrite.com/e/unbound-global-premiere-live-qa-tickets-1990987249459
A reflection on my process for this film on my blog: https://liapas.com/2026/07/11/unbound-a-dance-film/
"Unbound: Illness is not the end of dance"
A short film
(about 6 1/2 minutes)
"Twenty bodies. One thread of movement. Unbound is a short dance film created by individuals living with ME/CFS and/or Long COVID, exploring the tension between constraint and expression, stillness and vitality."
https://www.youtube.com/watch?v=mxK6UKtWuLc
For blind or visually impaired viewers there's an audio track with descriptions of the movements.
1/2
RE: https://vis.social/@lia_pas/116920216340348395
Unbound is now available to watch on YouTube! https://www.youtube.com/watch?v=mxK6UKtWuLc