Naja, das war für mich extrem befremdlich.
Auf einem extrem heissen und hellen Platz fast ohne Schattenstellen war ich die einzige Person, die eine Maske getragen hat. Und die Leute standen eng beisammen!?
WTF?!
#Schweiz | Schweizer*innen:
Bitte geht, wenn ihr könnt, morgen an die #Liegenddemo nach #Bern … Setzt ein Zeichen.
Danke an alle, die gehen!
(Ich wäre gern dabei, aber leider fehlt mir die Energie (für Reiseweg UND Demo).)
Impressionen von den LiegendDemos in Berlin, Hamburg, Kassel, Stuttgart und Fulda sind jetzt auf unserer Website zu finden.
Hier geht´s zur Bildergalerie: https://buff.ly/6rdNKJ1
Ganz herzlichen Dank an alle Beteiligten und Helfer:innen! 💙
Kurzer Film von ZDF "37 Grad" über Leon (26), der seit 2017 an ME/CFS leidet.
„Hätte ich im milden Verlauf gewusst, wie schlimm diese Krankheit noch werden kann, wäre ich vorsichtiger gewesen und hätte ein langweiligeres Leben...
Anlässlich des ME/CFS Awareness Day und den LiegendDemos, hier in #Hamburg, ein lesens- und sehenswerter Beitrag von GEO.
Vielen Dank an die Betroffenen sowie Prof. Stark für die informativen Interviews!
#MECFS #MECFSAwarenessDay #LiegendDemo #GEO #Fatigatio #Interview
"ME/CFS - Hundertausende Schwerkranke nach wie vor in Notlage
Mehr als 600 000 Erkrankte in Deutschland, 63 Milliarden Euro gesellschaftliche Kosten jährlich, aber kaum Forschung: Patienten mit Myalgischer Enzephalomyelitis (ME) müssen um medizinische Versorgung kämpfen. Warum viele Gebäude heute blau leuchten."
#MECFS #LightUpTheNight4ME #MECFSAwarenessDay #IntMECFSConference2025
Mehr als 600 000 Erkrankte in Deutschland, 63 Milliarden Euro gesellschaftliche Kosten jährlich, aber kaum Forschung: Patienten mit Myalgischer Enzephalomyelitis (ME) müssen um medizinische Versorgung kämpfen. Warum viele Gebäude heute blau leuchten.
ME/CFS Awareness Kundgebung am 17. Mai um 15 Uhr auf dem Bundesplatz Bern
https://anarchistisch.ch/awareness-day-me-cfs-und-weitere-erkrankungen/
Am 12. Mai findet weltweit der Awareness Day für myalgische Enzephalomyelitis/Chronisches Fatigue-Syndrom (ME/CFS), Fibromyalgie, Multiple Chemical Sensitivity, das Gulf-War-Syndrom und weitere chronische immunologische und neurologische Erkrankungen (CIND). Millionen Betroffene kämpfen täglich mit lähmender Erschöpfung, diffusen Schmerzen, Gehirnnebel, autonomen Funktionsstörungen und extremer Reizempfindlichkeit – Symptome, die man ihnen meist nicht ansieht, die aber Ausbildung, Arbeit und- Demo Bern
I wrote a couple blog posts detailing my illness, the first in 2021, the second in 2024:
https://rheall.me/life-updates/2021/an-update-why-ive-been-so-quiet/
(This first one was written when I was still in denial about having ME/CFS and was still searching for definitive answers.)
https://rheall.me/life-updates/2024/further-updates-things-still-suck-but-thats-okay/
(This second one was written a couple years later, knowing what I have, and trying to explain how I had declined over those couple of years between the two posts.)
Anyway, what I hope to get out of "awareness" of this disease isn't just that we need more funding and visibility so that people realize how many of us exist and how badly we need new research; but to impress on people how randomly this disease hits, and how anyone, of any age, and any level of fitness, can develop it, and it will permanently change your life.
Since it's often triggered by viral infections, ME/CFS is often referred to as a "post-viral illness", and can be likened to your body going into emergency mode due to disease and never letting up.
COVID-19 causes Long Covid in greater than 10% of infections. Long Covid is an incurable post-viral illness that is indistinguishable from ME/CFS.
You don't want ME/CFS. Please, if you get anything out of today, it's to take this virus and the rest of your health seriously. Get vaccinated. Mask. Filter your air. Take care of yourself and others. Pace yourself and let yourself recover from infections.
@mecfs #mecfs #ChronicIllness #MECFSAwarenessDay #MEAwarenessDay
Today is #InternationalNursesDay, chosen because May 12th is the birthday of Florence Nightingale, the founder of modern nursing. What few people know, however, is that later in her life Florence Nightingale suffered a debilitating disease that often left her bed-bound and suffering from crippling depression. Though the cause of her illness has never been confirmed, and there are many hypotheses about what she may have suffered from, her symptoms also echo what we now call ME/CFS; Myalgic encephalomyelitis/chronic fatigue syndrome. That's why today is also #MECFSAwarenessDay.
I have ME/CFS. It's been a major part of my life for almost a decade now, even though I wasn't "diagnosed" until about four or five years ago. My world has gradually shrunk, and now I rarely leave the house, and often become overwhelmed by small things like social visits or showers or the slightest amount of exercise (like watering my plants or washing some dishes). I rely on my husband to care for me. There was no inciting "illness" or "event" that I can definitively trace this disease back to; I just slowly, gradually, over time, got worse until I was functionally disabled. There is no cure, and treatments only manage the symptoms, but don't relieve them. Most doctors have no idea how to deal with patients like me. Every year I get steadily worse through no fault of my own, and my world shrinks further. It's terrifying.
Anti. 🐘
Sofasophia
Fatigatio e.V.
Heather 