#severemeday — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #severemeday, aggregated by home.social.
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Wie kann eine schwere, extrem behindernde Erkrankung seit Jahrzehnten bekannt sein und verkannt werden, wo ihr Verlauf am schwersten ist?
Versorgungsparadoxie: Je größer der Bedarf, desto geringer die Reichweite und Hilfe.
Heute ist #SevereMEDay.
Und jedes Jahr zeigt, wie schwer Veränderung fällt.
#severemeday | Dr. Karin Kelle... -
Auflösungserscheinungen
Ich verblasse einfach.
Von Kohlschwarz und Edelsteinfunkeln zu Pastell.
Ausgewaschen.
Fadenscheinig.
Fast nicht mehr da.Vermisse mich so sehr.
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Every day is #SevereMEDay for me: 1267 of them, to be precise.
I miss meeting new people. I miss going out for anything other than medical appointments. I miss independence. I miss feeling the sun and the breeze.
It's been three years of being of this world but not in it. https://hashman.ca/me-cfs/
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Heute ist #SevereMEDay - hier ein Video eines Betroffenen, vom letzten Jahr.
ME und MECFS sind furchtbare, bisher unheilbare Krankheiten. Schätzungen gehen davon aus, dass in Deutschland etwa 650.000 Personen betroffen sind. Mehrheitlich Frauen und vor allem sehr viele davon im eigentlich arbeitsfähigen Alter. Wenn ihr ca. 100 Personen kennt, kennt ihr sicher auch jemand, der selbst betroffen ist. >>
https://www.youtube.com/watch?v=qVDwvthD3F0 -
For severe ME day
ME Association: Mahli Quinn Art Severe and very severe ME comic £3 A comic from Mahli Quinn that may help you convey some of the worst aspects of living with severe and very severe ME. For every comic purchased the ME Association receives a donation of 50p!
https://meassociation.org.uk/csme
#VerySevereME #pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis #SevereME #SevereMEDay #MEcfs #PwME #CFS #ME #MyalgicE
@mecfs -
For severe ME day
ME Association: Mahli Quinn Art Severe and very severe ME comic £3 A comic from Mahli Quinn that may help you convey some of the worst aspects of living with severe and very severe ME. For every comic purchased the ME Association receives a donation of 50p!
https://meassociation.org.uk/csme
#pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis #SevereME #SevereMEDay #MEcfs #PwME #CFS #ME #MyalgicE
@mecfs -
Idag är det #SevereMEDay, för att uppmärksamma hur svårt sjuk man kan bli i den här sjukdomen.
Skräcken som lever kvar i mig efter att ha varit så sjuk finns bara en bot mot: Att omvärlden vågar ta ställning för vår rätt till att inte plågas av vården.
detsvartahalet.wordpress.com/2026/04/11/s...
Skörda eller dö -
#Hamburg #LiegendDemo #UKE
#MECFS #MEAwareness
#SevereMEDayVon #MECFS betroffene Kinder benötigen dringend Hilfe, sie benötigen unsere Unterstützung, unsere lauten Stimmen! Macht bitte zahlreich mit, und teilt die Adresse dieser Webseite und unser aller Anliegen weitläufig! 🙏
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Heute ist / Today is #SevereMEDay.
Pflegeleitfaden für für Menschen mit schwerem ME/CFS: https://link.springer.com/article/10.1007/s10354-026-01155-6
Guidance on Home-Based Care for People with Severe ME/CFS: https://www.springermedizin.at/guidance-on-home-based-care-for-people-with-severe-me-cfs-a-tran/53039302
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An image on severe ME to mark severe ME day
#SevereME #SevereMEDay #SevereMECFS
#SevereCFS #VerySevereME @mecfs
#MEcfs -
One week ago to August 8, #SEVEREMEDAY
I have a Pinterest board with 714 pins on #severeMECFS here https://ie.pinterest.com/tomkindlon/mecfs-severe-mecfs-mecfs-myalgic-encephalomyelitis/ that could be shared around. It mainly contains images but also links to videos & articles
You don't need to be on Pinterest
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From #MEAction
Severe ME Artists Project, 2025:
https://www.meartistsproject.com/severe-me-artists-project-2025
Over 100 art pieces were submitted by severe ME patients. The website includes a video compilation of the artwork.
August 8th was chosen to honor Sophia Mirza, a severe ME patient who died of the disease. Severe ME Awareness Day was started by the 25 Percent ME Group in 2013.
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CW: Severe ME, medical abuse, neglect
Video (about 4 minutes) for #SevereMEAwarenessDay by Anil van der Zee:
https://www.youtube.com/watch?v=qVDwvthD3F0
"I know firsthand how hard it can be, and not just because it's debilitating, but also because the more ill you become, the less care you receive, even though you need it the most …
If I hadn't lived it, I would have thought that a video like this was probably exaggerated. But I am not exaggerating"
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Severe ME Day – 8th August – is dedicated to raising awareness about severe ME and remembering those who have lost their lives to this disease. Estimates suggest that around 25% of individuals with ME suffer from the severe form.
Read more: https://bit.ly/SevereMEday25
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Aun así no es fácil: los ruidos, las voces, el tacto, los olores, la sola presencia de una persona. Pero cualquier cosa es mejor que la situación en la que (sobre)vivía.
#320 #8agosto Día de la #EncefalomielitisMiálgica Severa 🛌🏼 https://domandoallobo.blogspot.com/2025/08/320-Dia--Encefalomielitis-Mialgica-Severa.html
#DíaEMSevera #ConcienciaciónEM #AcabarConElAbandono #MyalgicEncephalomyelitis #SevereMEDay #MEAwareness #EndTheNeglect #pwME
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De no atenderme a ser un caso urgente para #ServiciosSociales. Dormía en sábanas sucias que olían, con aseo deficiente, a menudo no podía levantarme para ir al WC o incorporarme para beber, me saltaba comidas incluso si era calentar un plato precocinado.
El Ayuntamiento me ofreció el #SAD antes que la Junta de Andalucía, el catering y me devolvió un poco la dignidad.
#DíaEMGrave #ConcienciaciónEM #AcabarConElAbandono #MyalgicEncephalomyelitis #SevereMEDay #MEAwareness #EndTheNeglect #pwME
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CW: Living with ME/CFS, Severe ME/CFS Awareness Day
Phew, that's a tough read. I can relate to this text a lot more than I wish I could.
Honestly, I don't like sharing links that make people feel worse, but if you want a glimpse of what living with ME/CFS feels like, here you go:
https://www.omf.ngo/severe-me-cfs-day/
Donations for more research and/or lobbying – either now or during the more "traditional" donation season – are what we need, so every consideration in that regard is highly appreciated.
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New Clinician Resource Guide Published for Severe ME Day 2025
https://worldmealliance.org/2025/08/new-clinician-resource-guide-published-for-severe-me-day-2025/
#SevereMEDay #SevereME @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME -
From the 25% ME group:
"This year we decided to focus on carers for our severe ME Awareness week"
https://25megroup.org/campaigning/severe-me-day-2025/
The financial information that makes up most of this page is on the UK system.
#SevereMEDay #SevereME @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #carers -
Am 08. August ist #severeMEday #SevereMEAwarenessDay – es wird anlässlich dieses Tages am 08. und 09. August Aktionen geben, um auf das Leid der Schwer- und Schwerstbetroffenen #MEcfs Erkrankten aufmerksam zu machen. Auch ich gehöre dazu.
Bitte teilt diesen Thread 🧵 und geht zu den Liegendemos/Trauergängen, wenn ihr es könnt. Nehmt Freund*innen, Kolleg*innen, Vereinsmitglieder und Familienangehörigen mit. Zeigt Flagge. Wir brauchen eure Hilfe.
⬇️⬇️⬇️
#Berlin #Hannover #koeln #muenchen
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One week ago to August 8, #SEVEREMEDAY
I have a Pinterest board with 699 pins on #severeMECFS here https://ie.pinterest.com/tomkindlon/mecfs-severe-mecfs-mecfs-myalgic-encephalomyelitis/ that could be shared around. It mainly contains images but also links to videos & articles
You don't need to be on Pinterest
#SevereME @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME -
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Following #SevereMEDay, we highlight a simple aspect of hospital care: BELIEVE ME. People with #SevereME endure very low quality of life. Patients should have their physiological disease recognised & symptoms addressed. Don’t magnify distress with disdain or medical gaslighting.
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💊Medication Management for Safer Hospital Care💊Accommodate extreme sensitivities in people with ME. Start medications one at a time and taper up slowly to avoid potential adverse reactions to drugs. https://buff.ly/46wv5lD #MECFS #SevereMEDay
@severeme @mecfs -
Freitag, 9.8., der Enkelinen-Geburtstag vorbei, laut und anstrengend und von allem ein bisschen zuviel. Gut, dass Geburtstag nur einmal im Jahr ist. #inmeinertimeline ein Bericht der Uni Kassel, was kostet uns Verkehr und Überraschung PKWs sind teuer. In Kalifornien brennen zertifizierte CO² Ausgleichswälder, Esso und Co wird's egal sein. Eine Liegenddemo zum #severeMeday Eine Rotkappe, Fledermäuse im Tiefflug und Knoblauch in Gläsern. Familienbesuch und hilfreiche Nachbarschaft. Moin
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Wait is #InternationalCatDay really the same day as #SevereMEDay, or is that timezone shenanigans?? 😁
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New for #SevereMEDay2024
The following notes are a guide from the 25% ME Group for those who are/may be going to hospital with #SevereME or #VerySevereME
https://25megroup.org/wp-content/uploads/2024/07/Severe-ME-Awareness-Day-2024-Hospital-Care.pdf
#SevereMEDay
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME -
Plakat an einer Bushaltestelle. Netzfund von heute aus einer Betroffenengruppe.
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https://meassociation.org.uk/2021/08/severe-m-e-awareness-week-sally-doherty/
Thinking of the poorliest amongst us on #SevereMEDay 💔💙 Those riddled with constant symptoms who are barely able to leave their beds.
Resharing a blog post I wrote for #MEAssociation about living with Severe ME & slowly