Menschen mit "(very) severe ME" müssen gesehen und gehört werden - nicht nur am 8. August, dem #SevereMEAwarenessDay!
#MECFS ist eine schwere Multisystemerkrankung, die eine Vielzahl belastender und lebensverändernder Symptome verursacht. Bislang fehlt es an ausreichender Forschung und adäquater Versorgung der Betroffenen. Eine heilende Therapie gibt es nicht. Das Gesundheitssystem ignoriert insbesondere die schweren Fälle überwiegend.
#SevereME #pwsevereME #pwverysevereME #MEAwareness
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STIMMEN AUS DEM DUNKEL – #SevereMEAwarenessDay
Der internationale Severe ME Awareness Day ist denjenigen gewidmet, die kaum gesehen werden und oft nicht mehr selbst sprechen können, weil sie unvorstellbar krank sind: Den Menschen mit der schwer(st)en Verlaufsform von ME/CFS (Myalgische Enzephalomyelitis/Chronisches Fatigue Syndrom).
Sie leben meist in Isolation, sind oft bettgebunden, extrem reizempfindlich und kämpfen mit einer schier unvorstellbaren Symptomlast.
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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.
Also released today for #SevereMEAwarenessDay , Kara Jane's posthumous album "In Limbo". Here's an article written by her friend:
Today is #SevereMEAwarenessDay . Here is the annual incredible gallery of art, writing, and video by people with severe ME/CFS
https://www.meartistsproject.com/severe-me-artists-project-2025?mc_cid=9ce95da3a4
#MECFS #MillionsMissing #ChronicIllness #DisabledArt #DisabledJoy
Wenn ihr körperlich und mental die Energie dazu habt und in der Nähe von einem wohnt, hoffe ich, dass heute ein paar von euch zu einem Trauergang zum Tag für schwer an ME/CFS Betroffene gefahren sind.
#StimmenAusDemDunkel #SevereMEAwarenessDay #MECFS #MEAwareness #pwsevereME #pwverysevereME #Erfahrungsbericht #severeME #verysevereME #Awareness #ChronicIllness #Zitate #Quotes #Fatigatio
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STIMMEN AUS DEM DUNKEL – #SevereMEAwarenessDay 2025
Am 8. August ist internationaler Severe ME Awareness Day – ein Tag für diejenigen, die kaum gesehen werden und oft nicht mehr selbst sprechen können, weil sie unvorstellbar krank sind.
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Die Zitate stammen aus den Erfahrungsberichten auf unserer Website:
🔗 https://www.fatigatio.de/me/cfs/leben-mit-me/cfs
Wir empfehlen außerdem das Heft Nr. 32 aus unserer Schriftenreihe: „Unser Leben mit ME/CFS“ – erhältlich im Shop auf https://www.fatigatio.de
💙 🖤
#StimmenAusDemDunkel #SevereMEAwarenessDay #MECFS #MEAwareness #PEM #pwsevereME #pwverysevereME
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🖤 STIMMEN AUS DEM DUNKEL – zum #SevereMEAwarenessDay 2025
Am 8. August ist internationaler Severe ME Awareness Day. Ein Tag, der denjenigen gewidmet ist, die kaum noch gesehen werden – und oft nicht einmal mehr (für sich) selbst sprechen können.
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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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Bitte geh' für uns zur Demo, denn wir sind selbst zu krank dafür.
Am kommenden Freitag, den 8.8.2025, ist #Aktionstag für die Betroffenen von besonders fies ausgeprägter myalgischer Enzephalomyelitis (#severeME).
15 Uhr in #Berlin, von der #Weltzeituhr am #Alexanderplatz zum Roten Rathaus
“If you were REALLY that sick then it won’t matter if you get set back.”
I’m begging non disabled people to stop acting like we can’t possibly have a quality of life while severely ill. Like our baseline isn’t the most important thing to us.
My baseline is EVERYTHING.
Sometimes people believe that if you’re severely ill - you must not have any quality of life and therefore you should be willing to push yourself. Willing to risk a setback.
They don’t understand the devastation setbacks cause or the realities of chronic illness.
I AM severe. I’m housebound & most days I’m bedbound. I need help to shower and sometimes to get to & from the bathroom. I can’t cook for myself and eating & swallowing is a challenge. To most people it would appear I have no quality of life.
But I still have joy. I have my writing. I have the community here who I value & cherish and who’ve helped me find a purpose again. I’ve got people who see me as I am & love me anyways. It doesn’t look like the life I planned - but it’s mine & I’m making the most of it.
Writing is incredibly hard. I’ve got carpal tunnel and tendonitis in both wrists. Hypermobile fingers which dislocate frequently. Hypoxia from low BP which means I have to lay upside down to form a coherent thought. It doesn’t come as naturally or easily as it did before.
Despite those challenges - it brings me more joy now than it did when I was writing professionally. My heart soars when I complete a thread or an article. When I read comments that say my experiences helped someone. These things light a fire in me that keeps me going.
That joy is so important to me - because much of my day to day life is suffering. Until you’ve experienced losing your health, your independence, your autonomy & the ability to trust your own body… you won’t ever truly understand. It’s a grief that never fully goes away.
If you manage to carve out a way to have joy - you won’t do anything to risk it. If you manage to find a way to gain some function back (for me it’s getting to the bathroom unassisted and regaining a few foods to eat)… you won’t do anything that might cause you to lose it.
People won’t understand this. They will push you to do things that WILL risk your baseline. Often under the guise of “well you’re sick anyways so what difference does it make if you’re sicker?” It shows how little people understand the unrelenting & chronic nature of chronic illness.
We see this in people’s attitudes about masking and covid as well. This idea that since we’re already disabled - we should throw caution to the wind and not “worry so much” about covid. We don’t have that luxury. A Covid infection could rip whatever baseline we have from us.
I’m growing tired of the judgement. Of being pushed to do things by people who won’t be around to deal with the fallout. Of being put down by people who have the privilege of good health - and as a result can’t possibly fathom what losing one’s baseline does to a person.
I’ve worked really hard to maintain the small amount of independence I have left. I’ve made great personal sacrifices to avoid Covid and other infections that might put my baseline in jeopardy. Yet despite my efforts - things can and do destroy it. 1/2
#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #wearamask #chronicillness #keepmasksinhealthcare #SevereMEAwarenessDay
It’s #SevereMEDay.
Please remember people like me that exist with #SevereME
And remember those who were severe but are no longer with us.
Help those of us who are still here. Without help, we may not make it to the next Severe ME Day.
#pwME #MECFS #LongCovid #PwLC
#SevereMEAwarenessDay
@mecfs @longcovid
@chronicillness
@neisvoid
@disabilityjustice
@disability
I would really like a home and care.
(See pinned post and profile for details.)
This is me
This is existing with #SevereME
Heute am 8. August ist der weltweite #SevereMEAwarenessDay, der an Menschen erinnert, die schwer(st) an #MECFS erkrankt oder verstorben sind. Als Journalistin durfte ich zweimal das Thema aufgreifen:
(1) eine Reportage von einer Kundgebung in #Wien: https://www.radio-one.at/internationaler-me-cfs-tag/
(2) ein Podcast mit @Judyintheskynet aus der Reihe #DieStadtindir: https://stadtstreunen.at/podcast/ (Folge 8) oder auf jeder Podcast-Plattform
💙 Ihr seid nicht alleine 💙
I just updated my neurosurgical fundraiser so don’t have energy to post updates here, please read what I spent so much time and energy writing in my GFM!
Many #ME #MECFS patients have these brain and spine issues, care improves baselines, help us get care #SevereMEAwarenessDay
Today, 8th August, is #SevereMEDay aka #SevereMEAwarenessDay.
I have actually managed to write a blog-post this year!
#pwME #SevereME #VerySevereME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #PostViralFatigueSyndrome #MECFS #ELCI #PostViralDisorder
Link to Blogger:
https://crippledqueeranglo-europeanranter.blogspot.com/2024/08/severe-me-day-2024-funcap55.html
💙It’s #SevereMEAwarenessDay
Please considering giving mutual aid to help me survive while being bedbound from severe ME. My partner and I are barely making ends meet even after skipping meals and rationing medication.
My recent trips to the hospital has left me in an even worse state and we need support now more than ever
Please also check out the link in the comment for wshlist for items we need to help, as well as ways to contribute to our survival fund🔽
