Emerge Australia “Happy Easter” graphic featuring a rabbit sitting in sunlit grass beside a small nest with pastel Easter eggs, with the Emerge Australia logo at the top left.
For our #mecfs and #longCOVID community, holidays can feel different, and that’s okay. This Easter, honour your energy.
💙 Pacing is participation
🌸 Redefine celebration
🕊️ Listen to your body
✨ Further info zurl.co/dtaxR
Today is about what feels right for you.
5/
“(Contd) I have a bathroom that close and my doctor was genuinely concerned about the exertion cost of reaching it. That is where I am.”
#pwme #pem #longcovid #mecfs
4/
“Three months off, at minimum. Move to the first floor. Minimize every exertion. She mentioned a potty chair. Let that land for a moment. A potty chair, so I don’t have to walk the ten feet to the bathroom. (contd)”
#mecfs #longcovid #pem #pwme
In Kreis Kleve, we, a group of parents, are connected by the sheer force of our children having #LongCovid. I have never met Rosa, but the window to her #MECFS and #MCAS prison is imprinted in my brain. Taped off. Dark. Burried.
Here is here story (in German) & that of Kathi.
3/
“(Contd) Thinking is exhausting. Being upright is exhausting. I lie flat and stare at the ceiling, which has become a kind of companion these past weeks”
#PostExertionalMalaise #MEcfs #LongCovid
2/
“Now I cannot stay upright. The fatigue is a physical weight, not a feeling of sleepiness but something more like gravity has been turned up and my body is the only thing that hasn’t gotten the memo. Screens worsen my symptoms. Sound is exhausting. (contd)”
#mecfs #LongCovid #pwme #cfs #postcovid
Please help if you can, and repost to spread the word. And definitely read the whole thread. I have lived with serious #MECFS for decades now. And mori does an incredible job conveying how it feels as we scream for help, into a seeming void, year after year.
Agomelatin steht künftig im Off-Label-Use zur Behandlung der Fatigue bei Long/Post COVID und postinfektiöser ME/CFS zur Verfügung — GKV-erstattungsfähig nach G-BA-Beschluss vom 02.04.2026.
#LongCOVID #MECFS #Fatigue #Agomelatin #OffLabelUse
Please help if you can. Severe #MECFS makes every moment of the day unimaginably painful and isolating. Every donation lets mori know that we see, understand, and care. Thank you. 🌺🌺🌺
It feels really good to be able to work hard.
#MECFS #Journal #Recovery2026 #YardTales #rewilding #solarpunk
The Debt Came Due Notes From a Crash Fred Rossi Mar 30, 2026 There is a version of my life that exists in my memory like a photograph from a trip I’ll never take again. In that version, I wake up and get out of bed without negotiating with my body first. I drive to work. I talk to people. I solve problems. I go home. I am tired in the way ordinary people are tired, the kind of tired that a night’s sleep fixes. That life is gone. What replaced it has a name. Long COVID. ME/CFS. Post-exertional malaise. The clinical language is clean and distant, which is probably why it fails so completely to describe what it actually feels like to live inside this body right now. Here is what it feels like: I am in a crash. What a Crash Is People who don’t have this illness hear the word “crash” and picture something dramatic. A sudden collapse. A trip to the emergency room. Sirens. A crash is not that. A crash is slower and more total. Post-exertional malaise is the medical term for what happens when someone with ME/CFS or Long COVID exceeds their energy envelope. The body doesn’t just get tired. It breaks down. It stops regulating itself. And unlike ordinary fatigue, which responds to rest, PEM doesn’t resolve with sleep. It compounds. Every small expenditure of energy, whether physical, cognitive, or emotional, costs more than it would in a healthy person, and the debt accumulates in a way that rest can only partially address.
🧵
Thoughtful blog post by someone with #LongCovid & #MEcfs. Initially focuses on describing the PEM effects of working 3 days in a row before discussing how the whole illness(es) & the effect it's having on his life is making him feel emotionally
centerleftstack.substack.com/p/the-debt-c...
#PEM
1/
Damn it I was gonna take before and after pictures but forgot.
Anyway, a majority of the area is covered now. Ran out of cardboard and there's some stuff I can't move myself.
#MECFS #Journal #Recovery2026 #YardTales #rewilding #solarpunk
Anyone else have experience trying this? #MECFS #LongCovid #pwME #PEM
Blue background with black text. There is a photo of Ramelle, a photo of a power wheelchair in tilt, and a GoFundMe graphic. The text says: Power wheelchair for Rams. Raising funds to get Ramelle a power wheelchair so they can regain independance
A blue background with black text. There is another photo of Ramelle and their cat. There is a red graphic with white text that says “Donate (heart)” Text: This is Rams. For the past 4 years, Ramelle has been living with severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) — a debilitating neuroimmune illness that has left them mostly bedbound and dependent on full-time care. Recently, medication has helped enough that Ramelle can tolerate a bit more movement and stimulation. Their medical team believes that a custom power wheelchair would safely give them some independence back. Unfortunately, the wheelchair they been prescribed costs S28,745. Insurance will only cover $2,300, leaving $26,445 out of pocket.
Blue background with black text. There is a photo collage of Ramelle, one of them in a hospital bed wearing a mask with their partner, another of them in bed cuddling their cat, and a picture of a positive covid test. The Text: We've spent months searching for funding options in BC - including charities, organizations, and government programs - but none have been able to help. So we're asking for help from the community. If you're able to donate or even just share this post, it would mean the world to us. Every share helps bring Ramelle closer to regaining some freedom. At the bottom, it says: GoFundMe link in bio
Hi all! My partner put together a fundraiser to help me get a power wheelchair so I can have some independence back! Our insurance barely covers a fraction and we exhausted all other options
Even $5 will help!
gofund.me/770cc8093
#mutualaid #disability #mecfs
Der Frieden hatte bisher Bestand. Mein Kraftbudget ist unverändert gering, aber mit der Mikrodosis Cannabis bei geringsten Symptomen und Schlafdoping konnte ich seitdem PEM verhindern. Ich klopfe dreimal auf Holz. #mecfs
S1E1 of the amazing series #JuryDuty, is starting next in the #ChronicLoaf stream
Please post your #MutualAid needs under this post during today's #MutualAidMarathon
mzelo.com/app/rooms/ch...
#comedy #mocumentary #NEISvoid #spoonie #ChronicPain #mecfs #ForTinu #cannabisculture
Ik, en miljoenen(!) met mij, zijn bed of huisgebonden door deze ziekte die onder andere veroorzaakt kan worden door het COVID-virus. We hebben nog geen zicht op een uitweg middels medicatie of wat dan ook. Dat deze boodschap zichtbaar is voor miljoenen kijkers, geeft hoop!
#mecfs #longcovid
Irgendwann fällt einem auf das man manche Menschen wahrscheinlich schon zum letzten Mal gesehen hat. Weil,is schon paar Jahre her,dann kam ne Pandemie,dann wurde man immer kränker und so vergeht die Zeit. That's it,das wars dann.
#chronischkrank
#IIH
#MECFS
Merci à @cqfdjournal.bsky.social, à Baptiste Mollard pour leur écoute et leur compréhension du combat des malades d'EM 🙌
#emsfc #mecfs
Wie ich gestern lernte, versteht man mich nicht mehr, da ich zu sehr „im Thema“ bin.
Also ganz einfach:
Anstatt zu sagen, diese Therapie(hier CBT=kognitive Verhaltenstherapie) bringt keinen Nutzen (Genesung) bei #MECFS, wird die Grenze von „Nutzen“ auf „schadet nicht“ reduziert.
Today I'm planning to work outside. There's so much to do out there, but I need to remember not to overextend, even if I'm having fun.
I've picked a tiny spot of land to rewild. For today I'd like to clear the junk and lay down cardboard to "solarize" the grass and burdock there, basically a […]
My energy levels have been doing really well!!
I had so much energy this week that by yesterday, I had to keep reminding myself that it was Thursday not Wednesday, but then it turned out to be Friday.
That's because I only started getting tired yesterday, when normally on a good week I'm very […]
#ME & #LongCovid have no FDA approval, no successful placebo-controlled trial, no accepted biomarker. Our placebo-controlled rapamycin trial is a strategic opportunity for change. Read how testing biomarkers with treatment holds so much promise:
simmaronresearch.salsalabs.org/placebotrial #MECFS
Ich gebe ihnen Recht, aber den Luxus haben Menschen nicht für die dieses Nichthandeln zu entweder massiven Verschlechterungen führt bzw. sogar in den Tod.
Und diese Menschen warten seit Jahren auf irgendeine Hilfe, in dunklen Zimmern, die nie kommt. #Mecfs seit 1969 komplett unversorgt.
You deserve to be loved without having to hide the parts of yourself you think are unloveable. #recovered #anxiety #nevergiveup #AlwaysKeepFighting #eatingdisorder #fibromyalgia #MECFS #Erythromelalgia #tinybuddha
Sensibilisierungsschulung für #mecfs. Nachdem es in Mödling stattfindet, hat vermutlich @SabineHermisson damit zu tun und man kann von hoher Qualität ausgehen? Liest sich jedenfalls sehr sinnvoll ❤️
inclusion24.com/mecfs/
Mja
Aktuell erneut einen Text über Adrenalinschübe bei #mecfs gelesen
Erhöhte Reizbarkeit kann darauf hindeuten, dass der Adrenalinschub gerade abflacht und man deutlich über seinen Grenzen war. Hupsi.
Aber es fühlt sich soo gut an was erledigen zu können
Muss den Text vmtl immer wieder mal lesen 😬
Die Mannschaften von Hoffenheim und Mainz
voller Solidarität mit Betroffenen von #MECFS ❤️🩹
