Lmst

Nun, nach dem tagesschlafen folgte das nachtwach. Putzmunter seit 3 Uhr, Kaffee und Frühstück zur Unzeit.

Es gibt wohl gleich eine Gratisvorstellung im Traumkino.

Fröhliches Nikolausmoin umzu 🧑🏼‍🎄👣...🍫+🥄...👢

Alltag mit #mecfs

Zur Zeit schiebe ich zum Beispiel wieder einen Einkauf auf, eigentlich wollte ich Donnerstag gehen, aber es wird wohl frühestens Montag etwas.

In der Zwischenzeit warte ich hauptsächlich ab, dass ich die Energie für den Einkauf habe und danach werde ich hauptsächlich abwarten, dass ich wieder erholt genug bin, um irgendwas zu machen.

Viel Zeit besteht einfach nur aus "Aussitzen", Abwarten und kaum nutzbare Zeit vertrödeln, denn zu viel machen würde das ganze nur verlängern.

2/

#MECFS

English-language information on fundraising for a treatment trial of an interesting drug in Norway

https://www.me-foreningen.no/om-oss/stott-me-foreningen/me-fondet/english-me-fund/

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs

English Version of me-fondet.no

Help us fund the ResetME trial for ME/CFS

The ResetME may confirm a promising pilot-study with Daratumumab. There is hope for ME/CFS patients!

There is no approved, effective treatment for ME/CFS – but you could help us change that!

A pilot study with the monoclonal antibody daratumumab, an immune-system drug originally developed for cancer, has shown very promising results in a pilot study for ME/CFS patients with post exertional malaise (PEM). Even though the pilot study is encouraging, a larger study with a control group is needed to verify or refute the results. The Haukeland group will conduct a study with 66 patients jointly with Oslo University Hospital. A new, positive study is a prerequisite for advancing daratumumab to be accepted as a treatment for ME/CFS, and also to be an option in other countries. A randomized, controlled trial is already under way – but it needs your help to fully fund it.

RE: https://mastodon.ie/@IrishMECFSAssociation/115573309345315066

We sold another pack out today. We only have 2 left of another set and 3 left of the 3rd set.

Though still plenty of others: sales have been disappointing this year, the lowest ever by a long distance.

#MEcfs #PwME @mecfs

#fatigue #chronicfatigue #chronicfatiguesyndrome #cfs #mecfs #chronicillnessmemes #chronicillnesshumor #chronicillness #autoimmune #chronicallyill #spoonie #spoonielife #spooniememes

@jest_iris - sleeping isn't enough| I need to be factory reset

Der Besuch bei der neuen Hausärztin hat wieder alle Erwartungen erfüllt. #MECFS - noch nie gehört, sich mehrfach buchstabieren lassen. Erst Mal behauptet, die Symptome würden ja einer Depression entsprechen. Dann hat sie doch gegoogelt, die Krankheit sogar in ihrem System gefunden und letztlich in die Krankenakte übernommen. Es sei ja wohl "doch organisch und nicht psychisch." Immerhin. Alles hätte man natürlich auch in meiner elektronischen Krankenakte auf meiner Karte gefunden, aber das 1/2

Day 5 #ArtAdventCalendar • This is my first #MECFS #symptomatology #embroidery: paresthesia (hand 1) 2016. The idea came to me while doing a meditation technique to dissect the tingling sensations in my body to make them less overwhelming. #SciArt

An embroidery on bone white linen. There is the faint outline of a hand, fingers apart. The hand is filled with thick dark blue lines intertwining and crossing over. There are finer thin lines in bone white beneath the thick blue lines. At the wrist, the thick blue lines end in strands of thick thread, hanging over the edge of the linen.

#chronicillnessmemes #chronicillnesshumor #chronicillness #autoimmune #chronicallyill #spoonie #spoonielife #spooniememes #fatigue #chronicfatiguesyndrome #chronicfatigue #cfs #mecfs

Who else gets fatigue so bad that when you lay down, it feels like you need to somehow lay down MORE? - bazaart

News Release 4-Dec-2025

To treat #longCOVID, we must learn from historical chronic illnesses, medical researchers say

https://www.eurekalert.org/news-releases/1107346

Lots of discussion of ME/CFS in full paper
"The lingering shadow of epidemics: post-acute sequelae across history"
https://www.cell.com/trends/immunology/fulltext/S1471-4906(25)00267-4

#PAIS @mecfs
#MyalgicEncephalomyelitis #MEcfs #CFS #PwME @longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #COVIDBrain #NeuroPASC
#Coronavirus
#COVID19 #COVID

News Release 4-Dec-2025
To treat long COVID, we must learn from historical chronic illnesses, medical researchers say
Peer-Reviewed Publication
Cell Press

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1918 Influenza victims crowded into an emergency hospital
image:

Influenza victims crowded into an emergency hospital near Fort Riley, Kansas in 1918.

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Credit: AP Photo National Museum of Health

In a paper publishing in the Cell Press journal Trends in Immunology on December 4, scientists and doctors highlight the importance of studying long COVID in the context of other post-acute infection syndromes or chronic illnesses. By analyzing historical accounts of other epidemics, they say, researchers can gain important perspective on the profound effects of these chronic illnesses—with the goal of informing more effective interventions for treating them.

“Post-acute infection syndromes are a long-overlooked but important area of medicine, and long COVID represents a contemporary manifestation of a phenomenon that’s been described for over a century,” says co-author Christine Miller of Yale School of Medicine.

Interessante #HBOT Studie bei #MECFS und #LongCovid medrxiv.org/content/10.110… - die Ergebnisse sollte man aber sehr zurückhaltend interpretieren. Denn:
❕liegt bisher nur als Preprint vor
❕keine Kontrollgruppe
❕kleine Teilnehmerzahl
❕vergleichsweise hohe Abbrecherzahl
❕11 Responder gegenüber 19 Non-Responder bei zu erwartendem Placebo-Effekt
❕Effektstärke auch im rel. kurzen gemessenen Zeitraum überschaubar, wenn man Zahl der HBOT-Sessions zB der geringen Verbesserung des Bell-Werte gegenüberstellt
❕Spannender finde ich die MRT-Daten, aber auch da müsste man erst größere Fallzahlen in kontrollierter Studie haben, um daraus etwas zu schließen.

"Ein besonders emotionaler Moment folgte kurz vor dem Anpfiff: HSV-Kapitän Nicolas Capaldo betrat das Spielfeld ohne Einlaufkind. Stattdessen hielt er ein Paar Fußballschuhe in der Hand – stellvertretend für all jene Fans, die nicht-sichtbar bleiben, weil sie die Belastung eines Stadionbesuchs nicht mehr bewältigen können."

#HSV und Empty Stands machen auf #MECFS aufmerksam

https://www.hsv.de/news/hsv-und-empty-stands-machen-auf-me-cfs-aufmerksam

#HSVVfB
#VfB

"The future of Medicaid is 'really scary' for people with Long COVID"

https://thesicktimes.org/2025/12/02/the-future-of-medicaid-is-really-scary-for-people-with-long-covid/

Key points are listed in the attached image (with alt text)

@longcovid @mecfs

#USPol #Medicaid #HealthCare #Disability #LongCovid #MEcfs #ChronicIllness

- Cuts to Medicaid and the Affordable Care Act in President Trump’s spending bill total almost $1 trillion and will lead to some 10 million people losing their insurance in the next decade.

- The bill will require Medicaid recipients to work in order to maintain their insurance, despite such measures being ineffective and discriminatory.

- Though there are technically exemptions to the work requirements for people with disabilities, patients and advocates worry they will not be applied correctly.

- The bill also increases bureaucratic red tape and confines eligibility, which will result in many losing insurance and access to care. For those with energy-limiting diseases like Long COVID, it will be even harder — and more harmful — to keep up.

- Medicaid is the bare minimum for people with Long COVID and other complex conditions. But instead of improving it, amid skyrocketing disability claims, the Trump administration is making it worse.

Probably the best week I've had at least four years.

#MECFS #PEM #Pacing #Recovery2025

I think some of my pain is anticipatory. The pain is, and always has been, my body trying to convince me to slow down.

Yesterday, I had plenty of energy aside from what the pain drew away from me. So now I just have to convince my body that I really truly have gotten the message. I've lied to it so many times that it doesn't believe me.

Last night, I was still hurting after work, and while watching a thing, I decided to lay down (for ten minutes) after the thing was over. I immediately started to feel better, before the show was over!

BUT!!! I followed through anyway. I wanted my body to be rewarded for easing up, to let it know I don't need it screaming at me for me to listen.

#MECFS
#PEM
#Pacing
#Recovery2025

A really good week for me.

I still have high-pain days, which makes it hard to believe sometimes that I'm healing.

But the signs of improvement are unmistakable. I'm really only a couple of weeks in to having a sustainable amount of work and pressure, where I can pace myself at leisure, where I'm not having to force myself through pain and exhaustion multiple times a day, even through things as small as making lunch.

Even though my pain yesterday ranged between 4-8, and I had "pain-fog" (it's brain fog due to hurting too much to focus on anything else), my emotional outlook remained at peak, and I worked for what to is me a full day (2.5 hours). In fact, I clocked almost ten hours this week, and ten hours hasn't been a realistic goal for most of the year. (Eight hours had become my strettttcccch goal!) Some of that was even being alert on a long, important call where I was the driver of the conversation.

So I'm still getting fatigue and pain, but my capacity has increased. I'm doing well on the self-restraint of not taking on too much, or thinking "Oh, I can push myself to do one more thing," or even pushing too hard on my recreational activities.

The "push myself on one more thing" was necessary, because the load was larger than my capacity. So I had to work in whatever I could while capable. Which was not sustainable. Being "capable" is not the same as avoiding fresh injury, and that's not the same as space to heal. I've had to work hard to carve that out.

#MECFS #PEM #Pacing #Recovery2025

From Tom Kindlon @tomkindlon

We had a good chat yesterday. Again after 3 PM, when the carvery closed, we had the room to ourselves.

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs

Photo of 2 men standing and one woman sitting

Ein #Buch von einer #MECFS Betroffenen für Betroffene und alle, die sie besser verstehen möchten. Hoffnungsvoll, aber ohne Kitsch, fantasiereich und trotzdem realistisch.

Ich bin möglicherweise EIN WENIG voreingenommen, aber das ist wirklich ein tolles Buch geworden. Schaut es euch doch Mal an: https://www.phantorion.de/products/im-keim-fluch-unserer-welten

#Werbung Hoffentlich kein Verstoß gegen meine Serverregeln, aber ich bin gerade einfach zu stolz, um still zu sein: Meine Frau hat ein Buch geschrieben, einen Verlag gefunden und nun einen Veröffentlichungstermin: Am 13.5.26 kommt "Im Keim - Fluch unserer Welten" raus und kann hier bereits vorbestellt werden: https://www.phantorion.de/products/im-keim-fluch-unserer-welten

Es ist eine wundervolle und spannende #Fantasy Geschichte über #chronischeKrankheit und #queereLiebe.

#buch #booktodon #mecfs #disability #queer