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#LongCovid

309 posts176 participants32 posts today
Public
Conny with a Y :tinoflag:

Canadian professor Steve Wilcox has between 95 and 100% of students in his game design classes masking up with N95s after playing a simple game he designed called “The Haunted Woods.” The game illustrates both the risks of contracting #LongCovid and the efficacy of masks in reducing the risk of repeat SARS-CoV-2 infections.

“Long COVID Mode”: Seeing the crisis through games - The Sick Times
thesicktimes.org/2025/05/06/lo

The Sick Times - Chronicling the Long Covid crisis · “Long COVID Mode”: Seeing the crisis through games - The Sick TimesGames uniquely incorporate emotional and social factors that influence how we take in information — making them surprisingly useful communication tools in a world in denial about the ongoing threats of COVID-19 and Long COVID. Whether through the cathartic storytelling in indie designers’ interactive theater projects or learning opportunities woven into popular video games, playing games can help people make informed decisions amid the Long COVID crisis.
#CovidIsNotOver
Public
Bass #AlleBurgers #EcoHumanist

#PeeNee2 on X wrote:

New preprint #RobWust + team

"our observations suggest intrinsic skeletal muscle abnormalities contribute to limited exercise capacity, including reduced capillary supply relative to muscle fiber size and mitochondrial impairments."

medrxiv.org/content/10.1101/20

#LongCovid #ME #MEcfs @longcovid

medRxiv · Skeletal muscle properties in long COVID and ME/CFS differ from those induced by bed restPatients with long COVID and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) suffer from a reduced exercise capacity, skeletal muscle abnormalities and post-exertional malaise (PEM), where symptoms worsen with cognitive or physical exertion. PEM often results in avoidance of physical activity, resulting in a lower aerobic fitness, which may contribute to skeletal muscle abnormalities. Here, we compared whole-body exercise responses and skeletal muscle adaptations after strict 60-day bed rest in healthy people with those in patients with long COVID and ME/CFS, and healthy age- and sex-matched controls. Bed rest altered the respiratory and cardiovascular responses to (sub)maximal exercise, while patients exhibited respiratory alterations only at submaximal exercise. Bed rest caused muscle atrophy, and the reduced oxidative phosphorylation related to reductions in maximal oxygen uptake. Patients with long COVID and ME/CFS did not have muscle atrophy, but had less capillaries and a more glycolytic fibers, none of which were associated with maximal oxygen uptake. While the whole-body aerobic capacity is similar following bed rest compared to patients, the skeletal muscle characteristics differed, suggesting that physical inactivity alone does not explain the lower exercise capacity in long COVID and ME/CFS ### Competing Interest Statement The authors have declared no competing interest. ### Funding Statement This study was supported the Patient-Led Research Collaborative for Long COVID, the AMC and VU foundation, ZonMw Onderzoeksprogramma for ME/CVS, the Solve ME 2022 Ramsay Grant Program, ME Research UK, ME Stars of Tomorrow Scholarship award from the ICanCME Research Network (to B.T.C.), and Stichting Long COVID Nederland. ### Author Declarations I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained. Yes The details of the IRB/oversight body that provided approval or exemption for the research described are given below: Ethics committee of Amsterdam UMC, Medical Association North Rhine (number 2018143) and NASA (Johnson Space Center, Houston, United States) gave ethical approval for this work. I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals. Yes I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance). Yes I have followed all appropriate research reporting guidelines, such as any relevant EQUATOR Network research reporting checklist(s) and other pertinent material, if applicable. Yes All data produced in the present study are available upon reasonable request to the authors
Public
Anna

Mocht je je ooit afvragen: kan ik iets doen voor mensen met #LongCovid of ME of pots of Lyme of een van de andere postvirale ziekten? Het antwoord is JA. Je kunt HEEL VEEL verschil maken. Het kost je een uur en heeft twee stappen.

Stap 1: kijk onderstaande documentaire over artsen met postvirale ziekten.
Stap 2: haal 2 andere mensen over het ook te kijken en vraag hen ook weer anderen over te halen.

youtube.com/watch?v=J0ywwLIfH_

YouTubeDoctors as Patients (with subtitles)By Anil about ME
Public
Stefan Bohacek

"Canadian professor Steve Wilcox has between 95 and 100% of students in his game design classes masking up with N95s after playing a simple game he designed called “The Haunted Woods.”"

thesicktimes.org/2025/05/06/lo

The Sick Times - Chronicling the Long Covid crisis · “Long COVID Mode”: Seeing the crisis through games - The Sick TimesGames uniquely incorporate emotional and social factors that influence how we take in information — making them surprisingly useful communication tools in a world in denial about the ongoing threats of COVID-19 and Long COVID. Whether through the cathartic storytelling in indie designers’ interactive theater projects or learning opportunities woven into popular video games, playing games can help people make informed decisions amid the Long COVID crisis.
#news#covid#LongCovid
Public
Omega_Scribet

'Nog eens vier centra voor postcovidpatiënten gaan komende maanden open'

"Vier nieuwe expertisecentra voor postcovidpatiënten openen de komende maanden de deuren: in Leiden, Groningen, Nijmegen en Utrecht. Daarmee komt het totale aantal op zeven."

"Het is niet de bedoeling dat alle patiënten met postcovidklachten in de centra worden behandeld. In totaal zouden zo'n 80.000 mensen ernstige klachten hebben na een coronabesmetting. In de centra wordt gezocht naar behandelingen die in een volgende fase juist door reguliere ziekenhuizen of huisartsen kunnen worden toegepast. Zodra dat op grote schaal lukt, moeten de expertisecentra zichzelf overbodig maken."

nu.nl/coronavirus/6354859/nog-

NU · Nog eens vier centra voor postcovidpatiënten gaan komende maanden openVier nieuwe expertisecentra voor postcovidpatiënten openen de komende maanden de deuren: in Leiden, Groningen, Nijmegen en Utrecht. Daarmee komt het totale aantal op zeven. Maar het doel is dat patiënten uiteindelijk bij de huisarts of in reguliere ziekenhuizen worden geholpen.
#gezondheid#LongCovid#PostCovid
Public
Bass #AlleBurgers #EcoHumanist

Nog eens vier centra voor postcovidpatiënten gaan komende maanden open

Het is niet de bedoeling dat alle patiënten met postcovidklachten in de centra worden behandeld. In totaal zouden zo'n 80.000 mensen ernstige klachten hebben na een coronabesmetting.

In de centra wordt gezocht naar behandelingen die in een volgende fase juist door reguliere ziekenhuizen of huisartsen kunnen worden toegepast.

nu.nl/coronavirus/6354859/nog-

#LongCovid @longcovid @ABScientist @whnnl

NU · Nog eens vier centra voor postcovidpatiënten gaan komende maanden openVier nieuwe expertisecentra voor postcovidpatiënten openen de komende maanden de deuren: in Leiden, Groningen, Nijmegen en Utrecht. Daarmee komt het totale aantal op zeven. Maar het doel is dat patiënten uiteindelijk bij de huisarts of in reguliere ziekenhuizen worden geholpen.
Public
Juchti

Ich habe einen Steckbrief von mir erstellt. Falls jemand von euch zu einer der deutschlandweiten Liegenddemos geht, die vom 10. bis 12.05. stattfinden (Termine habe ich hier gepostet), bitte nehmt diesen Steckbrief mit, falls das geht. Nehmt MICH auf diesem Wege mit. #MECFS #LongCovid

Danke!

Der Steckbrief zeigt ein Foto von mir, mein Alter (42), die Krankheitsdauer (2 Jahre) und führt auf, was ich am meisten vermisse (alles) und mir wünschen würde (Forschung, Solidarität, Unterstützung etc.).
Public
bananamangodog

Watching this now.

From the description: "In this film, five medical doctors open up about living with #PAIS/#IACC conditions like #me #longCOVID, and chronic #Lyme. It’s a format that I believe has never been shown before, not just in the Netherlands but possibly worldwide!

They speak candidly about their experiences with #illness, what they were taught (or not taught) in medical school, and how that shaped their own treatment decisions—sometimes even leading to harm. They reflect on how becoming patients themselves radically changed their views on #medicine, #science, and what needs to change in #healthcare. It’s raw, honest, and incredibly insightful—for medical professionals, researchers, politicians, and #patients alike.

This project was a true labor of love. We had zero budget. Three amazing cameramen, a few behind-the-scenes heroes, the MDs themselves, and those from the community who shared material for the film—all volunteered their time and energy. It wasn’t easy: illness and #PEM often got in the way, but we somehow made it."

youtube.com/watch?v=J0ywwLIfH_w

YouTubeDoctors as Patients (with subtitles)By Anil about ME
Continued thread
Public
ahimsa

Reminder - Long Covid patients and ME/CFS patients have a lot of overlap in symptoms. Some Long Covid patients fully meet the ME/CFS diagnostic criteria.

Research on Long Covid/Post-Covid and ME/CFS should be coordinated - new information could help both patient populations!

Some links for folks who are brand new to this topic -

What is ME:

meaction.net/learn/what-is-me/

#StopRestPace for Long Covid:

meaction.net/stoprestpace/

#MEAction NetworkWhat is ME?What is ME? Myalgic encephalomyelitis (ME) or myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), is a complex chronic disease that presents with symptoms in multiple body systems.  ME is a neurological disease according to the World Health Organization.  Susceptibility may be genetic, but the disease is triggered by infection in the majority of patients.  ME may be … What is ME? Read More »
#COVID#CovidIsNotOver#LongCovid
Public *
ahimsa

🚨 Call to action! 🚨

#MEAction has written a letter to NIH demanding full funding for the ME/CFS Research Roadmap

And they've asked folks to sign on to this letter:

airtable.com/appEwdLZCdtR0xwuv

From the letter:

"NIH budget for ME/CFS is $13 million for fiscal year 2024/25– the lowest in comparison to its disease burden of any disease monitored by NIH"

Even if you don't sign please boost 🙏

Thank you! ❤️

@mecfs @longcovid

Demand NIH Fund the ME/CFS Research Roadmap! #MEAction is sending an urgent letter to the newly appointed National Institutes of Health (NIH) Director, Dr. Jay Bhattacharya, calling for the NIH to allocate $50 million to fund the ME/CFS Research Roadmap.
#MEcfs#PwME#LongCovid
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