Was bij de reva-arts. Na een prettig gesprek kwam de koude douche, ze kunnen niks voor me doen wegens te ingewikkeld. En een fijn weekend. 😭 #longcovid
longcovid
#ZdenekVrozina on X wrote:
Even in the Omicron era, #LongCOVID remained common. A preprint meta-analysis showing that the burden persisted, even as the symptom profile shifted.🧵https://threadreaderapp.com/thread/2032194661763174507.html
De UWV-memo beoordeling duurzaamheid bij long covid heeft een update. Nog niet gelezen maar volgens Jim Faas is het ten goede:
https://www.linkedin.com/posts/jfaas_nieuwe-memo-post-covid-syndroom-voor-artsen-ugcPost-7437898317562474497-AyUp?utm_source=share&utm_medium=member_android&rcm=ACoAAAIxQ5UBU8DbZWoF8JqZoG8gTIiFFjgFRL8
#PAIS #LongCovid
Hello to all the ME/CFS and Long Covid activists out there 👋
Solve ME and #MEAction are joining forces to work on a medical education initiative for this year's Advocacy Week, March 23-27.
More details:
https://solvecfs.org/registration-open-for-me-cfs-advocacy-week-2026/
Registration link (Google docs form):
https://docs.google.com/forms/d/e/1FAIpQLSdR4eWbC6OWn1LAFAJhFg_CFz2xOaLYTPzj6kjSDELhAu0fdg/viewform
![How can we close the knowledge gap in ME/CFS and Long COVID care?
The Ask: We will meet with state and local healthcare leaders and ask for their support for introducing questions on ME/CFS and Long COVID medical exams at the national level.
The Theory of Change: By reaching out to patient safety/regulatory agencies, State Medical Boards, and State Health Leadership/Chief Medical Officers by state, framing ME/CFS education gaps as a patient safety and standard-of-care issue, we will move IACC’s [Infection Associated Chronic Conditions] such as ME/CFS and Long COVID from “optional knowledge” to “standardized knowledge” in clinical care.
Target: State healthcare leadership and patient safety agencies.](/proxy/post_attachment/98645/43e537ca10.png "How can we close the knowledge gap in ME/CFS and Long COVID care?
The Ask: We will meet with state and local healthcare leaders and ask for their support for introducing questions on ME/CFS and Long COVID medical exams at the national level.
The Theory of Change: By reaching out to patient safety/regulatory agencies, State Medical Boards, and State Health Leadership/Chief Medical Officers by state, framing ME/CFS education gaps as a patient safety and standard-of-care issue, we will move IACC’s [Infection Associated Chronic Conditions] such as ME/CFS and Long COVID from “optional knowledge” to “standardized knowledge” in clinical care.
Target: State healthcare leadership and patient safety agencies.")
Hier nun die deutschsprachige Fassung:
Von Otto Kolbl und mir:
Warum traf uns #LongCovid völlig unvorbereitet? Weil die Langzeitfolgen nach der #SARS-Epidemie von 2003 ignoriert und psychologisiert wurden. Parallelen zu #MECFS, #POTS, #SFN usw. wurden übersehen. Warnrufe verhallten ungehört.
https://ottokolbl.medium.com/long-sars-wurde-ignoriert-long-covid-9a8fe8742024
2026_2_16 “Botox for Migraine” Injection Set #2, and 5 Hour Drive to/from Appt
https://www.illmarks.com/2026_2_16-botox-for-migraine-injection-set-2-and-5-hour-drive-to-from-appt/
#2 #art #bodyHorror #bodyMapping #bodyart #bodymapping #chronicIllness #chronicIllness #chronicmigraine #disability #disabilityart #DisabledArtist #eds #healthcare #heds #longCovid #longcovid #mcas #medart #medical #medicalArt #migraine #MillionsMissing #neurology #POTS #pwLC #pwme #queer #QueerArt #QueerArtist #SciArt #SciComms #trans #transArt #TransPride
By Otto Kolbl and me:
Why were we so unprepared for #LongCOVID? Because long SARS was largely ignored and psychologized. Researchers failed to make the connection to #MECFS, #POTS, #SFN, etc. — despite having all the data.
German version coming soon!
https://ottokolbl.medium.com/we-ignored-long-sars-and-let-long-covid-suffer-the-same-fate-336372fe39d7
Edited 3d ago
Symptom: Social Security Disability Rejection
61% of Social Security applicants are denied after their first application. I am now on the second appeal, when 49% of remaining applicants are approved, and have hired a lawyer (disability lawyers are only paid if they win your case).
I set a new goal on ko-fi, in order to get more illmarks pieces into the world. The fundraising would cover framing two Med Art Advocacy pieces, and submission fees + professional scanning for the Mütter Medical Museum, a Senior Living Center, a Health Care Center & 3 other shows.
If you are able to comfortably, please buy me a ko-fi. We’re 1/3 of the way to the goal!
https://www.illmarks.com/symptom-social-security-disability-rejection/
#artmuseum #BetterFutures #bodyHorror #chronicIllness #chronicIllness #chronicPain #crowdfund #disability #disabilityart #disabilityJustice #FederalGovernment #kofi #longcovid #medicalArt #MillionsMissing #pwLC #pwme #redesignSystems #socialSecurity #SocialSecurityReform #SSI #systemsFailing #TransformativeFutures #UniversalBasicIncome #US #usa #ushealthcare
Science for ME: News in Brief
2 - 8 Mar 2026
🧵 of highlighted #MECFS and #LongCovid research papers being discussed this week on the Science for ME forum.
@mecfs
https://www.s4me.info/threads/news-in-brief-march-2026.49238/post-679290
The harsh truth of the matter is that the motive behind the downplaying of COVID is greed and social control.
The goal of capitalism has been to make the COVID pandemic simply disappear from public perception.
Capitalism has manufactured consent for massive infection, based not on data but on pressuring a return to work
The vulnerable/non-vulnerable dichotomy is not only unscientific, but also cruel. It serves to distance us from the oppressed and to biologize eugenics.
The vulnerable/non-vulnerable dichotomy serves to biologize the state's negligence, we are all vulnerable to COVID.
We have no control over how mortality or COVID cases are counted. Capitalism normalizes infections and hides real damage.
Covid normalization only benefits the bourgeoisie. Workers will be hardest affected, while capitalists profit from our deaths and disabilities.
"The statement that SARS-CoV-2 is "airborne AIDS" may be an oversimplification, but it draws attention to emerging evidence showing that the virus induces a distinct form of acquired immunodeficiency (AID). The phrase emphasizes key similarities and is grounded in evidence of shared outcomes, including immune dysfunction through T cell depletion and exhaustion, persistent systemic damage, and neurocognitive decline.
SARS-CoV-2 and HIV-1, though distinct, share parallels in their biochemical traits and mechanisms, long-term impacts and societal responses. Both can establish persistent infections in tissue reservoirs, immune dysfunction, vulnerability to other infections including opportunistic, systemic damage including hallmarks of accelerated biological aging, and premature neurocognitive disorders. HIV integrates into DNA, whereas SARS-CoV-2 and its parts persist in organs like the blood vessels, brain, heart, tonsils, and lungs." “COVID-19 is “Airborne AIDS”: provocative oversimplification, emerging science, or something in between?”
Masks are community care❤️🔥😷 free masks: maskbloc.org
• Remember: covid is not over, 50% of infections are asymptomatic, minimum 10% of infections end up in long COVID, re-infections wreck us, COVID spreads and moves like cigarette smoke, think of the people around you and you as people who are all day smoking, it becomes more visual to understand how COVID moves.
• There is no way to “train” the immune system because it is not a muscle. there is a common misconception that exposure to harmful germs strengthens the immune system. viral diseases like COVID, flu, measles weaken the immune system, leaving the possibility of lasting damage. The reality is that you don't build your immunity with repeated infections, vaccines strengthen the immune system by teaching it to recognize pathogens without all the risks. Focusing on infection prevention is key.
• Rapid antigen tests give many false negatives.
• Solving the pandemic was never in the cards for the capitalist world.
• Instead, the explicit goal of the ruling class has been to make the pandemic simply disappear from public perception. Any reminder of the existence of a highly-transmissible, highly-dangerous, mass-disabling disease could trigger panic, or worse: organized, militant labor action. Averting this crisis required a careful campaign of culture-crafting; the people themselves needed to become convinced that there was no reason to fight. Consent for protracted mass infection needed to be manufactured.
“The cold truth of the matter is that the motive behind COVID minimization is greed and social control. (…) Solving the pandemic was never in the cards for the capitalist world. Instead, the explicit goal of the ruling class has been to make the pandemic simply disappear from public perception.” Let Them Eat Plague! http://clarion.unity-struggle-unity.org/
#MaskUp #WearAMask #CovidRealist #CovidIsAirbone #LongCovid #YallMasking #DisabledLiberation #DisabilityJustice
.
Q for folks who read a lot of #LongCovid studies-- do you know of any meta-analysis about the very diverse rates of long covid that are reported (1-40%)? Specifically I would love to see an analysis of what factors in the design of a long covid study lead to lower or higher reported rates
OMG OMG OMG!!
I have been following Dianna Cowern (Physics Girl) since before she got long COVID three years ago. She has made her first new video in three years. She is still recovering, but this is awesome!
https://www.youtube.com/watch?v=B3m3AMRlYfc
#DiannaCowern #PhysicsGirl #LongCOVID #MFS/CFS #YouTube #Physics #Astronomy
Succubard's Library
chronic illnes, long covid/mecfs, being an artist, frustrated and venty
each day is another day that passes me by is another that I don't get to truly live...
my bones and muscles can handle and do so much, but using any more than a sliver of that ability borrows my ability to function for the next few days or even weeks, and all the while, I can give nearly nothing back to the people that help me survive 
Edited 11d ago
When the infection is over – but the illness is just beginning. 🦠
Post-infectious diseases such as #LongCovid and #MECFS affect hundreds of thousands.
How Helmholtz research is uncovering causes and creating perspectives 👇
Full article: https://www.helmholtz.de/en/newsroom/article/when-the-infection-is-over-and-the-disease-is-just-beginning/
Hoewel ik altijd graag kamerdebatten volg is het nu te veel en dat is jammer. Mijn wereldje wordt steeds kleiner en eigenlijk haat ik dat, net zo als ik merk dat ik niet meer kan schrijven zoals ik deed. Dat is de harde waarheid van #longcovid
RE: https://disabled.social/@ahimsa_pdx/115992177959522535
Update from #MEAction
"Why We Launched an ICE campaign"
https://www.meaction.net/post/why-we-launched-an-ice-campaign
"Congress cut $1 trillion dollars from Medicaid over 10 years, gutting healthcare access and home and community based services that tens of thousands of people in our community rely on to survive. Meanwhile, in the same bill that stripped money from Medicaid, Congress allocated $85 billion to ICE."
#USPol #MEcfs #LongCovid #ChronicIllness #Disability #ICEout #AbolishICE #Resist
This 🚨👇 was shared on XTwitter by Dr. @elisaperego78.bsky.social@bsky.brid.gy earlier today (and Dr. Perego has been instrumental in ensuring patients are heard and are centered in care WRT LC).#LongCovid #LongCovidAdvocacy #Twitter #LCTwitter
RE: https://bsky.app/profile/did:plc:43rudsv62fuwsmnk7oppgtdy/post/3mfkzh6slp22f
Wrote about my illness. https://72.peteashton.com/the-state-of-pete/
This took me a couple of weeks to write and is partly in lieu of me being able to stay in touch with a number of friends and family. Chronic fatigue is a fucking arse, but I'm slowly learning how to manage it.
And if you think I’m obsessed with #Covid it’s because I could see back in 2020 that #LongCovid was going to be a serious problem if covid wasn’t suppressed or eliminated, so I’m still bewildered by everything that has happened since then. If I knew, then the healthcare sector knew, politicians knew, influencers knew, they just pretended otherwise
And right now many people are sick again, and just accepting of it?
🧵 #Kefir has been well studied as effective for Sars since the first Sars outbreak, & again for #COVID, proven to help T-cell regulation & a healthy gut biome, as well as brain function in #Alzheimers, etc.
KEFIR
https://nature.com/articles/s41598-021-90749-8#:~:text=It%20is%20traditionally%20characterized%20by,therapeutic%20alternative%20for%20Alzheimer's%20disease.
(Kefir & Alzheimers - #Neuropathy
https://ncbi.nlm.nih.gov/pmc/articles/PMC7227397/ For COVID
https://ncbi.nlm.nih.gov/pmc/articles/PMC7378002/ For COVID
https://pubmed.ncbi.nlm.nih.gov/33186795/
For COVID
https://thejournalofheadacheandpain.biomedcentral.com/articles/10.1186/s10194-020-01170-x
For Neuropathy
Edited 1y ago
Die einzige bekannte Prävention für LongCOVID ist der Schutz vor einer Ansteckung. Die bisher einzige überprüfte Therapie? Ebenfalls Schutz vor Ansteckung. LongCOVID entsteht durch COVID – mit einer Wahrscheinlichkeit von 10% pro Infektion. Jede weitere Infektion erhöht das persönliche Risiko und den Schweregrad der Erkrankung.
#LongCOVID #COVID19 #Prävention #Gesundheit #Infektionsschutz #PublicHealth #Pandemie #Corona #Aufarbeitung #SRF
From #MEAction -
"ICE Makes Me Sick: Fund Healthcare, Not Violence"
https://www.meaction.net/post/ice-makes-me-sick-fund-healthcare-not-violence
"No more money to ICE. Restore funding for healthcare and independent living support for disabled people."
You can help!
Email your Congress rep using this tool:
https://actionnetwork.org/letters/ice-makes-me-sick/
Read the Take Action Guide for more actions:
co-sponsored by Long Covid Justice
#USPol #ICEout #AbolishICE #MEcfs #LongCovid #ChronicIllness #Disability #Resist
Edited 42d ago
long covid, mecfs, disability
Don't breathe it in.
Learn the basics in one minute: https://johnsnowproject.org/long-covid
Stuk in het lokale krantje over long covid. #longcovid #covid
