Für #LongCovid gibt es weiterhin keine Behandlung, die Erkrankung ist nicht heilbar und ihr und eure Kinder könnt sie auch in 2025 bekommen.
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#longcovid
101 posts86 participants1 post today
Beth Mazur and her group #MEAction was heavily involved in standing up the Columbia U center for research into myalgic encephalomyelitis/chronic fatigue syndrome, which also worked on #LongCovid. Dictator Musk shutting it down is desecration of her grave as far as I'm concerned.
Musk also held his Wisconsin rally at the same hotel where Beth and I had a family event to celebrate our marriage in 2019. So fuck him again for that.
Salon.com · Trump admin's attacks on chronic disease research abandons long COVID and ME/CFS patients... AgainReorganization of federal agencies and budget cuts are terminating some of the few existing programs
Good to see this article with some interesting people from the field quoted (e.g. Lipkin, Pollack, Sieverts, Seltzer):
"Trump admin's attacks on chronic disease research abandons long COVID and ME/CFS patients... Again"
https://www.salon.com/2025/04/01/admins-on-chronic-disease-research-abandons-long-and-mecfs-patients-again/
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME Hashtags:
@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
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Continued thread
Even zeuren: elke keer als ik iets op m’n blog teruglees, en zeker op m’n telefoon, erger ik me aan de woordafbrekingen. Die zijn te fixen, alleen is dat door mijn ziekte te complex voor mijn hoofd.
Als senior softwareontwikkelaar is dat EEN IETSIEPIETSIE CONFRONTEREND.
(Ik hoef geen tips want ik weet hoe het moet. Hier zeiken is gewoon beter voor m’n relatie dan servies door de kamer gooien.) #LongCovid #postCovidHetBordspel
Day 02 of #30DaysOfBiking and I'm still riding.
I rode to the train station and then to work. Normally my partner drives me to the station as it's too far to walk. I was hesitant about cycling. My heart and dizziness are back to unsettled in the morning which makes it extremely difficult to get going. I let it pass and by the time I left the house I felt safe to get out.
This evening I am tired (fatigued? I can't always tell the two apart) but I am also okay. We'll see if it holds.
#FYI #US #USA #disease #diseases #AMA #AmericanMedicalAssociation #AndreaGarcia #ToddUnger #typhus #murinetyphus #measles #vaccine #covid19 #covid #longcovid #sarscov2 #influenza #flu
"How do you get typhus? Can you die from typhus? What age do you get the measles vaccine? Are people still getting COVID? When does flu season end 2025?"
I couldn’t believe this was my number for the phlebotomist!! I really can’t escape Covid-19 no matter what I do! 
Five years into the pandemic access to treatment for Long Covid is limited as interest in Covid decreases.
#COVID #LongCovid https://www.theatlantic.com/health/archive/2025/04/long-covid-clinics-closing/682251/?utm_campaign=the-atlantic&utm_content=true-anthem&utm_medium=social&utm_source=twitter
The Atlantic · What It’s Like to Get Long COVID Now
Ever since I’ve contracted long COVID, I’ve started to resent driving long distances, because they tire me out so much more than before. And yet every Wednesday I have to drive to the office. 115-120km. And for some reason today I’m extra exhausted. I just want to sleep. But I can’t. I have to work. Wish me luck. #LongCovid #CovidIsNotOver
Replied in thread
Ähnliches journalistisches Gaslighting ist ja auch bei Covid und #Longcovid zu beobachten, sowie bei der #Klimakatastrophe. Es folgt einem bestimmten Muster, nämlich einem rechtsreaktionären Mindset, wobei sich offenbart, wie sehr die Medien damit bereits durchsetzt sind.
"#LongCovid bei Kindern: Wenn das Bett zum Gefängnis wird"
https://www.rbb24.de/panorama/beitrag/2025/04/long-covid-berlin-patienten-eltern-erkrankte-kinder.html
www.rbb24.deWenn das Bett zum Gefängnis wirdBerliner Long-Covid-Patienten fühlen sich noch immer schlecht versorgt. Besonders Eltern von erkrankten Kindern finden keine spezialisierten Ärzte. Ein Verein fordert eine Fachpraxis. Auf Unterstützung dafür hofft er bislang vergeblich. Von Anja Meyer
Replied in thread
@DenisCOVIDinfoguy @auscovid19 a depressing quotation from that long covid article: "The COVID-19 pandemic is over, and HHS will no longer waste billions of taxpayer dollars responding to a nonexistent pandemic that Americans moved on from years ago," HHS Director of Communications Andrew Nixon said in a statement to NBC last week. #Trump and his team are showing who they are. #CovidsNotOver #yallMasking #LongCovid
"· Children and adolescents face a significantly increased risk of Long COVID following reinfections with SARS-CoV-2
· Another study in Behavioral Sciences showed #LongCOVID also affects language proficiency in children.
· A small observational NIH study is recruiting to study if people with Long COVID have persistent SARS-C0V-2 remnants in their bodies."
https://thesicktimes.org/2025/04/01/research-updates-april-1/
The Sick Times - Chronicling the Long Covid crisis · Research updates, April 1 - The Sick TimesChildren and adolescents face a significantly increased risk of Long COVID following reinfections with SARS-CoV-2, according to a new National Institutes of Health (NIH) RECOVER preprint shared on MedRxiv. The study assessed 465,000 children and adolescents under 21 years old using electronic healthcare records from the NIH RECOVER study, focusing on those infected in 2022
(UK)
"I spoke with my friend's husband who's a PIP assessor, for advice about my upcoming PIP review, and was given some useful insights about how the process works from the inside, including specifics about ME & #longCovid ..."
https://threadreaderapp.com/thread/1907029145986421125.html
#MEcfs #chronicillness #Spoonies @mecfs @longcovid @chronicillness
@spoonies
@disability
@fibromyalgia
#Fibromyalgia #Fibro #FMS #FM #PosturalOrthostaticTachycardiaSyndrome #POTS @pots
"The History of ME deserves a late-night spotlight. That’s why we started the #JohnVsJonVsME campaign"
This campaign was inspired by George Monbiot who called the history of mistreatment of people with Myalgic Encephalomyelitis (ME) the “greatest medical scandal of the 21st century”
Note: Most patients in the USA get a diagnosis of ME/CFS, not ME. CDC info here:
Six photographs about the drudge of ME/CFS:
https://andrewgiffordphotography.substack.com/p/six-photographs-about-the-drudge
Sorry it's been a while since my last batch, I didn't have much capacity over the winter. Please do share!
Andrew’s Substack · Six photographs about the drudge of ME/CFS
Has anyone ever experienced a delayed crash, is this possible?
Over a week ago i had a long (but fun) day. In the days that followed i had some muscular and skeletal issues. But it was bearable. Thought i got lucky.
Only yesterday a "proper" crash started, with a headache, swollen lymph nodes, a grippal feeling and air hunger.
"Mehr Unterstützung gefordert: #LongCovid bei Kindern und Jugendlichen" -
RBB berichtet über die desolate Situation in #Berlin, die zu Protesten betroffener Familien geführt hat:
https://www.rbb-online.de/abendschau/videos/20250331_1930/kinder-und-jugendliche-mehr-unterstuetzung-bei-long-covid-gefordert.html
www.rbb-online.deLong Covid bei Kindern und JugendlichenIn Berlin leiden noch viele Kinder und Jugendliche an Long Covid. Vereine wie der nichtgenesen.kids kritisieren weiterhin die schlechte medizinische Versorgung für diese Kinder und auch die gesamte Begleitung für Familien. Sie fordern von der KVB und dem Berliner Senat mehr Hilfe, vor allem durch den Aufbau einer Long Covid-Ambulanz. So wie sie andere Bundesländer schon eingerichtet haben. Wir haben eine betroffene Familie besucht und sprechen im Studio mit Bukhard Ruppert, Vorstandsvorsitzender der Kassenärztlichen Vereinigung Berlin. Beitrag von Anja Meyer
Don't play a great many computer games these days, but having learned that I can use a cloud-based gaming service that avoids the need to buy a more modern computer I've been giving Atomfall a go.
Great fun on the whole, although today I found my long covid symptoms were really getting in the way. I had to get an Xbox controller to use the games, not a joystick in familiar with, and there was too much confusion in trying to remember which of the many, many buttons did what. Yesterday went far more smoothly, so I know it's not purely down to me being distinctly sub-mediocre at these games. Packed up for the day after I lost count of how many times I'd been trounced by outlaws.
I do need to read the instructions again, though, as I'm discovering functions I'd missed. For instance, it turns out that my character can throw knives and similar weapons. I discovered this when facing an outlaw, as I pressed something and watched as Our Hero tossed the knife—the knife he was trying to fend off an attacker with—into some dense shrubbery, thus neatly disarming himself.
Today I learned about #30DaysOfBiking
The idea is simple: ride a bike every day in April.
Due to #LongCovid, I've not ridden my bike in weeks (months?). Of all the things that have changed, my bicycle is the one thing I miss with a burning sadness still.
Today, I had to go to the pharmacy and my partner is at work. So I rode my bike. It was short but it was so lovely and delightful and gosh how I miss pootling about on a bike.
I doubt I'll manage 30 days of cycling, but I'll try little bits.
