Tootfinder

Living With #LongCovid: 'You Feel Like You Have Been Poisoned'
https://www.newsweek.com/living-long-covid-feel-poisoned-1875191

Living With Long COVID: 'You Feel Like You Have Been Poisoned'
"I became unrecognizable to those around me," Bella MacDonald, 20, told Newsweek.

#LongCovid
Three papers of interest regarding Long Covid:
1.
Liew, F., Efstathiou, C., Fontanella, S. et al.
Large-scale phenotyping of patients with long COVID post-hospitalization reveals mechanistic subtypes of disease.
Nat Immunol (2024).

Mona is toch weer een partijtje aan het liegen in het #vaccinatiedebat ... schuift even alle jongeren met #longCovid onder het tapijt.

Ich würde wirklich sehr gerne irgendwelche positiven Nachricht aus den verschiedenen #LongCOVID / #PostCOVID-Ambulanzen hören. Dass meine Frau nach über einem Jahr Warten noch immer keinen Termin im Zentrum des Uniklinikums

I have #LongCOVID, so my body is fucked. It feels like it is slowly dying on me. But the deepest damage the ongoing pandemic has done to me personally, is that it has made me lose my last shred of hope in humanity. The decrease in solidarity and the increase in ableism that i experienced, either because it was directed towards myself or because i observed it all around, in society at large, has sent me into complete despair.
The social contract has been broken, when the weakest no longer get protected. Which opens up the path for fascism to spread. And neither the radical leftists nor the feminists, who usually write solidarity, antifascism, yadda yadda onto their flags, seem to make the connection.
Never before have i felt so lonely, so utterly desperate. There is not one chance in hell that we can tackle the even bigger issues, like the climate crisis, inequality or migration, when we have failed to mobilize in order to combat the organized abandonment and slow murder that has been unleashed during this pandemic against our chronically ill and disabled siblings.
The radical leftist project has failed.
Capitalism and fascism have won.
But way too few even notice this.
#AntiAbleism #COVID19

#LongCovid

Long Covid: Versorgung am Wendepunkt?
Viele Long-Covid-Betroffene fühlten sich in den vergangenen Jahren alleingelassen. Das soll sich ändern: Gesundheitsminister Karl Lauterbach verkündete jüngst einen "Wendepunkt" in der Versorgung. Kann der Gesundheitsminister halten, was er versprochen hat?

One fun thing about long covid is how when I walk to the next room in my apartment my heart rate spikes to 110 bpm
#LongCovid #covid

fascinating re #LongCovid - study indicates "Cardiovascular, neuropsychiatric, and dermatologic may be distinct syndromes. "
Research: A statewide population-based approach to examining Long #COVID symptom prevalence and predictors in Michigan

A new writer-owned, reader-funded science magazine has been founded - the Sequencer Mag.
I really hope it will thrive. I've been interviewed by one of their founders, Shi En Kim for her recent Nature piece on #longCovid and she has been the most caring and thoughtful person to interact with

Sequencer
A popular science magazine for the 21st century. Writer-owned, forever.

excellent overview of Long Covid
From Ziyad Al-Aly & Eric Topol. Covers a ton of key points in a short article.
"The world must rise to the occasion and address these challenges; the health and well-being of current and future generations depend on this."
#LongCovid #medicine

Schicksalsschlag #LongCovid – Von Stillstand und Sehnsucht.
«Wir lassen niemanden hängen», war das Versprechen des Bundesrats während der Pandemie.
Ausgerechnet die Menschen, die das Virus mit aller Härte getroffen hat, fühlen sich nun aber im Stich gelassen: Menschen, die bis heute an der postviralen Krankheit

Reporter - Schicksalsschlag Long Covid – Von Stillstand und Sehnsucht - Play SRF
Im Glaskäfig leben oder unter Sand begraben sein: So beschreiben Long Covid-Kranke ihr Dasein. Manche sprechen von Suizid. Mehr Unterstützung, das ist ihr Wunsch. «Wir lassen niemanden hängen», war das Versprechen des Bundesrats während der Pandemie. Ausgerechnet die Menschen, die das Virus mit aller Härte getroffen hat, fühlen sich nun aber im Stich gelassen: Menschen, die bis heute an der postviralen Krankheit Long Covid leiden, die in schweren Fällen in die neuroimmunologische Kr…

Habe erst jetzt geschafft, die Oktober-Folge des #CoronaVirusUpdate des @… nachzuhören.
Zum Thema #LongCovid-Risiko zitiert Immunologin Christine Falk darin eine St…

“Most people will get delayed onset muscle soreness after a tough workout, but post-exertional malaise is a different animal altogether.” #LongCovid #coronavirus

I don't have the time to note all the ways this perspective is awful. Suffice to say I hope this guy leaves the marriage soon. 😷
#covid #LongCovid

„Was, wenn es möglich wäre, die Gereiztheit in ein ruhiges, maßvolles öffentliches Gespräch aufzulösen?“
Ist es nicht so: Die Lage war komplex. Fehler wurden gemacht. Es ist vorbei. Fast.
Wir müssen irgendwie weitermachen. Mit oder ohne #LongCovid mit oder ohne #Depression.
Miteinander. Solidarisch.
#Corona #Aufarbeitung
https://www.taz.de/!5999073

Schicksalsschlag #LongCovid – Von Stillstand und Sehnsucht.
«Wir lassen niemanden hängen», war das Versprechen des Bundesrats während der Pandemie.
Ausgerechnet die Menschen, die das Virus mit aller Härte getroffen hat, fühlen sich nun aber im Stich gelassen: Menschen, die bis heute an der postviralen Krankheit

Reporter - Schicksalsschlag Long Covid – Von Stillstand und Sehnsucht - Play SRF
Im Glaskäfig leben oder unter Sand begraben sein: So beschreiben Long Covid-Kranke ihr Dasein. Manche sprechen von Suizid. Mehr Unterstützung, das ist ihr Wunsch. «Wir lassen niemanden hängen», war das Versprechen des Bundesrats während der Pandemie. Ausgerechnet die Menschen, die das Virus mit aller Härte getroffen hat, fühlen sich nun aber im Stich gelassen: Menschen, die bis heute an der postviralen Krankheit Long Covid leiden, die in schweren Fällen in die neuroimmunologische Kr…

Is it wrong to suspect #LongCovid? #GrantImahara also passed suddenly in a similar fashion.
CBR - Comic Book Resources: Akira Toriyama's Colleagues Shed Light on the Late Dragon Ball Creator's Condition

US Long Covid stats
Estimates from the US Census Bureau's "Household Pulse Survey", in the sampling phase 5 March to 1 April 2024:
About 7% of all US adults were currently living with some form of Long Covid. That's about 1 person in every 14.
About a quarter of those, 1.7% of US adults, had "significant" activity limitations from LC. So that's around 1 person in every 60.
40 to 49 is the peak age group; more women than men.
#LongCovid #USA #stats

"It took me a while to recognize that I am now a disabled academic,” says Kerstin Sailer, a sociology researcher at University College London. (...)
But Sailer and others are a testament to the fact that long COVID need not signal a career dead end. With the right support, affected academics can still thrive.
This is from an article in Nature Careers on the impact of #longCovid…

Four years on: the career costs for scientists battling long COVID
Many with the condition have found ways around their health problems, but they say more employer support is needed.

The pain has gotten so bad, that i can't seem to sleep without pain relief medicine. Both shoulders hurt so much that i can't turn onto them and i cannot sleep on my back. This is so frustrating. I really do not want to get addicted to pain medication, or anything else really. Fought too damn hard to kick my heroin habit and stay clean and sober for all these years. And now fucking #LongCOVID pushes back me into addiction. I bloody hate it.

All day, I've been meaning to do a #FollowFriday, but you know what? It's #LongCovidAwarenessDay, and -- since the ongoing pandemic that is in fact a mass disabling event is causing damage with every infection, with around a 1 in 10 chance of

Thanks, #Trump!
Millions of people have #LongCovid, including children and pregnant people, studies show | CNN
ht…

ME/CFS & Long Covid free online conference in May
"UniteToFight 2024"
"The biggest community-driven ME/CFS and Long COVID conference ever"
Wed 15 & Thur 16 May 2024
Seeing some cool people on the speaker list for this. Might tune in.
#MECFS #LongCovid

Alvar Aalto's Paimio sanatorium would be the perfect place for a #LongCovid recovery clinic - teaching patients pacing and energy management, allowing patients extended periods of rest in the sunbeds on the sun terrace, snow and cold water at hand for those trying to calm their vagus nerve, peaceful nature for restoration.
I so wish this was reality. Instead, of course, a spa and hot…

good pointy article about long covid minimisation/denial
... in particular, that shoddy unreviewed paper and its press release timed deliberately for Long Covid Awareness Day.
"Articles like these aren’t simply insulting or offensive; they have material impacts. ...
"There is a deliberate, highly successful effort to misinform the public that COVID cannot harm them."
#LongCovid #denial #LongCovidAwarenessDay

Tomorrow I'll set off on my first conference travel since 2019 to Switzerland.
In the 2010s I went to 3-4 conferences a year (and greatly enjoyed it) then the pandemic and #LongCovid put things to a grinding halt.
Hoping my energy management and pacing regime will work but also excited to see old conference buddies again and learn about new research.
Also excited about th…

another lovely post from Havi at the Fluent Self
"Each day I try to practice moving even more slowly, even more deliberately. Making good decisions, receiving useful intel, adapting as needed.
"What day is it? It’s Moving Deliberately & Making Good Decisions Day."
#LongCovid

Comical snark
Not entirely fair, because there _are_ some doctors looking into Long Covid properly...
"Physicians can help you with post Covid symptoms about as much as toddlers with one of those pretend doctor kits. Actually, the toddler probably has better advice because they might actually say something helpful like “take a nap” instead of the “deconditioning” BS from the “trained” physicians (who have nearly zero training in post-viral pathologies)."
#LongCovid

Long Covid terminology
A useful thing I don't remember seeing before: that paper uses the expression "6-month Long Covid".
Different people have used different timespans to define LC for their purposes (e.g. 4 weeks, 12 weeks), so I'm liking that neat shorthand to clarify what we're talking about.
Still some ambiguity in what you count as recovered, mind you. Most of my POTS-alikey stuff wore off after around 7 or 8 months, but I'm a long way from previous energy/stamina.
#LongCovid

Day 1 of the Duality@50 #SocialNetworkAnalysis conference is coming to an end. I've learnt so much, listened to brilliant talks, received great comments on my own work and had many inspiring conversations in the beautiful atmosphere of Lago Maggiore.
I've also spent several hours in bed in between for my

Long Covid new research - mitochondria, bone marrow
I _think_ what this research says is that in LC, mitochondria in some blood cells are using up a bit more oxygen than normal, so there isn't enough oxygen for the muscles.
And they suspect the root cause might be virus in stem cells (in bone marrow), affecting how the blood cells are made.
HSC = Human Stem Cells
PBMC = Peripheral Blood Mononuclear Cells, mostly "white" cells.
#LongCovid #mitochondria #BoneMarrow

covid research - viral fragments
This is an interesting paper. Looks at what happens to the bits of covid virus after your immune system's successfully chopped it up.
Unlike with an ordinary cold virus, the left-over bits "look like" part of your immune system, & carry on provoking immune over-reactions.
"Viral afterlife: SARS-CoV-2 as a reservoir of immunomimetic peptides that reassemble into proinflammatory supramolecular complexes"
#covid #LongCovid #xenoAMP

Long Covid new research - complement system
The "complement system" is part of the immune system - its job includes destroying unwanted stuff.
"Our data suggest that active Long Covid is accompanied by a blood protein signature marked by increased complement activation & thromboinflammation, including activated platelets & markers of red blood cell lysis.
... a basis for new diagnostic solutions... support for clinical research on complement modulators"
#LongCovid

Long Covid - nice article
... with comments from someone experiencing it, & from doctors.
“Efforts to treat COVID more like the flu fail to recognize that COVID is not the flu, COVID is COVID — a virus that, per the CDC’s own resources, is more contagious than the flu, can cause more severe illness than the flu, causes more post-viral illness than the flu, and is infectious to others longer than the flu”
#covid #LongCovid

Our #COVIDcautious lifestyle has increasingly pushed us into social isolation. Which has resulted in a siege mentality of sorts, where it's the two of us against the rest of the world. Family and friends were lost to us due to the push towards the normalization of the ongoing pandemic by a neoliberal order under late stage capitalism. It individualized responsibility, which not only forced us deeper under siege, but also made us increasingly lonely.
We tried to reach out to other people in similar situations, but no one seemed interested to engage with us in a committed way. #MutualAid, #GermPods, #CommunalCare, #CirclesOfTrust, it all sounded good in theory. But they were not happening for us.
What can we do?
We would be really grateful for some leads.
#AntiAbleism #LongCOVID #COVID19 #CareWork

Long Covid stats for children in England & Scotland
Cat in the Hat did some analysis of the ONS stats for England & Scotland, and made this chart. Number of kids with Long Covid still gradually increasing :-(
#children #covid #LongCovid #LongCovidKids #England #Scotland

ONS Long Covid stats
England & Scotland, Nov 2023 to March 2024
"Long COVID symptoms adversely affected the day-to-day activities of 1.5 million people... with 381,000... reporting that their ability to undertake their day-to-day activities had been "limited a lot"."
If population of Eng Scot is about 64 million, then that works out like:
~1 in 43 affected
~1 in 170 "limited a lot"
(I'm guessing the 64m, based on 2022 stats)
#LongCovid #England #Scotland #ONS #stats

Long Covid "brain fog" research
"It’s the first time anyone’s shown that long COVID patients can have leaky blood brain barriers, says study coauthor Matthew Campbell, a geneticist at Trinity College Dublin in Ireland. That barrier, tightly knit cells lining blood vessels, typically keeps riffraff out of the brain, like bouncers guarding a nightclub."
With brain pics!
#LongCovid #BrainFog #MRI #research

Sunak-related snark from the Vertlartnic
“Why Is Everyone Sick After We Forced Everyone To Get Sick?” Says Man Who Runs Whole Country
#Sunak #UK #Vertlartnic #LongCovid #EOTHO
Edit: oops, spelt Vertlartnic wrong.