Discover and read the best of Twitter Threads about #longCOVID

Most recents (24)

1/x Leben mit Covid - ein🧵
Nachdem es gerade en vougue ist, ungefragt mitzuteilen, dass man jetzt wieder “lebt” und Risiken eingeht und dabei unterschwellig mitschwingen lässt, dass dies doch die einzig vernünftige Art ist, mit der Pandemie umzugehen, dachte ich, ich mache da
2/x jetzt auch einmal mit.
Mein Take: Die Pandemie ist weder vorbei noch hat man belastbare Lösungen für einen dauerhaften Umgang mit dem Virus gefunden. Der Ansatz, nur durch Impfungen aus dieser Gesundheitskrise kommen zu können, ist krachend gescheitert und B5 freut sich
3/x schon auf die nächste Infektionsrunde.
Ich gehöre (derzeit) nicht zum Kreis der “Vulnerablen”, wie es so kategorisierend und stigmatisierend in dieser Pandemie heißt. Aber ich pflege zwei vulnerable Personen (Mutter und Großmutter) und habe zwei Kinder im Grundschulalter.
Read 15 tweets
ACP Journals, 24-5-22

Studie die wil bewijzen dat #longcovid patiënten niets fysieks mankeert.
- studie erg klein
- gebaseerd op standaardtests, daar kwam uiteraard niets uit. Verkeerde conclusie: "geen afwijkingen" (zie ook ME/cvs)… Þ
🧵David Lee maakt korte metten met bovenstaande studie.
slecht onderzoek studie longcovid
Read 5 tweets
MedXpress, 25-5-22

Studie Nature:
Vaccinatie beschermt plm 15% tegen #longcovid.
In het half jaar na de infectie, ook verhoogde kans op sterfte en complicaties.… Þ
Nature, 25-5-22
Vaccination against SARS-CoV-2 lowers the risk of long COVID after infection by only about 15%, according to a study of more than 13 million people… Þ
vaccinatie vermindert kans op longcovid met 15%
Read 4 tweets
We have genuinely tried "living with covid" in highly vaxed pop & is proving unsustainable for health system & economy

Time to try "living w less covid?"

NOTHING in "vax only" strategy game changer in near term. Boosters marginal at pop level, better (mucosal) vax uncertain 🧵
Our strategy in face of unsustainable situation seems to be:
1. Doubling down on what's not working (vax, necessary but not sufficient)
2. Hoping better versions of (1) come soon &
3. Changing testing / reporting & a PR campaign to convince everyone that things are actually fine
Of course, things substantially better than pre vaccines. Refrigerated trucks, mass graves & lockdowns are a thing of the past
Read 9 tweets
Some long weekend reflection as we work to build effective research infrastructure around #LongCovid and other infection-associated chronic illnesses like #MECFS and #Lyme. For those who don't know, I was born and raised in Perth, Western Australia, so here's a "local" story. 1/
Apologies if this is a familiar story to many, but I think there is much wisdom to be gained. For the longest time, gastric ulcers were thought to be related to excess acid in the stomach and worsened by stress/lifestyle. People were treated for peptic ulcers with antacids and 2/
the recommendation to reduce stress in their lives. This went on for decades until a Perth-based physician/scientist, Dr Barry Marshall, made an accidental discovery that led him to believe that gastric ulcers may not be stress-related at all: in fact they might be a result of 3/
Read 13 tweets
This morning I left home to get shopping as couldn’t get a delivery slot.
Wore a FFP2 mask, body protection and gloves.
Supermarket was scary.
Was waiting to use the expressway and a woman asked me “why are you wearing all of that”

Thread 👇👇
I said “because we’re in a pandemic and a second pandemic is on the way”
She said “we’re not in a pandemic anymore and what do you mean second pandemic”
I said “covid isn’t over and we now have a #MonkeyPox pandemic emerging”
She said “we’ve all been vaccinated and MonkeyPox
is no big deal”
I said “vaccination doesn’t prevent #LongCovid or even death for that matter and MonkeyPox has a 10% mortality rate”
She said “what give you that assumption”
I said “it’s no assumption. It’s really happening”
She said “well I’ve not worn a mask in months”
Read 4 tweets
Our paper measuring #LongCovid stigma using a new scale: preprint (not-peer reviewed yet).…
In our UK-based sample, 95% experienced at least one type of stigma at least sometimes and 76% often/always.
@PantelichMarija @NidaZiauddeen @Know_HG @ClaireHastie1 Image
13 questions were included in the LCSS capturing 3 domains:
Enacted (overt experiences of discrimination), Internalised (internalising negative associations with Long Covid and accepting them as self-applicable),
Anticipated (expectation of bias/poor treatment by others) stigma.
This is from a follow up survey of a online survey we did at the end of 2020:…
We have over-representation of females, white ethnicity, and people with higher educational qualifications. All non-hospitalised in the first 2 weeks of the illness.
Read 9 tweets
We have a virus ripping through this country at an infectious rate bordering on measles that is giving 1 in 5 people a new health condition - and we have zero mitigation efforts in place.

It sounds so crazy to say that out loud.
I'm not pro "lock-downs", but it's incredibly eerie that China has made the decision that protecting their population from infection **far outweighs** any short-term economic hit from that decision.

It makes you wonder what they are seeing in their #LongCovid data.
In addition, how many premature heart attacks, strokes, and early on-set dementia are we going to see in 5-10-20 years from this? It's going to be absolutely devastating. #LongCovid
Read 3 tweets
I helped work on this paper on #LongCovid clusters with N3C. It's based on EHR data, which is very biased in Long Covid for multiple reasons, but it's a start. I'd like to see more research factoring in common diagnoses of ME/CFS & dysautonomia.

1/… Image
EHR data is biased towards documented cases, which means:

-more severe/hospitalized cases
-those with access to healthcare
-more respiratory-focused findings (the neurological findings are conspicuously sparse)

Common symptoms/conditions that clinicians are unfamiliar with - like ME/CFS, post-exertional malaise, dysautonomia - don’t get documented.

Very, very few LC symptoms are documented - only a few ever get written down.

Read 6 tweets
If Covid does deplete connective tissue, then #longhaulers should start looking a lot like patients with the connective tissue disorder Ehlers-Danlos Syndrome (EDS). One of the problems of EDS can be issues in the brain and spine that sometimes require neurosurgery. A thread:
In the book "Disjointed" -- a recent textbook comprised of essays regarding Ehlers-Danlos Syndrome -- Brown University neurosurgeon Petra Klinge has a chapter entitled "Neurosurgical Considerations."
In it, she reviews the possible neurosurgical problems of EDS patients: Craniocervical Instability and Atlantoaxial Instability, Chiari Malformation, Tethered Cord Syndrome, Spontaneous Intercranial Hypotension, and IIH.
Read 14 tweets
Jetzt mal Butter bei die Fische: #COVID19 ist gekommen, um zu bleiben.
Wie gehen wir damit um? Was bietet Orientierung? Auf was darf man hoffen?
Hier nur ein paar unsortierte Gedanken. Wie immer kann man das anders sehen, sollte aber gegenteilige Ansichten respektieren.🧵⬇️1/n
👉Im real life scheint SARS-CoV-2 für viele Menschen keine Rolle mehr zu spielen,wenn man sich mal den Prozentsatz der Maskenträger oder die vollen Restaurants anschaut.
👉Auf Twitter schaut das anders aus: Dort stehen sich vermeintlich oft zwei unversöhnliche Lager gegenüber:2/n
„Infektionsverweigerer“ versus „Team Normalität“ (gerne auch andere Begriffe dafür einsetzen; diese sind im Übrigen nicht wertend gemeint).
👉MMn gibt es aber eine breite Mehrheit an Menschen,die für sich selbst nach einem vernünftigen Umgang sucht, der sowohl Lebensqualität 3/n
Read 22 tweets
Um besser zu verstehen was es zu 'vermeiden' gilt, hier ein Sammelthread zum Thema #LongCovid und #postcovid ! Solltet ihr weitere Links zu Studien finden, dürft ihr sie gerne hierunter teilen!♥

Lasst und gemeinsam für Aufklärung stark machen!♥


#Coronavirus #SARSCoV2
lt. @rki_de
"Die bereits Ende 2020 veröffentlichte Leitlinienempfehlung des britischen National Institute for Health and Care Excellence (NICE) definiert „Long-COVID“ als gesundheitliche Beschwerden, die jenseits der akuten Krankheitsphase einer SARS-CoV-2-Infektion von
4 Wochen fortbestehen oder auch neu auftreten. Als Post-COVID-Syndrom werden Beschwerden bezeichnet, die noch mehr als 12 Wochen nach Beginn der SARS-CoV-2-Infektion vorhanden sind und nicht anderweitig erklärt werden können. Somit umfasst „Long-COVID“ sowohl im
Read 17 tweets
1/🧵 An exacerbating factor in #LongCOVID is the “Quality of Life (QOL) Gap”🧵👇

…when a person’s expectations about QOL are at odds w their reality.
“Covid was over & Long COVID hit my brain, heart & GI.”
Let me unpack a study of ICU survivors…
2/ Read the thread I attached to the first tweet.

From the cancer literature, we learned about the QOL Gap.

If people appropriately prepare for their “ACTUAL” QOL, there’s a narrow gap and all is well.

If not, #Depression & #Despair too often set in.
3/ This study from Johns Hopkins by @vitaincerta & team adds to our understanding in a way that will apply so well to #COVID ICU survivors.

These are ARDS patients, which is almost always what lands COVID pts in the ICU and later with #PICS.
Read 8 tweets
Die Impfung schützt nur moderat gg. #LongCovid (hier post-acute sequelae). Es zeichnete sich schon länger ab. Die Leute wollen es aber nicht hören und Experten getrauen sich nicht, das klar zu sagen. Hier eine neue Nature-Studie: Risikoreduktion 15%. Mist.…
Ich warnte bereits im August 2021 davor (…). Hab es danach immer wieder getan in vielen Artikeln. War mit dieser Einschätzung ein Exot unter den CH-Journalisten. Die meisten haben die Studien jeweils zu optimistisch interpretiert. Image
Wer die Studiendaten von verschiedenen Arbeiten genauer anschaute, sah schon früh, dass es gerade bei neurologischen Problemen jeweils kaum Schutz durch Vakzine bei einer Durchbruchsinfektion gab. Am ehesten noch bei längerfristigen Lungenproblemen.
Read 6 tweets
“Six months after their initial diagnosis of covid, people in the study who were vaccinated had only a slightly reduced risk of getting #LongCovid — 15% overall.”

The largest peer-reviewed analysis in US on long covid based on medical records.…
“This was disappointing,” said @zalaly, lead author and chief of research and development service at VA Saint Louis Health Care System. “I was hoping to see that vaccines offer more protection, especially given that vaccines are our only line of defense nowadays.” #LongCovid
“At the Dartmouth Hitchcock Medical Center’s Post-Acute COVID Syndrome Clinic, Christina Martin, an advance practice nurse, said that since November, her staff has noticed a ‘worrying trend” of vaccinated people having breakthrough infections and developing #LongCovid’”
Read 6 tweets
"We moeten infectieziekten dus niet apart zien. Het lijkt of alles in elkaar past, postinfectieuze klachten na een virusinfectie of bacteriële infectie, en met deze review vallen veel puzzelstukjes op zijn plaats. In de geneeskunde is hier op dit…
moment een gebrek aan begrip voor. Er is dus meer gericht onderzoek nodig.

Voor zowel #Qkoorts als voor #longCOVID is door VWS een instituut opgestart in de vorm van Q-support en C-support om patiënten met postinfectieuze klachten na hun infectie bij te staan. Meer biomedisch
onderzoek is nodig en Q-en C-support zien het dan ook als hun taak om hierop aan te dringen. Daarom wordt er een denktank samengesteld om gezamenlijk met nationale en internationale onderzoekers aan VWS concrete aanbevelingen te doen voor verder onderzoek.'

Read 3 tweets
The latest from our team in @NatureMedicine

Does vaccination protect from #LongCovid?

Vaccines modestly reduce but do not eliminate risk of Long Covid

@VAResearch @vahsrd @WUSTLmed @WUSTLnews @VREFSTL

@Biostayan @BCBowe…

A thread 🧵
In this study of more than 13 million people

Long Covid after breakthrough infection (vaccinated people who subsequently got SARS-CoV-2 infection) is indistinguishable in terms of clinical features from Long Covid in unvaccinated people…
In comparisons vs several uninfected controls
(contemporary, historical, and vaccinated controls)

people with breakthrough infection consistently had higher risk of death and Long Covid sequelae in nearly every organ system…
Read 16 tweets
❗️Voor mijn lotgenoten met #LongCovid en #PEM die pacing willen doen.

Ik ben nu 16 maanden onderweg. Gestart met herstelzorg, oa fysio maar hierdoor achteruitgegaan. Gedurende de tijd PEM ontwikkeld. Omdat ik nu geen zorg heb voor LC en mijn belastbaarheid laag is op advies /🧵
van longcovidpoli toch weer contact opgenomen met een ergotherapeut.

Omdat ik veel hoor dat pacing wel veilig is en aanbevolen wordt wilde ik dat graag onder begeleiding gaan toepassen. In de hoop op minder diepe dalen en om een basislijn te vinden.
Ergo kende pacing en 2/
Gaf me er een folder over.
Fijn, want van pacing weet ik in ieder geval dat het kan en juist goed is bij PEM!
Echter kreeg ik heel erg twijfels toen ik de folder las. Na nu nagevraagd te hebben bij verschillende mensen die pacing kennen ben ik erg geschrokken. 3/
Read 12 tweets
Just out @NatureMedicine
The natural history of post-vaccine breakthrough infections (BTI) in 33,000 people, >13 million controls…
@zalaly @BCBowe @Biostayan @WUSTLmed
—Vaccination protection from #LongCovid ~15%, much less than many other studies (~50%) Image
BTI relative risk and absolute excess burden at 6 months for death, particularly increased for clot-related, lung sequelae Image
Less risk of #LongCovid sequelae with BTI compared with unvaccinated Covid Image
Read 4 tweets
#pwME #LongCovid
Ik wil met een ergo gaan starten met pacing. Echter vraag ik me af of dit wel echt pacing is zoals het bedoelt is bij #mecfs of dat het niet toch een soort verkapt get is.
Zou iemand me kunnen helpen? Ik merk dat ik het moeilijk inschatten vind #pacing 1/
Hier wat foto’s uit de folder waardoor ik twijfel.

Deze folder was overigens eentje die de gebruiken bij chronische pijn revalidatie, maar een andere over pacing had ze niet.

Hoop dat iemand me kan helpen!! Vooral omdat het woordje ‘Graded’ terug komt twijfel ik
Weten jullie dit misschien?
@JetRoz @AnilvanderZee @hout_marianne @tjalcovrv @SlaapkamerA

Wil graag met begeleiding iets doen en voel me zo gebrainwasht dat ik zelf niet meer weet wat nou helpend is of wat dus een red flag is.
Read 5 tweets
1/4 - #COVID19: “Au Portugal, il s'agit bien d'une nouvelle vague. Mais nous n'avons pas un très bon aperçu de la situation en Europe de l'Ouest, à part au Royaume-Uni et au Danemark qui séquencent beaucoup leurs virus.”…
2/4 - “En s'inspirant de ce qui s'est passé avec #Delta l'été puis à l'automne 2021, si la vague de l'été n'est pas trop forte – mais peut continuer de frapper durement les personnes fragiles ou immunodéprimées - nous ne sommes pas à l'abri d'un retour du variant à l’automne.”
3/4 - “L'obligation du port du masque n'a visiblement pas empêché de rebond au Portugal. […] Cela-dit, les masques diminuent les charges virales infectantes. Moins de particules sont échangées, ce qui peut diminuer la gravité des symptômes et les formes de #LongCovid.”
Read 4 tweets
Erst einmal möchten wir uns bei jeder/jedem Einzelnen von euch bedanken!♥

Vielen Dank ihr wunderbaren Seelen! Wir kommen Stück für Stück voran und wir hätten nicht gedacht, dass wir nach so kurzer Zeit die 100 knacken! Das ist aber heute, 25.05.2022 um 14:27 Uhr geschehen!
Wir freuen uns sehr über euer Engagement und hätte nur noch eine bitte an euch: hört nicht auf den Link zu teilen:…

Wenn ihr Möglichkeiten habt wie In einem Elternverteiler den Link zu posten (Schule, Kindergarten, etc.), dann macht es! Umso mehr wir
werden, umso höher der Druck auf die Politik und daher mehr Chancen auf Erfolg!♥ Für unsere Kinder, Jugendlichen und Betroffenen aus vulnerablen Gruppen!♥

In dem Sinne wünschen wir euch jetzt erst mal weiterhin einen super guten Tag und freuen uns,
Read 4 tweets
Il 17% dei bambini e degli adolescenti italiani che hanno avuto Covid-19 manifesta a distanza di 3 mesi sintomi da #LongCovid, tra i quali i più comuni sono congestione nasale, mal di testa e affaticamento, mentre il più persistente l’insonnia. 1/n 🧵 @SIPediatri #LongCovidKids
Dati che emergono dal primo studio prospettico sul long Covid condotto sui bambini e gli adolescenti italiani, coordinato dall’Azienda Ospedaliera Universitaria di Parma, i cui risultati preliminari sono stati illustrati al 77° Congresso della Società Italiana di Pediatria. 2/n
Lo studio, iniziato a novembre 2021 e che terminerà a marzo 2026, condotto su 14 Centri sul territorio nazionale, ha arruolato sinora circa 1.000 bambini e adolescenti con una pregressa infezione da SARS-CoV-2 di diversa gravità. 3/n
Read 15 tweets
1/ An important thread on Long Covid and #viralpersistence

“Almost all infectious outbreaks leave behind a proportion of pts who remain chronically unwell with symptom patterns similar to #LongCovid. This is known as the ‘long tail’ of epidemics.”

2/ Clues can be gained from studying survivors of the SARS (SARS CoV-1) outbreaks of the early 2000’s, and the West Africa Ebola crisis of the past decade.
3/ After SARS CoV-1 in 2002 - 2004, some survivors were reported to feel “weak, extremely fatigued, had aches and pains all over their body, and they were completely unable to work”

Some also reported ‘sleeping extremely poorly’.
Read 25 tweets

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