Discover and read the best of Twitter Threads about #longcovid

Most recents (24)

Remember those public health vs the economy debates & headlines in 2020-21 when we were saying #CountLongCovid?

Well here goes an answer from none other than the Bank of England.

The quotes below are from a speech by Michael Saunders, Monetary Policy Committee Member:
1/5 Image
"Since Q4-19, the number of people aged 16-64 years that are outside the workforce and do not want a job has risen by 525,000 (1.3% of the 16-64 age population)."
2/5
"This largely reflects increases in long-term sickness (roughly 320,000 people) and retirement (90,000), with smaller contributions from lower participation among students (65-70,000) and short-term sickness (30-35,000 people)."
3/5
Read 5 tweets
Wenn #SarsCov2 #endemisch wird, bedeutet das leider nicht, dass es auch harmlos wird. Vulnerable Gruppen müssen weiter geschützt werden. #LongCovid und #MECFS bleiben ein Thema!

Ein Normal wie 2019 wird es (leider) nicht geben. Aus meiner Ansicht gibt es einen Weg.

Ein 🧵
Zentraler Dreh- und Angelpunkt ist die Krankheitslast.

Wie schwer erkranken Betroffene? Wieviele Menschen versterben? Wie werden die Krankenhäuser belastet? Wie schwer wiegen die Ausfälle im Bereich der Wirtschaft?

Die Krankheitslast hängt dabei natürlich von der Variante ab.
Mit #Omicron haben wir aktuell eine Variante, welche trotz unangepassten Impfstoffes nur für verhältnismäßig wenig schwere Akut-Verläufe sorgt. Dennoch erkranken viele, fallen z.T. wochenlang aus und nicht wenige erkranken an #LongCovid. Spätfolgen der Infektion sind unklar.
Read 15 tweets
Your weekend reminder to please protect yourself + your loved ones:

Be aware of your community transmission (high in most places)

Get boosted before it’s too late

Wear an N95 indoors when in public

Seek approved early therapy

Isolate until rapid antigen negative

Stay safe!
None of these measures are lockdowns!

Each measure can reduce your risks

You may feel invincible, but you don’t know who else picks up the infection from you on public transport or at a shop or bakery or coffee shop

Please care for your fellow human beings. It’s not hard!
Children, young and middle age adults put their lives on a paralyzing hold in March 2020 for a year to protect the most vulnerable, the elderly and the high-risk folks, as much as possible

Cancer diagnoses got delayed. Many died due to delayed care. Folks lost houses and careers
Read 8 tweets
Derzeit haben in Deutschland erst 5,8% der Bevölkerung eine vierte Impfung erhalten, und auch bei den über 60-jährigen sind es gerade mal 17,5%.
Vor diesem Hintergrund hier ein Thread mit einem Überblick…

#ImpfenSchuetzt
#COVID19
#LongCovid
#coronavirus

impfdashboard.de ImageImage
…zu den Erkenntnissen aus den mittlerweile zahlreichen Studien zur Wirksamkeit der 4. Impfung.

Daten zur 4. Impfung liegen derzeit aus Israel, UK, Schweden, Kanada und Deutschland vor. Ein Überblick dazu mit Verlinkungen zu den einzelnen Studien gibt es am Ende des Threads.
Die Ergebnisse der diversen Studien lassen sich wie folgt zusammenfassen:

👉 Die Daten basieren in der Regel auf Impfungen von Personen im Alter ab 60 Jahren. Aber auch Ergebnisse der vierten Impfung von jüngeren Mitarbeitern im Gesundheitswesen wurden untersucht.
Read 13 tweets
Why is this "expert" establishment so far behind in Long Covid research #TeamClots?

"We’ve seen some patients with persistently elevated D-dimers months after COVID, and that makes us wonder whether they may have some tendency to microthrombi OR SOMETHING LIKE THAT">
Maybe it's the criminal company they keep?

Wilder: You recently co-authored a piece with Avindra Nath, M.D., from the NIH...

Spudich: [I gained a lot of] insight through working with Avi.

Like how to grift for NIH grants while people suffer and die around you?>
Read 6 tweets
A team of researchers from NIH, Harvard, Johns Hopkins & Mt. Sinai just published a case series on 23 previously healthy individuals who developed #POTS or other neurological problems within 1 month after receiving a #COVID vaccine. Let's dig in: 🧵
They found autonomic dysfunction, small fiber neuropathy, inflammation of small fiber nerves, and that immune proteins called complement were being deposited on the small fiber nerves, which is seen in some autoimmune neurological disorders. 🧵
They emphasize that their study does NOT conclusively confirm that COVID vaccines caused the neurological illness, but circumstantial evidence suggests immune dysregulation is likely involved. They call for further research to understand mechanisms and clinical trials. 🧵
Read 11 tweets
"Your test results are normal"

Medical professionals, please ask yourself: at which point would you stop testing?

I have put a ⛔ where I am aware many doctors have stopped with patients.

🧵

#LongCovid #MECFS #vaccineinjuries #chronicillness #TeamClots #MedTwitter
A patient goes to the dr with a range of systemic symptoms that dont neatly fit current diagnostic criteria. Symptoms started rapidly & strongly a few hours after the COVID vaccine; however, the reason for the problem isnt important for this lesson



The doctor does some tests
Hb, RBC, haematocrit, MCV, MCH, platelet count, WBC, neutrophil, eosinophil, basophil, lymphocyte, & monocyte count. Mean platelet volume is elevated but this isnt reported & is instead hidden in the lab records. “Your test results are normal” the doctor says

Read 18 tweets
1/🧵 ⭐️ Postural orthostatic tachycardia syndrome (#POTS) and ANXIETY ⭐️ (a thread in response to recent experiences patients have had on here and some questions from others.)

-👉POTS is NOT a psychological disorder….👈
2/ POTS patients have lower levels of anxiety than the general population in studies ahajournals.org/doi/10.1161/ci… (this is a great article on POTS in general)
3/ this study took POTS patients and controls and induced lower body negative pressure to manipulate orthostatic stress. They had to fill in a psychological questionnaire. POTS patients heart rate went up by 39bpm, controls by 3bpm….(that rise of 39 won’t feel nice)
Read 20 tweets
Omicron wave of mass infection showing its impact. Too many friends & colleagues reaching out for advice on #LongCovid. Heartbreaking.

A 🧵on Rest & Pace. Biggest advice: don't repeat the mistake that most of us from the first wave in 2020 did i.e. push yourself.

1/
Data suggest recovery after the first few months is infrequent.

Tran et al (France)*:
-Of LC patients who were still sick at 2 months, only 15% recovered by 1 year

-Of those who thought they were better, 33% subsequently relapsed

*Non-vaccinated
2/
nature.com/articles/s4146…
Whitaker et al (UK)*:

- A rapid drop-off in symptom reporting by 4 weeks, a further, smaller drop by 12 weeks, but then very limited further decline (for up to ~22 weeks of study duration) for both men and women.

*Non-vaccinated population
3/

nature.com/articles/s4146… Image
Read 21 tweets
The #Longcovid adventure goes on. This week, three of us travelled from Northern Ireland to Germany for Microclot testing. All three of us tested positive for Microclots and hyperactivated platelets. Image
Drugs to treat based on these blood results sit on the shelves in every pharmacy in Northern Ireland, yet we have to go to Germany to get access to them. Treating microclots may not be curative, but it can help. Doing nothing should not be an option. #treatlongcovid
Read 3 tweets
I haven’t provided much of an update in my #longcovid #mecfs #pots #mcas picture.

So here it goes… 🧵

For reference, I got Covid June ‘20 and spiraled into #longcovid July-Aug

What I’m working towards right now: tethered spinal cord evaluation by 2-3 surgeons.
Between Aug ‘20 - May ‘21 I was dx’d with: POTS, SIBO, MCAS, ME/CFS.

I also was tested for collagen disorders which came back negative.
Between Dec ‘20 and Aug ‘21 I had a workup around my c-spine because of *pulsatile* tinnitus in my left ear - a ‘whooshing’ sound. It can be an indicator of a vascular issue at the cervical junction (compression).

A CT revealed I had jugular compression.
Read 27 tweets
Two years ago today the term #LongCovid was first used as a Twitter hashtag. A single tweet by a patient linked together a growing, grassroots movement of people who weren't recovering from covid. Across the world, we were fighting for recognition and studying our own disease

🧵
#LongCovid is now one of most studied diseases in history. It's not "rare" or "mysterious". It was recognized by the WHO in August 2020 already, after an history-making meeting with advocates and patient-researchers. We have come that far.

theatlantic.com/health/archive…
And yet, this pandemic is a mass disabling event. Treatment options, open communication, and support for patients are still lagging behind. We will not stop fighting for the rights of people living with #LongCovid and other complex chronic diseases.
Read 28 tweets
Es sind #NichtNurEinzelne!

W, Anfang 30, sportlich, aktiv. Covid vor einem Jahr. Danach immer schlechter zurecht. Zunehmende Halbseitensymptomatik, Schwäche des Arms und des Beins. Neurologische Vorstellung. Diagnose CIDP - chronisch informatorisch demyelisierende
Polyradikuloneuropathie. Eine Entzündung der Nervenwurzeln. War in der Reha, bei verschiedenen Fachärzten, in Kliniken. Bisher nicht über Pacing aufgeklärt worden, bisher keine medikamentösen Behandlungsversuche des #LongCovid bzw #mecfs, was sie sicher jetzt hat.
Diese junge Frau ist aus ihrem Leben gerissen worden. Sie kann nicht mehr die Mutter sein, die sie sein möchte. Sie kann nicht die Ehefrau sein, die sie sein möchte. Sie kann gar nicht mehr die sein, die sie sein möchte.

Es sind #millionsmissing und es braucht mehr Aufklärung!
Read 4 tweets
💔❤️My update on microvascular dysfunction in the heart with #LongCovid.
A 🧵
Today I had a left heart cath which pays special attention to the smallest heart vessels. During this time, the resistance pressure is measured at rest and under simulated stress with medication. If it is significantly increased, this indicates a narrowing of the smallest vessels
My result :
The large ateries are not calcified at my age, of course. However, they are narrow and cramping.
But more importantly the small vessels: they are almost completely closed even at rest and are difficult to open.
Treatment options: Dilitazem and Ranexa for symptoms.
Read 5 tweets
We know, scientifically, that #LongCovid is a complex, multi-system, multidimensional disease. It can affect, basically, all organs and body systems. There are thousands of publications on Long Covid and around half a million on covid in general. Children are affected, too.

🧵
#LongCovid can present with a wide range of manifestations, including severe, life threatening. This is not surprising: it's the same for acute covid, and it's well documented in the scientific literature. We know that many, including pediatric patients, have been ill since 2020.
I have not followed the interview in question. But any medical professional, or researcher, who deny the huge amount of scientific evidence available on #LongCovid should not be involved in managing patients, research, consultancy, or advising governments and health bodies.
Read 6 tweets
Ich versuch mal möglichst wertschätzend zu argumentieren, warum ich es für unabdingbar halte, dass interviewte Experten *immer* #LongCOVID erwähnen, bestenfalls erklären, warum.

Das ist jetzt auf Österreich gemünzt, mag in anderen Ländern ähnlich sein.

🧵
Mir ist bewusst, dass ein Live-Interview anders ist als eine Aufzeichnung. Dass es Zeitdruck gibt, dass man unter Druck steht, weil jeder Satz auf die Goldwaage gelegt wird, weil man weiß, dass nach einem Interview wieder Drohungen und Beschimpfungen einflattern werden. 1/x
Expertinnen wie von Laer haben das leidvoll erfahren müssen, als es letztes Jahr darum ging, das geheiligte Land mit den Gondeln zu isolieren, um die Ausbreitung der BETA-Variante zu verhindern. Die Empörung einzelner Ungustln aus der Bevölkerung überschreitet jede Linie. 2/x
Read 28 tweets
I'd like to add some more info to this thread from last night about a new NIH paper that documents neuropathy & immune dysfunction in 23 people after COVID vaccination. 1/
Vaccine safety is a third rail these days - JFK Jr and the antivax, anti-science movement have poisoned the discussion and made it very difficult to have nuanced conversations about the COVID vaccines. 2/
Starting early in 2021, NIH began looking at people who claimed serious problems that began after vaccination - including serious neuropathies & other symptoms that mirror #longcovid. 3/
Read 22 tweets
Tomorrow is my 14 month #CovidVaccine anniversary.

Today is hopefully the beginning of the end of that nightmare. 😬😅🤞🏻

#vaccineinjuries #LongCovid #TeamClots A box of clopidogrel 75 mg tablets and a box of abixaban 5 m
Massive thank you to the vaccine injured community, esp @ukcvfamily but also many others (special thanks to @Fallaryn), who have introduced us all to research and brought untold levels of support
Massive thank you to all the #microclots researchers and clinicians who have brought us valuable insight and quite literally life saving advice. The idea to get a VQ scan was a game changer and i cant thank the person who suggested that enough
Read 5 tweets
My solidarity to all healthcare professionals, including nurses, who contracted covid at work and are now living with #LongCovid. It is of paramount importance healthcare professionals, as well as other people living with Long Covid, are fully supported
As we have just passed #NursesDay it is important to consider how much talent and expertise can be lost, if optimal care and support pathways aren't implemented by providers and employers. Healthcare professionals are among the most hit by #LongCovid
The loss of healthcare expertise to #LongCovid is a huge hit for providers and new patients alike. Healthcare systems are under severe duress in this pandemic.
And, as usual, my solidarity to all sufferers beyond age, gender, and profession
Read 4 tweets
The UK has started stockpiling vaccines after similar information from the US , Meanwhile Montreal has 17 cases and it's spreading under the radar .
Image
2/n It seems to me that all viruses have become overactive Mozambique🇲🇿confirms first wild poliovirus case in 30 years. Case in child in Tete province follows detection of similar strain in Malawi in February, officials say.This was also seen in Isreal 😢😢
Ctd)
3/n Though we dont want this to be a political issue BUT to change information as such will probably boomerang as kids show up with lesions on face ctd)
Read 30 tweets
@sunsopeningband Great question! Our data also supports that the majority of folks we see with LC have both metabolic and autonomic components (we see kind of a distribution of 15-20% of autonomic or metabolic alone, and 60-70% of a mix of both). I think the main point is that you can have 1/
@sunsopeningband both processes at play, but I don't have evidence at this stage that the processes are linked, they're likely separate: you have metabolic PEM AND autonomic PEM and one doesn't influence the other. For autonomic we take careful physical and physiological measurement at each 2/
@sunsopeningband session in order to measure the extent to which someone's ANS is activated on the day, as well as to track progress (10m stand, HRV (SDNN), HR/BP changes through positional transitions), for metabolic it is very tough (we're going to release some research on this ASAP), but 3/
Read 8 tweets
Ok not exactly breaking news. We have known since 2020 thanks to the patient community that #LongCovid can come after a "mild" or even asymptomatic infection. Many people with Long Covid were never hospitalized in the acute phase

🧵
However, I think it's important to be clear here: many people who were never hospitalized in the acute phase *did* experience what I would define as severe disease. First, we know people with severe symptoms in hotspots were left at home because of healthcare collapse
Second, severity in acute covid was initially defined by guidelines as based on the severity of respiratory symptoms, the gravity of covid pneumonia, and the likelihood to develop ARDS, respiratory failure and organ failure. But covid is much more than a respiratory illness
Read 4 tweets
welt.de/gesundheit/plu… via @welt

Aan de hand van dit artikel een uitleg over wat mijns inziens #LongCovid is.

Want de verschillende leden van het simplistisch verbond, zoals politici, virologen en microbiologen...
...kraamden natuurlijk de grootst mogelijke onzin uit over wat dit ziektebeeld inhoudt, prettig ongehinderd door enige vorm van kennis of kunde, en zonder ooit iemand gezien of gesproken heeft met deze klachten.
Ik moet zeggen dat ik een glimlach om mijn mond kreeg toen ik dit artikel las. Want natuurlijk was er geen enkel bewijs dat vaccinatie #LongCovid zou voorkomen, en gezien de complexe onderliggende problematiek was dat ook helemaal niet te verwachten.
Read 31 tweets
SYSTEMIC FAILURE REPORT CARD

2+ years into #COVID19 ,

which we have all suffered through collectively and hugely,

institutions are failing monstrously,

at protecting children,

whom you take more care with,

not less.

#MAIM
#LongCovidKids

#onted
What’s changed?

Is it milder?

No

“Omicron as severe as other COVID variants -large U.S. study”

reuters.com/business/healt…

researchsquare.com/article/rs-160…

Can kids <5 get a 💉?

No

Boosters 5-11?

No

Can you still get #LongCovidKids even if 💉?

Yes

=need more protections
So do we still need to prevent

transmission & infection

in PS & daycares

b/c more care with kids

not less

b/c #LongCovidKids

right?

Yes

“Of all the myths associated with COVID-19, 1 of the earliest was that the virus is harmless for children”

theadvocate.com/baton_rouge/op…
Read 30 tweets

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