Discover and read the best of Twitter Threads about #LongCOVID

Most recents (24)

@FrankNBraun @ulfposh @welt Das sind Maßnahmen, die man nutzen könnte, wenn der Datenschutz nicht dagegen stünde. Und vor allem, wenn wir eine kontrollfähige Inzidenz (<50) hätten. Bei der aktuellen Inzidenz und mit den noch gefährlicheren Mutationen vor der Brust sind Ihre Empfehlungen tödlich. (1)
@FrankNBraun @ulfposh @welt Die um 50-70% höhere Infektiosität von #B117 erfordert ein noch niedrigeres R, und die nochmals erheblich höhere Infektiosität der Varianten mit der Mutation #E484K, die auch Prä-Infizierte und Jüngere, nicht Vorbelastete betrifft, macht weitere, erhebliche (2)
@FrankNBraun @ulfposh @welt Kontakteinschränkungen bis auf ein R <0,7 erforderlich. Vulnerable Gruppen zu schützen bedeutet beileibe nicht nur "Heime schützen" - 20 Mio. sind vulnerabel, aber nicht in Heimen, da jünger oder jung. Die Diskussion übersieht die chronisch Kranken, die Krebskranken, (3)
Read 16 tweets
1/ #LongCovid study @DanAyoubkhani et al:
47,780 #COVID19 hospitalised patients (out of which 4,745 ICU) matched to controls in England. Mean follow up 140 days. 29% re-admitted and 12% died following discharge. The rate of death was 8 times higher post covid compared to controls
2/ Covid patients were 3 times more likely to get a post-discharge diagnosis of cardiovascular disease & liver disease, twice as likely for kidney disease & 1.5 times more likely for diabetes. They were 3.5 times more likely to be re-admitted to hospital compared to controls.
3/ See figure for comparions.
Dark grey= covid
Light grey= controls
MACE= major adverse cardiovascular event
CLD = chronic liver disase
CKD = chronic kidney disease
All events=new and exacerbation of existing
'New-onset' post discharge is self-explanatory
Read 5 tweets
LONG COVID—30% of hospital recovered #COVID19 patients end up back in hospital in <5 months; up to 12% die of complications. “we really need to prepare for #LongCovid. It’s a mammoth task to follow up w/ these patients, but monitoring needs to be arranged”…
2) “Researchers at the UK’s Leicester University and the Office for National Statistics found that out of 47,780 people discharged from the hospital, 29.4 percent were readmitted within 140 days, the Telegraph reported.
Of the total, 12.3 percent succumbed to the illness.
3) “Many people who suffer long-lasting effects of the coronavirus develop heart problems, diabetes and chronic liver and kidney conditions.
Read 8 tweets
#LongCovid (also called post-COVID syndrome (PCS)) is defined by NICE as “signs and symptoms that develop during or following an infection consistent with COVID-19 which continue for more than 12 weeks and are
not explained by an alternative diagnosis.”
This study follows the period after discharge from hospital in 47,780 COVID-19 cases (4,745 of which were in ICU).…
Paraphrased from article: COVID-19 hospitalisation was associated with increased risk of readmission and death following discharge when compared to control group.

Nearly a third were re-admitted and >10% died. Image
Read 8 tweets
“A colossal failure at every level of government”

Nearly one year after the first known US #COVID19 case, now 400,000 deaths, we have cases, hospitalizations and deaths at record highs.

➡️ As an epidemiologist who tried to warn, I feel like the Lorax.…
2) Almost 1 year ago...…
3) I suffered a lot of attacks... but shouted out of duty to warn. I was vilified for it until March...…
Read 8 tweets
@OlafStorbeck @schieritz @CDU @spdde @Die_Gruenen @GFelbermayr @rki_de @kakape @Laurie_Garrett @fdp @ViolaPriesemann Danke für diese detaillierte Antwort. Ich denke, so können wir noch besser herausarbeiten, wo ich die Probleme sehe. Ich werde versuchend den einzelnen Aspekten, die Sie aufgebracht haben, der Reihe nach zu folgen. (1/n)
@OlafStorbeck @schieritz @CDU @spdde @Die_Gruenen @GFelbermayr @rki_de @kakape @Laurie_Garrett @fdp @ViolaPriesemann (2/n) Wir wissen, dass wir im Frühjahr in der Tat einfach Glück hatten: Als die vormals unbemerkte Verbreitung in den Nachbarländern endlich bemerkt wurde, war in Deutschland zwar auch schon viel zu viel unbemerkt passiert, aber die Welle war etwa 1-2 Wochen im Rückstand im
@OlafStorbeck @schieritz @CDU @spdde @Die_Gruenen @GFelbermayr @rki_de @kakape @Laurie_Garrett @fdp @ViolaPriesemann (3/n) Vergleich zu den Nachbarländern. Nichts, worauf wir stolz sein können.
In Bezug auf den nächsten Aspekt ist das Swiss Cheese Modell von großem Nutzen: Keine Einzelmaßnahme reicht aus, und oft wissen wir am Anfang noch nicht (und wissen auch, dass wir es noch nicht wissen)
Read 47 tweets
@OlafStorbeck @schieritz @CDU @spdde @Die_Gruenen Ja, aber es wird ganz heftig daran gesägt:…
@OlafStorbeck @schieritz @CDU @spdde @Die_Gruenen Ich sage ja auch nicht, dass 50k Menschen unter 65 sterben werden, sondern dass die Öffnungsfantasien, wenn Sie nicht in einem ewigen hin- und her wieder auf und zu gehen, dazu führen würden. Die vorgeschlagenen Öffnungen sind untauglich, solange nicht bessere Kontrollmechanismen
@OlafStorbeck @schieritz @CDU @spdde @Die_Gruenen > etabliert sind. Dass es dazu keinerlei Anstrengungen gab und gibt ist Keen des Problems, neben der Unfähigkeit vieler, die realen Konsequenzen ihrer gut gemeinten Maßnahmen zu verstehen
Read 80 tweets
THREAD: Women and "Unexplained" Diseases

It's interesting that even a condition as common as #Migraine is still not well understood.

Significant overlap with many other conditions mostly impacting women that are also "not well understood" is present.…
2/ As a women’s health clinician & #COVID researcher I know ME/CFS, #LongCOVID & most autoimmune diseases disproportionately impact women after puberty. Female preponderance has likely contributed to the historical neglect of funding & subsequent lack of interest in studying them
3/ Paradoxically, the ongoing dismissal of many of women’s symptoms and abuse by the medical system is a direct result of our lack of understanding & ongoing LACK of funding.
cc: @jenbrea @ahandvanish @AthenaAkrami @Dr2NisreenAlwan @MBVanElzakker
Read 10 tweets
Da geht grade was kaputt, was sich nur ganz schlecht wieder reparieren lassen wird. Es betrifft weniger die Politik — um deren Intellektuelle Defizite wussten wir. Es geht um den Qualitätsjournalismus, die vierte Gewalt, deren Bedeutung unermesslich ist. >
> Dass #covid19de die #epistemischeKrise (und #epistemologischeKrise) im Journalismus derart hart offen legt, und das auch erst jetzt, wo das unvorstellbare Desaster um #Impfstoffproduktion und eiskalt geplanter Durchseuchung der unter-70 jährigen nur *Monate* vor der #Impfung >
> offenbar wird und der hochqualitative Journalismus unfähig scheint, das Debakel auch nur zu begreifen, das hätte ich genauso wenig erwartet wie das komplette Versagen in der Impfstoffbeschaffung.

Fast genauso katastrophal ist das Ausbleiben jeder Europäischen Dimension. >
Read 8 tweets
🧵1/6 ALL of us have a connection to a school/ #earlyyears setting. We ALL want to see better control of #COVID19 in the UK & avoid another #lockdown.
So ALL of us should be demanding that #schools/nurseries are made S.A.F.E.R.
2/....protecting staff, pupils, families & communities.
How long do we have to wait for the Gvmt to offer/allow adequate mitigation for an airborne virus that’s caused 1000s of AVOIDABLE DEATHS, countless cases of #LongCovid & economic devastation?
How many ppl need to die?
3/If @BorisJohnson won’t protect us,we must protect each other.
Write to your MP/local council asking for #SafeEdForAll
Advice ALL kids >6yrs going to school #WearAMask.
ALLOW staff to wear #MasksInClassrooms. Teaching won’t be perfect but the current situation’s isn’t either.
Read 6 tweets
One of the biggest challenges #mecfs has faced is that there isn't a tidy story to organize one's thoughts around. "Fatigue" has been offered up as the story, but it's a TERRIBLE one. Trivializing, false, and vague. 1/
Some percentage of long-haulers will end up meeting the criteria for #mecfs. The big advantage that they have is that they have a better story: they never recovered from a pandemic. 2/
Long-haulers likely do face some challenges that are unique to that virus. There is a lot of heterogeneity among #mecfs pts, so even just from that perspective , it should be expected that their experience won't be identical to any other #mecfs patient. 3/
Read 6 tweets
#COVIDisAirborne .
Gvmt & education leaders cannot deny THE FACTS any longer.
It is no exaggeration to liken pupils & staff to the men kicking radioactive rubble off the roof in #Chernobyl. 1/6
#Coronavirus is literally “hanging in the air”.
To deny millions of adults & children the right to BASIC, SIMPLE public health measures almost 10 months into a pandemic is not only IRRESPONSIBLE & NEGLIGENT, it is UNFORGIVABLE! 2/6
The Gvmt’s stubborn ignorance & disingenuous concern for the welfare of children is literally killing ppl, causing AVOIDABLE suffering to 1000s of families. You only have to think of current discussions around #FreeSchoolMeals to realise their sympathy is completely false. 3/6
Read 6 tweets
#LongCOVID fam: it took me many conversations with patient #pwme to understand that ME is a full-body systemic illness.

"Chronic fatigue syndrome" was named by a dude who later apologized for the name's triviality. ME/CFS is as severe as LC & needs to be thought of as such. 1/
His apology:

Check out these symptom lists for ME from 1990 and 2001 - they look familiar...

Read 5 tweets
I held back from commenting overnight to chew it over, but I am still saddened by comments during a presentation I attended yesterday by Prof @trishgreenhalgh & @CIHR_IMHA.

The topic was “LongCovid, Myalgic Encephalomyelitis & More”.
I quote from memory.
#MECFS #LongCovid
The bulk of Prof @Trishgreenhalgh’s presentation was on the importance of recognising LongCovid patient’s symptoms, and pathways for patients which recognised their condition as real. So far so good.

She was asked about “Post Exertional Malaise”... 2/n
PEM has been reported by many patients, and is the hallmark symptom of ME/CFS, leading many to query whether LongCovid and ME/CFS are similar or have overlapping mechanisms.

@Trishgreenhalgh acknowledged the new @NiceComms advice for LongCovid was planned to complement... 3/n
Read 25 tweets
Commons debate on #LongCovid starts with @LaylaMoran giving an introduction.

"An estimated 300k have experienced #LongCovid in the UK. There are over 4000 more Long Covid cases added everyday"

#LongCovidCommonsDebate @AppgCoronavirus @march_change
"There is nothing mild about Long Covid." @LaylaMoran continues.

"The all-party group are asking for three things:
Better reporting, urgent money for research and recognition by employers and the welfare system"

#LongCovidCommonsDebate @AppgCoronavirus @march_change
Read 28 tweets
The @UKParliament debate on #LongCovid is about to start. You can view it live here…

We'll be live tweeting for those unable to listen in

@LaylaMoran @AppgCoronavirus @march_change @GwynneMP
Public awareness of #LongCovid is poor. There are potentially 4000 new cases of #LongCovid every day this year @LaylaMoran
#LongCovid affects children
Read 42 tweets
I’ve been sharing my covid journey on Twitter for the past few months, so I figured I’d share this as well. Last week I had a doctors appointment and they discovered that my heart rate is *still* abnormal. 8+ months after having covid, I still have tachycardia.
My lung function test was also a nightmare. I do have asthma, but my lung function has never been *this* bad in the 10+ years I’ve been asthmatic. I also have to see a gastroenterologist because I still have absolutely no appetite and can go 7+ days without eating a meal.
Not only that, but my stomach is inflamed now. Something I’ve never experienced pre-covid. The amount of specialists I have to see just because of this virus is wild. I also couldn’t imagine dealing with this uninsured. My medical bills are ridiculous even with insurance.
Read 8 tweets
3D polemico. Probabilmente nessuno di voi sa dell'amaurosi congenita di tipo 10 di Leber, cecità congenita che colpisce 3 bambini su 100.000, condannandoli alla cecità a vita. L'unico trattamento possibile è attraverso la terapia genica. 1 / n
Grazie alla tecnologia Crispr-CAS9 MODIFICHIAMO il gene difettoso all'interno dell'occhio del paziente (iniettano direttamente il trattamento nell'occhio). Prima di CRISPR il trattamento era basato su Adenovirus 2 / n…
In entrambi i casi MODIFICHIAMO il DNA del paziente e questo è l'unico modo (oggi) per curare questa malattia. La LCA10 non è l'unica malattia genetica che colpisce i bambini, purtroppo l'elenco è lungo e la varietà di malattie è terrificante. 3 / n…
Read 11 tweets
Controversial 3D. Probably none of you knows about Leber congenital amaurosis type 10, congenital blindness that affects 3 out of 100,000 children, condemning them to blindness for life. The only possible treatment is through gene therapy. 1/n
Thanks to Crispr-CAS9 technology we MODIFY the defective gene inside the patient eye ( they directly inject the treatment into the eye). Before CRISPR the treatment was based on Adenovirus carrying the correct form of the gene 2/n…
In both cases, we MODIFY the patient DNA and that's the only way (today) to treat this disease. LCA10 is not the only genetic disease affecting kids unfortunately the list is long and the variety of diseases is terrifying. 3/n…
Read 14 tweets
This is an *excellent* piece by @math_rachel talking about the overlap of machine learning & medicine, & where it goes wrong, capturing such a wide range of issues.

This is required reading for ML folks, #MedTwitter, #LongCOVID, #NEISvoid, & everyone.…
It looks at flaws/biases in medical data (pulse oximeters are less accurate on POC, diagnoses of #EDS take 4 years for men but 16 YEARS for women), ML amplifies biases rather than counteracting them, algorithms that incorrectly cut health care with no method for recourse...

...ways that this has affected #LongCOVID patients (I'd add that the focus on hospitalized patients only, or respiratory symptoms only, will be a huge problem if anyone uses ML for #LongCOVID at this stage).

Read 9 tweets
Porque es un concepto creado con maldad, que nos hace mucho daño. Y es agotador estar explicando, una y otra vez, las diferencias a algunas personas. Abro hilo ➡️
#NoAlEngañoSSC #MartesVisibles
¡Incluso hay asociaciones enteras que lo aplauden! Del mismo modo que insistimos en que no es "fatiga crónica", debemos combatir ese concepto. Más aún, sabiendo que es mucho más perjudicial decirle SCC que "fatiga crónica". ➡️
#NoAlEngañoSSC #MartesVisibles
Directamente, una consulta que se llame de SSC ya no nos puede dar garantía de que ni siquiera sepan de lo que van estas patologías. Detrás de este concepto hay muchas cuestiones que quizá no hayamos descubierto aún y que iremos viendo por partes.➡️
#NoAlEngañoSSC #MartesVisibles
Read 54 tweets
1/ The UK pandemic response must take account of #LongCovid. Death is the worst outcome of #COVID19 but being ill for months & who knows for how much longer in the future is horrendous. A high level of a new chronic illness which medicine is ignorant about can devastate society.
2/ On Thursday this week there will be the first ever Parliamentary debate on long Covid in the House of Commons. This is hugely important. We must #CountLongCovid like we’re counting deaths and positive tests. What happens after the positive test needs measuring too.
3/All those infected in the Spring & summer who haven’t yet recovered need adequate recognition & support. All new infections now will need the same if they end up in the 10% who’re estimated to develop #LongCovid. We need to prevent future cases & not allow the virus to spread.
Read 4 tweets
1) If both #NHS & @GOVUK websites have ONLY 3 symptoms with NO comment about other possible symptoms 1 of 2 things will happen. People WITH #COVID19 won’t realise they need or be able to access a test. OR those people that know there are more symptoms will have to lie to get one.
2)So there will be 1000s of ppl W/ #COVID19 oblivious that they have it & returning to work/school as soon as their symptoms have gone. Add to this that headteachers can only request a test for a child OR send a contact home based on those 3 SYMPTOMS huge numbers will be missed.
3)Then consider that the much hailed #lateralflowtest s have a very high FALSE NEGATIVE rate AND that they’re going to be used widely across educational settings to AVOID children & staff isolating.
This is a recipe for an ABSOLUTE DISASTER!
Read 8 tweets
Dear @MattHancock, for MANY MONTHS we’ve known that the symptoms of #COVID19 include
Persistent dry cough
Fever of > 37.8 degs
Loss or alteration of taste or smell
Shortness of breath
Sore throat
Muscle aches & pain
And in children the symptoms include abdominal pain, diarrhoea, joint pains/redness and odd rashes
And yet, when I did a quick check of the #NHS & @GOVUK websites this evening I was shocked to find this 👇
And this 👇
Read 6 tweets

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