Discover and read the best of Twitter Threads about #CountlongCovid

Most recents (24)

Three 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're still fighting for research and treatment of our disease ImageImageImageImage
#LongCovid as a disease concept first grew out of a collective, grassroots, international, patient-driven movement of Covid survivors in early—mid 2020. As a disease entity, LC was recognized by the WHO in August 2020 thanks to intense patient advocacy…
Today Covid—Long Covid are—is among the most studied diseases in medical history. A search on the repository for scientific papers PubMed for *covid gives over 355,000 results. Papers include vast research on the long-term effects of SARS-CoV-2 infection
Read 9 tweets
»... doctors told him to 'stop making it up.'«

Diese Familien brauchen keine weit geöffneten LongLockdown Schubladen, sie brauchen #Anerkennung #Forschung #Hilfe #CountLongCovid #PostCovid #GenesenIstNichtGesund…
'My world came crashing down'…
Read 7 tweets
🔴Nous signons cette tribune dans @OuestFrance avec 200 scientifiques/soignants/membres de la société civile et de ~40 assos, collectifs &organisation professionnelles, 🇫🇷 &🌍/12 pays,
pour rétablir la réalité #CovidLong et exhorter @EmmanuelMacron @FrcsBraun à agir🔥
📌🔗Nous remercions tous les cosignataires pour leur soutien, liste complète des 200 signataires à retrouver :…
👉Merci aussi à ceux qui ne sont pas sur twitter et à :
@zalaly @PutrinoLab @LBatemanMD @darrenabrown @Sunny_Rae1 @dgurdasani1 @chrischirp
Read 48 tweets
1/ Systematic review of the prevalence of #LongCovid

Now out as a preprint (not peer reviewed yet). It was a LOT of work. So grateful to my co-authors for their monumental effort: @MirembeWoodrow @NidaZiauddeen Darren Greenwood @vlutje1 Rebecca Thomas, @AthenaAkrami Chales Carey
2/As expected we found a huge variation between studies (0-93%). Prevalence generally higher in studies with mostly hospitalised patients. Because of our search period, studies estimating prevalence post vaccination were not included but we know these generally show lower numbers
3/ The main message is that the way #LongCovid is defined & measured affect prevalence estimation. However, even with the most conservative estimates, given past and continuing #SARSCoV2 infection, the burden of chronic disease post infection on population health is substantial.
Read 7 tweets
BA.4 and BA.5 are making their appearance in the US on CDC nowcast. Not sure when to expect them to comprise a majority of cases yet. /647
BA.4 & BA.5 as expected are progressing, approximately at the speed at which Delta took over from Alpha (as I've seen in the data for Massachusetts and the UK) in Illinois, here in the US. They'll likely be the majority of cases in just weeks.
/648… Image
The Moderna mRNA-1273.214 booster shot sounds very promising. I'm very curious how the neutralizing titers difference that their press release indicates will stack up against the BA.4/BA.5 variants that will be dominant in the US. /649…
Read 74 tweets
“One in eight people who were hospitalised with COVID-19 between May 2020 and March 2021 were later diagnosed with myocarditis, or heart inflammation, according to major new research into the clinical long-term effects of COVID-19.” ⁦…
“The largest study of its kind to date was led by the University of Glasgow in collaboration with NHS Greater Glasgow and Clyde (NHS GGC), and followed for one year, in real time, 159 patients after they were hospitalised with COVID-19” #LongCovid #CountLongCovid
“However, this new landmark study suggests that it is the severity of the COVID-19 infection itself which is most closely correlated to the severity of a patient’s long-COVID symptoms, rather than pre-existing health problems”
Interesting new findings in @NatureMedicine
Read 4 tweets
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:
"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)."
"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)."
Read 5 tweets
Just released:
Important @ONS findings for #CountLongCovid

TL;DR: In the tripple-vaccinated no statistical evidence of difference between the Omicrons & Delta in the prevalence of #LongCovid. However, BA.2 seems to lead to higher prevalence than BA.1 of LC of any severity.

Odds of LC 4-8 weeks after a *first* covid infection (not reinfections) is 50% lower in infections compatible with the Omicron BA.1 than those compatible with the Delta among adults who were *double-vaccinated* when infected.

Prevalence 15.9% for Delta and 8.7% for BA.1.

There was no statistical evidence of a difference in risk between first infections compatible with the Delta and Omicron BA.1 variants among *triple-vaccinated* adults.

LC prevalence was 8.5% for Delta and 8% for Omicron BA.1.

Read 7 tweets
"Pooled mean prevalence results for any experience of PACS (Long Covid) extracted from nine systematic reviews, ranged from 51%–80%".

Yes. Read that again. 51%–80% of infections develop Long Covid. /1.…
"Pooled mean prevalence results for specific PACS [Long Covid] symptoms were extracted, when available, from 32 systematic reviews".

Yes. Read that again. Extracted from 32 systematic reviews. /2.
"Symptoms and prevalence results varied widely across reviews, however some of the most commonly reported symptoms included fatigue; shortness of breath; anxiety; depression; sleep disorder; cognitive and memory impairments; and negative impacts on quality of life (QoL)". /3.
Read 9 tweets
Please join us in welcoming our NEW #LCKchampion Dr Anna Brooks

BCA PhD Immunologist and Senior Lecturer at the Faculty of Science, University of Auckland, New Zealand

Give her some #LCKfamily 💕@DrAnnaNZ

#LongCovidKids #NewZealand #NZ @jacindaardern…
#LCKchampion @surf4children

Dr Danilo Buonsenso
Paediatrician Dept of Woman and Child Health and Public Health Rome

#LongCovidKids #LongCovid…
Read 16 tweets
Today is my daughter’s two year #covidversary. She was 16 when she infected, and I fought hard to get her tested. Everyone said kids don’t get #COVID. But I knew they were wrong. Because I was looking at a kid with COVID. 1/
I decided to make her story public, because I knew that if my child was sick & couldn’t get tested, then there were many other families in the same boat.… 2/
We finally were able to test on day 14 of her illness, and day 5 of mine because I was high risk due to having MS. My test was positive. But Molly tested negative, because we missed the testing window. I had wanted her case counted, but it never was. 3/
Read 9 tweets
Bar chart of #LongCovid symptom duration
Estimated number of people living with LC symptoms (1000s) Image
Read 8 tweets
"Long COVID is a patient made term, experienced by non-expectant risk groups. Approximately 1 in 10 experience #longCOVID not fully recovering"- @Dr2NisreenAlwan of @unisouthampton in the first session at our #LongCOVIDConference 🧵1/7
In the initial reporting, there was a large focus on death and survival. But "LongCOVID does not paint a black and white picture," says @Dr2NisreenAlwan. The grey area of chronic post-viral illness is missing from the narrative. 2/7
Even now, #LongCOVID is unacknowledged by UK policy makers and is missing from health policy discussions, despite 1.3 million people suffering from the condition. (data from ONS survey) 3/7
Read 7 tweets
Thank you so much to @RepPressley for meeting with leaders of the #LongCovid & disability community to talk about major treatment, research, and policy needs, and her call to the CDC to #CountLongCovid!

Our full conversation is available here:

Thank you to all the advocates (representing @patientled, @itsbodypolitic, @C19LH_Advocacy, @UTc19LongHaul & others) who spent energy giving amazing testimonies: @LisaAMcCorkell, @chiluvs1, @netiamccray, @LisaOBrienn, @SeeMiaRoll, @K_Bishof, @rubyslippahs, @annwlace409 & Molly 2/
A thing that stood out to me: Dr. Bateman (1:02:59), who spent her career seeing v disabled ME patients, saying:

"I was completely stunned by the disability & severity of illness in #LongCovid...the amount of cognitive impairment & physical impairment is just unbelievable."

Read 6 tweets
Had no literal idea this “follow up interview” was gonna be live TV, but tried to remind @CBSMornings viewers it’s been 2 years & there’s still no warning about #LongCovid disabling 10-30% of all infected folks ~ and it’s 💯 critical we #CountLongCovid & #TreatLongCovid
When I open my zoom link and saw people talking about Afghanistan and Ukraine I was like is going on lol and then they I hear “you’re on in 30 seconds”
Full interview here…
Read 4 tweets
I wrote this in August 2020 in @TheLancet:

“So far in the COVID-19 pandemic, surveillance systems are not monitoring ill health and long-term implications of COVID-19, only deaths are reported.”
“A universal surveillance case definition of recovery from COVID-19 is still absent. Many people have prolonged symptoms, ill health, and reduced functionality for months, even if they were not hospitalised for SARS-CoV-2 infection.”
“We must move long-haul COVID from anecdote to something that is routinely quantified and monitored, as is currently being done with deaths and positive tests.”
Read 8 tweets
>>Leugnung ist ein großes Thema während der Pandemie. Leugnung der Übertragung über die Luft, Leugnung der Wissenschaft, Leugnung der Ernsthaftigkeit von Omicron und Leugnung dessen, was es wirklich bedeutet, „mit #Covid19 zu leben“<<…
>> Wir hatten wirksame Kampagnen zum Händewaschen, aber keine Kampagnen mit ähnlicher Wirkung wurden durchgeführt, um die Menschen zu befähigen, ihr eigenes Risiko mit einfachen Maßnahmen wie dem Öffnen eines Fensters zu kontrollieren.
Das Versäumnis, sich auf die Übertragung über die Luft zu konzentrieren, hat die Fähigkeit, die Ausbreitung zu kontrollieren, behindert... Die Korrektur ist entscheidend für die langfristige Nachhaltigkeit von Gesundheit, Unternehmen und Wirtschaft.
Read 27 tweets
As a parent and a citizen, I am very alarmed by what is happening in Ontario.
Our CMOH has sanctioned the re-opening of schools during a time when they are less safe than ever.
I thought the CMOH was there to protect us from harm, to operate within the highest integrity,
upholding the ethics of their profession at all times, irrespective of political opinion or persuasion.
I was naïve.
“The Chief Medical Officer of Health (CMOH) reports directly to the Deputy Minister of Health.”…
But how is 1 public health officer allowed to operate without any checks and balances? Oh wait – there are local checks and balances, but they are not being exercised at present.…
Order by M.O.H. re communicable disease
Read 31 tweets
Primary schools in England are opening tomorrow with no mask recommendation, no adequate ventilation measures and no vaccine offer for all 5-11 year olds in the context of 1.1 million confirmed covid cases during the last 7 days in the UK.
Read 5 tweets
8 yo Girl.
Off food for 2 days.
Bizarre itchy rash
Called 111 told Chilblains
Mum unconvinced

Please show #teachers #education #schools


Think #COVID19 #Omicron #LongCovidKids Image
Symptoms of #LongCovid can be found in the gallery.


Sores at the sides of the mouth.
This child tested positive for #COVID19

Please RT to help others #SpotCovid

#education #schools #teachers
#Omicron #OmicronVarient #LongCovidKids Image
Read 27 tweets
#LongCovid has cost me everything — my health, my home, my career, proximity to everyone I know and my ability to rebuild what was destroyed. I’ve been without income for over a year. This virus has taken my life — without actually killing me.
2) Because SunLife wrongfully denied my long-term disability claim, I had to sell my new dream home to survive. My #LongCovid symptoms started only six months after moving in.
3) I say ‘wrongfully’ denied because I’m genuinely sick — I’m not faking it, lying about it or making it up. I’m not lazy, unwilling to work, hoping to retire early or attempting to commit insurance fraud. I am completely debilitated by #LongCovid and incapable of working.
Read 9 tweets
Zusammenfassend lässt sich sagen, dass die zunehmende Evidenz zu neurologischen Folgeerscheinungen bei Patienten mit #COVID19 Anlass zur Besorgnis gibt. #NeuroCovid #PostCovid #CountLongCovid…
Read 4 tweets
PHASE 1 LAUNCH! New study reveals yawning gap in medical care for energy-impaired

#pwME #NEISvoid #FBLC #LongCovidWork #LongCovidCosts #TreatLongCovid #CountLongCovid #miilionsmissing #HealthEquity #patientled #medtwitter #wellless

A THREAD > Image shows 'energy' used for patient activities on a graph
Long-Covid visual report quantifies money, time, work and energy spent on the battle to get medical care, and introduces new language of the “well-less” to improve patient awareness and support.
@long_covid @longcovidwork @actionforme @chronicinclude #EDS #PoTS #postviral Image shows a new healthcare spectrum from Well[ness] throug
I tracked and analysed my own health interactions from 2020 across nine different self-data sources, including @BupaUK @Bupa , @LloydsBank , @timspector (Zoe Covid Symptom Tracking App(, email, SMS, mobile and calendar data #Datavisualization #selfanalytics #dataviz
Read 25 tweets
#longcovid recovery
A thread.
Whilst I write this I'm painfully aware of so many people with #longcovid who are far from recovery but at the same time I want to give hope.
Last September I lost my job as I was too ill to work due to #LongCovid
I was breathless, tachycardic, full of brain fog, and had tinnitus and myalgia. I had pyrexia daily and awful post exertional malaise that would hit every time I tried to do anything.
I went onto discover many of my symptoms were related to the #PoTS I had developed as a consequence of my #covid19 infection.
I started medication and luckily it had a good effect on me, allowing me to slowly build myself up to go back to work as a locum GP.
Read 13 tweets

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