Discover and read the best of Twitter Threads about #koronaoire
Most recents (9)
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 
#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
sciencedirect.com/science/articl…
sciencedirect.com/science/articl…
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
pubmed.ncbi.nlm.nih.gov/?term=Covid
pubmed.ncbi.nlm.nih.gov/?term=Covid
I talked to @aboutlongcovid about the rise of #LongCovid as a patient-led advocacy movement in early to mid 2020. I also highlighted the key role of the patient community on social media in fighting misinformation and providing key support to survivors
aboutlongcovid.org/interview-with…
aboutlongcovid.org/interview-with…
A note: the original piece was longer and was shortened for the blog format. The original story of #LongCovid rise is much longer! More info in the article attached. The role of digital advocacy is also more complex and deserves further attention
sciencedirect.com/science/articl…
sciencedirect.com/science/articl…
Some key pointers: #LongCovid was born as a patient-led advocacy and research movement in 2020. The patient-made name Long Covid— as an hashtag— helped to link the grassroots advocacy movement, which was growing in spring 2020 in different countries, like with #apresJ20 in France
Letter: the pandemic is not over. I agree. I'm pleased to see here recognition of #LongCovid and the risks to the public. Just a note: the @CDCgov openly addressed SARS-CoV-2 sequelae a few days ago. But we've known about Long Covid for over 2 years 🧵
concordmonitor.com/-46654136
concordmonitor.com/-46654136
Reports of prolonged covid illness started to emerge from early hotspots like Lombardy, the UK, Spain, France in March to April 2020. People affected by covid, often left at home with no care, gathered on social and other media e.g. Twitter to share their experiences
#LongCovid
#LongCovid
Many of the earliest advocates and patient-researchers were so ill to have to resort to little pieces of writing like tweets, or blogs, to describe, in a completely innovative way, a new disease
@felicitycallard and I recount the story here
ncbi.nlm.nih.gov/pmc/articles/P…
@felicitycallard and I recount the story here
ncbi.nlm.nih.gov/pmc/articles/P…
Yes. Many are definitely underestimating the dangers of #LongCovid and #LongCovidKids
Patients have been reporting and publishing on the gravity of the condition for over 1 year. Policy makers are still hesitant to fully acknowledge it
Thread and data collection down here 🔽
Patients have been reporting and publishing on the gravity of the condition for over 1 year. Policy makers are still hesitant to fully acknowledge it
Thread and data collection down here 🔽
I add in my own🧵 some scientific papers and other key contributions to knowledge by patient researchers. Not exhaustive!
@fi_lowenstein @itsbodypolitic
and @ahandvanish @patientled in the NYT: the pandemic is a mass disabling event
#LongCovid
nytimes.com/2021/03/17/opi…
@fi_lowenstein @itsbodypolitic
and @ahandvanish @patientled in the NYT: the pandemic is a mass disabling event
#LongCovid
nytimes.com/2021/03/17/opi…
Davis et al (2021) characterize #LongCovid in a large cohort of patients at 7 months from symptom onset. Patients come from support groups in many different countries.
@patientled
@EClinicalMed
thelancet.com/journals/eclin…
@patientled
@EClinicalMed
thelancet.com/journals/eclin…
.@felicitycallard and I have a new paper on #LongCovid
We show how patient activism and research reshaped #COVID19 well ahead of conventional science 🧵
Patient-made Long Covid changed COVID-19 (and the production of science, too) osf.io/preprints/soca… via @OSFramework
We show how patient activism and research reshaped #COVID19 well ahead of conventional science 🧵
Patient-made Long Covid changed COVID-19 (and the production of science, too) osf.io/preprints/soca… via @OSFramework
#LongCovid is the term patients made to indicate the long-term symptoms and sequelae of #COVID19. Initial reports claimed Covid was a respiratory illness with estimated recovery in 2--6 weeks.
Patients built a global grassroot movement and successfully challenged this narrative.
Patients built a global grassroot movement and successfully challenged this narrative.
Those with #LongCovid made key contributions to knowledge via multiple media, from Twitter to informal papers. Many of these risk exploitation/dismissal because they are outside the channels through which science is usually built
Thus, we bring solidity to patient made evidence
Thus, we bring solidity to patient made evidence
Last week we had the first meeting on #LongCovid in Italy.
We were pleased to receive full support from Italy's Ministry of Health @MinisteroSalute, with a formal letter that used the patient-made term Long Covid.
@LongCovidItalia #LongCovidItalia @MartaEsperti
We were pleased to receive full support from Italy's Ministry of Health @MinisteroSalute, with a formal letter that used the patient-made term Long Covid.
@LongCovidItalia #LongCovidItalia @MartaEsperti
We want to thanks the international #LongCovid community and all the allies (clinicians, researchers etc.) who helped us to reach this milestone @LongCovidSOS
@long_covid @apresj20 @apuakoronaan @LongCovidKids @LongNetherlands @LongCovidWales
#LongCovid #NothingAboutUsWithoutUs
@long_covid @apresj20 @apuakoronaan @LongCovidKids @LongNetherlands @LongCovidWales
#LongCovid #NothingAboutUsWithoutUs
#LongCovid in children 🧵on Buonsenso et al 2021 (preprint)
A cohort of 129 pediatric #COVID19 patients from Italy
⏩ over 50% experienced long term symptoms
⏩ symptoms are similar to those seen in adults (chest pain, fatigue etc.)
#LongCovidKids
medrxiv.org/content/10.110…
A cohort of 129 pediatric #COVID19 patients from Italy
⏩ over 50% experienced long term symptoms
⏩ symptoms are similar to those seen in adults (chest pain, fatigue etc.)
#LongCovidKids
medrxiv.org/content/10.110…
⏩ long term symptoms in children (#LongCovidKids) can develop also after asymptomatic/pauci-symptomatic acute #COVID19 infection
⏩ 2.3% of sample developed #MISC (multi system inflammatory syndrome)
⏩ 1.6% of sample developed myocarditis: child ❤ can be affected
#LongCovid
⏩ 2.3% of sample developed #MISC (multi system inflammatory syndrome)
⏩ 1.6% of sample developed myocarditis: child ❤ can be affected
#LongCovid
⏩ few rare new diagnoses of asthma
⏩ long term symptoms caused distress to a significant portion of #LongCovidKids patients
⏩ most patients did •not• have commorbities before #COVID19
#LongCovid #apresJ20 #covidpersistente #MitCoronaLeben #koronaoire #LongCovidItalia
⏩ long term symptoms caused distress to a significant portion of #LongCovidKids patients
⏩ most patients did •not• have commorbities before #COVID19
#LongCovid #apresJ20 #covidpersistente #MitCoronaLeben #koronaoire #LongCovidItalia
On the use of mast cell stabilizers in #COVID19 👇 with a list of publications starting to document positive results clinically
Mast Cell Activation #MCAS/ related mechanisms have long been discussed by #COVID19 #LongCovid patients has a potential issue beahind their symptoms
Mast Cell Activation #MCAS/ related mechanisms have long been discussed by #COVID19 #LongCovid patients has a potential issue beahind their symptoms
For more information and links to published papers 👇#MCAS #LongCovid #apresJ20 #covidpersistente #MitCoronaLeben #koronaoire @RafaelOsswald @Savolainen_J of specific interest?
Found this paper on Mast Cell Activation in #COVID19 interesting, at least in theory, because it links #MCAS to the multi-system inflammatory syndrome in children #MISC + blood circulation issues in capillaries
Will read later #LongCovid #apresJ20
pediatricsresearchjournal.com/articles/kawas…
Will read later #LongCovid #apresJ20
pediatricsresearchjournal.com/articles/kawas…
131 päivä #koronaoire :kanssa. Eilen olin Meilahden, Infektiopolilla infektiolääkäriä näkemässä. Mitään apuja tähän ei ole vielä kun ei tiedetä miksi tämä kestää +100 päivää.
Viimeisimpiä oireita: Joku nakertaa vasen korvalehteä sisältäpäin sekä tunne, että se 1/
Viimeisimpiä oireita: Joku nakertaa vasen korvalehteä sisältäpäin sekä tunne, että se 1/
Vääntyy kokoajan vinoon. Eilen illalla nukkumaan mennessä mun oikean korvakäytävä alkoi rummuttamaan. Käytännössä tänään tajusin, että korvakäytävä (lihas tjsp) aiheutti nykimistä. Tänään vasemman korvan takana alkoi joku lihas nykimään. Edelleen #koronaoire 2/
Kainalokuopat on kipeenä, rintalasta hellänä (tuntuu, että jyrä olisi ajanut sen yli) vasenta kättä on vaikeeta käyttää esim. astioiden pesuun kun kipu heijastuu vasemmalle rintalihakseen / rintaan. Nivelet on kipeenä ja lonkkaluuhun oikealla särkee. #koronaoire 3/
