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 ImageImage
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
We are preparing a thread with some of the key points and research data, which have been presented at the #LongCovidItalia Open Day @LongCovidItalia.

Looking forward to share this evidence with the #LongCovid #LongCovidKids international community @MartaEsperti @surf4children

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More from @elisaperego78

10 Feb
.@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
#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.
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
Read 19 tweets
29 Jan
Tomorrow, we are having the first Italian meeting on the long term symptoms and sequelae of #COVID19#LongCovid

A webinar organized with @LongCovidItalia @Zeta_Luiss @Unicatt @MartaEsperti @surf4children

A 🧵 on the main topics we will discuss

#LongCovidItalia
Introduction and moderation by the @Zeta_Luiss journalism team including @angelicamiglio @S_ip411

@WRicciardi @Unicatt and consultant to Minister of Health @robersperanza will discuss #COVID19 epidemiological situation in Italy with W. Malorni @Unicatt Rome

#LongCovid
@MartaEsperti and I will then detail the rise of #LongCovid as a global movement of patient-led advocacy and research, which obtained formal recognition for long covid from the @WHO

@LongCovidSOS @long_covid @apresj20 @CPersistente @apuakoronaan @itsbodypolitic @LongCovidItalia
Read 6 tweets
28 Jan
#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…
⏩ 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
⏩ 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
Read 6 tweets
24 Oct 20
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
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…
Read 4 tweets

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