The Italian ISS @istsupsan shares the first guidelines on #LongCovid

Another step towards the formal recognition of SARS-CoV-2 infection's long term health effects in Italy and worldwide

Thanks to all the researchers, advocates and policy makers that made this possible
I wasn't involved in writing the guidelines and I still need to read the longer version.
Thus, I can't comment on the details.
It's a good step forward, however, that #LongCovid is reaching formal recognition in yet another country. And with the long covid name!
Happy to have contributed to #LongCovid advocacy in Italy and internationally, which contributed to this specific advancement in a single country

Patient led advocacy and research on covid is truly a collective effort, a global phenomenon, and a game changer in this pandemic

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More from @elisaperego78

8 Jul
#LongCovid in Germany 🇩🇪
👉 one of the world's longest follow at 12 months
👉 77% still with symptoms
👉 43% had raised ANA antibodies: potential autoimmune component
👉 ♀️ women more likely to be symptomatic, possibly because of disease's autoimmune component

#apresJ20
Main symptoms included
(percentage of patients)
👉 56% reduced exercise capacity
👉 53% fatigue
👉 39% cognitive impairment (up to, various problems)
👉 37.5% dyspnea
👉 26% sleeping problems

#LongCovid
👉 several neurological symptoms associated with elevation of ANA titres
👉 sample included both hospitalized (32%) and non-hospitalized cases, with slight predominance of females (55%)
👉 significant number of patients had a severely reduced quality of life

#LongCovid
Read 4 tweets
6 Jul
An excellent podcast on #LongCovid with @ClareRayner6 talking to @m_maclennan @covidaidcharity
Key points
👉 #longcovidwork is a huge crisis in the making
👉 many people have been out of work for over 1 year
👉 many haven't received any medical assessment at all
👉 some health issues in #LongCovid can be managed with medication etc.
👉 yet, many patients haven't received the necessary treatment
👉 proper adjustment, like flexible work, can help people go back to their job
👉 no support will lead people being pushed out of employment
👉 there is already a shortage of employees in some sectors: how do we manage with the huge numbers of people with #LongCovid unable to work?
👉 compensation will be needed for those who cannot go back to employment
👉 we have an opportunity to push for better work conditions
Read 4 tweets
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
7 Feb
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
Read 6 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

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