An excellent podcast on #LongCovid with @ClareRayner6 talking to @m_maclennan @covidaidcharity
Key points
πŸ‘‰ #longcovidwork is a huge crisis in the making
πŸ‘‰ many people have been out of work for over 1 year
πŸ‘‰ many haven't received any medical assessment at all
πŸ‘‰ some health issues in #LongCovid can be managed with medication etc.
πŸ‘‰ yet, many patients haven't received the necessary treatment
πŸ‘‰ proper adjustment, like flexible work, can help people go back to their job
πŸ‘‰ no support will lead people being pushed out of employment
πŸ‘‰ 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?
πŸ‘‰ compensation will be needed for those who cannot go back to employment
πŸ‘‰ we have an opportunity to push for better work conditions
πŸ‘‰ patient led advocacy and research has been key to identifying #LongCovid and the need of those ill
πŸ‘‰ collaborative work among advocates has put the issue in front of the @WHO
πŸ‘‰ August 2020 meeting with the WHO an important turning point in recognition

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More from @elisaperego78

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

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

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

#LongCovid
Read 4 tweets
7 Jul
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!
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 β€’notβ€’ have commorbities before #COVID19

#LongCovid #apresJ20 #covidpersistente #MitCoronaLeben #koronaoire #LongCovidItalia
Read 6 tweets

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