Thread by @elisaperego78

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

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

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…

The movement was initially born independently in different countries with people that coalesced around hashtags like #apresJ20, #covidpersistente #koronaoire #longhaulers, and #MildCovid to contest the "mildness" of Covid in early, erroneous guidelines

By May 2020 #LongCovid was an established phenomenon. Many of the early advocates and patient-researchers were to lead the effort that brought to formal recognition from the @WHO in August 2020

The earliest reports and peer-reviewed publications to openly addressed #LongCovid were by patient-researchers in 2020. These papers clearly addressed critical issues like cardiovascular disease, sequelae following asymptomatic/pauci-symptomatic covid, and viral persistence

I add here, for example, this research letter by co-authors and I from 2020. You can see clearly stated how grave #LongCovid is, and how the danger was fully already understood:

"the personal, economic and social costs of Long Covid are unfathomable"

wellcomeopenresearch.org/articles/5-224

It is fundamental policy makers fully admit to the erroneous gamble they made by letting SARS-CoV-2 spread. We knew already by early to mid 2020 #LongCovid was a catastrophe in the making. Publications lagged a bit beahind as people were too ill to formally author

But online data shared on Twitter and social media like Facebook, already in early-to-mid 2020 underlined cardiovascular disease, severe pulmonary involvement, neurological symptoms, prolonged desaturation, severe gastrointestinal symptoms, and emergency visists
#LongCovid

In one of the earliest publications on prolonged symptoms in the world on 8 May 2020 @felicitycallard, for example, contested how wrong was defining covid as "mild"

#LongCovid

somatosphere.net/2020/mild-covi…

In a @bmj_latest paper from December 2020 @DocAmali underlines the need to properly screen for severe pathology in #LongCovid including myocarditis and thromboembolism, or the sequelae of such events experienced in acute covid with no care

bmj.com/content/371/bm…

In this piece from early 2021, @felicitycallard and I show how patient-led research in #LongCovid in early 2020, reshaped our understanding of covid and knowledge building in medicine.

osf.io/preprints/soca…

Every single hypothesis, piece of evidence, and biomarker shared by patients with the online community and the world from early 2020 onwards, was later confirmed by formal, large-scale biomedical studies [new updated version hopefully out soon]

#LongCovid