Thread by @elisaperego78

As an umbrella, #LongCovid refers to the long-term symptoms and sequelae of SARS-CoV-2 infection🧵
You can have delayed pulmonary embolism for sure! We perfectly know cardiovascular and clotting sequelae are key factors in Long Covid, often protracted from the acute phase

https://twitter.com/jakesuett/status/1446145035083333635

It's *crucial*, in my opinion, not to confuse the clinical definition of post-covid condition by the @WHO, or the name PASC, or other non-patient made term with #LongCovid. They aren't synonyms. Long Covid focuses on the long-term disease process from infection onwards

#LongCovid is a sophisticated patient made term. It came into being collectively, via the shared experiences of thousands of people, many of whom are scientists and healthcare professionals. It accounts for both disease development across time and sequelae from acute organ damage

We perfectly know many in #LongCovid have a range of multi-system, multi-organ impairment, which may appear in different moments across the disease course. We know covid can have delayed peaks in severity. It can bring about a huge range of damage across different body systems

I hope the various clinical definitions and terminologies that are not patient-made and patient-driven, aren't used to leave some with #LongCovid beahind because they don't fit a given idea of the condition, developed by those who haven't experienced the disease themselves.

A strength of #LongCovid as a *collectively* made patient concept, is that it builds upon *both* the lived experience of thousands that may have experienced different disease pathways *and* the varied expertise of people with different professional, social and health backgrounds

When thinking collectively about #LongCovid, we variously discussed concepts of disability across different cultures; and shared knowledge about diverse care pathways across the world; while prioritizing mutual support and recognizing individual experiences of disease in covid