Video Transcript (Audio as Text)

Why is it Called Long COVID?

Different terms have been used to describe the longer-term symptoms and effects of COVID-19. Early reports of COVID-19 focused on hospitalised patients with often severe respiratory symptoms. People who were not hospitalised were told they would recover quickly. But, this did not happen for lots of people, so in the first months of the pandemic patients, or long haulers, made the term “Long COVID”. This described a longer, more complex course of illness including after so-called “mild” initial infection.

The term Long COVID therefore challenged early clinical and policy assumptions about disease severity and recovery from COVID-19, which resulted in the wider scientific community acknowledging that COVID-19 can cause prolonged illness.

Other terms have been used, including Post COVID-19 Syndrome and Post-COVID Condition. Much work and thought has gone into different terminology. However, many people living with and affected by the longer-term consequences of COVID-19, prefer the term Long COVID. So why use the term Long COVID? 

Long COVID does not assume the causes, experiences of symptoms and impacts over time, or best ways to recover, are known. Long COVID makes it clear that not being admitted to hospital with COVID-19 is not necessarily mild, with often severe disease and disability emerging much later after infection. Long COVID avoids the words “chronic”, “post” or “syndrome” which may invalidate or minimise people's suffering. Long COVID also draws attention to the millions around the world who have not returned to their normal functioning and health since COVID-19 infection. Therefore Long COVID centres people with disability, including people with new or different disability experiences. As a patient-made term, Long COVID also calls for patient expertise and knowledge to be meaningfully included in all responses.  

In the next video, we will talk about common Long COVID symptoms