Despite the uncertainty, there is hope for long COVID patients

“I think we're still learning a lot about long COVID. But we've come a long way from where we were in mid-2020," says Professor Gail Matthews. Credit: Richard Freeman/UNSW.

It’s estimated one in 10 people infected with SARS-CoV-2 will have lingering symptoms, but most people will improve over time.

As the world came to grips with the news of the pandemic unfolding in early 2020, online chatter among patients who were experiencing lingering symptoms after contracting COVID-19 began to spring up on social media.

The term ‘long COVID’ was first used by Dr Elisa Perego in Lombardy, Italy as a Twitter hashtag in May 2020 to describe her experience of COVID-19 infection as cyclical, progressive, and multiphasic.

In other words, it was taking longer than anticipated for her to recover with symptoms that would come and go.

Further evidence of COVID-19 survivors experiencing similar long-term symptoms resulted in support groups popping up on other social media platforms such as Facebook.

To date, the World Health Organisation (WHO) estimates one in 10 people who have had the virus continues to feel unwell after 12 weeks.

While the WHO uses the term ‘post-COVID-19′ to describe lingering symptoms after initial infection from contracting the SARS-CoV-2 virus, their definition states this condition occurs usually three months from the onset of COVID-19 with symptoms that last for at least two months and cannot be explained by an alternative diagnosis.

“I think we’re still learning a lot about long COVID. But we’ve come a long way from where we were in mid-2020, which is when long COVID first started to be talked about especially among patients themselves to start off with.

The medical and research community caught up with what was going on, on social media, with patients realising they were taking a long time to recover, and experiencing a wide range of symptoms, some months after having an initial COVID-19 infection,” explains Professor Gail Matthews who is head of the Therapeutic Vaccine and Research Program at the Kirby Institute, UNSW Sydney and an Infectious Diseases physician at St Vincent’s Hospital, Sydney.

Prof Matthews says the trajectory of long COVID and how it improves over time is still to be fully explored.

“The data suggests that even if you develop long COVID, most people will improve over time. We’re about to do a two-year follow up of people who were infected in March 2020 and what we hope to see is that most people have recovered without significant long term impacts to their health.”

From a personal perspective, Prof Matthews says the last few years have been challenging.

“In some ways, it’s the challenge of a lifetime to work with colleagues nationally and internationally to try and understand long COVID. It’s fascinating from an infectious disease perspective and such a fascinating period in history.”

“It does take its toll, but it’s also an amazing time to be an infectious disease researcher. Infectious diseases have been with us and affecting humanity since the start of time. There have always been huge challenges to our populations, and this will continue to be so undoubtedly into the future.”

Referring to the height of the HIV/AIDS epidemic, Prof Matthews reminds us we have come a long way. “I think the great thing about infectious diseases, from my perspective, is that we are making huge strides in our understanding of how to manage chronic infections successfully such as with HIV, and even cure others as with hepatitis C.”

There is hope.

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