Despite uncertainty, there is hope for long COVID patients

As the world took the news of the pandemic unfolding in early 2020 into its own hands, online discussions between patients who had persistent symptoms after contracting COVID-19 began to crop 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 took him longer than expected to recover with symptoms coming and going.

Other evidence of COVID-19 survivors with similar long-term symptoms has led to support groups popping up on other social media platforms such as Facebook.

To date, the World Health Organization (WHO) estimates that one in 10 people who have had the virus continue to feel unwell after 12 weeks. While the WHO uses the term “post-COVID-19” to describe symptoms that persist after initial infection following contraction of the SARS-CoV-2 virus, their definition states that this condition usually occurs three months after the onset of COVID-19 with symptoms that last at least two months and cannot be explained by another diagnosis.

“I think we are still learning a lot about the long COVID. But we’ve come a long way since the middle of 2020, which is when the long COVID started to get talked about, especially among the patients themselves to begin with. The medical and research community caught up with what was happening, on social media, with patients realizing they were taking a long time to recover and experiencing a wide range of symptoms, months after having a first COVID infection. -19,” says Professor Gail Matthews, Head of Therapeutic Vaccine and Research Program at the Kirby Institute, UNSW Sydney, and infectious disease physician at St Vincent’s Hospital, Sydney.


Read more: What causes long COVID symptoms? Clues under the microscope


Australia’s first long-running COVID study

“The ADAPT study is interesting because we started this research very soon after the start of the pandemic around April 2020 and we were able to get it started quickly thanks to a major collaborative effort within St. Vincent’s Hospital from Sydney. We started tracking people who were infected with COVID-19 at the time, but we didn’t know there was anything like long COVID,” says Professor Matthews.

As the team began to follow their patients, the researchers quickly realized that a portion of those in the study – around 30% of those in community care – were not recovering four months after the treatment. infection.

“And in fact, this group had still not recovered eight months after infection. So this was the first significant recognition of a long COVID occurring in Australia. We have seen similar reports from the United States and the UK, but ADAPT was the first Australian study to very clearly document that this was a problem,” says Professor Matthews.

The most common symptoms exhibited by patients included persistent fatigue; respiratory symptoms such as a persistent cough; shortness of breath, especially in patients hospitalized with pneumonia or in intensive care; brain fog and difficulty concentrating. Some patients have experienced elevated heart rates that have not stabilized.

“But really, there is a whole range of symptoms. In fact, up to 100 different symptoms have been described across the long COVID spectrum. Some of our patients who were very sick when hospitalized with COVID-19 certainly took a long time to recover. It may be because they have scars in their lungs or simply because they were very sick in the hospital. And that’s not too surprising.

“But you also see a lot of people with long COVID, who actually have never been hospitalized. They may have had symptoms at home, but they were cared for in the community. It wasn’t serious enough to go to hospital, but they still have symptoms a few months later,” says Professor Matthews.

“It’s just one piece of a big puzzle. We haven’t found the answer to the long COVID, but what we have found is a signal,” says Professor Gail Matthews. Photo: Richard Freeman/UNSW

Immune cells still activated in long-time COVID patients

The ADAPT study examines a range of different patient outcomes, including neurological function, cardiac function, respiratory function and mental health. But an important find the study revealed was that immune cells were still activated in long COVID patients who still had symptoms.

“Long COVID patients showed abnormal immune signals about eight months after infection. And we wouldn’t expect to see that in someone who has recovered from a viral illness. So this was an important finding, because it showed unequivocally that biologically, people who had long COVID were different from those who had had COVID and fully recovered,” says Professor Matthews.

“It’s just one piece of a big puzzle. We haven’t found the answer to the long COVID, but what we have found is a signal. And what that means is when you have the flu or a viral illness, your immune system kicks in and produces several signals, called cytokines – markers in the blood – that tell your immune system that there is a problem, that there is a virus here. this is often what is responsible for some of the symptoms we experience when we are sick, such as fever or malaise.


Read more: Long COVID, what is it and what do we know about it?


After recovering from a viral illness, the immune system returns to a “resting state”.

“And that’s what we’ve seen in people who have recovered from COVID. But in people who had long COVID, signals from the immune system suggested it was still trying to activate. He was still trying to get rid of something that shouldn’t be there eight months after he had the initial infection,’ says Professor Matthews.

“Certainly at first there was a lot of skepticism that there was a long COVID. And I think a lot of people felt that individuals were just traumatized or just taking time to recover. I think little to bit the public realized that it was a real syndrome and our research helps to prove it by showing it I feel like the public still doesn’t really understand what it is and that’s very understandable because I don’t think we fully understand what it is either.

“The good thing is that we are starting to collect more evidence that vaccination, for example, will definitely reduce your risk of getting long COVID. It is therefore an important public health message for the community.

Dr Anthony Byrne of the long covid clinic in St Vincent

Joint UNSW Associate Professor Anthony Byrne at the new long-term COVID clinic located at St. Vincent’s Hospital. Photo: Richard Freeman/UNSW

Long COVID Clinic

UNSW Joint Associate Professor Anthony Byrne is a clinician at St. Vincent’s Hospital’s new long COVID clinic. “We see about eight patients in the respiratory arm of the clinic and another eight patients in the rehabilitation arm,” he explains. He is grateful to management for having the foresight to set up and establish a new clinic to treat long-term COVID patients.

Each week, A/Prof Byrne attends a multidisciplinary meeting to discuss complex cases. They are considered complex because patients have multiple organs affected by SARS-CoV-2. “We’re lucky here in St. Vincent because we have a lot of experts in a lot of different specialties in our tertiary center. We can refer cardiologists, psychiatrists or immunologists, depending on the main problem. »

Common symptoms he sees in his patients include tiredness, lethargy, tiredness, trouble sleeping and, in those who had a serious initial illness, shortness of breath. “We know that people who have been hospitalized with COVID – usually due to what is called hypoxic respiratory failure, pneumonitis, bilateral pneumonia – are more likely to continue to have shortness of breath,” says A/Prof Byrne .

“But having said that, we also know that there are people who have not had a serious illness who have persistent shortness of breath several weeks and months after COVID. Sometimes we scan their lungs and find reasons why it might be. They may have a kind of mild pneumonitis (inflammation of lung tissue). But sometimes the lungs appear structurally normal, so this may suggest that there are likely nerves that are affected in these patients.

A/Prof Byrne warns that while there will still be people with long COVID for months, and potentially years to come, many researchers have been working hard to better understand this condition.

“We will have a better understanding of different symptoms and specific cytokine abnormalities, which will allow us to better target treatments. So for people who are going through a long period of COVID, we will have an arsenal to treat them.

Dr. Anthony Byrne looks at x-rays on a screen.

“Sometimes the lungs appear structurally normal, which may suggest that nerves are likely affected in these patients,” says Dr. Byrne. Photo: Richard Freeman/UNSW.

A challenge of a lifetime

Professor Matthews says the trajectory of the long COVID and its improvement over time have yet to be fully explored.

“The data suggests that even if you develop long COVID, most people will get better over time. We are 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 health effects.

From a personal perspective, Professor Matthews says the past few years have been difficult. “In a way, it’s been the challenge of a lifetime to work with colleagues nationally and internationally to try to understand the long COVID. It’s fascinating from an infectious disease perspective and it’s is such a fascinating time in history.

“It’s taking a toll, but it’s also a great time to be an infectious disease researcher. Infectious diseases have been with us and have affected humanity since the dawn of time. There have always been enormous challenges for our populations, and this will no doubt continue in the future.

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

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