More than two years after the COVID-19 pandemic emerged, health systems around the world are grappling with its sequel, long COVID, a chronic condition with similarities to chronic fatigue that has affected millions of people globally. Here, InMotion looks at long COVID and the role of physiotherapists in treating it.

What exactly is long COVID?

Early in the COVID-19 pandemic, doctors and patients noticed that some people were left with lingering symptoms long after the infection had passed. It wasn’t only the severely ill patients, either.

Many people whose COVID-19 symptoms were relatively mild experienced ongoing fatigue, shortness of breath, cognitive issues and other symptoms.

Long COVID has since been officially recognised by the World Health Organization.

Estimates of the number of people with long COVID vary widely, ranging from two to 30 per cent, potentially a significant proportion of the infected population.

Given that to date Australia has had more than 9.6 million cases, this suggests that hundreds of thousands of people in Australia alone may have some ongoing symptoms after recovering from COVID-19.

While vaccination reduces the risk of long COVID, it doesn’t prevent it, and there is evidence that reinfection increases the risk of long-term symptoms.

Even among long COVID patients there is a considerable difference in symptoms. The major ones include fatigue and shortness of breath, both exacerbated by exercise or exertion, and cognitive issues, commonly known as brain fog.

COVID-19 can also worsen existing conditions and comorbidities, which may complicate diagnosis.

‘Long COVID is not necessarily related to severity requiring hospitalisation.

'It could be anyone who got COVID-19. Sometimes it’s the people who got COVID-19 more mildly. We have a lot to learn in that space,’ says Jennifer Alison APAM, Professor of Respiratory Physiotherapy at the University of Sydney.

Patients who have been in the intensive care unit may also suffer from a condition known as post-intensive care syndrome.

Professor Carol Hodgson APAM FACP, Head of the Division of Clinical Trials and Cohort Studies, School of Public Health and Preventive Medicine, Monash University and an intensive care unit physiotherapist at the Alfred Hospital, has been looking at the recovery of critically ill patients with and without COVID-19.

Professor Carol Hodgson.

‘We know that with acute respiratory failure, lots of patients have ongoing problems, in part due to an inflammatory reaction through the whole body.

'It affects their lungs and their muscles and they become very weak. It can also affect their mental health,’ Carol says.

‘We’ve been looking at whether there are differences between recovery in critically ill patients with and without COVID-19 and post-intensive care syndrome in terms of disability— psychological, cognitive or physical function—and we can’t see any difference. However the survivors of COVID-19 report some symptoms that are quite unique.’

Her research has shown that around a third of patients who have been severely ill with COVID-19 have ongoing disability at six months after they recover from the acute disease.

‘The COVID-19 patients have a bigger change in their health-related quality of life and in their disability scores from baseline.

'They really do have a new impact of disability that is different from some of our other critically ill patients,’ she says.

Helping patients find appropriate care

Like others around the world, Australia’s health system is grappling with long COVID.

In New South Wales, Victoria, South Australia and the Australian Capital Territory, long COVID clinics are being set up, usually in association with local health districts and hospitals, to assist with following up patients who have symptoms of long COVID and helping them to find and access suitable treatments.

Physiotherapy, along with other allied health professions, is proving to be an integral part of the rehabilitation process.

Jennifer’s involvement with COVID-19 started early in the pandemic, as COVID-19-positive travellers entered Australia on international flights and cruise ships.

In her role as Professor of Allied Health for Sydney Local Health District, she assisted with managing patients in quarantine hotels in Sydney.

She has also been involved in developing clinical guidelines for COVID-19 care.

More recently, she helped set up the long COVID clinic at the Royal Prince Alfred Hospital in Sydney and is running a rehabilitation research project in the post-COVID Respiratory Clinic.

She says the most important role of the post-COVID-19 clinics is to ensure that people with long COVID get the help they need, whether that is pulmonary rehabilitation, neuro rehabilitation or other assistance.

In New South Wales, patients access the long COVID clinic through their GPs.

‘There’s a post-COVID-19 functional scale that we’ve asked GPs to use to assess those patients.

'If it indicates that they’re not functioning all that well, they should be referred to the long COVID clinic where they’ll be triaged and then seen by the clinic’s rehab physicians and the multidisciplinary team,’ Jennifer says.

Physiotherapists play an important role in the clinic, she notes, ensuring that any rehabilitation is appropriate for each patient and listening to the patient’s responses to exercise- based rehabilitation, especially symptoms of fatigue.

In Victoria, Monash University’s Professor of Physiotherapy Anne Holland has also been closely involved in the COVID-19 response.

She established the post-COVID-19 follow-up service at Alfred Health, which routinely screens patients in the Alfred Health service who have been monitored at home or admitted to hospital with COVID-19, about two months after they were diagnosed with COVID-19.

‘We look at typical COVID-19-related persistent symptoms like shortness of breath, fatigue, anxiety, depression and post-traumatic stress disorder.

'We look at symptoms of cognitive changes—memory, concentration and brain fog—and ask about things like weight loss and return to work,’ Anne says.

For patients who have symptoms of long COVID, the next step is a thorough medical assessment to ensure that there are no other conditions present that might explain the symptoms.

COVID-19 can exacerbate existing chronic conditions and has been implicated in triggering chronic diseases in previously healthy individuals, including heart disease and diabetes.

‘We need to make sure there’s nothing else that could explain those symptoms,’ Anne says.

‘Most patients will go through assessment by our general medicine physicians because their expertise is in people with complex medical conditions and difficult symptoms.

'People with respiratory symptoms will go through a respiratory clinic; patients with ongoing cardiac symptoms or symptoms of autonomic dysfunction might go through cardiology.

'Once that’s done, we can decide what sort of supportive care or rehabilitation a patient might need.’

Professor Anne Holland.

Anne says that due to the variability of long COVID, each patient will have different needs, ranging from information and education on self-management of symptoms to intensive rehabilitation and support from a multidisciplinary team of clinicians.

‘Some patients will have physical rehabilitation needs, which can be addressed by physiotherapy and exercise-based rehabilitation.

'They might need pacing and advice about a gentle return to activity. There are patients with pulmonary rehabilitation needs.

'There can be a need for things like management of musculoskeletal pain and a small number of patients need management of dysfunctional breathing,’ Anne says.

‘The challenge that everybody across the world is facing is how to get the right patient to the right place and along the right pathway to make sure they’re getting what they need.’

The good news is that many of the symptoms of long COVID improve over time.

 ‘We’ve done some follow-up at six and 12 months—not large numbers, but some—and it looks like the number of people with persistent symptoms is about half of what it was at two or three months.

'In most people it gets better, but there is a small group of people with symptoms that seem very persistent, regardless of the underlying severity of acute COVID-19 infection,’ says Anne.

The ongoing symptoms can be incredibly distressing for patients and their families, say both Anne and Carol, especially if the patient is unable to go back to work.

‘It’s important for physios to note that they’ll very much be dealing with the family and the support system around the person who’s unwell.

'We know from our other studies that people recover more quickly if they feel that they’re in a supportive environment.

'Anything you can do to support the family is very important for the patient with long COVID,’ says Carol.

Adapting rehab techniques to help long COVID patients

The choice of rehabilitation methods for COVID-19 patients depends on their symptoms.

Respiratory physiotherapists have been involved in patient care since the beginning of the pandemic and play a huge role in helping acute COVID-19 patients as well as working with patients during the post-acute stage.

‘Breathlessness and fatigue are two of the big symptoms as people recover from COVID-19 and they’re symptoms that may be managed well in pulmonary rehab.

'The important thing is that we need to make sure that those symptoms are not due to other things,’ says Jennifer.

David Putrino is an Australian physiotherapist and researcher with a focus on neurological rehabilitation for people with conditions including dysautonomia and postural orthostatic tachycardia syndrome.

Based in the USA, he is an assistant professor at the Icahn School of Medicine, part of the Mount Sinai Health System in New York.

Prior to COVID-19, he and his team developed an app for remote patient monitoring, used by patients with neurological conditions.

‘When COVID-19 hit New York and things were pretty bad, we mobilised the team to do home monitoring for people with acute COVID-19, as there wasn’t a lot of support for individuals with acute COVID-19 at the time.

'We didn’t know anything about COVID-19 when we started in March 2020; we were learning as we went,’ David says.

Within a short time, the team was monitoring a few thousand patients in the Mount Sinai Health System. David says that over the next couple of months, it became clear that 10 to 15 per cent of patients being monitored were staying on the app and reporting new symptoms, well after the acute infection had passed.

‘They started reporting extreme fatigue, post-exertional symptom exacerbation, heart rate variations and heart palpitations, cognitive issues, gastrointestinal symptoms, headache, you name it—all of the symptoms that we now have been able to cluster together as long COVID.

'It was very evident to us that the symptoms were consistent,’ he says.

David and his team started looking at post-infection chronic diseases, including chronic fatigue syndrome and Lyme disease, to figure out what was happening to these patients and to come up with rehabilitation strategies.

The similarity in symptoms—fatigue, dizziness, tachycardia and exercise exacerbation—to some neurological conditions, including dysautonomia and postural orthostatic tachycardia syndrome, led them to adapt strategies initially developed for autonomic rehabilitation.

‘We stuck to our strength, which was neuro rehab.

'We thought about the patients we were treating with autonomic rehabilitation for postural orthostatic tachycardia syndrome and dysautonomia and that became our baseline.

'We’ve learned a lot over the past couple of years about long COVID and we continue to learn,’ David says.

His program of autonomic rehabilitation focuses on teaching patients physiological breathing techniques to calm down the autonomic nervous system and increase carbon dioxide levels.

Through simple exercises, the program aims to slowly improve fatigue and exercise intolerance.

‘Over a three-month period we see a 50 per cent reduction in fatigue and an almost two times increase in gait speed using the 10-metre walk test,’ David says.

‘The majority of our patients are still reporting symptoms; they’re just also reporting improved function, improved quality of life and improvements in the severity of their symptoms.

'The only conclusion that we’re comfortable making right now is that autonomic rehabilitation eases the symptoms of long COVID.

'There’s still underlying pathology occurring that needs to be addressed with something else.

'There are various theories about the underlying cause of long COVID and some or all of them may end up being correct.

'Chronic inflammation, autoimmune disease, micro blood clots and persistent virus particles are all possible triggers for the syndrome.'

In fact, it may turn out that long COVID is actually a collection of post-viral diseases.

David hopes that by teasing out the subsets of long COVID and treating the underlying physiological impairment, more patients can be helped.

‘Right now, physio, when properly applied, is instrumental in symptom relief.

'This is crucial for the 50 per cent of our patients who have had to change their employment status.

'If we can get that 50 per cent back to work with careful rehab that addresses their most prominent symptoms, that’s a huge help while we’re looking for a cure,’ David says.

Associate Professor Dale Edgar.

Western Australian physiotherapist Associate Professor Dale Edgar better known for his work with burns patients, says that the massive systemic inflammatory response that many patients have to COVID-19 is similar to the systemic inflammation experienced by burns patients.

‘When we’ve looked at burn injury, whichever system we’ve looked at—cardiac, neuro and so on—there is an increased risk of ongoing disease.

'There’s also an increased risk of more severe disease if you develop those sorts of things compared to people who haven’t had a burn.

'We’re interested in whether that same pattern occurs at the back end of COVID-19,’ Dale says.

Dale’s team will soon publish the results of the LATER-19 study, a longitudinal study comparing the physical and mental health of COVID-19 patients with controls who had non-COVID-19 respiratory illnesses over the acute phase of their illness and then at three time points up to 12 months after infection.

The cohort included both hospitalised patients and those with milder symptoms.

He says that early analysis shows the presence of long-term physical impairments in a subset of COVID-19 patients compared to the controls as well as strong indications that more severely ill patients may have post- traumatic stress disorder.

What do physios need to know about long COVID?

While physiotherapists who work within the hospital, rehabilitation and aged care sectors have borne much of the long COVID load to date, the sheer number of people with long COVID means that physiotherapists in private practice are increasingly likely to see patients with long COVID symptoms, whether they are clients returning to regular treatment following a bout of COVID-19 or new patients.

First and foremost, says Jennifer, physiotherapists need to be aware of the most prevalent symptoms, including breathlessness, fatigue and tachycardia.

‘Physiotherapists who are treating patients for conditions other than long COVID need to know that people could be having those issues and to take that into account with the exercises or the rehabilitation or the treatments that they’re giving them.

'It’s important for private practitioners to recognise the impact of the continuing symptoms on the person’s life and on their participation in the treatment regimen that the physiotherapist prescribes,’ Jennifer says.

Physiotherapists should also be aware that the symptoms of long COVID come and go.

‘They feel all right for a while and then it all comes back. That’s where people think it’s all in their head, but it’s well recognised that the symptoms can fluctuate,’ says Jennifer.

Anne and Carol agree that all physiotherapists need to educate themselves on long COVID.

‘As physios, we need to have a basic level of understanding about what it looks like as well as what we can offer as physiotherapists that might be helpful.

'We need to know the limits of our expertise, when onward referral is needed and what the pathways for that might be.

'Providing patients with accurate information and support is important as well,’ Anne says.

‘Setting realistic expectations is part of that because what we provide at the moment is supportive care and rehab.

'There are no specific treatments yet for long COVID, so at this point it’s essentially managing a chronic disease.

'People should expect to improve over time, because that’s what happens to most people, but often it is quite a slow process.’

Living with long COVID: a personal account

APA President Scott Willis caught COVID-19 in the early stages of the pandemic.

While his symptoms during the acute phase were moderate, he has lived with long COVID ever since. Here he describes what it’s like.

'In April 2020, I was an inpatient at North West Regional Hospital here in Burnie, Tasmania, at the same time as a passenger from the Ruby Princess.

'Along with 220 other patients and staff, I contracted COVID-19.

'I wasn’t that sick, more fatigued, with a cough and loss of taste and smell, lasting for about 10 days.

'I was lucky that my symptoms were not too bad and I had great support from everyone within the APA and in the physiotherapy and broader health professions.

'The scary thing for me was not knowing what the impact of contracting COVID-19 would be on my business and personal life in a small rural area where everyone knows you had it.

'I remember many health professionals being verbally abused for shopping because they had been working in a hospital where COVID-19 was.

'Some of my health colleagues were very sick; they were hospitalised and ventilated.

APA President Scott Willis.

About six months later, I still had periods of fatigue or malaise but I thought I needed to recover my fitness.

'I was swimming one day, turned to do another lap and lost all power and strength—I thought I was going to drown.

'I am a very competent swimmer and I had never felt like this before. I even had trouble getting myself out of the pool.

'For the next few days, I was fatigued, with no energy, and I started to think that something was not right.

'My long COVID symptoms have continued since then. Even now, I have episodes if I push myself too hard and I suffer from intermittent fatigue and malaise.

'It fluctuates depending on my physical load, so if I exercise at a high intensity or for a longer duration, then I need to take it easy for the next day or so.

'If I have to push, pull or carry a load for a distance or upstairs, then I get quite short of breath and will need to rest for a minute.

'I now have a pretty good understanding of what triggers it and what signs to watch out for and I have learned some strategies to reduce the impact.

'When I swim, I know to within five seconds when it’s time to get out of the pool because if I go over that point, I suffer later.

'Sometimes I can do two kilometres in the pool and feel fine and other days I can only do one kilometre.

More importantly, I know that the symptoms don’t last for too long. I just have to listen to my body, take things slowly and rest when I need to.

'I attempt to exercise daily, whether swimming, walking, doing Pilates or even going for a run if I can.

'As I tell my patients, it’s all about finding a balance between physical activity and rest, pacing and recovery.

'I am so lucky that I can live a near normal life; many others can’t.

'It is not like a fitness issue where you can push past that point and you get better—I have tried that on numerous occasions but it didn’t end well.

'Workwise, I try to have a few more admin spots in my schedule just in case I need them, but luckily it hasn’t affected this much at all.

'The positive side of my diagnosis is that I can use my personal experience to assist other patients, advocate for the profession to be involved and advise the government on what needs to be done to reduce the impact on the country and the health system.'