Inside the nation's new long COVID clinics, top health experts are mastering a new kind of bedside manner.
On the one hand, they're de facto counsellors to patients wanting reassurance while exhibiting symptoms shared with scores of other diseases.
On the other, experts like Dr Anthony Byrne — a senior respiratory physician who is co-leader of the Long COVID Clinic at Sydney's St Vincent's Hospital — are trying to crack the code to treating one of the world's most mysterious new diseases.
"Some of the common symptoms of long COVID are fatigue and poor concentration. Another is memory loss. We know there are [more than] 200 symptoms that have been attributed to long COVID, so that's complicated," Dr Byrne says.
"It's not necessarily that the virus spreads everywhere else in the body, but the effect of the immune system trying to get rid of the virus in the respiratory tract and the lungs is resulting in this collateral damage.
"One of the things that's really important for a physician is to be confident about the way you're managing a condition. But that's a problem for a new condition that people don't have experience in."
What is long COVID and who is at risk?
Long COVID is slowly becoming better understood.
The most-prevalent definition — used by the World Health Organization — identifies it as a post-COVID illness, usually occurring within three months of the onset of the disease, with symptoms that last at least two months.
"We know there are risk factors for long COVID. Being female doubles your risk of long COVID. Older age is a risk factor," Dr Byrne says.
"The more symptoms you have when you're acutely diagnosed with COVID, the higher the risk.
"The magic number is five. So, if you have more than five symptoms: fever, runny nose, sore throat, chest pain, breathlessness, aches and pains — you've got more symptoms and more risk."
It's thought about one-in-10 people with acute COVID-19 symptoms go on to develop long COVID and there may be far more, according to Professor Jason Kovacic, a senior cardiologist at St Vincent's Hospital and executive director of Sydney's Victor Chang Cardiac Research Institute..
"It's possible that the long COVID clinics are seeing all the worst patients and the outliers. But, I think, there is still a significant burden of people out there with long COVID with significant problems," Professor Kovacic says.
"It isn't something we can ignore."
The latest easing of restrictions this week means Australians have been granted freedoms they haven't had since early 2020.
"Certainly, from the perspective of deaths and ICU admissions, the pandemic seems to be heading in a really great direction," Professor Kovacic says.
"But we're left with a really significant burden of people with COVID, and we have no specific treatments for them."
Researchers are beginning to identify biomarkers
The holy grail for researchers is to identify the risk factors before the onset of disease.
"What we're getting a better understanding of is the biomarkers. If you could actually just do a blood test and say, 'Look, you're at risk of long COVID and therefore you should do X, Y, Z to reduce your risk' — that's the dream," Dr Byrne says.
However, existing tests are already turning up unexpected results.
"It may be that we find a condition a patient didn't know they had. They might have diabetes, asthma or sleep apnoea," Dr Byrne says.
"We've certainly helped a lot of people — approaching 300. But there's another 300 waiting."
Not all the predictors of long COVID may be sealed in fate.
A recent study by Harvard University found that stress is also a major risk factor.
"So, in other words, if you're just unlucky enough to get COVID at a time when you're stressed, stuff is going on, and you're anxious, then that is a risk factor for going on to develop long COVID," Dr Byrne says.
"One of the things we are seeing is a lot of high-achievers: people who are doing 100 things — and then they get COVID, and they completely decompensate. They can't do stuff. It's made worse by the expectation that they should be able to run a marathon and can't."
Doctors don't yet have all the answers
As long as a cure is out of reach, doctors are conscious of managing patients' expectations. But research is continuing, including that being done by Professor Gail Matthews, who is St Vincent's head of infectious diseases and one of the lead investigators of the pioneering ADAPT study into long COVID.
"Certainly, at two years, there are still some people who are symptomatic," Professor Matthews says.
"I think we firstly have to acknowledge that we don't have all the answers.
"We can say that most people do have some improvement, particularly if they're well supported by their general practitioners. Physiotherapists are very important. Psychologists are very important.
"So, if patients can access those kinds of supports, they will certainly see improvement in their wellbeing."
