Inside Australia’s first long COVID clinic

Sam Hawley : Hi, I’m Sam Hawley, coming to you from Gadigal Land. This is ABC News Daily. Three years into the pandemic, most of us have had at least one bout of COVID experiencing various degrees of illness. It’s usually not that pleasant, but we recover. But for hundreds of thousands of Australians, the symptoms can last for months. Today we visit a long COVID clinic that’s so busy it’s having to turn away some patients suffering from the condition.

Anthony Byrne: So this is the front desk and this is Dina,

Sam Hawley : Some patients are in there. Yeah.

Anthony Byrne: And then in here we’ve got Ellie, who’s our amazing clinical nurse specialist, and She’s got someone in there.

Anthony Byrne: She’s got someone in there now.

Anthony Byrne: So my name is Associate Professor Anthony Byrne. I’m a respiratory physician that works here at Saint Vincent’s and the co-lead of the long COVID clinic.

Sam Hawley : And we’re going to talk to one of your patients in a minute. But just give me a sense of how busy since you’ve opened has it been the first year.

Anthony Byrne: Really busy,so you would say that, you know, we were oversubscribed, that we had hundreds of patients that were referred by general practitioners. They all need to have a GP referral, as would be the case for every specialist review. We had the capacity to see sort of 6 to 8 patients in the morning here in the clinic and then sort of a similar thing on a Wednesday and then we operate that every week. If you do the maths, there’s a limited number of patients that you can see each week and each month and if you’ve got hundreds of referrals, then they need to be triaged. And that’s incredibly frustrating, you could imagine for patients.

Sam Hawley : Just tell me more about that triage then. What are the symptoms that they need to be showing to actually get in?

Anthony Byrne: Look, everyone’s worthy and every patient’s different. There are common symptoms, the top three would be fatigue and lethargy, brain fog. You know, there’s cognitive dysfunction, chest symptoms like breathlessness, chest pain and then there’s other ones like post-exertional fatigue. So they, you know, they do something, go for a walk for 20 minutes and then they’re just bunged up for the next two days. We’ve done an analysis on the patients that we’ve seen and we’ve seen hundreds of patients over the past nearly one year and mainly they’re everyone from 16 years to over 80, but on average 30 to 40 year olds. And on average, they’re people that are not able to work or do their usual activities, you know, mainly work because of these symptoms, so they’re really struggling.

Sam Hawley : So how do you diagnose long COVID then, or is it diagnosable?

Anthony Byrne: Yeah, look, it’s actually quite simple to diagnose in a sense, because there’s a definition, there’s different definitions. But the definition is that there’s persistence of symptoms beyond 12 weeks, someone’s had COVID and they’ve got ongoing symptoms that weren’t there before or they’re worse now. So that for a GP should be quite simple, the GP knows the patient and the patient can tell you if they’re worse or not. But the other important thing is are these symptoms explained by something else? And what we try and do actually in our management and investigation of long COVID patients is that we look to diagnose those co-morbid conditions that the patient might not be aware of, you know, sleep apnoea, depression, asthma and we know how to treat those things. And so we can give treatment for those co-morbid conditions that might have been undiagnosed and in so doing the patient will get better. But we also look at this holistically, one of the big reasons for having rehabilitation physicians is because it’s very much rehabilitation. It’s getting back to work in that that is, you know, putting a label on it saying, yes, this is long COVID for your employer, you’ve got long COVID. You are we’ve done a medical assessment. It’s very clear that you cannot work full time in your usual role. So doing all of that is very practical and useful, even though it’s not his take this pill to fix long COVID.

Sam Hawley : Yeah. So you’re diagnosing it. That’s not fixing it. Is it fixable?

Anthony Byrne: It’s both. It’s both diagnosing, putting a, you know, an official label that, yes, this is long COVID, but how much is long COVID and how much are other things and how much of the other things can we diagnose and manage and in so doing, improve your overall condition, which is obviously what we’re trying to do. And most most people’s trajectory is one of improvement. But it’s, you know, the word that we use is glacial, like it’s really slow and it’s up and down. So but most of the patients will have an improvement over 12 months. Okay.

Sam Hawley : Tell me you’ve just been with Paul this morning. And we’re going to talk to him in a minute, But give me a sense of his treatment then, just so I’ve got an idea of what you actually do day in, day out with people like Paul.

So Paul’s not he’s a not an uncommon patient that we’d see. So Paul’s a guy that is a gentleman with, you know, long COVID. He’d had a diagnosis of long COVID made now over a year ago. He unfortunately suffered ongoing debilitating symptoms of breathlessness and chest pain as well as fatigue and sort of this brain fog. So pretty classical, top three. You know, he had some symptoms and some lung function that was in keeping with an asthma type picture. And it wasn’t simple asthma and he’d never had asthma, but he had symptoms of asthma and lung function, changes of asthma. So, you know, to put it simply, if it walks like a duck and quacks like a duck, it’s probably a duck. So why not give him treatment for asthma, which is what we did. And so we put in place a management plan for his asthma and some additional investigations, a letter back to the GP, which was really important. So his lung function is dramatically better so he can blow out more than a litre in one second more than what he could four months ago.

Sam Hawley : Yeah. All right. So should we go and find Paul? and talk to him. I think that would be useful. Okay.

Anthony Byrne: Um, so, Hello Paul yeah, this is Samantha. Yeah. Hi.

Sam Hawley : I’m Sam from the ABC. Nice to meet you. Yeah, nice to meet you as well. All right. Do you want to sit down or. Yeah, I can just sit here. I mean, when did you first realise that there was something not quite right going on with you?

Paul : I think it was about four weeks after I became ill and my partner had recovered and I still feeling terrible. I was suspicious then, but after a couple of months I realised it was a real problem.

Sam Hawley : What was it? What was happening to you?

Paul : Constantly tired, Constantly getting headaches, terrible memory, aches and pains. The fatigue was the most tedious part.

Sam Hawley : Fatigue, as in you couldn’t get up out of bed or what? Just describe that fatigue for me.

Paul : I could get up out of bed, by the time I’d showered and got dressed, I felt like I needed to go back to bed.

Sam Hawley : Yeah. So how long far are you in now?

Paul : 13 months.

Sam Hawley : It’s obviously deeply affected the way you live.

Paul : Look, it is very hard. I don’t try not to think too much about it because it doesn’t do much good because you’re thinking about it doesn’t make it go away, but it makes you a lot less active. I just couldn’t do things, you know, when I couldn’t go on outings and I had to just take it easy a lot more. And it’s very frustrating because you look fine. And my friends would say, you look 100% you look really well, but when you’re unable to go too far without feeling exhausted, that’s boring.

Sam Hawley : The clinic is so busy, isn’t it?

Paul : It’s just. It’s incredibly busy. Yeah. Yeah, it’s very hard on the staff. Yeah. I have to say, I’m astonished the government hasn’t funded long COVID clinics all over the place because there must be people. If I had to work physically, I wouldn’t have been working for 6 to 8 months, at least, maybe longer and that would have been pretty devastating.

Sam Hawley : All right, Paul, thank you so much. You’re welcome. I appreciate it.

Are you getting better already at treating this?

Anthony Byrne: I think we’re getting more experienced. I think there’s an upskilling that needs to occur and training that needs to occur. And even with our very experienced psychologists and physiotherapists that have come from a pain, chronic pain, you know, space to then transfer to a long COVID space involves sort of on the job training. Essentially, if the GP’s are going to do this and I think they need to do this, they need to be trained in how to do it and they need to have the appropriate models of care to do it because you can’t evaluate a long COVID patient and do all those things in five minutes. It doesn’t work. It’s criminal to think that after all this experience that we don’t have clarity from the state and federal government about what’s happening with long COVID clinics in New South Wales or elsewhere. So in terms of, you know, are we still going to be operational in a year’s time or two years time? And we would hope so, but we don’t have that in writing.

Sam Hawley : It’s not going away. There is a parliamentary inquiry into this, so obviously you’d be lobbying them. We need this. This is not something that’s going to go, is it?

Anthony Byrne: I don’t think you’ll hear any scientist or doctor talking about elimination of COVID right now. So it’s not dissimilar to HIV. 40 years ago, you know, that was a new virus and global pandemic. And here we are now. We’ve got a lot less HIV, we’ve got a lot of tools, but there’s still people with debilitating chronic symptoms after HIV. So, you know, it’s a similar thing.

Sam Hawley : Paul is a long COVID sufferer. Associate Professor Anthony Byrne is a respiratory physician at Saint Vincent’s Hospital in Sydney and the co-leader of the long COVID clinic there. Australian adults are now being offered a fifth COVID 19 vaccine. We had a look at why it’s time to stop counting COVID shots on February the 9th, and that episode is in your feet. This episode was produced by Flint Duxfield Chris Dengate and Sam Dunn, who also did the mix. Our supervising producer is Stephen Smiley. I’m Sam Hawley. Thanks for listening.