Everything you wanted to know about long COVID

What is long COVID and are you at risk?

21 September 2021

Long COVID has affected millions of people around the world with symptoms ranging from extreme fatigue to chest pain and heart palpitations. As cases continue to rise in Australia and COVID-19 looks set to be with us for many years to come, world-leading long COVID expert, Dr David Putrino sits down with the Institute’s Professor Jason Kovacic to answer the questions everyone needs to know.

Dr David Putrino, the Director of Rehabilitation Innovation at the Mount Sinai Health System, explains what he’s seeing at his clinic in New York, and what lessons we can learn from what is being played out overseas. His number one message is to avoid getting COVID-19 in the first place and to get vaccinated.

Update 25 Nov 2021: Information from this article was accurate at the time of publishing and reflected the rules/advice announced by governing bodies at that time.

Full Interview Transcript

Professor Jason Kovacic (JK): David, welcome, it’s just fantastic to have the opportunity to talk to you today about long COVID. Australia has been focused on vaccinations and outbreaks, but we are now transitioning to focus on the long-term consequences of COVID-19.

What is long COVID?

Dr. David Putrino (DP): Long COVID is an umbrella term that really helps us to understand anybody who's having persistent symptoms after their initial COVID-19 infection.

Now this long COVID ranges. There are individuals who had significant organ damage as a result of their COVID-19 infection and are now having persistent symptoms as we work to rehabilitate them. There are also individuals who are experiencing a novel post-viral syndrome, which has been really challenging to manage and treat effectively. And we're seeing this novel post-viral syndrome in around 10 to 15% of individuals who had COVID, but not necessarily hospitalised cases of COVID-19. So this is present in individuals who got quite sick, but remained out of the hospital and in some cases, only had mild symptoms, but now went on to develop quite severe and debilitating post-viral symptoms.

What are the most common symptoms of long COVID?

DP: The most common symptom that we're seeing is extreme fatigue. Individuals who are experiencing long COVID really can’t get through their day, they have extremely debilitating fatigue.

In addition to fatigue, we're seeing post-exertional symptom exacerbation, which is any sort of physical, cognitive or emotional activity that can cause symptoms to flare. We see shortness of breath, chest pain, heart palpitations. We see tingling and pain and numbness down the arms. Those are some of the more common symptoms which 60 to 80% of patients are experiencing.

In addition to these, there's a wide variety of symptoms that range from persistent headaches to skin rashes, to changes in the menstrual cycle for women, to basically anything and everything that you can think of that is under autonomic nervous system control.

This autonomic nervous system is the part of the nervous system that you don't need to tell what to do. It’s just keeping your body in equilibrium. That involves sweating, that involves feeling hot, feeling cold, feeling pain, and different sensations. This whole system gets thrown out of whack. And so we see a broad variety of very unusual symptoms emerging in patients in unpredictable ways.

There seems to be a lot of overlap with the features of chronic fatigue syndrome (CFS) with long COVID?

DP: I think that at this point, the similarities between the two can't be denied. I would stop short of saying that they are one and the same, because we simply just don't have the research yet to support that and we don't want people being misdiagnosed with one or the other, and I think it's also important to understand that right now, and this is an urgent need, we don't have biomarkers for diagnosis of long COVID. Similar to ME/CFS, long COVID is a syndrome. We cluster together presentations of symptoms that are occurring together with a past medical history of COVID-19 infection, and we say, "Okay, this is long COVID because you have this subjective history of a medical event plus symptoms afterwards."

How long does long COVID tend to last?

DP: Right now, it's an open question. I can tell you from outpatient reporting, we have individuals who are 18 months and counting with their long COVID symptoms, so we are viewing this as a post-viral condition that does not appear to go away without targeted treatment.

We have had some success in rehabilitating some of the symptoms of long COVID, especially those that we have classified as dysautonomia-like symptoms – so, symptoms that are resulting from misbehaviour of the autonomic nervous system. And although people are responding to our therapy, it's taking a long time, so we're seeing, on average, three to four months to get people back to a baseline where they feel similar to the way they did before their initial COVID infection.

Secondly, we're observing relapses in some of the patients that we've discharged many months after we've discharged them, indicating that there's still an underlying pathology that we don't know about that we need to address in order to fully cure individuals with long COVID.

Who's getting hit the hardest by long COVID? Is it children or just everybody?

DP: It's a challenging problem. Again, we still don't know what's causing long COVID. We have some theories that we're investigating, but right now it's hard to know who will get long COVID and who won't.

I can say that rates of long COVID in children, according to national reporting, seem to be lower than in adults. I can anecdotally confirm that in terms of children who are getting to our clinic, but I think we need to be vigilant in understanding that many children don't have the vocabulary to explain what's going on. Many children don't really walk up to their parents and say, "Hey, I'm feeling fatigued today." What you will probably see is they'll run around and then they'll crash extra hard and they're just not feeling, they're not looking the same as they did before COVID.

So it's really something that you require very attuned parents to identify because it's rare for younger kids to be explaining that they have the symptoms. We're not seeing right now any relationship between prior comorbidities or age in COVID. In fact, the median age of our cohort, around 1500 patients, is 42.

So, it's certainly not what we were worried about with acute COVID, which is older adults with chronic comorbidities. This is something that is hitting young people just as hard as it's hitting anybody else. And many of these younger individuals that are being treated, they don't have a significant medical history. They were previously fit and healthy. They have lower comorbidities than the general population when you control against a standard population and they have lower incidences of mental illness, such as anxiety and depression pre-COVID. I'm throwing that one in for individuals who were saying, "Hey, this is linked to depression and anxiety." Well, actually, no. This cohort is showing lower pre-COVID incidence of anxiety and depression from their medical history than the general population.

JK: So as the director of the Victor Chang Cardiac Research Institute, we're always interested in the effects on cardiac patients.

Have you seen any specific problems of long COVID in people with preexisting cardiac conditions?

DP: We are certainly seeing cases of myocarditis emerge, pericarditis in many of our patients with persistent symptoms. And I do believe that a preexisting cardiac condition requires a little bit more vigilance, especially even though this represents a small percentage - I would say less than 1% of our cohort are experiencing severe cardiac complications - I think that if you have a preexisting cardiac condition, it's important to monitor that preexisting cardiac condition very, very closely, because even though it is quite rare, we certainly are seeing that the virus can cause cardiac inflammation.

The other thing that's worth mentioning is we're seeing that individuals who had previous cardiac issues might ignore symptoms like fatigue or shortness of breath on exertion or exercise intolerance or symptom exacerbation post-exertion as just, "Well, I just had COVID. I'm getting over it," - when really, it could be a worsening of their heart condition.

In vaccinated versus unvaccinated people, are you tending to see milder long COVID or less long COVID in those that are vaccinated?

DP: The data right now on this are extremely spotty. There has been a couple of really well-conducted papers that have come out about this. Severity seems to be stable. The incidence seems to be going down, which is really good news. The general theory is that as our system becomes more accustomed to a novel virus, the intense immune response that sometimes occurs in response to the COVID virus will go down as well, and over time, hopefully, that means that our overall response is less likely to cause long COVID.

What we can say is that when we were talking about 10 to 15% of cases getting COVID, the latest data shows that in breakthrough cases, it might be more like 5 to 6%, which is really good news, but it's still very early. Personally, in our clinic, we've seen around a half dozen cases of long COVID from a breakthrough COVID-19 infection. And so far, the severity looks just the same as pre-vaccine long COVID.

What do you foresee is going to evolve in America? And where's this going to end in say two or three years from now?

DP: There was a terrifying paper that was published just today, I think, in Nature, talking about how there is a reasonable argument that more than a hundred million people have been affected by COVID in the United States, meaning that the rates of long COVID may be higher than we thought. While the CDC was estimating 5 million, it may be 10 or 15 million. And so these are things that we worry about. Again, thinking about equity and health, so we see on our numbers in Mount Sinai Hospital up in the Upper East Side that the majority of our patients are Caucasian. Well, when we share our data with World Health Organisation, partners, and colleagues who are working in Brazil and who are working in locations where we have primarily black patients coming in, well, guess what?

Their long COVID numbers are primarily black. So what that tells us is we have health equity issues. So we have individuals on the Upper East Side who are part of historically excluded groups who simply aren't showing up to clinics because they know they're going to show up and they're going to say, "Well, I got COVID, but I don't have a PCR to prove it. And now I'm fatigued and I don't know what to do. Can you write me a note saying, 'I don't need to go back to work'? Because I can't work right now." That's not going to happen. So these are the things that we need to address rapidly to make sure that everyone gets cared for and that we create a social safety net that makes sure that people don't fall through the cracks.

I think we need to act fast to create long COVID treatment centres that are using the latest in science to make sure that people get the care that they need and the education that they need to manage their symptoms and ensure that they don't debilitate further.

I think we need a lot of resources to come together to ensure that long COVID patients get the social and financial support that they need while they're getting through this, because according to our data, around 65% of long COVID patients have had to have a change in their employment status. We have insurers that are not recognising long COVID as a condition but also counting long COVID as a preexisting condition to stop you from getting insurance coverage. So yeah.

Because these are the sorts of practices we need to stop in their tracks to make sure that people get the care that they need in a timely fashion. Unfortunately, I don't think we're talking about two to three years. I think we're talking 10 to 15 years.

If you had a message for Australia and for perhaps the key healthcare providers or prime minister even, what would you be advising we need to be planning for and preparing for in Australia over the coming few years?

DP: I think that one thing that Australia does well is creating a social safety net for Australian citizens. But I think that one thing that we really need to work on is making sure that there are enough resources and education and additional space for patients who are going to be suffering from long COVID.

I think the major message is right now, the best way to prevent long COVID is to not get COVID, which means masks, which means social distancing, which means getting the vaccine and moving on from there, understanding that 10 to 15% of the population at least are going to be suffering with long COVID symptoms and making sure that the resources are in place to give them the care that they need.

I think Australia right now has somewhat of a good fortune in terms of they have a head start. They can look at what's being developed in the UK and the US and other locations around the world. And they can start building the infrastructure early because they had a staggered start to high numbers of patients occurring. And so if I were in charge, I would be starting to build those clinics and those facilities now so you can meet the demand head-on.

And finally, what are the specifics of rehabilitation of a long COVID patient?

DP: I would start by saying the symptoms are so diverse that there are a lot of different treatment approaches that have to be very much personalised to each particular patient.

But if I could boil it down to three of the things that we've been having the most success with:

1. The first is autonomic nervous system rehabilitation. The autonomic nervous system is this part of your nervous system that is involved in controlling all of the things in your body that you usually don't think about: when to breathe in, when your heart should beat, when you feel cold or when you should sweat, these sorts of things. We sometimes can have injuries or insults to our system that knock the autonomic nervous system out of balance. And in the case of long COVID, we are seeing people show up with this dysfunction of the autonomic nervous system.
   there are specific rehabilitation strategies that we can use to slowly, through different activities, build patient's tolerance up to having their autonomic nervous system challenged. And in addition to that, there's all sorts of behavioural things that we can change in our daily life that stop the autonomic nervous system being triggered. Adequate hydration, salt supplementation, changing certain behaviours around eating and sleeping can be beneficial. So we educate patients on all of those things, as well as engage them in autonomic nervous system rehab.
2. Secondly, we also encourage pacing. This is something we've learned from the chronic fatigue syndrome community, and it really is focused on helping people to identify when their activity level is kicking up into zones that will trigger this post-exertional symptom exacerbation. Encouraging patients to pace their activity and to build in rests into their day is really important to maintaining good function and keeping them away from severely debilitating symptom attacks.
3. And then the final thing is breathwork. We've had a lot of success in managing symptoms using breathwork. Many of our patients that we've studied have shown low levels of carbon dioxide in their breath. Ordinarily, we think about carbon dioxide as something that we want to keep low, but everything needs to be in balance. And sometimes carbon dioxide can get too low. And in that case, it triggers all sorts of different symptoms. So we've been partnering with certified breathwork coaches to train patients how to increase their carbon dioxide levels. And that's been having a really positive effect on their symptoms as well.

JK: Well, David, it's so complicated, but such amazing work you're doing. I can't thank you enough for this interview. It's been incredibly informative and I wish you all the best to you and your lab, of your work going forward. Thank you.

DP: Thanks very much.