Front Burner - Solving the mysteries of long COVID

Episode Date: June 10, 2022

Shortness of breath, fatigue and brain fog. Those are just some of the symptoms that many COVID long-haulers are still facing, even months after they first caught the virus. According to studies on the condition, one-third of people who’ve had COVID-19 could develop long-term problems related to the virus. Today, Dr. Priya Duggal, an epidemiologist at the Johns Hopkins Bloomberg School of Public Health, talks about the research she’s doing into the impacts of long COVID, who’s most likely to get it and why some people don’t take it seriously.

In the Dragon's Den, a simple pitch can lead to a life-changing connection. Watch new episodes of Dragon's Den free on CBC Gem. Brought to you in part by National Angel Capital Organization, empowering Canada's entrepreneurs through angel investment and industry connections. This is a CBC Podcast. Hi, I'm Jamie Poisson. Have we been through this before? I've got a little bit of the COVID fog. I'm feeling right as rain, but there are times when my mental energy is just as shallow as a kiddie pool.

Because I had it twice, you know. Wow. I already said that, right? I already said I had it twice. That's Stephen Colbert on his show a few weeks ago, joking about his experience with long COVID. There are other famous people who have detailed their struggles with this lingering virus too. Lionel Messi, Tilda Swinton, Alfonso Davies, Billie Eilish. I mean, it was terrible. I still have side effects. I mean, I was sick for like two months almost. And you probably know someone who's experiencing symptoms for much longer than most people who caught the Omicron variant earlier this year. Crucial questions like

why people get long COVID and what the long-term effects will be for people dealing with chronic issues are nearly impossible to answer definitively at this point. But just as there was a mass mobilization to figure out the early mysteries of COVID-19, there is this wide network of doctors and researchers trying to get to the bottom of the long COVID mystery as we speak. Today on FrontBurner, we're joined by Dr. Priya Dugal. She's an epidemiologist and professor at Johns Hopkins Bloomberg School of Public Health, where she is part of a team conducting a study on long COVID. Hi, Priya. Thank you very much for joining us today. Thank you so much for having me.

It's great to have you. So I want to start by asking what seems like a simple question, but maybe a little more complicated than it actually appears. What is long COVID? That's actually a really good question and it's not as easy as it seems. Well, that's actually a really good question, and it's not as easy as it seems. Long COVID is defined by the World Health Organization as new or persistent symptoms three months after your initial SARS-CoV-2 infection that lasts for't resolve, right? So you have that initial infection. You may or may not have symptoms that are related to it. They may or may not be severe. So it could be that you were hospitalized. It also could be that you had very mild symptoms. And about three months later, you continue to have symptoms or you have new symptoms that have emerged that are related

to that initial infection. Can you take me through some of the symptoms that we're seeing here? Yeah. So just like your initial infection, there's a lot of different symptoms. So when people are initially infected, they have things like a fever, they might have muscle or joint aches, they might have shortness of breath, they could have a headache, they could have a loss of sense of smell or taste. There's a wide variety. And similarly with long COVID, it doesn't look like any specific organ is really spared. I was showing mild symptoms. I went to the doctor and it was a few months later when I was hit with the same symptoms, but much more severe along with a host of other symptoms that affected my whole body

and eventually couldn't work. So some people continue to have shortness of breath. That means they have difficulty walking maybe a quarter of a mile or up a flight of stairs. I was going to the gym four times a week. I was running 5Ks twice a week. I could deadlift 100 pounds. And now I have trouble lifting a coffee cup some days. These are people that were historically, I mean, before they had this infection, were healthy and often young individuals. It could also mean that you have new heart-associated conditions, like your heart is constantly racing.

Last Sunday, for example, I was vacuuming and I was so out of breath. I had to pause, breathe, and then that exhausted me for the entire day. We call that tachycardia, or you have a new arrhythmia, an irregular heartbeat that has emerged. In other people, they have some damage to their kidneys that causes a chronic kidney state. Others have what we call brain fog. That means that they can't really think so clearly. And I often say that I can't think that clearly, but the people who have brain fog, really, they were people that could function before, and now they go to make a pot

of coffee and they can't remember how to do that. Or they can't remember things like family members' names. And those are people in their 30s. So those are some of the things that can occur for individuals who have symptoms of long COVID. Right. Just sticking with the brain fog for a minute, I know this is something that really freaks a lot of people out. And a neuroscientist at Western University here in London, Ontario, conducted a study on long COVID and compared brain fog symptoms to people who suffer from chronic insomnia. People's ability to make decisions was seriously impaired. And also

not only accuracy, but the speed with which they made decisions. So people seem to think more slowly and they approach problems in a more sort of disordered way. Does that make sense to you? It does. I mean, I think there's a wide variety of symptoms that are sort of neurocognitive that have emerged with long COVID. And some of them are things like just this lack of sleep. It also, there are many people who just have had a lack of sleep because they can't sleep at night due to pain or due to discomfort that is occurring. What's really interesting about the patients that have these sort of

neurocognitive deficits is that we can see it in a study that came out of the UK, we can see it in an MRI. So it was, we have MRI scans before they had COVID, and then we have an MRI scan after they had COVID and their actual brain volume has changed. And that's just really striking, right? And I make that point because this is not as simple as just sort of saying, oh, I had an infection and now I don't remember something. This is actually a substantive change to your body. For how long, like, are you seeing these symptoms progress for? Or I guess from what you're saying, some of them don't resolve at all, right? Like we're talking like months and months and months with no improvement. Yeah. So, you know, when we started, we launched this COVID long study at

Johns Hopkins. We actually launched it in February of 2021. And it was based off of some things that we had started to see among participants in other studies and also anecdotal evidence where other people were talking about this and saying, I'm not resolving my symptoms. And in that time span, we have some participants who had symptoms for six months, and then they resolved some of their symptoms. We have others that are going on nearly two years of symptoms with no resolution. So it's not clear to us who will resolve, no resolution. So it's not clear to us who will resolve, who won't resolve, when you will or when you won't. And we also have some people that talk about having intermittent symptoms. So they may have sort of this brain fog or other issues for a couple months, then they feel better for a month or two, and then it comes back again. And that's also part of the definition of long COVID.

Do you know why this is happening, essentially? Like, what is it about the COVID-19 virus that is causing these long-tailed symptoms? Yeah, so we do know a little bit. And that's that we know that viruses can do this. You know, it's not unusual to have a virus that has both what I'd call this acute phase, which is, you know, the individuals who have those initial symptoms, some people resolve them and others may end up in a hospital. And then for a virus to also have more of a chronic state. And the reasons that you might have sort of this chronic state is because you still have virus within you. That's one option because it's a latent virus. So it's there and

you don't really realize that it's there. And also people who have just an overreaction to the initial infection and it's their response to that overall reaction that sort of lasts over time. With COVID, we don't really know which of these is the mechanism at the moment. We just know that the response is that it's there and it doesn't seem to be targeting a specific organ system, but it could target any one of your organ systems. But we don't yet know the mechanism. I think that's something we're all working towards, because if we can figure out the mechanism, perhaps we can find ways to treat it. Have you ever seen a virus change people's brains, like, you know, for it to show up on an MRI?

So I haven't personally, but I don't know that that's true, that it doesn't do it. I think that, we have the benefit in this pandemic of amazing technology that we have not had in other pandemics or in other large scale epidemics. We also have the fact that so many people were infected. I mean, that's why it's a pandemic. And with this many people infected, we have a lot of cases to work with, right? So I think those two combinations of things present us sort of with a unique time to be looking at a virus and a pretty nasty virus at that, right? I mean, COVID is just not pleasant in any way. And so it's great that we have this technology to aid us, but we don't seem to have a lot of history from other

incidences that could guide us on what to do next. You know, you talked about how we have a lot of cases, obviously, to look at. And knowing that other viruses can do this, like, is the percentage of people getting long COVID more than people who might be affected down the road with other viruses? might be affected down the road with other viruses? What we seem to see globally, and this has been represented in lots of different countries overall in reports that have been published or sent for publication, is that about a third of individuals who have had an infection experience long COVID. And that's just a huge number, a third, right? That's a third of people are saying that they have prolonged symptoms or new symptoms related to that initial infection that are lasting for months. But what we also see in some of our own work is that despite the fact that that's a huge number,

there is another number that's very striking. And that's that about three to 5% of all people who have had a COVID infection actually consider themselves somewhat non-functional after they've had it. So it's not just that they have this continuing symptom, like something like loss of smell or taste, which may be devastating to you individually, but you can still go to work or care for your children or care for a loved one that might be sick as well. These are people who are saying, I got this infection and I can't do things that I did before. And I can't be productive in society the way I was before. And that's the number that our team

is really focused on right now because that's sort of representing an underlying disability among people who have had it. And so getting back to your question, it's hard to say if that's a number that would match what you see with other viruses because we haven't seen another virus have this much of an impact on society

outside of the flu. And we haven't seen the flu pandemic have a big hit in a long time. Wow, you know, just listening to you, like that's a wild amount of people, like considering how many people in the world got COVID, like that's a lot of people who have like debilitating consequences from this virus. Are you able to like pinpoint who may be more likely to suffer from long COVID?

Is there a profile? So that's where we started. You know, we started because we didn't have numbers. And I think now we've got some numbers globally, and we feel better about knowing those numbers. But our next question really was, do we know? Is it a certain symptom? Is it a certain profile of the individual? Is it a certain age or sex that results in long COVID? And unfortunately, what we see is that individuals across the age span, if we just talk about adults, although children also experience long COVID, we have participants in their 20s, 30s, 40s, 50s, 60s, 70s, 80s, 90s that are experiencing long COVID. So it's not unique to a specific age. It does not appear to be specific to race. We do have more women reporting the symptoms than men, but we do see

a large percentage of men having the same symptoms as women have. So we're not sure yet if that's a reporting factor or if that's actually something that's different between men and women. And then we looked at comorbidities and there are clear comorbidities that put you at risk of severe COVID. So we're going to see a little bit more enrichment for those factors like being obese or having heart disease or having diabetes or having asthma. Those are factors that could land you in the hospital. And if you do land in the hospital, you are more likely to have long COVID. And that's likely due to the time it takes for you to recover. But we also see a huge percentage of people who never ended up in the hospital who have long COVID. So severity does not also dictate whether or not you will have this.

So unfortunately, we just don't have a profile. It's not something we have. We also don't see specific symptoms that are driving who has long COVID and who doesn't. Right. Like symptoms that you might have when you initially get COVID, they won't necessarily drive whether you have symptoms later on. Is that what you mean? Yes, exactly. So we haven't seen any specific presenting symptoms. We're looking to see if maybe there's a cluster of presenting symptoms that might be driving this. But at this point, we haven't seen it. In the Dragon's Den, a simple pitch can lead to a life-changing connection.

Watch new episodes of Dragon's Den free on CBC Gem. Brought to you in part by National Angel Capital Organization. Empowering Canada's entrepreneurs through angel investment and industry connections. Hi, it's Ramit Sethi here. You may have seen my money show on Netflix. Empowering Canada's entrepreneurs through angel investment and industry connections. Do not know their own household income. That's not a typo. 50%. That's because money is confusing. In my new book and podcast, Money for Couples, I help you and your partner create a financial vision together. To listen to this podcast, just search for Money for Couples. I know there was a study published in the Annals of Internal Medicine last month, and a lot of people took issue with it. But it said that a lot of people who are suffering from long COVID had also dealt with anxiety disorder. And I know it's like a trope that invisible illnesses are labeled as mental health issues. But is there any credence to that finding in your opinion? That's a really great question. And it's also one that concerned us in general, which is that we're all living through a pandemic. And as we live through this pandemic, there's a tremendous amount of anxiety and stress that are associated with it.

And is it possible that this is helping to drive some of what we're looking at? So we not only are enrolling people who had COVID, but we've enrolled people who didn't have COVID, who haven't yet been infected. And what we see is that the rates of anxiety in those who had COVID, had long COVID, and did not have COVID are actually really similar. And the background rates of depression are also really similar. So that doesn't seem to be driving what we're seeing here overall. And I think that's just so important to highlight. I mean, this is real. And the last thing that a person who's experiencing real symptoms wants to hear is that what they're feeling and what they're experiencing is not real and it's all

in their head. And I think that's part of what we're here to say. No, it's real. Yeah. Yeah. I would imagine that that would be incredibly frustrating if you're living through this right now and forgetting how to like turn the coffee pot on and then feeling like you're being told that it's all sort of in your head. Kind of related to this, one thing I did want to ask you about since I have you on the line is like, there are also these stories of people getting reinfected really quickly. So especially since Omicron came onto the scene, and why are some people getting reinfected so quickly? And are they more likely to get long COVID? Or if you got COVID multiple

times, are you more likely to get long COVID? We don't have an answer on that yet. And part of it is time, right? So we have really good data on the Alpha variant and on the Delta variant, just because it's been quite a while since we've experienced them. So we can follow patients who are continually experiencing long COVID. But Omicron in North America, at least, didn't really make its rude appearance until late 2021 and then the beginning of 2022. So it's only been about six months. So we are definitely seeing that people who had an Omicron infection can have long COVID.

But we don't know yet if it's repeat infections that would increase your rates of long COVID. that would increase your rates of long COVID. In terms of people getting reinfected, I think it's just always important to remember that we don't have long lasting immunity, either by vaccine or by having been infected to any of the SARS-CoV-2 virus variants that we see. So you're looking at somewhere in the range of 45 to 90 days of protection. And if you continue to have risk in your life, which means you are exposed, perhaps don't social distance or don't mask in areas where there's low ventilation, you will put yourself at risk of getting another infection. People who have long COVID, are they testing positive for COVID still?

Or do they test negative but still have all of these long lingering symptoms? So the question is what kind of tests they're taking? You know, we don't really recommend people who have had a COVID infection to take a PCR test for several months, because you may still have some virus particles that would have you test positive on a PCR. But it leads to a really good question you're asking, which is, what's this mechanism? Is it that they still have virus in their body and that's what's causing this? Perhaps that would have been a smarter way to ask the question. It's a great question though. And that's a question we don't have a full answer to. Some people have argued, well, they've looked at different organ systems and they still see some virus in these individuals. But it's not been done on a large enough scale for, you know, with enough

samples specifically of tissues, right, that are relevant for us to have that answer yet. So before we wrap up today, you're obviously looking at this. And it's probably worth noting that in Canada and in the U.S., there are no databases set up tracking these long COVID bouts, right? And how important is it for you to have more data on this? Oh, it's so incredibly important. I think that we can't make decisions, we can't understand this disease or this virus without more information being provided. And that's really the reason that we started our study. I mean, our study is a survey that just asks people questions.

It takes about 20 minutes to answer it. And it's giving us so much rich detail about what people are experiencing. And without that, I think we'd really be at a loss. We'd be very dependent on hospital medical records, which are great for people who've been hospitalized, but not so great for the average person who is recovering at home and doesn't do so well. So we strongly support participation in any research that's available wherever you are, enough so that we're launching our study to go global, right? We're going to include, it's always, so far it's been about 15,000 people enrolled in the United States, but we've decided that there isn't really anything on a global scale. So we should probably launch it and allow us to compare people in different countries to see what might be happening.

and allow us to compare people in different countries to see what might be happening. We really wish that governments would be able to step in and get some of this information. But overall, we have not seen that happen. It could happen in nationalized health care systems like your own, where there's information about visits to your doctor. But it isn't going to happen in private healthcare systems. And just finally, before we go, Priya, what do you think the long-term implications of this are? Because COVID isn't going anywhere, it certainly seems at this current moment.

I think it's pretty bleak, actually. I know, I want to sound optimistic in general that like we are we've done so much and we've accomplished so much in the past couple of years. I mean, the fact that we have vaccines that are available is unbelievable. It really is sort of a miracle to see that they are here. But but we also have this lingering condition. And this is what worries many of us, which is that now that we're past sort of this acute phase where maybe people who are hospitalized won't die because they can get access to a ventilator or and with general attention and education, it's going to hurt not just the individual, but also the economy, because this is part of our workforce, especially when it affects younger people. And it also affects caregiving, right? So if you have a primary caregiver who can't take care of their children, that's going to have a huge effect on society. Absolutely. Priya, thank you so much for this.

Of course. Thanks for having me. All right. That is all for today. FrontBurner is brought to you by CBC News and CBC Podcast. The show is produced this week by Ali Janes, Imogen Burchard, Mackenzie Cameron, Levi Garber, Simi Bassi, Derek Vanderwyk, and Ben Andrews. Our music is by Joseph Chabison. Our sound design was by Sam McNulty. The executive producer of Frontburner is Nick McCabe-Locos. I'm Jamie Poisson.

Thanks so much for listening, and we'll talk to you next week.