Podcast: Long COVID-19 a lasting battle for many

Jim Dryden (host): Hello and welcome to “Show Me the Science,” conversations about science and health with the people of Washington University School of Medicine in St. Louis, Missouri, the Show-Me State. During the first two years that we produced this podcast, we focused entirely on how School of Medicine doctors, researchers and trainees responded to the COVID-19 pandemic. Now as the pandemic, we hope, is receding just a little, we also plan to highlight stories of other groundbreaking research, lifesaving and just plain cool work being done at the School of Medicine. But in this installment, we plan to linger just a bit longer on an aspect of the pandemic that continues to affect a significant percentage of those who had COVID-19 infections and remained with them even after they began to test negative again. Michelle Wilson tested positive for COVID-19 in November of 2020. In late December, she tried to return to her job working as a nurse at Barnes-Jewish Hospital.

Michelle Wilson: The whole time I was at work, my heart was pounding, it was racing, it was irregular, and I couldn’t catch my breath. So at that point, they put me off on short-term disability. And then when I followed up with the cardiologist, they hooked me up with the long COVID clinic.

Dryden: Long COVID is what it’s called when a person has extreme fatigue, shortness of breath, heart issues or other problems after they have officially recovered from COVID-19. It’s something that Dr. Ziyad Al-Aly, an epidemiologist at Washington University School of Medicine and at the Veterans Administration, first read about in the newspaper.

Ziyad Al-Aly, MD: The long COVID piece was 100% inspired by the patient community. We did not know that long COVID existed, and I do remember sort of the first time reading an op-ed piece in The New York Times by Fiona Lowenstein in April 2020, where she wrote, “Let’s talk about what coronavirus recovery looks like. I was young and healthy, had no medical problems at all before March 2020 when I got COVID-19. Weeks after the initial illness and I’m still having all these problems. Everybody tells you that if you’re young and healthy, ‘you’ll bounce back, you’ll do fine. This is just like the flu or even easier than the flu or milder than the flu.’ Yet here I am, young and healthy, 20-something years old in New York City, still profoundly affected by this.” That report generated sort of a movement, like all the patients sort of coalesced around her, responded to her op-ed piece within literally 48 hours. And they, to their credit, published their first report characterizing all the different manifestations of long COVID. And that was sort of, in our mind, a seminal report on — sort of basically gave the condition its name, long COVID. They started referring to themselves as long-haulers. These are all patients. None of them is a scientist, none of them is a doctor. These are all patients. They coined the term long COVID. They started referring to themselves as long-haulers. They were the primary inspiration for us to pursue this work.

Dryden: Since then, Al-Aly and his colleagues have combed through health data from millions of military veterans to chart the risks of various long COVID complications in the weeks and months after an initial COVID-19 infection. In those studies, Al-Aly has discovered that although most people start to feel better in a few days, an estimated 10% to 30% have problems that linger, including kidney problems, heart problems, diabetes and psychiatric problems like depression and anxiety. In the clinic, Al-Aly was treating a number of patients with long COVID while at the same time his team began identifying the relative risks of developing the numerous issues that are referred to as long COVID by studying huge numbers of veterans. Meanwhile, at Washington University School of Medicine, Dr. Maureen Lyons and her colleagues were launching a clinic specially designed for long-haulers.

Maureen Lyons, MD: I’m Maureen Lyons, the director of the Washington University Care and Recovery from COVID Clinic.

Dryden: The Washington University Care and Recovery from COVID Clinic was the first of its kind in the St. Louis region, and since it launched Lyons and her colleagues have treated hundreds of patients with long COVID, including both older and young people, some traveling many miles to get there. She says most people do improve over time, but not everyone gets better, and very few get better quickly. Lyons spoke to us over Zoom while quarantining after having been exposed to the virus through contact with a person who had interacted with Lyons and her young children, one of whom was born at the height of the pandemic.

Lyons: There are typically a couple of symptoms that most people have. The most common symptoms are fatigue. This is not kind of your regular tired. This is complete exhaustion, complete depletion. The other really common symptoms that the majority of people who have long COVID have would be the kind of brain fog, some kind of change in thinking or attention. A lot of people have new difficulty remembering things. Memory is a very common symptom, changes in memory. If they push themselves, if they kind of extend themselves past their available energy, symptoms will flare up and get worse. And sometimes that happens immediately, but often it’s delayed. So it’s not always an intuitive pattern for people to come up with; somewhere between 20% to 30% of people who have an infection before they’re vaccinated will go on to have this type of symptoms. It does seem to be less after vaccination, that risk looks to be about half, but it is not eliminated even with vaccination.

Dryden: How vaccination can influence risk of long COVID is the subject of Al-Aly’s most recent study that was published in the journal Nature Medicine. His team analyzed data from more than 13 million veterans and found that vaccination cut risk of long COVID about in half, from around 30% of unvaccinated infected people to about 15% in those who had been vaccinated but later got breakthrough infections. In other words, Al-Aly and his team found that even vaccinated people have a fairly significant risk for lingering symptoms of long COVID that affect the heart, brain, lungs and other parts of the body, even if their initial infections were mild.

Al-Aly: The short answer to the question is that vaccinations protect people from long COVID but only partially — meaning that it reduces the risk a little bit when you compare people who are vaccinated compared to people who get COVID without vaccination, but does not totally eliminate the risk. Still, when we compare them to control people, to people who never got COVID-19, people who got vaccinated and subsequently got COVID-19 have a higher risk of long COVID manifestations than people who never got infected. So it’s always better to protect yourself from getting infected, and vaccines do protect from infection and then do offer some partial protection from long COVID, but it’s not a complete protection. And even people who are boosted, if they get a breakthrough infection, they still are at risk of long COVID less, definitely less, but not as a control. Vaccination is one shield, but it’s an imperfect shield. We now know that even people with vaccination or people who have been vaccinated can get breakthrough disease. We also know that people who have breakthrough disease are at risk, albeit lower than nonvaccinated people, but they’re still at risk of developing long COVID. What that really means is that vaccination cannot be the only shield. And if you really want to achieve maximum protection for yourself, your family, the people around you, then you won’t rely on it as the only or the sole mitigation strategy or the sole shield.

Dryden: Because even vaccination doesn’t provide absolute protection against long COVID. And as nurse Michelle Wilson explains, you don’t want to get long COVID if you can avoid it. She’s been working for many months now with the health-care providers at the long COVID clinic: cardiologists and pulmonologists, physical therapists and others.

Wilson: Basically, what they told me when I would ask them, “Why is my heart racing when I’m just sitting still? Why am I having so much pain that it feels like I have shingles on both sides of my chest 24/7? Why has my blood pressure popped up? I’ve never had high blood pressure, ever. Why am I so fatigued all during the day, but I can’t sleep for more than two hours at night?” And the best they could tell me was that basically my autonomic nervous system had been affected by the virus and kind of went haywire. So all those things that you don’t have any control over — like your heartbeat, how you breathe — all those things were just dysregulated, and all they could do was try to give me lots and lots and lots of meds. Every symptom, two or three meds, or send me to physical therapy or speech therapy or occupational therapy. And I did all those things. And for most of last spring, I couldn’t really go anywhere, I wasn’t sleeping. I mean, I went to doctors’ appointments. That’s kind of my life. Doctors’ appointments and physical therapy.

Dryden: Do you feel better now? It’s 14 months later.

Wilson: The medications did start to work after a while. I got the pain sort of dampened down. We got my blood pressure under control. I learned some breathing exercises to use on stairs and if I have to walk very far. And so I really wanted to go back to work, and my short-term disability was running out, and so I talked to my occupational therapist and my doctor and I said, “I want to try to go back to work.” So they said, “Well, you can’t go back to work 12-hour shifts like you have been, and you can’t work two days in a row, because we think that’s going to set you back.” So they said I could work Monday, Wednesday, Friday, eight-hour shifts. So I did find a job in the Washington University Pain Clinic, and I worked Monday, Wednesday, Friday for eight-hour shifts. And the first month, the days off in between, I was able to recover enough to go back to work the next day. The second month, I started not being able to recover on those days in between, but I was catching up a little bit on the weekends. And then the third month, all my symptoms started getting worse. The irregular heartbeat got worse. The pain got worse. I actually developed pain in new parts of my body that I hadn’t had before like my hands and my hips, I guess from the walking and the typing. And after about three months, I just had to leave that job, too, which was really sad because I loved the pain clinic, and I loved the people there, and I really like working. I love being a nurse.

Dryden: Wilson, who runs a support group for long COVID patients, says she is feeling better, but she remains on disability. The support group had been trying to meet in person, but Wilson says they’re transitioning to Zoom to better serve the population of patients that has so many issues with energy and concentration. For example, when we spoke, I let myself out of her house so that she wouldn’t have to walk down the stairs and tire herself out opening the door for me. Clinic director Maureen Lyons says that story isn’t all that unusual.

Lyons: The stories that really break my heart are the people — and there are so many — who are not able to be with their family in the way that they want to be. They’re not able to take care of their children. They’re not able to take them to school. They’re not able to go to the park on the weekends. Perhaps their symptoms are improving, but it really takes a toll on not only that person but the whole family. Not all patients, unfortunately, are believed in their symptoms even now with everything that we know about long COVID. It is not always something that is visible. The other thing that breaks my heart is the loss of friendships, of relationships and support, with a change in health like this. The situations, I suppose, that do the opposite would be people who come in, and it’s essentially a social visit. They say, “You know what? I feel really good. I’m able to do this stuff. I know what I need to do, and I’m doing it, and I feel good about that.” Or they say, “You know what? My symptoms are better. I feel basically back to myself.”

Dryden: Have you had anybody that had long COVID and got better, then got COVID again and had to come back to the clinic? Have there been any cases like that?

Lyons: A handful so far. I expect we’ll see that more and more. We have had people who had COVID and did OK and then had COVID a second or a third time and then had significant enough symptoms that they wanted to come in and see what we could do.

Dryden: I want to ask you about your situation. Because as I understand it, you actually were pregnant and then had a baby while you were organizing this clinic. How did you feel going to work? And I asked not so much because you might be worried that people who hadn’t recovered fully might still be infectious but just because you were seeing something that could affect you. Like when you talked about the person who can’t take their kids to the park or drive them to school or something like that. Seeing that while expecting a baby, I imagine, must have been kind of a difficult experience.

Lyons: Yes. I have three kids actually, so I had little ones as well. It is a different perspective, I think. The majority of people that have long COVID didn’t have a severe infection. They didn’t need to be hospitalized. They didn’t need oxygen. It was very visible to me what the potential rather serious outcomes of a mild infection could be. So, yeah. I think, as we all know, pregnancy puts you at higher risk for all sorts of complications with COVID as well. I think it actually was in some ways very helpful, at least in counseling patients, because I could tell them, “I am visibly pregnant. I am fully vaccinated. I trust these vaccines. I think it’s in your best interest. Let’s see what questions can I answer.” At this point, it’s not possible to eliminate risk. It’s really just how can you decrease the chance that that could happen and still be able to do the things you want to do and to do.

Dryden: So that’s where we are. Case numbers are rising again in much of the country. New variants don’t seem to be making most people as sick, but Lyons says a significant number of her patients had mild infections but still ended up developing complications from long COVID. And as she and Dr. Al-Aly work to make their patients healthier and try to find treatments for long COVID complications, they say that for now, the best way to avoid long COVID is to do your best to avoid COVID in the first place. And long COVID patient Michelle Wilson, who although she has improved, still has not been able to return to work, says as much as she wants to get better, she just can’t.

Wilson: I had a really difficult time because I realized that there was a very good chance I would never get to be a nurse again, and I wasn’t ready for that. I never knew when I was going to have a really, really bad day, so it was hard for me to tell people I would be there to do some volunteer activity. I tried to do some volunteering here in the city to give immunizations, but I can’t be reliable for that. And that’s not who I’ve ever been. I’ve always been the person I can just push through. When people would say, especially early in the pandemic, “Well, I’ll get it, and I don’t have any pre-existing conditions or no reason to get really sick with it, and only this small percentage of people die and they’re mostly old people anyway.” But there is no cure for it, it may be something that we have to live with for the rest of our lives, and there are so many different symptoms that you can develop with long COVID. It can affect so many different systems of your body. This long COVID is something that you could end up living with for the rest of your life and having your life completely turned around. This is very real. There’s nothing made up or lazy or psychosomatic about it. If I could quit having all these problems tomorrow, I would. Absolutely.

Dryden: That’s nurse Michelle Wilson, currently trying to get healthy while on long-term disability. “Show Me the Science” is a production of the Office of Medical Public Affairs at Washington University School of Medicine in St. Louis. The goal of this project is to introduce you to the groundbreaking research, lifesaving and just plain cool work being done by faculty, staff and students at the School of Medicine. If you’ve enjoyed what you’ve heard, please remember to subscribe and tell your friends. Thanks for tuning in. I’m Jim Dryden. Stay safe.