A MARTÍNEZ, HOST:
Scientists at the National Institutes of Health are now recruiting about 20,000 people as part of an ambitious study to get to the bottom of long COVID. They're looking at more than just fatigue and brain fog in the weeks after an infection. They want to know why some long haulers go on to develop brain or heart problems, metabolic disorders, even autoimmune conditions. NPR's Allison Aubrey joins us to discuss. Allison, we've been hearing about long COVID since early in the pandemic. Two years on, have most people improved or maybe even recovered from these lingering symptoms?
ALLISON AUBREY, BYLINE: Good morning, A. Well, there's some data to show that most people who were sick enough to be hospitalized with COVID had not fully recovered one year out. That's concerning but not completely surprising given many of these patients were older, had underlying conditions. But most people don't fall into this category, A. Many who experience lingering symptoms after COVID do go on to make a full recovery. Whether it's most is something this NIH study can help determine. And one of the doctors leading it, Dr. Stuart Katz of NYU, he knows firsthand, A, the uncertainty, the fear that lingering symptoms can bring. He got COVID in late 2020 and was very spooked by what happened next.
STUART KATZ: I have to walk two flights of stairs from my apartment to the street level. And I've been doing that every day for years. It's never a problem. I'm a cyclist. I'm in good shape (laughter). I've - that's never been, you know, an effort. But after COVID, every time I walk those steps, I would get to the top. And I'd be out of breath. And my heart rate would be going, like, 120 beats a minute.
AUBREY: And this went on for several months. So he was very concerned. His COVID infection hadn't been very severe. So he was surprised to be hit so hard with these post-viral symptoms.
MARTÍNEZ: Yeah. And that he's in good shape and he's out of breath, that is terrifying. So one of the doctors leading the big NIH study ended up with long COVID himself.
AUBREY: That's right.
MARTÍNEZ: Was he able to keep up with his work?
AUBREY: You know, he told me, for several months, it was really tough because he was feeling a lot of exhaustion.
KATZ: So I would find that I would have to, you know, take a break in the mid-morning and, like, even take a nap and then maybe take another break in mid-afternoon and take another nap.
AUBREY: Now, very gradually, he got his energy back. By about nine months out, he was still having an occasional racing heart. But now, thankfully, he tells me he is completely better. He has no lingering symptoms.
KATZ: In terms of my day-to-day sense of health, I do feel like I'm back to my pre-COVID baseline.
MARTÍNEZ: All right. So that's good news. But, Allison, is his experience typical that eventually symptoms just go away?
AUBREY: For many people, yes. There are lots of stories of people who make a full recovery. But for some, the symptoms persist. And that's what this NIH study is trying to better understand. Why do a small fraction of people end up with a whole range of what can be chronic conditions after COVID, everything from reports of the onset of diabetes, autoimmune diseases, higher risks of neurological and heart issues after COVID? A recent study found an increased incident of cardiovascular events, including clots and arrhythmias among people who had COVID.
KATZ: The bottom line is that we have this huge number of Americans that were infected by COVID. And even if just a small percentage wind up with these long COVID syndromes, it's a lot of people. And this is really devastating their lives. So we have a whole spectrum. And you want to be able to help them.
MARTÍNEZ: And I know you've been talking to people who fall into this category. What can you tell us?
AUBREY: Well, I'm going to focus on one woman in particular because she really represents, I'd say, the frustrations of a lot of people with persistent symptoms. Over the last year or so, I've been talking to Jennifer Minhas. She's a nurse. She lives in San Diego. She's 55. She got COVID early in the pandemic and ended up with a lot of brain fog, fatigue, circulation issues, a racing heart, a whole range of problems. She had to stop working since being a nurse is so physically demanding.
JENNIFER MINHAS: Because it's fast-paced, constantly on your feet with competing demands on your attention, lots of multitasking. I still have trouble with some of those things. And beyond that, I still get chest pain. And I have neuropathy in my hands. So it's really hard to do even basic tasks sometimes.
MARTÍNEZ: Yeah. It sounds like her condition has been disabling. Was she healthy before COVID?
AUBREY: Yes. Before COVID, Minhas was very active. She played tennis, went to the gym. But now it's been nearly two years. She was diagnosed with an autoimmune condition called POTS, suggesting the virus set off some kind of change in her immune system. But she says the diagnosis doesn't seem to explain all of her symptoms. She says the neuropathy in her hands has gotten worse.
MINHAS: It's tingling. It's numbness. It's pain in the joints. It's pain outside of the joints. And it can rapidly progress into so much pain that I can't even touch the sheets. I can't touch my steering wheel of my car.
MARTÍNEZ: Yeah. It sounds like she's still struggling.
AUBREY: You know, the way she describes it is that she has made some progress. She's able to go out for walks, to be social with friends. But she has persistent symptoms that she's constantly trying to manage. She's seen many different doctors. They're still trying to get to the bottom of it. And some have pointed to the overlap with chronic fatigue syndrome, which is another syndrome that has never fully been explained.
MINHAS: I had fatigue for the first, say, 11 months. So there is definitely some overlap. And it's really important to look at all of these syndromes because they haven't been studied in the past as much as they should have been. We're going to have more viruses in the future, I think, that will also be causing post-viral issues. So it's worth the time to get this right now.
AUBREY: So this is one of the reasons why all of this research on long COVID is so important, including this nearly half-billion-dollar NIH study. The study is called RECOVER. Researchers are now aiming to enroll participants all over the country. People can check it out at recovercovid.org for more information on the study.
MARTÍNEZ: NPR's Allison Aubrey, thanks a lot.
AUBREY: Thank you, A.
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