Scientists explore why some COVID long-haulers develop multiple health issues: NPR

NIH scientists are looking for people to participate in a long COVID study. They want to know why some people with persistent symptoms get better and others end up with chronic health problems.


National Institutes of Health scientists are currently recruiting about 20,000 people in an ambitious study to get to the bottom of the long COVID. They look more than fatigue and brain fog in the weeks following an infection. They want to know why some long-haulers develop brain or heart problems, metabolic disorders, even autoimmune diseases. Joining us for a chat is NPR’s Allison Aubrey. Allison, we’ve been hearing about long COVID since the pandemic started. Two years later, have most people improved or even recovered from these persistent symptoms?

ALLISON AUBREY, BYLINE: Hi, A. Well, there’s some data that shows most people sick enough to be hospitalized with COVID haven’t fully recovered a year later. This is concerning but not entirely surprising given that many of these patients were older, had underlying conditions. But most people don’t fall into that category, A. Many who experience persistent symptoms after COVID make a full recovery. Whether it’s the most is something this NIH study can help determine. And one of the doctors running it, Dr. Stuart Katz of NYU, he knows firsthand, A, the uncertainty, the fear that lingering symptoms can bring. He contracted COVID at the end of 2020 and was very scared by what happened next.

STUART KATZ: I have to walk two flights of stairs from my apartment to street level. And I’ve been doing this every day for years. It’s never a problem. I am a cyclist. I’m in good shape (laughs). I – it was never, you know, an effort. But after COVID, every time I took those steps, I got to the top. And I would be out of breath. And my heart rate was going like 120 beats per minute.

AUBREY: And it went on for several months. So he was very worried. His COVID infection had not been very serious. So he was surprised to be hit so hard by these post-viral symptoms.

MARTINEZ: Yes. And that he’s fine and he’s out of breath, it’s terrifying. So one of the doctors leading the big NIH study ended up with long COVID himself.

AUBREY: That’s right.

MARTINEZ: Was he able to keep up with his work?

AUBREY: You know, he told me, for several months it was really hard because he felt so exhausted.

KATZ: So I would find that I should, you know, take a mid-morning break and even take a nap, and then maybe take another mid-afternoon break and take another nap.

AUBREY: Now, very gradually, he’s regained his energy. At about nine months, he still had occasional heartbeats. But now, thankfully, he tells me he is completely better. He has no persistent symptoms.

KATZ: When it comes to my day-to-day sense of health, I feel like I’m back to my baseline pre-COVID situation.

MARTINEZ: Okay. So that’s good news. But, Allison, is her typical experience that the symptoms eventually go away?

AUBREY: For a lot of people, yes. There are many stories of people making full recoveries. 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 diseases after COVID, ranging from reports of onset of diabetes, autoimmune diseases, higher risks of problems neurological and cardiac after COVID? A recent study found an increased incidence of cardiovascular events, including clots and arrhythmias in people with COVID.

KATZ: The bottom line is that we have this large number of Americans who have been infected with COVID. And even if only a small percentage end up with these long COVID syndromes, that’s a lot of people. And it really devastates their lives. So we have a whole spectrum. And you want to be able to help them.

MARTINEZ: And I know you’ve spoken to people who fall into that category. What can you tell us?

AUBREY: Well, I’m going to focus on one woman in particular because she really represents, I would say, the frustrations of a lot of people with persistent symptoms. For the past year or so, I’ve spoken to Jennifer Minhas. She is a nurse. She lives in San Diego. She is 55 years old. She contracted COVID at the start of the pandemic and ended up with a lot of brain fog, fatigue, circulation problems, a racing heart, a whole range of problems. She had to stop working because being a nurse is very physically demanding.

JENNIFER MINHAS: Because it’s fast, constantly on your feet with competing demands on your attention, lots of multitasking. I still have trouble with some of these things. And beyond that, I still have chest pains. And I have neuropathy in my hands. It is therefore sometimes very difficult to perform even basic tasks.

MARTINEZ: Yes. It looks like his condition has been crippling. Was she healthy before COVID?

AUBREY: Yeah. Before COVID, Minhas was very active. She played tennis, went to the gym. But now it’s been almost two years. She was diagnosed with an autoimmune disease called POTS, suggesting the virus triggered 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 tingles. It’s numbness. It’s pain in the joints. It’s pain outside the joints. And it can quickly become so painful that I can’t even touch the sheets. I can’t touch the steering wheel of my car.

MARTINEZ: Yes. Looks like she’s still struggling.

AUBREY: You know, the way she describes it is that she’s made progress. She is able to go out for a walk, be social with friends. But she has persistent symptoms that she is constantly trying to manage. She has seen many different doctors. They always try to get to the bottom of things. And some have pointed to the overlap with chronic fatigue syndrome, which is another syndrome that has never been fully explained.

MINHAS: I had fatigue for the first, say, 11 months. So there is certainly an 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 are going to have more viruses in the future, I think, which will also cause post-virus problems. So it’s worth getting it now.

AUBREY: So that’s one of the reasons why all of this long COVID research is so important, including this nearly half a billion dollar NIH study. The study is called RECOVER. The researchers are now aiming to recruit participants across the country. People can check it out at for more information about the study.

MARTINEZ: Allison Aubrey from NPR, thank you very much.

AUBREY: Thank you, A.


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