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A new federal study is trying to solve some of the mysterious about long-COVID

AILSA CHANG, HOST:

Government scientists today released the first results from a provocative study that's trying to solve one of the biggest mysteries about COVID-19. Why are some patients left struggling with long COVID? NPR health correspondent Rob Stein joins us again with details on this story. Hey, Rob.

ROB STEIN, BYLINE: Hey there, Ailsa.

CHANG: OK. So what is this study exactly?

STEIN: You know, just as the pandemic was starting, doctors at the National Institutes of Health started putting hundreds of people under the microscope, combing through their medical records for anything that might predispose them to long COVID, putting them through more than 130 tests, looking for everything from are their vital organs damaged? Is there any evidence the virus is still hiding in their bodies, causing the ongoing health problems? Have their immune systems gone haywire, making them sick even though the virus is gone? And today, they published the first round of the results from the first 189 long COVID patients and 120 similar people who never got COVID. The study is in the Annals of Internal Medicine.

CHANG: OK. I'm so curious. What did the researchers find?

STEIN: Well, the first thing they found was not a surprise. A lot of the COVID patients are still suffering from fatigue, brain fog, headaches, chest pain and other problems months after first getting sick, more than half. Now, the researchers stressed that doesn't mean half of COVID survivors end up with long COVID. It's probably far lower because, you know, people with these kinds of problems are more likely to volunteer for a study like this. But even if the true number is only a fraction of that, that's still a lot of people, given how many people have gotten long COVID - have gotten COVID at this point. The second thing they found might sound kind of disappointing and provocative. Here's Dr. Michael Sneller, who leads the project at the NIH.

MICHAEL SNELLER: An extensive medical evaluation failed to reveal a cause for these persistent symptoms in most cases. We were not able to find evidence of the virus persisting or hiding out in the body. We also did not find evidence that the immune system was overactive or malfunctioning in a way that would produce an injury to major organs in the body.

STEIN: In other words, despite all the testing, they couldn't find anything that could begin to explain why these people would still be sick.

CHANG: OK, wait. Are they saying that there's really nothing wrong with these people?

STEIN: No, no, no, no, not at all. And that's super important. These long COVID patients clearly are suffering from problems that are having a profound impact on their lives. These researchers just couldn't find anything physically to explain it. They did find that more women and those suffering from anxiety did end up with long COVID. But the researchers stress that doesn't mean their problems are psychological. Here's Dr. Sneller again.

SNELLER: And clearly don't want to send a message that this is all not real and in people's heads and just go home and stop worrying about it. That's not the message.

STEIN: Instead, Sneller hopes his findings will help doctors understand what's not wrong and focus on what might help, like physical and cognitive behavioral therapy. But some worry the findings could send the wrong message.

CHANG: What do you mean? What's the fear?

STEIN: The fear is doctors will dismiss patients, especially when nothing shows up on standard tests. I talked about this with Dr. David Putrino. He studies and treats long-covid patients at Mount Sinai Hospital in New York. He says the researchers just didn't do enough in-depth testing.

DAVID PUTRINO: We know that invisible illnesses are often psychologized. We know that most people with an infection-associated chronic illnesses are constantly first misdiagnosed with anxiety. Regular cookie cutter testing isn't going to show up anything different in your long COVID patients. We need to look deeper.

STEIN: For his part, Sneller agrees and says he's continuing to study these and other long COVID patients with more sophisticated tests. And a huge new NIH study is enrolling thousands of patients to try to finally get to the bottom of long COVID.

CHANG: That is NPR's Rob Stein. Thank you, Rob.

STEIN: You're welcome, Ailsa. Transcript provided by NPR, Copyright NPR.