Short Wave - What's It Like To Be A COVID-19 'Long Hauler'

Episode Date: November 9, 2020

That's what they call themselves: long-haulers. They've been sick for months. Many have never had a positive test. Doctors cannot explain their illness any other way, and can only guess at why the virus appears to be with them for so long. Ed Yong of The Atlantic explains what might be going on, and why their experience mirrors that of other sufferers with chronic illnesses who battle to be believed. We also spoke with Hannah Davis, a long-hauler from New York City. (Encore episode.)Read Ed's story on long-haulers here. Read more about the long haulers' research group here, read their report here, and join their support group here. Email the show at [e-mail]. See pcm.adswizz.com for information about our collection and use of personal data for sponsorship and to manage your podcast sponsorship preferences.NPR Privacy Policy

When the pandemic first began, we really only talked about COVID as a disease that you got, survived and recovered from, or tragically resulted in death. But as time went on, it became apparent that in some cases, even mild cases, COVID survivors had long-lasting symptoms, sometimes really weird symptoms for weeks or months. But these patients were often dismissed by doctors or even their own family members. Hannah Davis is one of these survivors. We talked with her back in June as a part of an episode featuring reporting by Atlantic Science Reporter Ed Young. And today we're re-airing that episode because since we've talked, after months of patients advocating for themselves, it's become even more apparent that this isn't some rare occurrence. The CDC and World Health Organization finally acknowledged that this was happening,

and scientists around the world are publishing more and more about it. So today, we revisit the COVID-long-haulers. We've got a new episode for you tomorrow. You're listening to Shortwave from NPR. Hannah remembers pretty clearly it was a Wednesday. The first time she realized something wasn't right. So I remember feeling extremely scatterbrained. I was just kind of wandering around my apartment.

I was getting distracted very easily. Hannah Davis is 32. She lives in Brooklyn. Later that day, she got a text from a friend about doing a video chat. Nothing too complicated. But Hannah realized she couldn't totally process the language in the text message. But I didn't think too much of it. I was just like, oh, that's weird.

I must be tired or something. And then about an hour later, I had an elevated fever of just 99.2. And that was my first kind of realization that something might be wrong. That was March 25th. 79 days later, something is still very wrong. Give me, like, kind of a rundown of your symptoms. Like, if you want, you can tell me them, like, as they, showed up? Sure. So one of my biggest symptoms is actually memory loss, so I probably can't tell

you them as they progressed. Over the course of the last two-plus months, Hannah's forgotten her own partner's name, forgotten food on the stove. I had started a fire in my kitchen, and I'm in a very small apartment, so it's not like, you know, it's something to easily forget. She's dealt with waves of intense exhaustion. just like nothing I've ever felt before. She's felt her heart rate skyrocket. You know, a heart rate of 150 just from walking up a flight of stairs. She's had fevers, chills, sweats, tightness in her chest.

Lung burn is what we call it. I had that for a while. She's made two trips to the ER because she thought she wasn't going to make it. It just, it feels so different than anything else I've ever felt that I kind of just knew from the beginning that it was covered. COVID-19. Hannah is a long hauler. That's what they call themselves. And there are thousands of them out there.

People who have been sick for months with a hellish array of symptoms that are not the usual COVID-19 symptoms we've all heard about. It really is a grab bag of different symptoms, and they seem to come in and out. They roll in waves. They're often very unpredictable. Shortwave regular and science writer Ed Young wrote about long haulers for the Atlantic. In many cases, they've struggled to get testing because their symptoms are strange,

because they started getting sick at a point when testing wasn't commonplace, and it's still nowhere near the level we would want it to be. Some long haulers, like Hannah, have never had a positive test. In fact, she tested negative more than a month into her illness. The doctor told me that I should expect a negative test, and I did get a negative test. So it was over 30 days after I first got sick. But diagnostic tests can give false negatives. They work best when the viral load or the amount of virus in the body is highest.

For COVID, we think that's probably around when symptoms set in. And many long haulers have been evaluated by doctors who cannot explain their illness any other way. They've had to rely on clinical diagnoses from their doctors who've assured them, yes, this is COVID, but they don't have that surety of a diagnostic test. Hannah Davis says, even though she's still dealing with symptoms, she's one of the lucky ones. Her doctors believe her. I think I got in total four clinical diagnoses of COVID. But because this is not the usual COVID-19, we all hear about, many long haulers experience doubt. from doctors, even from their friends and their family, about whether they're really sick.

I know that there are a lot of people who are sick whose boyfriends and husbands are leaving them because they just think they can't possibly have been sick for two, three months. I definitely consider myself lucky because otherwise I think I would have just felt totally crazy. Today on the show, what might be going on with long haulers? scientists can only guess, but their stories are an important part of understanding the pandemic. I'm Maddie Safaya, and this is Shortwave, the Daily Science Podcast from NPR. One thing a lot of long haulers have in common is that their symptoms extend far beyond the ones you've heard about,

like trouble breathing or a fever. Many of them never land in the ICU or have to be placed on a ventilator, which in the medical world means their cases. are technically classified as mild. Why is that delineation important, and why is mild important? I think because it's very misleading. It comes from some of the early reports about COVID-19 where people who were on ventilators in hospital

who needed supplemental oxygen were described as severe and everyone else was described as mild. And that really has fed the public perception of this disease as being something that in the main is not something that young healthy people need to worry about. And I think that feeds into our calculus of like, how do we protect ourselves? What risks should we take?

And just as a nation, like, how do we go about reopening the country? Like, can you actually wall off young people and allow them to face this risk? And I think we might answer that question differently if we actually understood that a lot of these supposedly mild cases are in really bad shape. I mean, you talk to doctors and immunologists about this, right? What do they think is going on?

Do they have any idea what's going on in these people's bodies that might result in these kinds of long-term symptoms? Well, not really. We don't have clear answers. We have some guesses. One possibility is that the virus is still there, that it continues to infect people in some way. Maybe it's hiding out in some kind of reservoir organ.

as we know that some viruses can do. Maybe there are just fragments of, say, viral genetic material that are lingering and that are triggering immune reactions, even if there is no infectious virus left. Or maybe it's just the immune system that has gone berserk at the start of the infection and continues to go berserk even after the virus itself is gone. Any and all of these possibilities may be happening. And I think that it's a shame we don't have answers to offer these patients right now, given that there is clearly a problem that needs to be investigated.

That brings us back to Hannah. Back in April, a few weeks into her illness, she read about a community online, where long haulers gather to swap stories and look out for each other. At the time, it had around 1,500 members. And a small subset of that group came together with an idea to learn more about the people in it. We have someone who runs a neuroscience lab, people in public policy, people in health activism. We have a really great person who's done a lot of work for HIV-AIDS.

Hannah has a background in interactive technology. She's an artist who uses data and machine. learning in her work. And so together with her fellow long haulers... We were kind of doing this between visits to the ER or the doctor. They came up with a detailed survey of 640 people, cataloging demographics, blood types, pre-existing conditions. You know, it's not a peer-reviewed paper.

It's not meant to be a representative sample. It is, however, I think, an absolutely invaluable look at the long-hauler experience. And one of the things long haulers did in their survey was compare the symptoms over time among the long haulers who had tested positive for COVID-19 and those that had tested negative. And across 60 different symptoms, that pattern is the same. Meaning that regardless of whether people tested positive, they are experiencing many of the same symptoms over a period of time. And that's really telling.

It really strongly suggests that this community, of people are in fact experiencing the same thing. I mean, what did that result mean to you when you saw that the symptoms were essentially the same? It was incredibly validating. It was amazing to be working with people who were going through that same exact thing. So I'm very proud of this report in a way that has just been really unique. Hannah and her fellow researchers hope their report will encourage scientists to study long haulers more closely and give them a head start if they do. They also hope for other long haulers out there, it's a sign that they are not alone.

Because as Ed told us, that's another thing so many long haulers have in common, a thing they share with patients who suffer from other chronic diseases, like chronic fatigue syndrome. Yeah, there are striking similarities between what the COVID long haulers are experiencing and the experiences of people with chronic illnesses like ME-CFS, fibromyalgia. There's a whole kind of gang of these conditions that sort of travel in a pack, as one of my interviewees said to me. These conditions are also tough to diagnose. They often follow viral infections. and the people who have had them are frequently told they are not feeling what they're feeling. Something so many long haulers told Ed, they've had to deal with too. You know, I write about some of that in the piece.

I have dozens of people who've written in afterwards saying that, like, friends have accused them of just being lazy or of, like, making up symptoms as some kind of insurance scam. And then when they've tried to see doctors, you know, they've been told that that can't possibly be. COVID, COVID only last two weeks, or that it's just anxiety or stress or depression, it's all in their heads. And that kind of what's called medical gaslighting disproportionately affects women. It is a problem that has existed long before this pandemic. And it's this phenomenon where women are treated as if they are less credible witnesses to their own pain and experiences. Ed says if there's one good thing that could come from this,

it's that the entire world is paying attention to the coronavirus right now. And if scientists are forced to take a closer look at long haulers, they could serve as a valuable new example of why it's important to believe people who say they are suffering. Maybe this is finally the thing that is going to make the world pay attention to a much broader, of illnesses that are manifesting in very similar ways. You know, clearly we do not know enough about what is happening here and we need to. But my worry is that because there is still so much focus on death as an outcome that we're going to ignore the very large community of people who are going to be experiencing medium to

long-term disability as a result of this pandemic and whose lives will be changed, but who stand to be overlooked. Hannah, if anybody's listening who's in the same situation, what would you want to say to them? I would say you're not alone and you're not crazy and there are thousands of people out there who are going through the exact same thing and everything you're feeling is real. Hannah Davis. In our episode notes, you can find a link to the online group of long haulers that Hannah is a part of, a link to the report they put out, and a link to Ed Yong's piece about long haulers in the Atlantic.

This episode was produced by Brent Bachman, edited by Viet Le, and fact-checked by Emily Vaughn.