In recent months, as COVID-19 spread around the world, millions of people had their first glimpse of the methods epidemiologists employ to study the spread of diseases. This topic was familiar to reporter and podcast host Taylor Quimby, however, who spent months investigating the confusing, often contradictory world of Lyme disease for what eventually became New Hampshire Public Radio’s seven-part miniseries Patient Zero, which began airing in August of 2019.
Quimby had had his own personal experience with the disease, and he knew Lyme was a growing cause for concern: In 2017, the U.S. had a record number of cases, according to the Centers for Disease Control and Prevention. Quimby’s series explores Lyme from its emergence, before scientists even had a name for it, through to the current-day controversies around its detection, diagnosis, and treatment. Lyme, caused by infection with a spirochete bacterium transmitted by the bite of a deer tick, is sometimes called a “silent disease,” because the bacterium is so difficult to detect in patients’ bloodstream. That diagnostic uncertainty has bred long-standing controversy, with many in the medical community dismissing the concept of chronic Lyme disease. (People who describe themselves as having chronic Lyme believe that they’ve been left chronically ill due to a Lyme infection.)
Shira Feder spoke with Quimby about how he and his team formed a narrative out of a complicated medical mystery and lent sound to a noiseless phenomenon. (This interview has been edited for length and clarity.)
What made you want to do this series?
It was a combination of things. A colleague of mine and I both got Lyme disease within about a two-week period in July of 2017. We had totally different experiences, from symptoms to treatment to outcome. It seemed like we both had the same disease, but everything else about it was different. And once I started learning a little bit about Lyme disease, I just found epidemiology, as a process, to be deeply fascinating. You think about the biology of a pathogen entering the body, and how it spreads between and among people, either through insects or occupied vectors [third-party carriers of disease, like plants or animals]. It relies so much on how we as people interact with one another, which of course you’re seeing right now with COVID-19.
What made you think this was a story for radio instead of a written story or a video?
I’m always fascinated by what you can do with audio, because you can tell real, personal stories and explore information with a more intimate, emotional power than you can sometimes with print.
In 20 years, you might not be able to go back and talk to some of these kids who became the first index cases for Lyme disease [in the 1970s]. But right now, those people are in their 50s and 60s, and so it seemed like a perfect time to actually go out and collect some of those stories. There’s a quality to hearing someone’s voice and the way that they talk that speaks volumes.
Patient Zero uses music often, and the musical selections are quite varied in tone. How did you choose when and how to use music?
I think music can enhance the emotionality of a scene or a section that’s aimed at understanding somebody’s personal experience. It can also help with the pacing, sometimes to make something feel a little more fun or faster, if you’re trying to dig into some science. Then, choosing not to use music after you’ve been using music is also a time to indicate that people really need to pay attention to what’s being said, to slow down and listen.
I forget who said this originally, but one of my colleagues once quoted a radio mentor who said that “music can be used as a form of emotional fascism,” where you’re really leading people to feel a certain way about what’s being said, like, “This is sad or funny or exciting.” And you do want to try and avoid projecting an emotion too clearly onto a scene or a person’s dialogue, using music.
With that in mind, that music can at times be heavy-handed or overly prescriptive, were there any moments when you debated if you should add in music or leave it out?
I look at putting music in as an ethical gray area, which is to say that there’s not a right or wrong way to do it. You have to deliberate.
With Patient Zero, there were a number of ways that we could have done it. We could have just ignored the sadness or the tension of the patient experience, and put together something filled with curious science sounds—which we do some of—or “investigation” music or “trying to understand the world” music.
There were a couple pieces of music that we licensed, like an electronic piece that I think spoke to a sense of disorientation and confusion, which I used as a leitmotif whenever we were talking about Polly Murray’s experiences trying to navigate the medical world. Motifs are really helpful in bringing people back towards themes and structures.
Listen to an example of music used as a leitmotif to evoke disorientation and confusion:
There were also a lot of testimonials, where it’s pretty clear that people are telling stories about times that were unpleasant to them, and I didn’t feel bad having music speak to what was obviously not a good experience. But it’s all subjective.
Listen to an example of music used to enhance an emotional story:
How did you balance using sound effects to emphasize your ideas without sounding corny?
I’m kind of a nerd, and I love sound effects. And I’m always looking for places where they can be used to help convey a concept. The way I think of sound effects is they can be really helpful when you’re trying to convey abstract ideas that sometimes words just don’t do justice to. There’s quantity, like if you’re saying, 10,000 or 100,000: A sound effect can fill your ears and make you hear the number differently. There’s also quantity [in the sense of] size and scope, adding sound effects when you talk about things that are really, really small or really, really big.
Listen to an example of sound effects used to emphasize quantities:
I had a lot of fun with the third episode, where we used sound effects to miniaturize down to the scale of a tick latching on and burrowing into someone’s skin. We heard from a lot of listeners that it was maybe just a little too gross, but also everybody remembers that episode and talks about it. And it was my [eight-year-old] son’s favorite episode, because it was the sort of thing that makes this accessible to a younger audience, who are fascinated by things that are gross and interesting.
Listen to an example of sound effects used to convey the idea of a tick burrowing into someone’s skin:
One of the challenges with doing audio journalism is that it’s crucial to get people to say things in a way that works for audio. Did you often have to ask people questions over and over again in order to get what you needed?
There is a limit to how much you want to manipulate interviews for your purposes. Radiolab is fascinating. They have an iterative process, and they’ll ask the person back to do the same interview a few times to get different answers to questions.
I try and guide people, and I’ll let someone know if I have an idea about what I’m looking for. Like, “I want to be able to give people a really close-up sense of what’s happening in the body, so I’m going to ask you a bunch of questions, and if you can sort of try and describe them in a way that gives people a visual sense, that would be really helpful.”
[Unlike Radiolab,] I don’t typically ask people to do things more than once, unless they specifically say it in a way that’s totally unusable.
At some points in the series, you asked a question that contained mistaken information or assumptions, and the scientists would correct you. Why did you decide to keep those mistakes in?
I think it’s just showing how the sausage gets made, because I’m not an expert in epidemiology. Part of the difficulty of science journalism is that you are often interviewing experts, and those are the same people who can tell you what you did or did not do correctly with your journalism. I think it’s helpful for people to hear me stumbling my way through understanding this just as much as anybody else.
I tend to try to use [unedited] raw tape in all my work outside of Patient Zero, where it adds a little bit to the storytelling.
Listen to an example of unedited tape that includes the interviewer’s mistaken statements:
In Patient Zero, you probably got to hear me waffling a lot more than I do in other subject areas, because the science here is complicated. We had a fact-checker, and I do enjoy science and I feel confident that we did a good job making sure we got things right. But that doesn’t mean it’s easy. And that doesn’t mean that I didn’t have to learn a lot of basic terminology and concepts, just to be able to report the bare bones of this thing.
Did you wonder if your experience of having Lyme disease belonged in the story?
On some level it almost felt like a sort of disclosure. I actually reached out to try and book an interview with the former head of the Infectious Diseases Society of America, and the press person asked me [in advance] if I’d had Lyme disease, and I said that I had. And, over the phone, she said that they may not do an interview because they see that people who have had Lyme disease are biased.
I think that that’s a really, really problematic road to go down, because you just don’t have any control over whether or not you have a disease. It’s not like having a political affiliation. Whether or not you get a disease is just something that happens. And it opens up the question of what it means to be subjective or objective when it comes to journalism, but also when it comes to just being a person in the world who can get sick.
In episode five, you talked to Doug Wine, a doctor who sells a laser treatment which he claims, without evidence, can cure Lyme for $6,000. Were you concerned about giving him a platform?
We made every effort possible to counter claims that he made in that episode. My aim was just to show what he does and then hold him to account, not to provide him with a voice that is going on as an expert.
I noticed that you emphasized that Doug Wine was filling a gap that the medical community was ignoring. Why do you think some in the chronic Lyme community objected to the way you reported on him?
I think the truth is that if you feel like you have no good option, then you don’t want any options at all taken off the table. I think it can also be potentially embarrassing if you spent $6,000 on this guy and you did feel better. Nobody wants to hear that you spent that money and you shouldn’t have, or that it was a placebo. I mean, that’s liable to make people upset. And I can’t really argue with that. I think that it’s on him to prove that his treatments have value. And I don’t think at this point, he can do that.
How did you approach talking with patients about chronic Lyme, given the stigma around this condition?
People are hesitant on both sides. There were doctors who didn’t want to talk about this issue, either. A number of people turned down interviews, and then there are a number of interviews where people spoke so cautiously and diplomatically that they didn’t say anything you [wouldn’t] already know after reading about this for a few minutes.
I think when it comes to listening to patients and talking to patients, you start from a point of view of listening and empathy. I never made it my aim to question someone’s experience. If I suspected that somebody was going to be really hesitant, I told them all the people I’ve spoken to. So they would see it is a list of many people from varying backgrounds and beliefs and scientific disciplines, and you see I am not just talking to an echo chamber.
It’s also helpful to say, “I’m not here to tell one specific story, I’m here to learn.” And then there’s always sending the work that you’ve done in the past that you think is representative of how you tackle your job, and [hoping] that convinces people who are on the fence. People want to know that you’re doing the work. If they find out that’s the case, then that might be enough.
One voice of Lyme disease who you include is the journalist and author Meghan O’Rourke, who has worked for prestigious magazines like The New Yorker and is now editor of The Yale Review, and who is extremely knowledgeable about Lyme disease. Why did you decide to include her?
I wanted to avoid what I saw as a trap of presenting a single person as being the representative story of Lyme disease. It’s something you see a lot in a three- to four-minute story, which is that we have an anecdotal patient who opens it up, and then you talk to some doctors, and then you go back to the anecdote story and you’re done.
So we did this big call-out for people to tell their life stories, and there were a lot of heartbreaking stories that came in. But a number of those included information that could be categorized as incorrect. I didn’t think it would be fair to have people send in their stories, and then to pick them apart for what is and is not scientifically true. I wanted to focus on what we know, admit what we don’t totally understand, and avoid putting stuff out there that goes down conspiratorial rabbit holes.
And Meghan is not interested in talking about conspiracies or unproven therapies. If you go through her article [about living with Lyme disease] for The Atlantic, she seemed like a voice who I think was conscious of not saying things that were false.
Do you have any advice for journalists who are reporting on diseases they are not experts on?
First of all, it depends on what type of disease or what kind of situation we’re in. The responsibility around reporting on COVID-19 is going to be different from reporting on ALS. Right now we’re in the midst of a situation where information is coming rapidly, where science is moving at a pretty remarkable clip, but misinformation is also spreading at a pretty remarkable clip. I think acknowledging what you don’t understand is important, because that’s the only way that you’re going to try and remedy that fact.
Then there’s some basic stuff, [such as that] you can’t just read the abstract of an article and its conclusion. You’ve got to get into the middle part, because the methods really matter. What’s hard about that is sometimes the methods of papers, especially if you’re talking about genetics, are total gobbledygook to even very intelligent laypeople.
I would suggest talking to a number of people and looking for the people who are willing to challenge their peers. If you talk to enough people, you might be able to get a good picture of what’s going on.
Shira Feder is a New York–based writer currently covering health for Business Insider and a TON fellow sponsored by the Burroughs Wellcome Fund. She covers science and culture and has written for Vox, The Daily Beast, Huffington Post, and others. Follow her on Twitter @shirafeder.