The worst thing about amyotrophic lateral sclerosis (ALS) is the debilitating progress of the disease, which eventually leaves patients locked in their own bodies, aware of their decline but unable to move or talk. The FDA has only approved two drugs for the disease, and at best, they only delay its progress. Almost all patients with the disease die from respiratory failure, usually within two to four years of initial diagnosis.
But not everyone follows this course. Sometimes, ALS patients have “reversals”—they get better. In 2014, while reviewing alternative treatments for ALS, neurologist Richard Bedlack, director of Duke University’s ALS Clinic, heard about an ALS-reversal case that he couldn’t make sense of. Mike McDuff not only got better after taking a dietary supplement, but reportedly stayed better—something that is not supposed to happen. Bedlack decided to begin investigating ALS reversal cases. He hopes ALS patients who’ve had reversals might have something in common that could offer answers about the disease and perhaps even lead to new treatments.
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In “The Reversal,” an episode of Gimlet Media’s Reply All podcast that aired on January 12, 2017, freelance journalist Peter Andrey Smith and senior reporter Sruthi Pinnamaneni talked with Bedlack about ALS-reversal cases, the community around them, and his attempts to study this mystifying population of patients through his website, ALS Untangled, where he and others review the effectiveness of alternative treatments for ALS.
Rodrigo Pérez Ortega spoke with Pinnamaneni and Smith about how they came to report on this mysterious and delicate story. His interviews are compiled here. (This interview has been edited for length and clarity.)
How did you find out about Richard Bedlack and ALS Untangled?
Smith: I actually knew very little about ALS going into the story. I was interested in the offshoring of fecal microbiota transplants (FMT). People have been setting up clinics in the Bahamas, offering these for a whole range of diseases. I was trying to find athletes, specifically, that were going to these clinics, so I just googled “athlete, FMT” and I found this ALS Untangled paper. It was a really intriguing paper, first of all because it was freely available for download off the publisher’s website and written for a lay audience—it wasn’t using scientific jargon.
Halfway down, there was this little anecdote saying that an athlete had gotten FMT to treat ALS and the donation [of stool] had come from a fan. And then it said that he got up and danced with his wife before [later] regressing, and I thought, “Wow, this is like the weirdest, strangest scientific article I’ve read.”
And then at the bottom there was like a hundred authors, and that’s usually for big experimental work. So I was like, “OK, I’m going to email [one of] the authors,” hoping that he could put me in touch with this athlete. Dr. Rick Bedlack called me that evening and told me that he didn’t have the person’s name, but he started telling me about [ALS Untangled].
What made you think that this could be a story for Reply All, which focuses on stories about the Internet?
Smith: I pitched somebody at Radiolab, and he suggested that I get in touch with some people at Reply All. There is a strong component [of the story] that involved a whole community sharing experiences and solutions online, and this whole thing is mediated by the Internet. This is a story about technology and how we use technology. At Reply All, they don’t think of themselves as strictly a show about the Internet—it’s much more expansive, and I just thought that it was a good story about somebody who’s on a quest to find the solution for this terrible disease.
Sruthi, how did you end up co-reporting the story with Peter?
Pinnamaneni: Originally it didn’t start off as a co-reporting relationship. Originally I was only the producer. Peter pitched the story in an email to PJ [Vogt], [the cohost of the podcast], and then PJ pitched it at a story meeting we have every Tuesday. We thought it was interesting and PJ asked if I would produce it. [In radio] the reporter researches and reports the story—talks to the sources, figures out the arc of the piece, writes the script. The producer helps coach the reporter, sits in on all the interviews to make sure they got all the answers they need for the story, cuts the tape to find the best pieces, and works with the reporter to build and edit the piece.
I think at some point, we decided that it was easier to do it as a co-reported story. Peter and I had different opinions and thoughts about some aspects of Bedlack’s work, and so we thought that would provide more texture to the story. I’ve actually never co-reported anything, so for me it was a learning experience as well.
I get the sense that some doctors are skeptical about ALS reversals. What made you think these reversal cases were real and worth reporting on?
Pinnamaneni: When we started off, we weren’t actually interested in ALS reversals. The original pitch was about Dr. Bedlack and ALS Untangled as a way of looking at alternative therapies and having publications in a journal that was free, as opposed to the general academic journals that you pay to get a paper and they’re not accessible for regular people.
The subject of reversals came up much later when we talked to Dr. Bedlack. The story [kept] shifting as [we kept] reporting, until, at some point, that became the most interesting thing, and ALS Untangled was just one step in a larger story about the reversals.
Smith: If you look at the history of ALS research, it’s just littered with failures. There’s little hope. I talked with one of Dr. Bedlack’s colleagues at Harvard, and she was just saying that we’re basically at the point where we can’t rule out anything. Good ideas can come from anywhere. And I think that sort of validated what he was doing and his method. I think people just don’t know how common reversals are. I don’t think that anyone is an ALS-reversal denialist. I think maybe there are people that are saying these resources can be used in better places.
From the way you describe Bedlack, it seems that he is an eccentric and unconventional character: He dresses in colorful clothes at the clinic and considers the ALS-reversal files his very own X-Files. He seems like the perfect person for a profile. Do you think his personality had a great impact on how the story played out?
Smith: I think that was my initial hunch. His voice is also very distinctive. But in the long run, I think that all these unusual things that he’s doing are just very logical reactions to treating people with ALS. The reason he dresses in wild clothes is because he wants patients who aren’t necessarily going to hear very good news from him to be excited about seeing him. They’ll post photos on Facebook and be like, “This is the one silver lining of having ALS,” which is otherwise not something you wish upon your worst enemy.
Pinnamaneni: In previous work I’ve done, when the story is about a person, usually it’s a person who’s gone through a big change and can talk about a way they used to be and the way they became. But Dr. Bedlack is positive and cheerful and so it was hard to do a story that changed. He’s always been nice and continues to be nice. So we abandoned that way of talking about the story and switched to more of a postcard-type format, like a postcard from a doctor who’s doing this interesting, kind of weird thing.
Was it difficult to get to talk with ALS patients?
Smith: I think that there were some people that were reluctant, but I don’t think we had anybody that said, “No, I don’t want to talk to you.” Obviously, doctors can’t give out confidential patient information, but I think all these people were pretty easy to find through the Internet.
Nelda Buss was an ALS patient who went into remission after being treated by an energy healer, and who told Bedlack about it. After she later read Bedlack’s paper about energy healing on ALS Untangled—concluding that there wasn’t enough evidence to support its use as a treatment for ALS—she sent him a letter telling him that she would not let him study her anymore. One of my favorite moments of the episode is when you got her number and put her in touch with Bedlack, years after they last spoke. How did you do that?
Smith: The radio story makes it seem like I patched him [through] immediately. [Actually, there were multiple phone calls.] As a journalist, you make a lot of cold calls and you never know when they’re going to pay off. I guess that’s the fun of it. I wasn’t expecting to reach anybody. I did a bad job at recording the call because I forgot to tape my end. When I got her on the phone, she seemed like a really nice person who was willing to talk about this. And then I asked her if she would be willing to talk to Dr. Bedlack about it and she said, “Yeah, sure.”
Here’s how the conversation started:
In some ways, I feel that this is a Jerry Springer daytime-television drama that we’re creating, but at the same it’s also interesting. Dr. Bedlack was reluctant to call her all these years because he thought she was mad at him. [As is revealed in the story,] there was this other thing going on that he knew nothing about: The energy healer’s wife was twisting [Buss’s] arm to not talk to Western scientists like Dr. Bedlack. And he thought that meant that his review had somehow ticked [Buss] off, which was not really the case.
I felt personally there was going to be no harm done in letting them have a conversation, and they both consented to even having me eavesdrop on that conversation. I think myself, as a reporter—and Sruthi and everybody else at Reply All—thought that was revelatory.
In the end, Nelda was reluctant to let us use some portions of her tape because she very much believes that the energy healer helped her and she doesn’t want to come across as discrediting something that she believes in.
Sruthi was instrumental in convincing her. We just tried to assure her that we were going to present this as evenly as possible. You want to really acknowledge that this is what she still believes. We just wanted to be clear with her that we are not throwing her under the bus. Sruthi got on the phone with her and convinced her that “Hey, we are not out to get you, we don’t want you to look bad. We just wanted to be honest about what happened here.”
I wonder how reporting this story for radio was different than if you had been reporting for print?
Pinnamaneni: Print and radio are simply different media—the way a print person interviews, the kinds of things they’re listening for are different than what a radio person is listening for. In radio, the reporter is very present in the tape and has to reflect all the skepticism and surprise the listener might feel.
How did you navigate the co-reporting process?
Pinnamaneni: It was a learning curve: learning when he would ask questions, when I would ask them, and then figuring out the writing and the editing process. After Peter did the first interview with Bedlack, he got comfortable expressing himself on tape and making sure the dialogue flowed in a natural way. He was really flexible and cool about everything, so it worked out well. We had fun together.
Smith: This was the first project where I was co-reporting, and Sruthi is great. Going to these places with another person changed the way I thought. Not only because I was recording for radio, but because there was another person there who was deeply invested in the story and was asking probing and penetrating questions that I myself might not have asked—or might not have asked in a way that would elicit an emotional response. Co-reporting a story was also very new to me and I think it worked out great.
In a later episode, Reply All ran a story about Eric Valor. He is an ALS patient who is paralyzed, trapped inside his own body. But he can move his eyes, so he communicates using an infrared camera that tracks his eye movements. This way, he can type in a computer and he’s able to do so many things this way, like tech support for other people on the Internet. You came across him when reporting for the ALS story. Why wasn’t he in “The Reversal”? What made you decide that he deserved his own episode?
Smith: Yeah, it’s really fascinating. Initially, in some of the drafts that we did, we had him as the first character that we meet: Eric Valor, who’s doing his own test with sodium chlorite and he’s also part of the ALS Untangled review board, so he’s a patient and also a reviewer on these ALS Untangled papers. In some of the builds for this story, he was a character, but we had so much and you can’t include everything.
When Sruthi and I interviewed him, it was over a Google Hangout, so you could hear him typing and sort of imagine him moving his eyeballs around the screen to do so. It was one of the more interesting interviews I’ve done, because it was so mediated by computers. I mean, he called himself a cyborg. Conversations with a cyborg. I’m really glad they were able to use his story and produce a separate episode.
Pinnamaneni: I just thought he was so interesting. He really turned this idea of the passive patient on its head. He was very proactive, very smart, and he wanted to be in charge of his own care. We wanted to include him but he just didn’t fit in the story. Every time we tried it, it felt like a tangent, and if you really wanted to do the story well, you had to give it some time, and it just didn’t fit in the “Reversal” arc. We thought the story was done, and then a few weeks later, my executive producer Tim [Howard], said, “Hey, you always liked that tape with Eric, so why don’t you do a little profile piece about him.” And I was excited to do it because it was a chance to give him the attention that I thought his story deserved. (In the embedded show below, Valor’s story starts at 16:34.)
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Besides Eric Valor, was there something that you really liked that didn’t make it into the story?
Smith: The craziest thing that didn’t get included is a story about how Dr. Bedlack met an ALS patient who got a whole sleeve of swallows tattooed on his arm [in memory of his mother, who had died of ALS]. And all of his friends got swallow tattoos, and then Dr. Bedlack got a swallow tattoo. It’s on his left hand. It’s pretty remarkable. Before he got the tattoo, he looked it up, because he didn’t want to get a highly visible tattoo if it had some nefarious meaning. A swallow is a traditional sailor tattoo that means you’re close to land, so it’s sort of a metaphor for there is hope out there, land is near.
Ultimately, it just didn’t make it into the show. It initially seemed memorable, and I remember that was one of the things we talked about on the way home from Duke. But it’s kind of like any piece—the show has editors and those editors make decisions. It’s not just the content of what people are saying; it’s also how they’re saying it. And so certainly the tone, delivery, and how that relates to the overarching story arc all played into the decision to cut it.
At some point, we all have to decide what’s precious but useless.
Talking to patients who are suffering a terrible disease such as ALS can be hard. What were the challenges and difficult questions in this story?
Pinnamaneni: I enjoy medical stories in general. I think they are hard stories to tell because they tend to be really dark and not everyone wants to hear about an incurable disease, so I think the challenge is telling them in an engaged way that is exploring different possibilities and characters. In the story, there’s light-hearted humor and interesting sketches of people, but you’re also talking about a serious disease, so knowing how to balance those two things, I always enjoy.
Smith: There was a patient that we met. She’d gone through doctors previously and was very excited to be in Bedlack’s clinic. One of the questions that we sort of wanted to address was: Is he in some way instilling people with a false sense of hope? It’s a difficult question to ask and also to answer. I guess it’s something I still think about and wonder about.
How did this story change your view of ALS and the patients? Would you like to do another story on difficult diseases?
Pinnamaneni: I think the disease itself is so awful, but also fascinating in the way it works. It’s a really great opportunity to be able to dive into it and spend a lot of time with people who are living this way and understanding what they’re going through. I think it makes me a more empathetic person, and I really hope listeners were able to appreciate what people are going through. However, I don’t want to report on any dark diseases for a while.
Smith: It’s possible. There was one scientist that I spoke with that had an interesting study that she was excited about and she also told me that she was not a practitioner. She didn’t see patients because it was just too difficult. She just felt that was too emotionally draining to treat patients. Perhaps there will be another story at some point. Good ideas come from all sorts of places, right?
Rodrigo Pérez Ortega is a TON fellow sponsored by the Burroughs Wellcome Fund. He is a freelance science writer from Mexico City. He’s passionate about neuroscience and health journalism, and has been a contributor at TecReview, Medscape en Español, ¿cómo ves?, and others. His work has been published in English and Spanish, and he works continuously to raise awareness about science and science journalism in Latin America. Follow him on Twitter @rpocisv.