What I’ve learned reporting about Lyme disease, a contested illness

As Jeff Wheelwright began researching his book about Gulf War Syndrome, he planned to speak to suffering veterans and medical experts who were skeptical those ailments were real. But the first veteran Wheelwright interviewed flipped the script. “What is the goal of your book?” the man asked. “Does it lean more toward the veterans’ side of the house, or the other side?”

Wheelwright’s experience resonated with me. When I began reporting on Lyme disease in 2017 for a series for a Boston National Public Radio station, I quickly learned my attempt at impartiality was naive. I’m a physician, and in medical school I learned a strong majority of physicians and scientists view this common tick-borne illness as relatively straightforward and treatable by antibiotics. Many people and some doctors, however, hold that a chronic, treatment-resistant form of the disease is also widespread—a claim dismissed by the large majority of infectious disease experts.

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I’m also a social scientist, so I saw Lyme fitting in with numerous other “contested illnesses,” from Gulf War Syndrome to chronic fatigue syndrome to Morgellons. Contested illnesses have uncertain causes, unclear treatments, and disputed medical, legal and cultural definitions. Lodged where politics, intense emotions, and science converge, these are the “illnesses you have to fight to get,” as one study termed them, because whether such illnesses even exist is hotly debated.

Covering Lyme and other contested illnesses, therefore, requires that reporters navigate a minefield of competing expertise and experiences. A misstep could dismiss suffering patient-activists; it could also uncritically report claims unsupported by the scientific process. But careful reporting and writing can play a crucial role in helping patients and scientists alike sort through rumor and anecdote to understand the science of contested illness in plain language.

For the seven-part series, I spent days reporting in Cape Cod and eastern France, interviewing public health officials finding innovative ways to combat ticks, scientists trying to understand the disease and its spread, and patients and their family members who struggle with tick-borne illnesses. I spent hours reading websites of associations and “Lyme literate” patient-advocacy groups.

Lyme experts and patients often asked my opinion on non-standard treatments such as essential oils or long-term antibiotics, questions designed to reveal my bias. I worried anything I said would shatter my interviewee’s trust.

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Early on, I listened to patients and experts on social media and blogs to understand their suffering and frustration with a medical system that did not help them and made them feel even worse by denying them a diagnosis. I also spoke to Abigail Dumes, a colleague anthropologist researching Lyme. Her years of ethnographic experience with doctors and patients were like a Cliff’s Notes, illuminating the major debates, key figures, and landmines right at the start.

Journalists without time for background research can stumble onto one of those landmines. In 2011, reporter David Tuller wrote about a trial exploring the benefit of exercise therapy for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). “Not knowing any of the background, I took the study at face value,” he later wrote.

The backlash was immediate. Numerous ME/CFS sufferers wrote in, concerned about the trial’s numerous methodological problems. Compelled to dig deeper, Tuller eventually penned a 15,000-word critique of the trial’s methodology. (The controversy continues today.)

Picking the right story angle is also critical to avoid repeating stereotypes and report beyond the controversy. A 2016 Aeon article highlighted clichés about vaccine-rejecting parents—different than contested illness, but with a similar political valence pitting regular people against medical consensus. Those stories shared a formula, wrote Maggie Koerth-Baker: “The parents fear vaccines. The scientists say those fears are unwarranted. Wash, rinse, repeat.”

Exposing clichés helped Koerth-Baker write beyond them. She found that parents often accepted vaccine science but chose not to risk side effects, no matter how rare. Parents’ values—not their grasp of facts—determined their stance.

Lyme reporting also has repetitive narratives: a debilitated patient suffering from a mysterious, recurrent illness facing off against numerous skeptical doctors who told them their symptoms were “all in their head.” I read numerous stories, often about celebrities with Lyme, detailing how they saw countless doctors, all of whom misdiagnosed them until one finally found the “correct” diagnosis. Reporters usually do not question the narrative and how that diagnosis was finally made, or how all those other doctors could have gotten it wrong. The intricacies of Lyme diagnostic testing are complex, but journalists often overstate the foibles, saying it is “impossible” to detect the bacteria or blood testing is unreliable.

So I focused on what seemed like key questions that still lacked answers, such as why we know so little about preventing Lyme disease, or why, despite growing numbers of ticks, local public health efforts remained so fragmented and limited to educating people about bug repellent and tick checks. When I focused on how a treatment center took a new perspective on helping suffering patients, part of the story was how they tried, but ultimately failed, to avoid taking sides in the debate.

Journalists are in a unique position to shape how people view contested illnesses and the people suffering from them. It is both vital and possible to be simultaneously empathetic and accurate. “I try not to be a cruel person,” says Amy Maxmen, a senior reporter for Nature who has written about ME/CFS. “I’m going to take them at their word when they say they’re going through something terrible.”

Some people with contested illnesses might offer their treatment stories as unimpeachable; still, providing context, like the strength of the evidence for or against them, plus their cost and potential side effects, is crucial to avoid spreading misinformation.

And Lyme patients were clearly suffering with something, even if it wasn’t clear what. I would try to validate that suffering in interviews, then stay quiet and listen. I’d ask probing questions if my interviewee veered toward the conspiratorial, but would not derail the interview with a debate, preferring to follow up later after I was able to dig more thoroughly through the literature.

The same went for treatments. Lyme experts and patients often asked my opinion on non-standard treatments such as essential oils or long-term antibiotics, questions designed to reveal my bias. I worried anything I said would shatter my interviewee’s trust.

Maxmen does not simply report anecdotes about successful treatments, like coffee enemas, that are commonplace for ME/CFS. Many non-standard treatments for Lyme are well studied with most not shown to help while some can even cause harm. Some people with contested illnesses might offer their treatment stories as unimpeachable; still, providing context, like the strength of the evidence for or against them, plus their cost and potential side effects, is crucial to avoid spreading misinformation.

The usual caveats for science journalists apply doubly for writing about contested illnesses: Avoid false balance (“on the one hand”, “on the other”) when there is an established scientific consensus. Maintain healthy skepticism, and take heed the lessons of media coverage of past controversial illnesses such as hysteria or neurasthenia.

No matter how carefully a journalist writes a story, her work still may be undone—by an editor who wants an easy takeaway, or poorly chosen art, or hastily written headlines, captions, and social media posts that oversimplify the story.

I was lucky. At WBUR I had a generous word count, multiple pieces in a series to provide context, and a supportive editor who sought my input in headlines and radio segments. Her experience with Lyme and the potential for backlash meant we both were extra careful.

Still, we had to be prepared for angry reactions. In the past, I ignored comments on my stories. Then I read the social science literature suggesting that unchallenged misinformation will persist.  Now I try to respond, sometimes even to inflammatory comments, emphasizing open mindedness, empathy to those suffering, and avoiding bias. My editor often pitched in, as a team approach helped distribute the extra time and patience required.

I found many arguments about Lyme focus on studies that support their conclusions without even-handedly assessing the quality of all the data out there. I emphasize quality to point out why we should trust randomized, controlled studies more than anecdotal evidence or low-quality studies. But I also emphasize points of agreement, like how we all want to do a better job of being empathetic to suffering people with unclear diagnoses. Stories about contested illness test the skills and mettle of journalists, but, at a time of fake news and rampant misinformation, getting these stories right is more important than ever.

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David Scales is an Assistant Professor of Medicine at Weill Cornell Medical College. He was a special correspondent for WBUR, and has written for Aeon, Undark, and CommonHealth about issues where social sciences and health intersect. Reporting for his "Losing to Lyme" project was supported by the Pulitzer Center for Crisis Reporting. He can be found on Twitter @davidascales.