My Chronic Lyme, Your Ill-Informed Summertime Clickbait

Aug 1
Coverage of Lyme disease often ignores science, vilifies alternative practitioners, and ridicules patients. And it’s making a bad crisis worse.
Cases of Lyme disease have been on the rise around the country for decades, with most reported in the northeast and upper Midwest. (Map credit: The Cary Institute of Ecosystem Studies)

By Lauren Rothman

This summer, as people take to the outdoors to hike, camp, fish and swim, news outlets across the country are united in their exhortations to be on the alert for ticks, the tiny arachnids whose bite can confer a host of illnesses, of which Lyme disease is the best-known and most widely feared. A quick Google News search for “ticks” brings up recent results from Self, The Atlantic, TIME and a variety of local news channels, all urging tick checks and sharing information on the many types of tick borne diseases. Tick populations are on the rise, these articles warn us; the illnesses they carry can be deadly, the chorus relates.

Generally, even the most headline-grabbing article on tick-borne diseases will end on an optimistic note, claiming that the majority of these illnesses are readily diagnosed and easily treated with a round of antibiotics. Such conclusions fly in the face of the experience of those who believe they suffer from so-called “chronic” Lyme disease — also called Post-Treatment Lyme Disease Syndrome (PTLDS) — an estimated ten to 20 percent of the population that continues to experience the symptoms of Lyme even after taking the Centers for Disease Control (CDC)-sanctioned treatment of two to three weeks of antibiotics.

For a disease as complex as Lyme, in which symptoms are diffuse, diagnostic testing is unreliable and treatments range from the conventional to the Wild West of alternative medicine, any black-and-white decree on how best identify and cure the disease is likely to remain elusive. But for patients — and I count myself among them, having fallen ill with Lyme after a trip to the Catskills two years ago — the shortcomings of most service journalism articles on Lyme are minor compared to two community-roiling pieces published this summer by the New York Times and New York Magazine. In the first, science writer Apoorva Mandavilli relates the story of her son contracting Lyme disease and quickly vanquishing it with a round of antibiotics; she concludes that Lyme is “an easily treated infection with no long-term consequences for children, or even the vast majority of adults.” In the second, journalist Molly Fischer takes a Gonzo-style dive into chronic Lyme, speaking with patients and attending support groups. Her thesis is that the disease has “grown into a phenomenon often untethered from scientific method or peer review.”

Taken together — and published within weeks of each other — these two misreported, factually inaccurate and seemingly bias-laden articles have heaped fuel upon the evidently inextinguishable fire of the so-called “Lyme Wars,” pitting those who don’t believe that Lyme can become chronic against those who are sure that it does. Within hours of its publishing, Mandavilli’s article — an op-ed entitled “My Son Got Lyme Disease. He’s Totally Fine” — had launched a heated online debate, with sufferers of chronic Lyme dismantling the article’s many errors on Instagram, Twitterand in its comments section, which eventually garnered more than 700 posts. Fischer’s examination of the chronic Lyme “community,” entitled “Maybe It’s Lyme: What Happens When an Illness Becomes An Identity?” paints sufferers as a naive group susceptible to charlatan doctors and snake-oil treatments, and ignited a similar response on Instagram, Twitter and elsewhere.

The lively debate around these two pieces testifies to a growing community that is pushing back against the use of chronic Lyme as clickbait. And make no mistake, this community is real and growing. Peer-reviewed scientific studies increasingly confirm the existence of PTLDS; Brown University statisticians recently predicted that by 2020, the population of sufferers in the U.S. will reach nearly 2 million.

The great Lyme Wars are just beginning.

Jenny Lelwica Buttaccio is a Chicago-based journalist who was diagnosed with Lyme in 2012, and has covered tick borne diseases for outlets including Real Simple, Prevention, and ravishly. She notes that when it comes to one-sided coverage of Lyme, articles like those from the Times and New York are nothing new. While Buttaccio said she has noticed cycles of coverage about the disease — in 2015 and 2016, “nobody wanted to hear about it”; then in 2017 and 2018, coverage ramped up again —there have always been inflammatory pieces that, at best, misrepresent Lyme and its symptoms and, at worst, slander its sufferers.

Specifically, Buttaccio recalled a 2016 VICE News article entitled, “If You Think You Have Chronic Lyme Disease, Most Doctors Say You’re Wrong.” The article characterizes so-called “Lyme-literate” doctors as “quacks” and focuses on the possible negative health outcomes of the long-term antibiotic treatment they often prescribe for chronic Lyme. She remembered that the article began as a dialogue between a group of journalists affected by Lyme and some editors at VICE, a situation that initially seemed hopeful until the actual article, authored by Sydney Lubkin in partnership with the medical news service MedPage Today, appeared.

“Everybody was appalled,” Buttaccio told me.“It was like, you were just talking to journalists about this subject, and now you went in the opposite direction?”

Just as the uproar over the VICE piece died down, yet another “anti-Lyme” piece was published in the Washington Post. Written by staff writer Lena H. Sun, “Dangerous unproven treatments for ‘chronic Lyme disease’ are on the rise” downplayed the severity of PTLDS symptoms and emphasized the wacky nature of unproven alternative treatments such as IV hydrogen peroxide, garlic supplements and stem cell transplants.

“It was a similar thing to the New York Times’ in that it was just a hatchet job on Lyme disease,” Buttaccio said. “It was like every wrong thing, smashed into one piece. They just got blasted for it.”

Given her memory of past articles that misrepresented Lyme disease and the struggles its sufferers face, Buttaccio said she wasn’t surprised when she first read Mandavilli’s Times piece.

“When you see that year after year after year, from different people, it’s always a mixed bag of emotions,” said Buttaccio, who took to Twitter to systematically dismantle each false and scientifically unsupported claim in the recent Times piece. “On one hand, you’re laughing, because it’s absurd. On the other hand, I always feel bad for patients who are harmed by this misinformation, and the people who potentially could be harmed in the future with such a cavalier approach to Lyme.”

As I do, Buttaccio believes that what articles on Lyme lack is nuance. Not every article has to toe the CDC-sanctioned line of “easily diagnosed, easily treated”; nor, at the other end of the spectrum, does every article have to tout the curative powers of stevia sugar substitute. In order to accurately reflect the experiences of those who live with chronic Lyme, the media has to do a better job finding gray-area stories between black and white.

“There should be people who want to check the accuracy of a diagnosis and who want to lean on science — those are good things,” Buttaccio said. “But you have to balance a little bit of that with what thousands of people are saying. There has to be something in your mind that goes, ‘Maybe we don’t have all the information we need. Maybe we do have some gaps to fill. Maybe it’s not as simple as we’re making it.’ And it seems like we never quite get to that place.”

Unless it can find some balance, the media runs two risks. One is undermining public trust, as evidenced by the many Times and New York readers who barraged both publications with Letters to the Editor, or stated that they would cancel their memberships, over their Lyme coverage. The other risk concerns losing much-needed contributions by the varied, and valuable, members of the Lyme community.

Jordan Younger, the influential blogger and Instagrammer known as The Balanced Blonde, has been sharing her struggle with Lyme disease since she was diagnosed last summer. Younger was interviewed extensively for the New York article, and is unflatteringly portrayed by its author Fischer as a wishy-washy Valley Girl hopping from expensive Beverly Hills doctor to expensive Beverly Hills doctor and leveraging her illness to gain more exposure for her brand.

“If you are an editor, assign Lyme pieces to people who have and understand Lyme please. Many of us are writers”: Porochista Khakpour, whose memoir, Sick, explores her experience with chronic Lyme.

“Lyme has also brought the Balanced Blonde to a new audience,” the article reads. “Instagram is home to an active Lyme community, and many of Younger’s photos are now hashtagged #lymewarrior; they receive hundreds of comments and thousands of likes. Target is among Younger’s sponsors, suggesting that perhaps Lyme content isn’t a bad way to reach wellness-minded American women. ‘Jordan younger lyme disease’ is among Google’s top suggested searches for her name, along with ‘jordan younger age’ and ‘jordan younger net worth.’”

Younger, who shared her outrage at what she said was a mischaracterization and manipulation of her conversation with Fischer both on Instagram and in a dedicated blog post, has written that, as a result of the experience, she will never speak to the media about Lyme disease again. Whatever your opinion — or lack thereof — of Younger and her brand, she’s a vocal member of the Lyme community who raises awareness of the disease, and now her voice on the matter has been silenced.

Another member of the chronic Lyme community who expressed her outrage with the New York piece is Porochista Khakpour, the acclaimed author of the 2018 memoir Sick, which chronicles her long battle with the disease. After the article’s publication, Khakpour took to Twitter to denounce it.

“Wish there would be a moratorium on Lyme pieces until they could figure out why people with Lyme disease are so hated and ridiculed,” she wrote on July 25.

Khakpour also expressed the need for a better diversity of voices when it comes to covering Lyme.

“If you are an editor, assign Lyme pieces to people who have and understand Lyme please. Many of us are writers.”

While Jenny Buttaccio, the journalist, expressly stated that she doesn’t believe that only journalists with Lyme have the right to cover it, more thorough communication with the Lyme community is precisely what she argues for as a step towards righting the ship.

“If you haven’t dealt with it personally, and you are a journalist and you want to write on the subject, you should tap into some of the places that the community itself goes to for valuable information,” she advised. “It isn’t always as easy as looking stuff up on Google. Don’t be afraid to look at both sides of the issue. You can do it in a diplomatic way.”

As it stands now, media coverage of chronic Lyme often ignores science, vilifies alternative practitioners, and ridicules patients. As a journalist, and as a sufferer of the disease, I argue that we need to do better. This is about much more than just bruised egos.

“When you dismiss or diminish the challenges that go along with a diagnosis, sure, it hurts people’s feelings,” Buttaccio said. “But more so, it takes us a step back from actually helping people.”

Lauren Rothman is a freelance journalist and a native of Brooklyn. Follow her on Instagram @laurenoliviarothman and @laurenstingslyme.


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