“What’s your position on Tic-Tox?” Bruno Titotto asked while seeing Dr. François Goehringer, an infectious disease specialist, for the first time. We are in a new specialized Lyme disease clinic in Nancy, in northeast France. Tic-Tox is an alternative treatment of “essential oils,” marketed to those who believe they have a chronic form of Lyme disease. It was pulled from the French market in 2012 by a regulator for safety concerns, and Titotto’s question was not an innocent one. He was essentially asking Goehringer which side of the chronic Lyme debate he was on.
Titotto, a 30-something native of Lorraine, which has one of the highest rates of Lyme disease in France, has had odd symptoms for years: joint pains, intense fatigue, and difficulty with balance and memory. After searching on the internet, he thought something called chronic Lyme disease — a nebulous condition not recognized by most physicians — might explain his current symptoms. But his blood tests don’t offer a clear diagnosis.
“I’m not sure if what you have is really Lyme,” Goehringer told him.
That answer is unsatisfying for the legion of French citizens who have become convinced that chronic Lyme disease is real, and that doctors and scientists are flat out wrong. To fight this, the French government released a national plan to combat Lyme last year that included a fact-based public service campaign aimed at raising awareness about the disease’s real prevalence, and, it was hoped, dispelling misconceptions about chronic Lyme.
It didn’t work. Rather than quelling the swirling controversy, the strategy, which included radio spots and other media messages, has only served to further entrench the suspicions of the patient community.
The ongoing information struggle in France provides important lessons that reach well beyond Lyme disease. From climate change to the anti-vaccine movement, motivated reasoning, confirmation bias, and “fake news” are challenging scientific consensus, with increasingly concerning results.
A fact-based approach is often standard procedure in public health awareness campaigns, but on contentious or political topics — and with Lyme in particular — France’s experience demonstrates that strictly fact-based messaging can backfire. And that’s because beliefs about Lyme are not just tied to knowledge or misinformation, but to far more rooted things like culture, values, and identity.
Spread by ticks, Lyme is easy to treat in its early stages. “Chronic Lyme” emerged when patients complained of persistent symptoms despite appropriate treatment. Unable to convince doctors of their continued suffering, many patients were essentially dismissed, or, worse, told that their “medically unexplained symptoms” were psychological in origin.
Let down by mainstream medicine, patients sought care elsewhere, particularly with Lyme-literate physicians, sometimes called LLMDs — a shibboleth indicating a willingness to test and treat outside of the guidelines from the Infectious Disease Society of America (IDSA).
The IDSA’s 2006 guidelines still set the standard for testing and treatment of Lyme (they’re currently in revisions,) and are very similar to French testing and treatment guidelines from the same year. IDSA’s guidelines have been reviewed by the CDC, and by equivalent boards in France, Switzerland, Canada and the U.K. as recently as 2016, all of which agree with the main recommendations. To doctors, this signals consensus; to Lyme advocates, conspiracy.
That’s because a number of mysteries and uncertainties still surround Lyme and are under active research — though Lyme advocates consider these hotly debated questions to be settled and regard the IDSA guidelines as cruel. They advocate for the use of private tests not approved by government regulators and tout alternative guidelines that allow for antibiotic treatment well beyond the standard maximum of four weeks despite high-quality scientific evidence showing no benefit.
During the summer of 2016, the Lyme debate reached a fever pitch in France as the press exploited the controversy. As just one example, L’Obs, a popular weekly magazine, dedicated its July issue to the disease with the cover story titled “The Epidemic That’s Hidden From You.” Articles featured the unchallenged opinions of Dr. Christian Perronne, a French physician whose recent book “The Truth About Lyme Disease” presents many interesting but highly uncertain hypotheses about the causes and cures of chronic Lyme. Perronne was one of 100 physicians sounding the alarm that the health ministry must act fast.
In fact, France has fewer estimated yearly cases than the state of Massachusetts, despite a population 10 times the size, and that number has been stable at around 29,000 cases annually since 2009. (Massachusetts sees an estimated 40,000 to 50,000 cases each year.) But France released its national plan, in part, to assuage the concerns of a highly active advocacy community of people convinced they are affected by chronic Lyme disease. While the plan itself is well designed, Lyme advocates have not been placated — and a poor communication strategy is partly to blame.
In July, the health ministry released a set of 10 radio spots featuring prominent French scientists answering questions on ticks or Lyme based on current scientific consensus. Le Droit de Guérir (“The Right to Heal”), a patient advocacy group, demanded the radio spots be pulled, arguing that broadcasting them was “dangerous” because the experts featured “are detractors of the chronic form of this illness.”
The spots ran anyway, but rather than quieting the concerns of Lyme advocates or finding common ground, the national plan seems to be further entrenching the two extremes. The backlash is not limited to disputed facts, and some activists dismiss even the most innovative parts of the Lyme plan, like Goehringer’s Nancy clinic, a multidisciplinary one-stop shop for diagnostic testing and treatment for Lyme.
“The multidisciplinary centers are the powder in the eyes to calm public opinion,” one commenter on a Lyme advocacy website wrote. “One day the truth will burst out.”
In their book “The Enigma of Reason,” cognitive scientists Hugo Mercier and Dan Sperber describe what they call the “my-side bias” — the tendency of individuals to unconsciously select for information that confirms their existing opinions. In theory, such individual biases can be counteracted through training people to be aware of how they process information.
But there’s also a social aspect that reinforces individual biases. Daniel Kahan, a law professor who runs the Cultural Cognition Project at Yale Law School argues that resistance to certain truths is common in part because new ideas force people to re-evaluate their identity, and that in turn, could possibly alienate them from valued social groups — something he calls “identity-protective cognition.” Training individuals about bias can help, Kahan argues, but changing minds requires providing information in ways that do not threaten cherished identities.
Kahan’s work on climate change has shown that while people agree to defer to experts in theory, in practice they only do so if the expert shares their group’s position. So it may not be surprising that Lyme advocates rejected the experts picked for the radio spots. They might be experts, but they are not their experts.
Moreover, blindness to the values and motivations that drive these beliefs helps explain how fact-based teaching on contentious political issues can actually backfire. In the case of vaccine refusal, parents that are most resistant to vaccines become even more resistant after having their beliefs debunked, despite the use of varied communication strategies. Facts only matter if you trust their source. The physicians and public health professionals who have already lost the trust of Lyme patients are unlikely to be convincing just by citing more facts.
And yet so far, that seems to be the main response of the French scientific community. The editor in chief of Science & Pseudo-sciences, a popular science magazine published by the French Association for Scientific Information wrote a scathing criticism called “Lyme Disease: Between Psychosis and False Information,” followed by an article in a French medical journal exposing “The Hidden Face of Lyme Doctors.” Another popular science magazine, Sciences et Avenir, also recently highlighted some expensive but unproven treatments marketed to those with medically unexplained symptoms who believe they’ve been affected by chronic Lyme disease. A documentary film ran on French television in May with the foreboding title “Lyme Disease: Epidemic or Psychosis?”
Framed as “belief in science” versus “psychological illness,” the tenor of these inquiries, while factually accurate, doesn’t help. With such inflammatory language, it is no surprise that the two sides are entrenched in an irreconcilable debate. This poses a particular problem for the part of the French national plan that requires physician experts and patient advocates to work together to develop new clinical guidelines to treat Lyme. Despite monthly meetings, the original release date of June 2017 has come and gone without consensus.
Both sides are up in arms about the process. Patient advocacy groups have complained about the lack of transparency and the slow speed. Lymaction, an advocacy group, denounced the process as a “communication exercise.” After word that a consensus could not be reached by the original deadline, the French Association for Scientific Information expressed concern that civil society groups were hijacking the process, saying, “medicine should be based on rigorously validated scientific facts, not on the pressure of opinion or power relations.”
Consensus will likely remain elusive as the group meets through the fall. Like Tic-Tox, treatment guidelines are the fault line that divides chronic Lyme advocates from the mainstream medical community. Dr. Yves Hansmann, an infectious disease physician at the University of Strasbourg and participant in the process, says “what’s left to discuss is mostly chronic forms [of Lyme], where we have the risk of having difficulty to reach an agreement because we have very different opinions.”
Kahan’s solution is finding compromises that do not threaten the identity of various stakeholders. One approach for vaccine skeptics, suggested by Mark Navin, a philosopher at Oakland University in Michigan, is to seek the first-hand experience of patients and parents to help prioritize the research agenda. A similar approach might work for Lyme advocates.
An even better approach would address the underlying problem. Most people who come to specialized clinics concerned they have chronic Lyme do not meet criteria for the disease. But many are still suffering. A patient-focused research agenda might finally address the true epidemic of “medically unexplained symptoms” — the patients with “none of the above” syndromes that are too frequently dismissed by mainstream physicians for their medically unexplored stories.
Shawn Otto, in his book “The War on Science,” suggests that there is no shortcut to the hard work of correcting misinformation. It takes time to gain an individual’s trust and respect and walk them through the scientific process so they see why, despite the complexity, there is consensus rather than conspiracy.
After Titotto asked Dr. Goehringer about Tic-Tox, there is no avoiding a discussion about alternative therapy. Titotto is searching for solutions and he is more concerned with feeling better than acquiring a precise diagnosis: “I couldn’t care less if it’s Lyme,” he told the doctor.
The discussion turns to Dr. Christian Perronne, the author of “The Truth About Lyme Disease,” and the long-term antibiotics he advocates as treatment for chronic Lyme. “The studies Dr. Perronne cites are often lower quality,” Goehringer says. High quality studies are randomized with control groups, to be sure the intervention is really working, he explains, but Perronne often puts heavy emphasis on non-randomized, retrospective studies without controls.
After more discussion, Titotto says he understands not all published science is of equal quality. But he is quickly overwhelmed: “You cite scientific articles, he cites scientific articles,” Titotto says. “How do I balance between the two?”
Reporting for this project was supported by the Pulitzer Center for Crisis Reporting. David Scales is an internal medicine physician at Cambridge Health Alliance and an instructor at Harvard Medical School. He can be found on Twitter @davidascales.