Hot Docs 2022: The Quiet Epidemic

The Quiet Epidemic is the kind of film that many people will have a strong reaction to simply due to its subject matter, which is the controversial phenomenon of chronic Lyme disease. Its sufferers believe that their illness is being misdiagnosed and ignored by medical professionals who malign their character; its critics believe the chronic form of the tick-borne disease is, quite simply, not real, citing a lack of biological evidence that the infection is still in the patient’s system and causing the myriad symptoms. Thus, wading into the subject potentially puts one in a situation of either downplaying or dismissing people’s claims of suffering and illness, or, in embracing what is often a self-diagnosis, supporting and fueling a movement that has been accused of denying “evidence-based medicine.” 

That phrase—“evidence-based medicine”—lies at the heart of the documentary and is what gives the film interest beyond the specifics of the chronic Lyme community, as well as a resonance with a variety of topics that the recent and ongoing history of the Covid-19 pandemic have brought into stark relief. What is “evidence-based medicine?” What and who decides if something meets the standards for such a claim? As the directors of the film note in their press release if not in the film, many of the same claims and questions surrounding the phenomenon of “long Covid” are also relevant to the chronic Lyme debate, though this was something that struck me while watching as well. Are the symptoms attributed to chronic Lyme a lingering bacterial infection or the result of auto-immune damage caused by the initial infection? 

But, while those with long-haul Covid symptoms are taken very seriously, the film shows how chronic Lyme sufferers are granted no such grace, often dismissed as psychosomatic or “Lyme loonies” as one doctor calls them. But I noticed even further resonance between this “quiet epidemic” and the larger pandemic, as the controversies around the question of chronic Lyme addressed in the film touch on questions of how diagnoses are classified by organizations like the CDC or NIH, around the safety and approval of vaccines and treatments for Lyme more generally, and various media panics around the disease. Thus, even if one has only a passing interest in Lyme disease, the questions raised by the documentary are worth considering, even if one doesn’t find the answers entirely convincing.

Directors Lindsay Keys and Winslow Crane-Murdoch began work on the documentary after they each received Lyme diagnoses in 2015. It does function to some degree as an activist documentary, and it doesn’t hide its perspective or point of view on the question of chronic Lyme’s authenticity. The documentary offers both an overview of the disease and its treatments since its discovery in the town of Lyme, Connecticut in 1975 and an account of the personal stories of those suffering with long-haul Lyme disorders. Like many of the best documentaries, The Quiet Epidemic is not merely a data-dump, but provides a compelling framing narrative, making its point of view clear and offering the viewer victims, heroes, and villians. The central protagonist is Julia Bruzzese, a teenager from Brooklyn who was diagnosed with Lyme at age 12 and subsequently suffered debilitating symptoms which left her unable to walk. When she is blessed by Pope Francis on his visit to New York City, she is thrust into the spotlight of the chronic Lyme controversy. The heroes of this story include her father, Enrico, who, unsatisfied with the doctors assurances that Julia was Lyme free, and after the tests for hundreds of alternative diagnoses turn up nothing, began his own research into the phenomenon of chronic Lyme. 

Another of the film’s heroes is Dr. Neil Spector, a Duke cancer researcher who eventually succumbed to his own lingering Lyme symptoms at age 63, but not before uncovering what he believed to be major failures in the current approved tests for Lyme disease. The film’s villains are a bit more nebulous, as few of them granted original interviews to the filmmakers, and they include the doctors at the Infectious Disease Society of America who issued the initial guidelines for Lyme testing and treatment and, more generally, those doctors and members of the pharmaceutical industry who insist that existing tests and guidelines are sufficient. The film sets up a central mystery: what is this illness that now impacts in the range of half a million Americans every year, with as many as 10-20% experiencing some long term effects, and why is it not given the attention its sufferers ask for?

The goal of the film is to make a plausible case for the defense, in this instance on behalf of those who believe they are suffering from chronic Lyme. To put my own cards on the table, I came to the documentary fairly skeptical of many of the claims about the disease I’d read about in many places, most recently from New York Times columnist Ross Douthat, believing that there was no evidence that infection could persist beyond the initial 28 day antibiotic treatment. But the film makes a fairly compelling case about the complexity of the spiral shaped bacterium, Borrelia burgdorferi, that causes Lyme disease and the way that it can travel throughout the body (again, not unlike the claims made by those suffering from long-haul Covid). But more importantly, after the experience of the pandemic, information that might have been easier to dismiss hits differently. We’ve all become conscious participants in the tracing and prevention of a vector borne health crisis that has impacted our day to day lives in significant ways, even if we aren’t suffering like Julia Bruzzese. The frustrations many of us have experienced around a host of issues from inconsistent or confusing testing and treatment of the disease to the controversies around vaccines (in this case, unlike with Covid-19, it is those who demand the apparently risky vaccine who are outcast, not those who shun it), mean that the film may have a better chance at burrowing its own ideas, in the form of nagging doubts or questions, into its audience.

Ultimately, The Quiet Epidemic gets into the question of who counts as an expert: it’s undeniable that the people in the film, like Julia’s father, Enrico, have done hours and hours of their own research, driven, as Enrico states, by a desire “to figure this out”; Dr. Neil Spector, who despite being an oncologist, can claim no specific expertise on vector-based diseases, certainly puts forward some interesting possibilities; and lastly, journalist Mary Beth Pfieffer, who since 2012 has been the foremost journalistic investigator into the issues around chronic Lyme. Are they experts? Not in the way we often use the word to mean those with specialised higher education in a specific topic. But they make claims to experience and their claims are not easily dismissed.

Issues around health are often intensely emotional as they affect all aspects of our life, and The Quiet Epidemic uses all the typical dramatic effects to make the audience feel emotions; of despair, confusion, elation, vindication. At times the documentary feels a bit conventional, with a recurring use of talking heads and scenes following the characters around in their day to day life while talking about their experiences. Regardless of what you think of the actual causes of this disease, it is clear that the accounts of suffering and confusion that Keys and Crane-Murdoch present are real: no one is faking it. But even if the film cannot deliver the final conclusive proof of its position, it does a good job of raising the key epistemological question: how do we know what causes a disease?

While I still have a hard time abandoning the standard account of “evidence-based medicine,” it is clear that the question of what counts as evidence is more murky than many might believe. I’m not about to become deeply involved in the chronic Lyme fight, but comparing the film’s narrative to the experience of living through a massive cultural battle over questions of expertise and what constitutes expert health advice, I’m more open than I might have been, and The Quiet Epidemic leaves with me some things to think about. I expect it might have the same effect on many viewers.

7 out of 10

The Quiet Epidemic (2022, USA)

Directed by Lindsay Keys and Winslow Crane-Murdoch.

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