Last summer, I had my first experience with the Lyme disease people — those who are convinced that the dangers of the tick-borne disease are much greater than mainstream science says — when "Under Our Skin," a film about the disease, played at Baltimore's Senator Theatre.
The film had all the markings of a documentary: extensive interviews with Lyme disease patients and people who believe they had the disease, doctors and researchers; smartly produced graphics; original music and location footage from throughout the United States. The film, with no narrator, had a cinematic elegance that made it seem authoritative. Someone had invested significant time and money to bring to light not only "the hidden story of Lyme disease" but a "haunting picture of the health care system and a medical establishment all too willing to put profits ahead of patients."
"Under Our Skin" received strong reviews; it won awards at several film festivals and was one of 15 Academy Award finalists for "best documentary feature."
But "Under Our Skin" was hardly a documentary.
Rather, it was a polemic, based in speculations and full of assertions, including allegations of unethical behavior by scientists who have been researching Lyme disease and its treatment. The film was heavy on anecdotes and insinuations, short on science. In fact, it was condemning of science. It sided fully —unquestioningly — with those who believe Lyme disease is a chronic condition requiring long-term, unconventional treatment, and it made heroes of "Lyme literate" physicians who had been disciplined for providing that treatment.
The Lyme disease activists did not appreciate my criticism of the film; they also expressed anger in letters about the way I presented the subject on two radio shows on WYPR, one of which included an interview with a Johns Hopkins expert in infectious diseases.
Given the extent of anti-science sentiment (see climate change), I guess I should not have been surprised that mainstream medicine had been dismissed by Lyme disease activists. I lost count of the number of angry e-mails I received on this subject.
The most prominent target of the activists has been the Infectious Diseases Society of America, which put out treatment guidelines for Lyme bites in 2006. Lyme disease activists complained about the IDSA's conclusion — that there's no such thing as "chronic Lyme disease" — and effectively created a political controversy in Connecticut, where Lyme disease was first discovered in the 1970s.
Richard Blumenthal, the attorney general of Connecticut, launched an antitrust investigation into the IDSA amid claims that the treatment guidelines were flawed because those who had developed them had conflicts of interests and failed to consider certain medical opinions and evidence. Mr. Blumenthal's challenge to the IDSA was featured prominently in "Under Our Skin."
In an attempt to settle all this, the IDSA agreed to a review of its guidelines by an independent panel of experts. The panel conducted hearings and met 16 times. Its final report, with more than 1,000 citations, was published last week. The panel concluded:
• The 2006 treatment guidelines were valid and should not be changed. A short course of oral antibiotics remains the standard treatment for patients with Lyme disease.
• There's no evidence that chronic Lyme infection exists.
• Long-term antibiotic treatment is "unproven and unwarranted" and "inappropriate use of antibiotics (especially given intravenously) has been shown to lead to deadly blood infections, serious drug reactions … as well as the creation of antibiotic-resistant bacteria or ‘superbugs.'"
• There were no conflicts of interest in the development of the treatment guidelines; allegations that those who wrote them stood to gain from the recommendations were "unfounded."
In releasing its independent review, the panel noted that symptoms commonly attributed to so-called chronic Lyme, such as [joint pain], fatigue and cognitive dysfunction "are seen in many other clinical conditions and are, in fact, common in the general population. It would thus be clinically imprudent to make the diagnosis of Lyme disease using these nonspecific findings alone."
So there it is — a conclusion by one panel of experts that supports that original panel's conclusions and recommendations for the treatment of a disease, presented for the benefit of clinicians and their patients. In matters of public health, I'll take science over a well-made "documentary" any day.
Dan Rodricks' column appears Thursdays and Sundays in print and online, and Tuesdays online-only. He is host of the Midday talk show on WYPR-FM. His e-mail is email@example.com.