Personal View
Antiscience and ethical concerns associated with advocacy of Lyme disease

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Summary

Advocacy for Lyme disease has become an increasingly important part of an antiscience movement that denies both the viral cause of AIDS and the benefits of vaccines and that supports unproven (sometimes dangerous) alternative medical treatments. Some activists portray Lyme disease, a geographically limited tick-borne infection, as a disease that is insidious, ubiquitous, difficult to diagnose, and almost incurable; they also propose that the disease causes mainly non-specific symptoms that can be treated only with long-term antibiotics and other unorthodox and unvalidated treatments. Similar to other antiscience groups, these advocates have created a pseudoscientific and alternative selection of practitioners, research, and publications and have coordinated public protests, accused opponents of both corruption and conspiracy, and spurred legislative efforts to subvert evidence-based medicine and peer-reviewed science. The relations and actions of some activists, medical practitioners, and commercial bodies involved in Lyme disease advocacy pose a threat to public health.

Introduction

For much of its history, medicine has endured an often justifiable degree of public scorn and suspicion for its many faults, including ignorance and ineffectiveness, elitism and exclusivity, unyielding dogma and fashionable quackery, and a certain laissez-faire commercialism. But the profession of medicine has evolved, embracing scientific and statistical methods to establish theories and practices that revolutionised the effectiveness of medical care in the 20th century. Medicine's critics, however, have also evolved. Today, there are diverse groups of activists many of whom share a common suspicion of modern medicine.

In his book, Denying AIDS,1 the psychologist Seth Kalichman wrote of such activists: “They are deeply skeptical of science and untrusting of government and big business. Some are surely misguided and others seem to foolishly believe that they understand everything there was to know…”. He was writing about people who deny the viral cause of AIDS. He could just as easily have been writing about other antiscience movements, including ardent antivaccine activists and those who promote unproven alternative medical therapies.

Aspects of Lyme disease advocacy are an important example of this antiscience movement. For the purposes of this Personal View, we will define this antiscience outlook to also include the promotion of pseudoscience and science that has weak credibility or validity because of fundamental flaws in its design or poor reproducibility. For two decades, many Lyme disease activists have portrayed Lyme disease, a tick-borne infection, as an insidious, ubiquitous, difficult to diagnose, and often incurable disease, which causes mainly non-specific symptoms such as chronic fatigue, musculoskeletal pain, and neurocognitive dysfunction that can be treated only through the use of antibiotics for months or years (panel 1).2 As with other antiscience groups, some Lyme disease activists have created a parallel universe of pseudoscientific practitioners, research, publications, and meetings, arranged public protests and made accusations of corruption and conspiracy, used harassment and occasional death threats, and advocated legislative efforts to subvert evidence-based medicine and peer-reviewed science. Politicians, the media, and the public have been left trying to discern the scientific facts from the pseudoscientific ones, with many regarding both as equally valid as they try to be fair and balanced. When such inappropriate and uncritical weighting occurs, public and government officials unknowingly come to accept or even endorse highly unconventional and sometimes dangerous theories and therapies.

Section snippets

The infection that launched a thousand protests

Lyme disease is a bacterial infection caused by Borrelia burgdorferi sensu lato (which includes B burgdorferi, B afzelii, B garinii, and other species) and transmitted by Ixodes species ticks. The infection is non-fatal, non-communicable from person-to-person, is responsive to antibiotics, and is limited in range both geographically and seasonally. The most common clinical manifestation is a characteristic skin lesion (erythema migrans) that occurs at the site of the tick bite. Within weeks,

Proven or alleged unethical activities of some LLMDs

Some LLMDs, advocacy organisations for patients, and certain diagnostic laboratories have interconnections, presenting potential conflicts of interest for these LLMDs in their multiple roles as advisors, personal physicians, and recipients of grants from activist organisations. Many of these physicians are represented by the International Lyme and Associated Diseases Society (ILADS), located in Maryland, USA. Two of the most vocal patient-activist organisations are the Lyme Disease Association

Unvalidated laboratory testing

Despite warnings from the US Food and Drug Administration and the CDC about the potential unreliability of unvalidated diagnostic tests for Lyme disease,42 many LLMDs continue to use such assays (panel 3).42, 43, 44, 45, 46 Lyme specialty laboratories are favoured by some activists and LLMDs because their non-standard testing methods and interpretation criteria often lead to more positive results than other laboratories that rely on validated methods.47 An owner of one such diagnostic company

Ethics of propaganda and persuasion

In 2005, representatives of the LDA in New Jersey, USA, and CALDA in California, USA, wrote to the Director of the CDC, criticising the information about Lyme disease on the organisation's website and its warning about improper diagnostic tests.42 In December, 2006, a New Jersey congressman complained that it was “inappropriate for CDC to highlight IDSA's findings—to the exclusion of others”.53 Lost in these political discussions was the absence of scientific merit in the arguments raised by

Conclusions

Many individuals who represent themselves as Lyme disease activists and LLMDs hold and promote views of a tick-borne infectious disease that is inconsistent with credible scientific evidence. Although relatively small in number, their effect should not be underestimated. Their unorthodox perspectives and resulting practices have contributed to injury and even deaths of patients.35, 65 Millions of dollars have been spent refuting their claims, and thousands of hours have been spent responding to

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