When Worlds Collide- Lyme Disease

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Below is an article by Dr. Edward McSweegan, Ph.D., originally published on the web site of the American Association for the Advancement of Science.

Dr. McSweegan is an accomplished microbiologist and author. He was a National Research Council Research Associate, and later served as an AAAS Diplomacy Fellow in the State Department.

For many years, Dr. McSweegan was a scientist at the NIH National Institute of Allergy and Infectious Diseases where he worked on diverse infectious disease projects, including managing the Lyme disease program.

He was also a CDC IETA Fellow in Swaziland, and later served as an Embassy Science Fellow in Colombia. After retiring from the NIH, Dr. McSweegan worked as a program manager for the Global Virus Network in Baltimore until 2018.

Science is a powerful mechanism for examining, understanding—and to a degree—manipulating the world around us. Pseudoscience, on the other hand, is an imperfect lens through which reality can be distorted, and through which peoples’ perceptions of reality can be manipulated.

Science is difficult—made so by a dynamic, interlocking body of facts, theories, experiments, observations, and descriptive jargon. Pseudoscience requires only a willful suspension of disbelief. That is its appeal in popular culture: mere belief versus the drudgery of education and experimentation.

So what, you say? Two world views, existing in harmless separation. After all, are astronomers lying awake worrying about what astrologers are doing? Maybe they should be.

Pseudoscience can be a major source of illness, mortality, social unrest, ignorance, and financial loss. Pseudoscientific claims about vaccines, for example, have led to outbreaks of preventable diseases. AIDS denialism, homeopathy, and other non-science-based medical beliefs have injured and killed countless people.

Proponents of Creation Science continue to intimidate public school officials and cast doubt on everything from basic biology to astrophysics. Political and commercial opposition to climate science has led to lawsuits, investigations, hearings, harassment of individual scientists, and the production of sophisticated propaganda designed to cast doubt on the validity of the science and the veracity of the scientists.

Many practitioners of pseudoscience also are hard at work trying to merge the two worlds into one messy kaleidoscopic image in which science and pseudoscience are indistinguishable and, therefore, equal. A useful example of this phenomenon is the study of Lyme disease (LD). LD is a tick-borne bacterial infection discovered in Lyme, Connecticut in 1975. For complex social and scientific reasons, it quickly became a source of public hysteria and controversy.

Dissatisfied with conventional scientific explanations about the emergence of this new infection, and unhappy with what was perceived as inadequate medical care, many patients sought other explanations and alternative medical care. The end result was the formation of a parallel universe of self-described “Lyme literate” experts with their own professional society, treatment guidelines, funding, case definitions, specialty labs and clinics, journals, and annual meetings; along with a patient population that sought out such “experts,” supported them financially and politically, promoted their practices and beliefs, and relied on the Internet to promulgate pseudoscientific explanations and therapies inconsistent with modern microbiology, immunology, vector biology, epidemiology, and clinical medicine.

The appearance of two disparate sets of “experts,” and a small but vocal population of patient-activists who believe they are persistently infected with a common bacterium, gave credence to the idea that LD was “controversial.” A body of literature published by these alternative experts—consisting largely of letters, op-eds, and irreproducible data in open-access journals—furthered the impression of LD as a complex and controversial area of medicine. Naïve journalists added to that public impression through “fair and balanced” reports, writing about an infectious disease as if it were a policy debate. Worlds collided.

Then, things got worse. Unable to make headway against peer-reviewed science and evidence-based medicine, activists and their “Lyme literate” experts went on the attack. Academic investigators were threatened and harassed. Street theater protests  and petitions were organized. Anonymous calls were made to employers, deans and editors. FOIA requests for email traffic were filed. Lawsuits were threatened against individuals and organizations.

Pushed by activists, Congress held hearings and the GAO was compelled to investigate Lyme research programs at CDC and NIH. Pseudoscientists denounced evidence-based treatment guidelines and standardized diagnostic procedures, and made sweeping claims of financial conflicts and conspiracies against government scientists and academic physicians.

Such tactics—detailed in some of the published articles listed below—were not without consequences for the larger public. In addition to creating needless worry and confusion about a common infection, activists’ antics wasted millions of dollars in repetitive clinical trials, public hearings, petty FOIA requests, and GAO investigations.

Valuable research time was taken up with having to respond to dubious claims made by activists, and to repeating and refuting experiments reported by various “Lyme literate” individuals. Perhaps worst of all, activists’ public accusations and lawsuits against the first available Lyme vaccine forced its withdrawal from the market: depriving at-risk individuals in Lyme-endemic areas of an effective means of protection, and discouraging development of new vaccines.

What may have begun as legitimate public advocacy about a new infectious agent has itself become a threat to public health.

The claims of LD activism are not supported by science and medicine. Their accusations have been found unwarranted. Their support for “Lyme literate” practitioners is unconscionable. Their doctors continue to conduct largely cash-based practices that often threaten patients financially, and pseudoscience-based practices that often threaten patients medically.

Science may triumph in the end. Until then, time is lost, resources are squandered, money is wasted, and lives are lost when worlds collide.

Suggested Reading

1.     Bullying Borrelia: when the culture of science is under attack. Auwaerter PG, Melia MT. Trans Am Clin Climatol Assoc. 2012;123:79-89; discussion 89-90.

2.     Antiscience and ethical concerns associated with advocacy of Lyme disease. Auwaerter PG, Bakken JS, Dattwyler RJ, Dumler JS, Halperin JJ, McSweegan E, Nadelman RB, O’Connell S, Shapiro ED, Sood SK, Steere AC, Weinstein A, Wormser GP. Lancet Infect Dis. 2011 Sep;11(9):713-9.

3.     Scientific evidence and best patient care practices should guide the ethics of Lyme disease activism. Auwaerter PG, Bakken JS, Dattwyler RJ, Dumler JS, Halperin JJ, McSweegan E, Nadelman RB, O’Connell S, Sood SK, Weinstein A, Wormser GP. J Med Ethics. 2011 Feb;37(2):68-73.

4.     Chronic Lyme disease: in defense of the scientific enterprise. Baker PJ. FASEB J. 2010 Nov;24(11):4175-7.

5.     A critical appraisal of “chronic Lyme disease”. Feder HM Jr, Johnson BJ, O’Connell S, Shapiro ED, Steere AC, Wormser GP; Ad Hoc International Lyme Disease Group. N Engl J Med. 2007 Oct 4;357(14):1422-30. Review.

6.     Unorthodox Alternative Therapies Marketed to Treat Lyme Disease. Lantos PM, Shapiro ED, Auwaerter PG, Baker PJ, Halperin JJ, McSweegan E, Wormser GP. Clin Infect Dis. 2015 Apr 6.

More by Dr. McSweegan

Quackwatch: Lyme Disease: Questionable Diagnosis and Treatment

Quebec Skeptics: La maladie de Lyme: diagnostic et traitements douteux

Auwaerter PG, et al. Antiscience and ethical concerns associated with advocacy of Lyme disease. Lancet Infect Dis. 2011;11(9):713-9.

Lantos PM, et al. Unorthodox alternative therapies marketed to treat Lyme disease. Clin Infect Dis. 2015 Jun 15;60(12):1776-82.

Feder HM Jr, et al. A critical appraisal of “chronic Lyme disease”. N Engl J Med. 2007 Oct 4;357(14):1422-30.

McSweegan E. Lyme vaccine demonized by advocacy groups. Nature. 2006 Mar 16;440(7082):278.

McSweegan E. The Lyme vaccine: a cautionary tale. Epidemiol Infect. 2006.

McSweegan E. Lyme disease and the politics of public advocacy. Clin Infect Dis. 2008

Auwaerter PG, et al. Scientific evidence and best patient care practices should guide the ethics of Lyme disease activism. J Med Ethics. 2011;37(2):68-73.