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Advocacy - Education = Epidemic

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Message Edward McSweegan


 Lyme disease is an infection caused by the bacterium, Borrelia burgdorferi, which is transmitted to people by the bite of a tiny deer tick. Last year, increased cases of Lyme disease were reported in various parts of the U.S. The large number of cases has been attributed to various factors, including better reporting, more deer, more ticks due to global warming, and more outdoor activities bringing more people into contact with ticks. Another contributing factor may be the activities of Lyme disease support groups. 

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 In 1977, scientists described an “epidemic arthritis” in Lyme, Connecticut and named the disease after the town. Eleven years later, the first Lyme disease advocacy group was formed. Other groups, both local and national, quickly appeared. Today there are dozens of advocacy groups across the country, and support groups in every state, including states that had no endemic Lyme disease.  


One might think that with all these groups there would be fewer Lyme patients and less public confusion about this seasonal backyard infection. But that is not the case. The effective public education campaigns that helped reduce the incidence of AIDS, cancer and smoking, for example, have been absent from Lyme advocacy.  


Instead of public education, Lyme activists have pursued a course of public confrontation with infectious disease experts and public health officials. The confrontation devolved from important questions about imperfect diagnostic tests and the lingering symptoms—such as fatigue and arthritis—of some Lyme infections. But where there was plodding science and imperfect medicine, many Lyme activists instead saw a conspiracy of academic physicians, public health officials and insurance companies bent on hiding the true scope and cost of a new tick-borne epidemic. And where there is a conspiracy, there must be conspirators. 


Suspects were quickly identified. Accusations were made. Protests were organized. Scientific meetings were disrupted. Scientists were stalked and threatened. Raucous personal attacks continue today on Internet websites and blogs. One of my colleagues (a regular target of activist venom) recently remarked in the Hartford Courant, "I don't know why they hate me so much."  

Advocacy groups coupled their shrill offensive with an equally aggressive defense of their personal beliefs about Lyme disease. Quack doctors and alternative therapies are promoted at activist meetings. People looking for Lyme disease advice are directed to certain “Lyme Literate” doctors and diagnostic companies, who in turn troll for new patients and customers at activist meetings and sit on the advisory boards of activist organizations.  Borrowing a page from Intelligent Design advocates who seek to undermine the teaching of evolution by offering disingenuous “academic freedom” bills in state legislatures, Lyme disease activists also are urging legislatures to pass medical freedom bills to protect “Lyme Literate” doctors from state licensing boards and insurance investigations. 


Caught in the middle of this war of words and tactics is a public confused about Lyme disease infections and looking for honest answers about prevention and treatment.  


The website of a national Lyme disease activist group in New Jersey claims “much more funding is needed for Lyme disease education….” But that’s not true; there could be plenty of money for educational events and products.  Instead, the same activists raised $3 million to create their own Lyme disease center. They did not like the results of federally funded, university-based research and clinical trials so they decided to create an institution more likely to produce data supporting their beliefs. (Perhaps they borrowed another page from the Creationists’ Discovery Institute.) 


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 Public education was dealt another setback in 2006 when Lyme activists persuaded Connecticut’s publicity-seeking Attorney General, Richard Blumenthal, to investigate the Infectious Diseases Society of America’s (IDSA) Lyme disease treatment guidelines. Since the respected and widely used guidelines were at odds with the beliefs of activists and the practices of their Lyme literate physicians, they were denounced as a “restraint of trade.” Last week, Blumenthal—himself a long-time supporter of Lyme activists and the hero a recent propaganda film about Lyme disease—ended his personal investigation without filing any legal actions.  The IDSA treatment recommendations remain unchanged, but the public has had to endure the spectacle of a prolonged political assault on evidence-based medicine. 


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Edward McSweegan is a microbiologist and writes a column on infectious diseases for The Capital newspaper in Annapolis, Md.
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