OpEdNews

Original Content at
http://www.opednews.com/articles/life_a_edward_m_080507_advocacy___education.htm

May 7, 2008
Advocacy - Education = Epidemic
By 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.

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 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.)

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.

Personal attacks, street theater and political maneuvers are counter-productive tactics in a war
that only reproducible science and documented medical practice can win. Yet, the fog of war
needs to be cleared away now in order to reduce the seasonal danger of ticks and the painful
symptoms of Lyme disease and related infections.

Preventing tick bites is fairly straightforward. Recognizing common symptoms and receiving
prompt treatment are critical to a safe and rapid cure. These common facts must be better
conveyed to the public.

There are one or two Lyme disease groups (the American Lyme Disease Foundation, and the
National Research Fund for Tick Borne Diseases, for example) that provide reasoned dialogue
and objective education among scientists, physicians, patients and the public. It remains to be
seen whether such groups can begin to close some of the fissures torn open by almost two
decades of mistrust, misinformation, and misbehavior. . If not, we can expect the number of
cases to keep increasing.

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