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Political Aspects of Lyme- Newsgroup Faqs 6/06
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PostPosted: Tue Jun 13, 2006 11:17 am    Post subject: Political Aspects of Lyme- Newsgroup Faqs 6/06 Reply with quote

The fact that Lyme disease is usually curable has not discouraged the
formation of over a hundred support groups and nonprofit foundations,
some with financial backing from intravenous services hoping to promote


further long-term antibiotic therapies [27]. These groups and their
ardent followers have used the Internet and other media to barrage
politicians and the general public with misinformation, dire personal
stories, rumors, and exaggerated claims about thousands of people being



maimed, killed and bankrupted each year by Lyme disease. The core
message is that Lyme is a deadly chronic disease that requires
long-term antibiotic therapy paid for by insurance companies. Despite
its alleged frequency, NIH-funded clinical trials in Boston and
Bethesda were hampered by a lack of patients who met science-based
criteria for chronic Lyme disease. A third trial underway at Columbia
University has had to modify its patient entry criteria in order to
find enough patients to carry out the study.


Support groups and individual patients have created many Web sites that



contain unsubstantiated assertions, inaccurate medical information, and



personal testimonies for the dubious treatments described above.
Indeed, the Internet has provided a powerful mechanism for organizing
patients and presenting poorly documented information to the public and



the press.


Internet newsgroups have posted wild criticisms of physicians and
researchers who disagree with their claims and concerns. Research
reports that run counter to the claims of Lyme activists are denounced
and their authors accused of incompetence and financial conflicts of
interest. Magazines and news organizations whose stories on Lyme
disease are not sufficiently hysterical are barraged with e-mail
complaints and urged to contact certain organizations for "the truth."
Protests have been organized to denounce Yale University's research
meetings and Lyme clinic because, according to the protesters, Yale
"ridicules people with Lyme disease, presents misleading information,
minimizes the severity of the illness, endorses inadequate, outdated
treatment protocols, excludes opposing viewpoints, and ignores
conflicts of interest." Researchers have been harassed, threatened, and



stalked [28]. A petition circulated on the Web called for changes in
the way the disease is routinely treated and the way insurance
companies cover those treatments. Less radical groups have had their
meetings invaded and disrupted by militant Lyme protesters.


Some Lyme organizations have tried to raise funds for their own
research on hyperbaric oxygen treatments, pregnancy-related Lyme, and a



clinical trial of chronic Lyme patients. Others have organized
"scientific" meetings that include anecdotal reports by physicians
friendly to their cause, and one group has launched a journal that
reflects its leaders' beliefs.


The Lyme Disease Buyers Club markets vitamin and nutrient supplements
(e.g., flax seed oil, evening primrose oil, coenzyme Q10, garlic,
B-complex) to Lyme patients. Its web site states that these nutrients
are not a cure but "provide daily support for the body's natural
metabolic activities." The club offers "a 10 percent discount off Pro
Health's already low, every day catalog prices." and states that "10
percent of each sale will go to Lyme disease research and advocacy
projects." However, the initial proceeds went to the Lyme Alliance, of
Concord, Michigan, an advocacy group that filed an amicus brief
supporting a court appeal by a Joseph Natole, Jr., M.D., whose state
medical board had sanctioned him for inappropriately managing patients
with actual or suspected Lyme disease. According to a report on the
Alliance's Web site: the court ruled against the doctor; his license
was suspended for three months; he was fined $50,000; and he was
subsequently indicted on federal charges of overbilling insurance
companies. The Alliance later circulated a petition stating that, "Lyme



disease can and does exist as a chronic illness with persisting
infection, and that the disease is greatly underdiagnosed and
undertreated." The petition demanded that, "Physicians who are on the
front lines of Lyme disease patient care not be harassed, persecuted or



made to fear for their medical practices because they do not adhere to
the conservative "short term" care for Lyme disease."
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