NEWSGROUP FAQ'S - Political Aspects of Lyme
From: JWismille (jwismille_at_aol.com)
Date: 08/27/04
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Date: 27 Aug 2004 03:32:33 GMT
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the severity of the illness, endorses inadequate, outdated treatment protocols,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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