Debate dogs Lyme meeting

As Lyme disease experts gather today (11th October) in Washington DC for a two-day linkurl:scientific workshop;http://iom.edu/Activities/Disease/TickBorne.aspx organized by the Institutes of Medicine (IOM), a trio of disease advocacy groups have withdrawn their participation, claiming that the meeting is biased.

An adult deer tick (__Ixodes scapularis__)
Photo: Scott Bauer, courtesy USDA

After "much deliberation," the groups -- Time for Lyme, the Lyme Disease Association (a national group), and the California Lyme Disease Association -- decided to walk away from the meeting, arguing that organizers are not presenting enough information about the possibility that the disease can be chronic, and requires a long-term regimen of antibiotic drugs.Patients are typically administered a 2-3 week course of antibiotics to clear the infection. Some Lyme patients, however, complain of lingering symptoms weeks, months, or years after treatment stops, prompting some physicians and patient advocates to claim that the disease is chronic and persistent, and should be managed with long-term antibiotics.The groups object to an agenda listing several presentations from members of the Infectious Disease Society of America (IDSA), which in 2006 published widely-accepted Lyme disease linkurl:treatment guidelines;http://www.idsociety.org/content.aspx?id=4432#ld that advise against long-term antibiotic treatment. Four of the six members of a panel that will write a report about the workshop are also members of the IDSA."We can't give any kind of approval to these people and this process. This is wrong. It does not at all serve the interests of patients," said Patricia Smith, president of the non-profit Lyme Disease Association. "I don't think that there's any chance of openness of mind there."IOM spokesperson Christine Stencel contends that the institute did not invite speakers in a biased way and in fact precluded individuals who had worked on the 2006 IDSA guidelines -- which were criticized by linkurl:some;http://www.the-scientist.com/news/display/49605/ for perceived conflicts of interests among its authors -- from serving on the workshop committee. "We know that there are different perspectives that are important, and we are trying to be responsive to all these challenges and needs."This week's meeting will seek to highlight gaps in science on the disease as voiced by stakeholders in the field, Stencel added. "The selection of the topics and the development of the agenda for this upcoming workshop has been based on hearing from many groups, individuals and organizations on issues that they think are important."Smith, along with her peers at Time for Lyme and the California Lyme Disease Association, protested by withdrawing a report that the IOM had asked them to submit to the meeting, instead entering it into the Congressional record. The report deals with patient perceptions of gaps in the research surrounding Lyme and other tick-borne diseases and calls for more research into treating chronic Lyme infections.Lyme is the most common tick-borne disease in the U.S. There were approximately 30,000 confirmed cases of Lyme disease last year, up from just 16,000 confirmed cases in 1999. Most cases of Lyme disease in the US are caused by __Borrelia burgdorferi__, a species of bacteria that is transmitted by tick bites to humans and other mammals.The kerfuffle over this week's IOM meeting highlights a long running rift in the Lyme disease community. A minority of Lyme disease researchers and physicians believe that chronic persistent Lyme disease is a real threat that is best treated with months of antibiotics, and sometimes even intravenous injections of the drugs. Patients and their advocates often recount harrowing stories of fatigue, chronic pain, cognitive impairment, and other ailments lasting long after contracting the disease. However, scientists like Paul Mead, medical epidemiologist at the Center for Disease Control and Prevention, cite a handful of placebo-controlled clinical trials that failed to find any benefit of extending antibiotic treatment beyond three weeks in Lyme patients. The most recently published paper, a 2008 NIH-funded linkurl:study;http://www.neurology.org/cgi/content/abstract/70/13/992 in __Neurology__, tracked 37 patients complaining of memory impairment, fatigue, and pain after receiving a standard regimen of antibiotics after contracting Lyme disease. Patients on a 24-week course of antibiotics showed only mild cognitive function improvements.The study echoed the results of two earlier trials in which researchers found no greater benefit in patients who received 3 months of antibiotics compared to those who were given a placebo. "If there was good scientific evidence that people were infected for a long time and long-term antibiotics were beneficial, I don't think we would be having this debate," Mead, who is presenting at the IOM meeting, told __The Scientist__. "The fact is that the studies have been done, and the science doesn't support that view."However, Daniel Cameron, an epidemiologist and attending physician at Northern Westchester Hospital in New York, said that the studies had serious design flaws, such as the enrollment of severely sick patients and small sample sizes.He regularly prescribes long-term antibiotic treatment to patients with chronic Lyme disease, and has published linkurl:critiques of the studies;http://www.ncbi.nlm.nih.gov/pubmed/19268485 and epidemiological data of his own that he says supports the notion that chronic Lyme is a real problem helped by longer courses of antibiotics.In 2007, Cameron published a linkurl:case-controlled study;http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2753.2006.00734.x/abstract in the __Journal of Evaluation in Clinical Practice__ that showed that 24 out of 100 patients who were treated for Lyme disease presented symptoms of the disease years after being infected. In the majority of these cases, Cameron suggested, delayed treatment of the initial infection appeared to be a major risk factor in developing chronic symptoms. He cautioned against lending too much credence to the findings that long-term antibiotics are not beneficial to chronic Lyme patients, but said that the placebo-controlled studies on treating persistent Lyme symptoms with long-term antibiotics do much to linkurl:establish the existence and seriousness of chronic Lyme.;http://www.hindawi.com/journals/ipid/2010/876450.html "Those trials do one thing: establish the burden of the disease," said Cameron, who is attending the IOM meeting and is immediate past president of the International Lyme and Associated Diseases Society (ILADS), which published linkurl:Lyme treatment guidelines;http://www.ilads.org/lyme_disease/treatment_guidelines.html that do support long-term antibiotic treatment.Meanwhile, some researchers are elucidating interesting facets of the disease by looking at latter stages of infection in animal models. linkurl:Stephen Barthold,;http://faculty.vetmed.ucdavis.edu/faculty/swbarthold/ director of veterinary pathology at the University of California, Davis, has found linkurl:evidence;http://www.ncbi.nlm.nih.gov/pubmed/18316520 of pockets of dormant bacteria evade antibiotic treatment and linkurl:persist;http://www.ncbi.nlm.nih.gov/pubmed/19995919 in mouse models of Lyme disease. "Persistence is the rule not the norm for this particular bacteria," he said. "It can evade immune clearance quite readily." These "metabolically shut down" bacteria, Barthold explained, could potentially persist and become active long after antibiotics are administered.Extending Lyme research beyond the acute phase of infection is the logical next step, Barthold, who is presenting at the IOM meeting, said, adding that the opponents on both sides of emotionally charged debate must try to stay open to new knowledge about the disease. "We can't afford to be totally dogmatic about things. We need to keep an open mind. There's a lot of mistruth out there, and there's a kernel of truth in everybody's story."
**__Related stories:__***linkurl:Antitrust probe spurs disease review;http://www.the-scientist.com/blog/display/54627/
[2nd May 2008]*linkurl:State official subpoenas infectious disease group;http://www.the-scientist.com/news/display/49605/
[7th February 2007]*linkurl:Hate ticks? Save deer;http://www.the-scientist.com/article/display/38020/
[January 2007]

Debate dogs Lyme meeting

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