Voices of Lyme
New York City, NY. - August 14, 2002 - Voices of Lyme, a national organization representing chronic Lyme disease patients, will conduct a protest demonstration at the IX International Conference on Lyme Borreliosis and Other Tick-borne Diseases, August 20th starting at 11:00 AM at The Grand Hyatt New York. The VOL says conference organizers have excluded medical experts with divergent viewpoints on the extent and treatability of Lyme disease, which is transmitted by tick bites and strikes up to160,000 Americans annually.
"Doctors are traveling from all over the world to come to NYC to learn all about Lyme disease, yet this conference is excluding a whole segment of the disease, and most importantly, of patients, those with chronic Lyme disease," said VOL spokesman Eva Haughie. "Our very existence is being denied by exclusion of our doctors and our labs. We need to raise our voices and our picket signs and remind conference organizers that they may control the science inside, but outside in the real world, people suffering from chronic Lyme disease are not going to be silenced by their censorship."
"The committee organizing the conference is giving the impression that they are not open to discussing alternative, scientific viewpoints regarding chronic, recurring Lyme," said Dr. Dan Cameron of the International Lyme and Associated Disease Society (ILADS), an organization of respected Lyme researchers. "Those of us who believe, and are prepared to present extensive evidence, that Lyme is widespread and requires lengthy treatment have seen our abstracts rejected and are unable to present evidence gathered in a traditional, scientific manner. ILADS has been developing practice-treatment guidelines to help physicians recognize and treat chronic Lyme, and this valuable material has been barred."
Lyme disease is caused by the bacterium Borrelia burgdorferi, which is transmitted through the bite of an infected tick. It is often difficult to diagnose and to treat. Symptoms include headache, fever, muscle and joint aches, severe fatigue and malaise and sometimes, the "bulls-eye" rash. According to the CDC, approximately 16, 000 new cases of Lyme are reported in the U.S. each year, but many experts believe 90 percent of Lyme infections are not reported. Evidence is also growing that the standard four-week cycle of antibiotic treatment is ineffective, and that the disease requires antibiotic therapy for longer periods of time.
Dr. Cameron has encouraged authors of rejected abstracts to submit them to ILADS for publication in a booklet that will be distributed independently at the conference. An information center has been set up in The Grand Hyatt by IGeneX, Inc., a prominent California-based Lyme research laboratory, where ILADS will present its data.
"There are powerful, persuasive and well-supported opposing viewpoints on Lyme. We have medical evidence showing many cases of Lyme go undiagnosed and that, those which are diagnosed, need to be treated as long as there are clinical symptoms" said Dr. Nick Harris, President and CEO of IGeneX, whose approval to exhibit at the conference was abruptly withdrawn with no reason given. "Unless these facts are understood, many patients will go on needlessly suffering from this debilitating disease."
ABOUT THE VOICES OF LYME (VOL)
The Voices of Lyme is a grass roots activism organization representing thousands of patients with chronic Lyme disease. It works toward focusing public attention on issues of chronic Lyme patients.
The mission of the International Lyme and Associated Diseases Society (ILADS) is to create an interdisciplinary forum for health science professionals where they can communicate their collective wealth of knowledge, as accumulated from their many years of experience in the management of Lyme and associated diseases.
IGeneX, Inc. is a specialty immunology laboratory and research facility, providing personalized service to over 1,000 private practice physicians, hospitals, and other clinical reference laboratories throughout the U.S. and Canada. The laboratory also functions as a pilot site for diagnostic manufacturers in the introduction of new assays, and has extensive collaborative agreements with multiple research groups.
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