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Medical treatment guidelines are tremendously important in determining your treatment options. All important treatment guidelines are listed by the National Guidelines Clearinghouse (NGC), which is part of the US Department of Health and Human Services. It’s the government’s way of providing updated information about different diseases to health care professionals. NGC’s own rules require that listed guidelines be updated every 5 years. The Infectious Diseases Society of America has not revised its controversial Lyme disease guidelines for more than 5 years. Nevertheless, the NGC recently permitted the IDSA to continue listing the Lyme guidelines without updating them. Continue reading

The NGC’s decision was based on the IDSA’s claim that its antitrust review process in 2009 fulfilled NGC review requirements. We strongly disagree. (Read why here.)

The NGC needs to remove the IDSA 2006 Lyme guidelines listing until they have been fully reviewed and revised. The IDSA needs to review its guidelines in an open and transparent process that includes both patient advocacy representatives and physicians who treat chronic Lyme disease, reflects the current state of the science, and complies with GRADE–a rigorous assessment standard that the IDSA adopted for guidelines reviewed after 2008.  If you agree, sign the petition to let them know! 

Click here to sign petition

The LYME POLICY WONK blog is written by Lorraine Johnson, JD, MBA, who is the Chief Executive Officer of LymeDisease.org, formerly CALDA. Contact her at lbjohnson@lymedisease.org.

LYMEPOLICYWONK: Senators Request Removal of IDSA Lyme Guidelines from National Guidelines Clearinghouse

02 Feb
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Today Senators Blumenthal and Gillibrand joined together to ask the National Guidelines Clearinghouse (NGC) to remove the outdated 2006 IDSA Lyme disease guidelines from their website.(Full text of letter below.) We applaud the Senators for speaking up loud and clear. Their letter voices concerns that the guidelines do not satisfy the currency requirement and asks that the NGC remove the guidelines until the IDSA conducts a review that ensures that the guidelines reflect current evidence-based medicine principles. The Senate letter comes on the heels of a letter from Congressman Smith, Wolf, and Gibson expressing similar concerns. New York Assemblyman Richard Gottfried, who chairs the Health Committee also requested that the NGC remove the guidelines pending a review for currency. Approximately 10,000 people have signed a petition launched by LymeDisease.org calling for the removal of the IDSA guidelines from the NGC.
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NEWS: Morgellons disease probably a delusion, feds say

26 Jan
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From the San Francisco Chronicle: “Morgellons disease – a creepy illness that leaves patients with painful lesions, gives them a feeling that bugs are crawling all over their body, and has them seeing colorful, threadlike fibers poking through their skin – isn’t infectious and probably isn’t caused by anything in the environment, according to the first government study of the condition.” Continue reading

NEWS: Advocate responds to CDC’s conclusion that Morgellons patients are “delusional”

26 Jan
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Cindy Casey, RN, is director of the Charles F. Holman Foundation, an organization dedicated to the study of Morgellons disease. Morgellons is a mysterious condition that apparently causes bizarre and painful skin manifestations, including what seem to be fibers coming from the skin. Some, though not all, Morgellons patients also have Lyme disease. LymeDisease.org asked her to comment on recent conclusions by the Centers for Disease Control that Morgellons patients are delusional. Continue reading

HARD SCIENCE ON LYME: Research Finds Bartonella Transmission from Tick to Host

26 Jan
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It has long been known that ticks harbor Bartonella and that humans who have Lyme disease may also have Bartonellosis. However, the actual transmission of Bartonella from tick to host has not been demonstrated until a mouse study by Drs Reis and colleagues was published in May 2011. The study is available free on line for those interested. “This work represents the first in vivo demonstration of a Bartonella sp. transmission by ticks. It . . . corroborate[s] a prospect that ticks play a role in the natural cycles of some of the bartonellae including those pathogenic for humans. Consequently, bartonelloses should be included in the differential diagnosis for patients exposed to tick bites.” Continue reading

NEWS: Pennsylvania Lyme survey

23 Jan
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The Pennsylvania Lyme Disease Awareness Committee–a collaboration of the Chester/Delaware County Farm Bureau, the Lyme Disease Association of Southeastern PA, Inc. and the Chester County Health Department–is conducting a survey of PA residents about Lyme disease. Continue reading