Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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REMOVE OUTDATED Infectious Diseases Society of Americas GUIDELINES FROM NGC! Lyme

Discussion in 'Lyme Disease and Co-Infections' started by *GG*, Jan 28, 2012.

  1. *GG*

    *GG* Moderator

    Concord, NH
    Treatment guidelines are tremendously important in determining your medical treatment options. All important treatment guidelines are listed by the National Guidelines Clearinghouse (NGC). NGC requires that guidelines be updated every 5 years.

    The IDSA has not revised its guidelines for more than 5 years. Nevertheless, the NGC recently permitted them to continue listing the guidelines without updating them based on the IDSAs claim that the antitrust review process fulfilled NGC review requirements.

    This is wrong because:
    1.The IDSA antitrust review panel was expressly NOT empowered to revise or update the guidelines;

    2.The IDSA told the NGC that it had internally reviewed the guidelines in 2011 and decided they did not require change. However, this review is not listed on their application to the NGC nor is the process of any such review disclosed as required by NGC guidelines;

    3.The IDSA antitrust review process recommended over 25 changes to the guidelinesnone of which have been implemented. There also was no consensus on mandatory lab testing for diagnosis; and

    4.The 2006 guidelines are not current since they do not reflect new science including the Barthold mouse study and the Embers monkey study. Both studies found persistent infection, which is denied in the 2006 guidelines.

    Sign the petition to urge:
    The NGC to remove the guidelines as its listing rules require.

    The IDSA to revise its guidelines in a transparent process that includes both patient advocacy representatives and physicians who treat chronic Lyme disease.

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