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The Mayday Project has scheduled a conference, protest, and vigil at IDSA headquarters in Arlington VA from April 29 through May 1. With the IDSA guidelines up for review, now it is more important than ever for patients to stand together and demand change:
ARLINGTON, Va., April 21, 2015 /PRNewswire/ -- The Mayday Project -- a volunteer organization comprised of those touched by Lyme disease -- wants to know the answer to the question: How can certain members of the Infectious Diseases Society of America (IDSA) review panel, those with entrenched intellectual conflicts of interest, be trusted to revise the guidelines for the diagnosis and treatment of Lyme disease?
On March 9, IDSA released a project plan to update its Lyme disease treatment guidelines; guidelines The Mayday Project believes already harm patients who are routinely misdiagnosed and unable to obtain medically necessary treatment due to the restrictions imposed by those guidelines. The IDSA plan provides a period for public comment, which ends April 24.
Mayday co-founder Josh Cutler says, "What's most disturbing is that the 2015 IDSA review group contains members who are not coming to the task from neutral positions." According to Cutler, "Six people involved in the 2015 guideline revisions helped co-author the 2006 guidelines. The seventh person led the internal IDSA review of those guidelines after a state investigation in Connecticut. These seven people, at the very least, have inherent intellectual conflicts of interest. In addition to authoring or reviewing the 2006 guidelines, they have continued to publish articles maintaining the view that there is no convincing evidence for the existence of chronic Lyme disease."
Cutler identified the seven panelists as Linda Bockenstedt, MD; John J. Halperin, MD; Peter J. Krause, MD; Allen C. Steere, Jr., MD; Franc Strle, MD, PhD; Gary Wormser, MD; and Paul Lantos, MD.
"These seven should be removed from the panel and replaced by experts open to considering the abundant evidence for the existence of chronic Lyme," Cutler said.
All of the seven except Lantos sat on the 2006 IDSA guidelines panel. Lantos chaired the panel that reviewed the 2006 guidelines and left them unchanged.
In November 2006, Connecticut Attorney General Richard Blumenthal (now a U.S. Senator) launched an investigation of the IDSA guideline development process, specifically looking for antitrust violations.
In a May 2008 press release Blumenthal said, "My office uncovered undisclosed financial interests held by several of the most powerful IDSA panelists. The IDSA's guideline panel improperly ignored or minimized consideration of alternative medical opinion and evidence regarding chronic Lyme disease, potentially raising serious questions about whether the recommendations reflected all relevant science."
In 2009, the guidelines were reviewed but no significant changes were made, despite the large body of peer-reviewed evidence for the existence of chronic Lyme disease presented to the panel. Paul Lantos, MD, led the IDSA investigation, which concluded:
The 2006 Lyme disease guidelines were based on the highest-quality medical and scientific evidence available at the time and are supported by evidence that has been published in more recent years. The Review Panel did not find that the 2006 guidelines authors had failed to consider or cite relevant data and references that would have altered the published recommendations.
Dr. Lantos will serve in a leadership position on the new panel, along with Dr. Bockenstedt; Yngve Falck-Ytter, MD; and Jeffrey A. Rumbaugh, MD.
Mayday has scheduled a conference, protest and vigil at IDSA headquarters from April 29 through May 1 to call for the removal of the panelists with the most serious conflicts of interest and full compliance with the Institute of Medicine's (IOM) standards for trustworthy guidelines: http://www.iom.edu/Reports/2011/Clinical-Practice-Guidelines-We-Can-Trust/Standards.aspx
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