Lyme Disease Activists, A Threat to Public

exclamationThe Lancet Infectious Diseases, Volume 11, Issue 9, Pages 713 – 719, September 2011, Antiscience and ethical concerns associated with advocacy of Lyme disease summarizes the abstract as follows:

“Advocacy for Lyme disease has become an increasingly important part of an antiscience movement that denies both the viral cause of AIDS and the benefits of vaccines and that supports unproven (sometimes dangerous) alternative medical treatments. …” Stating that some “activists” describe Lyme disease as follows:

“Geographically limited tick-borne infection”

As “insidious, ubiquitous, difficult to diagnose, and almost incurable”

And “disease causes mainly non-specific symptoms”

And it can only “be treated … with long-term antibiotics and other unorthodox and unvalidated treatments”

They refer to them as “antiscience groups” and state that these “activists or advocates” “have created a pseudoscientific and alternative selection of practitioners, research, and publications and have coordinated public protests, accused opponents of both corruption and conspiracy, and spurred legislative efforts to subvert evidence-based medicine and peer-reviewed science.”  Also, stating that essentially they are a public threat. (You will need to login to read the summary and full abstract here.)

I once again have to commend the efforts of the California Lyme Disease Association, the Georgia Lyme Disease Association and the film “Under Our Skin” for their being outspoken and responding to this summary of the abstract that, (what do you know, has been prepared by a majority of the members of the Infectious Diseases Society Association’s (IDSA) panel members) despite much scientific data stating otherwise, refused to change the treatment guidelines for Lyme Disease.

California Lyme Disease Association’s, Lyme Policy Wonk blog, IDSA Dissing Lyme Advocates in the Lancet, begins like this.

“A recent article in Lancet written primarily by authors of the IDSA Lyme guidelines aims ”to blow apart the world of the Lyme disease advocates”–a goal that sounds more appropriate to warfare than medical journalism. Most of the authors of the article were under investigation by the Connecticut Attorney General for violation of antitrust laws in connection with the development process for the IDSA Lyme guidelines. The opinion piece is included in Lancet’s “personal view” section and reads like a personal vendetta from those named in the antitrust investigation, referring to patient advocacy groups as “antiscience” and making ad hominem attacks on physicians who treat chronic Lyme disease.”… You need to read the entire blog. (Click here)

“The LYME POLICY WONK blog is written by Lorraine Johnson, JD, MBA, who is CALDA’s Chief Executive Officer. Contact her at lbjohnson@lymedisease.org.”

Lyme disease film “Under Our Skin” responds: “Antiscience? Most of the authors of this letter were authors of the flawed IDSA Lyme guidelines which still govern diagnosis, treatment & insurance. Ignoring scientific evidence of the widespread distribution of Lyme and its persistence, for now they have the bully pulpit and mouthpiece of establishment medicine & media. Their arrogance contributes to the misery of many.”

The Georgia Lyme Disease Association’s response: “they claim ADVOCATES are antiscience? Any pot around here wants to call a kettle black? Is it any wonder that people by the thousands turn to alternative medicine? When allopathic medicine doesn’t police itself any better than this and we’re left with a bunch whose denial of substantial published research blocks access to treatment and leaves many suffering, patients no longer trust and find their own solutions. Such a pity.”

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