Dr. Elizabeth Maloney delivered the following remarks to the Tick-Borne Disease Working Group on July 8.

Good morning. I am speaking with the support of ILADS’ board of directors. I co-authored ILADS 2014 guidelines. If you haven’t read our guidelines, please do.

I’m here to discuss an illness so controversial we can’t even agree on what to name it.

I’ll call it “persistent manifestations of Lyme disease.”

The maneuvering at the April meeting regarding guidelines on persistent manifestations tells me that the controversy is entrenched and may be difficult to resolve without reliable and sensitive diagnostics that can identify root causes of persistent manifestations.

Several factors contribute to this impasse. Guideline development lacks true accountability. This is especially so when guidelines are published in journals that are owned and controlled by the issuing organization, as in-house reviewers may be less rigorous than unaffiliated reviewers.

The editorial biases of medical journals act to promote certain hypotheses and positions while simultaneously marginalizing minority perspectives and suppressing scientific exchanges. For example, my response to an editorial in Neurology was met with ad hominem attacks that necessitated interventions by the ombudsman.  

Misrepresenting evidence

Institutionalized bias and group-think appear to be wide-spread within the Lyme-related sections of the CDC and NIH. The NIH discussion of PTLDS misrepresents the evidence from the retreatment and xenodiagnostic trials. The CDC’s guidance on early Lyme does not reflect a careful assessment of the US trial evidence and could actually generate more patients with persistent manifestations should clinicians prescribe less than 20 days of amoxicillin, cefuroxime or doxycycline.

Dr. Ben Beard, of the CDC, suggested that acute and persisting manifestations are two different diseases, with distinct epidemiologic patterns. But this construct completely overlooks the Johns Hopkins SLICE study cohort who clearly began their trial life as disease “a” only to develop persisting manifestations despite being ideally diagnosed and treated. It is telling that no one within his group saw this gaping hole in their theory.

The confluence of the literature and agencies’ shortcomings leads to clinicians who are ill-equipped to diagnose and manage patients with persistent manifestations of Lyme disease.

Potential solutions:

• Restore the National Guidelines Clearinghouse, accepting only those that meet the National Academy of Medicine’s standards for guidelines development
• Reopen and encourage the use of PubMed Commons so that minority opinions can be heard. [Editor’s note: The National Institutes of Health discontinued PubMed Commons in 2018. Previously, it allowed scientists to comment on articles indexed in the agency’s database of biomedical literature.]
• Ensure that the CDC-controlled curriculum development team represents the broad scientific perspective on persistent Lyme disease. Merely seeking stakeholder input is insufficient.

Thank you.

Dr. Elizabeth Maloney is President of Partnership for Tick-borne Diseases Education, a 501(c) that provides educational resources to medical professionals and the public. She lives in a high-Lyme area of Minnesota.