LYMEPOLICYWONK: MUS is DUMB—Doctors with Unexplained Medical Beliefs

Lyme Disease Action (in the UK) filed a submission with the IDSA contesting the IDSA 2006 Lyme disease guidelines. The submission points out that the presentation of Lyme disease in the UK may be different than the presentation in the US, and the application of the guidelines in the UK lead to under-diagnosis and under-treatment of patients with Lyme disease.

Doing a guideline review process correctly and vigilantly is important. It is also a difficult goal to pull off. The 2006 IDSA guideline development process was flawed, as Connecticut Attorney General Richard Blumenthal found in the antitrust investigation. That panel was hand-picked to represent a particular viewpoint on treating Lyme disease and it cherry- picked the evidence or interpreting the evidence in a manner that supported a preconceived viewpoint. When science is unclear or unfolding rather than acknowledging that fact, guidelines sometimes rely on 'expert opinion' to fill the evidence gaps. This is a big problem because evidence based guidelines are presumed to be based on evidence, not opinion. Substituting the 'expert opinion' of someone on a guideline panel is no better, (actually, it is worse) than leaving the matter open and allowing the treating physician to use their own expert opinion.

Drs. Macauda and colleagues (including Peter Krause) conducted a survey of residents in the New England area and found: “The majority of our survey respondents believe that the Lyme disease spirochete can persist following antibiotic treatment, that a standard course of treatment for 2 to 4 weeks is often not curative, and that long-term antibiotic therapy of >2 months is sometimes useful.” The authors of the study recommend that state and federal agencies increase efforts to educate the public to curtail the “widespread belief in chronic Lyme”. But surely something’s wrong with this conclusion. The survey population was HIGHLY educated—almost half had a graduate degree and an additional third had a BA. They had extensive knowledge about the disease. Should we then assume, as the authors did, that their views reflect ignorance? Or should we assume that they actually just disagree with the IDSA claim that all patients are cured in 30 days, that persistent symptoms reflect “some other disease”, and that “chronic Lyme” doesn’t exist? Disagreement is not ignorance. Almost all of the participants knew at least one person with Lyme disease. Essentially, these people are saying what those of us in the Lyme community have known for some time: The IDSA guidelines are out of sync with reality.

Here’s an interesting approach to conflicts of interests offered by one of the fathers of evidence based medicine, Dr. Gordon Guyatt. The topic was guideline development and the interests of those serving on a guideline panel in having their pet theories and research promoted in the guidelines. Why is this important to researchers? It helps further the academic careers of researchers when their work is cited, referred to and used as the foundation for creating treatment guidelines. There is a dynamic tension between the use of expertise and the potential bias expertise may bring to the table. Those of us in the Lyme community are only too familiar with the fact that the IDSA guidelines were developed by academic researchers and that references to their own research dominate the guidelines. Being tied to a theory that your research has advanced creates a bias towards reinforcing that theory in the selection of evidence cited, the evaluation of that evidence, and the development of guideline recommendations that confirm that bias. Guyatt’s perspective is novel and interesting. In his mind the way to manage this bias is not to exclude the researchers from sitting on the guideline panel but to limit their ability to misuse their power to further their own ends. Hence, those with what he called a primary conflict of interest are precluded from chairing a guideline panel, drafting recommendations and voting on them and even the ranking of evidence. Read how he defines an intellectual conflict of interest and how he would restrict participation in guideline development by those with intellectual bias.