Lyme Policy Wonk

It’s easy to get confused. You have the “Lyme Disease Foundation” (LDF), and you have the “American Lyme Disease Foundation” (ALDF). They both sound like patient advocacy organizations, but they are not. Welcome to the world of astroturf organizations—false grass roots organizations where names are intended to sound alike and offer no hint of special interests behind them. Until its recent demise, the LDF was a patient organization that was founded in 1988. And, the ALDF? Well, the ALDF was founded in 1994. It is a stealth front group for the Infectious Diseases Society of America (IDSA). Stealth front groups are seemingly independent third-party organization designed to deceive audiences as to the sponsor’s actual intentions.

When studies fail to take heterogeneity into account, researchers can leap to the wrong conclusion. In a recent open-access article, Dr. Fallon and colleagues describe the four NIH trials, the Krupp Stop-LD study, the Klempner seronegative study, the Klempner seropositive study, and Fallon neurologic study and make a key point. There are considerable differences between chronic Lyme patients (so-called patient heterogeneity) that need to be addressed in study design to improve what he calls the signal to noise ratio. If a study does not address heterogeneity, the results may simply reflect “garbage in, garbage out.”