Over the last few decades, the power of patient advocacy groups to affect change in the healthcare system has grown. The internet has made it easier than ever for like-minded individuals to join forces regardless of geography. Patient advocacy serves an important purpose in a strong democratic society; they hold public institutions accountable for their actions, raise awareness for lesser known ailments, and humanize the medical sciences. Recognizing the value of the patient’s perspective, many government initiatives have specifically sought out the opinion of patient advocates in developing health policy. One such example is the Federal Framework on Lyme Disease Act (FFLDA). Introduced because of patient concerns that Lyme disease patients were not being properly treated, the FFLDA mandates that the federal government develop a federal framework on Ly me disease that addresses surveillance, guidelines, and best practices. The FFLDA also mandated a conference be held to assist in developing the Framework, which was held in May 2016. In February 2017, the draft Framework was released for public feedback. Controversy surrounding Lyme disease is abundant. Patients, physicians, and researchers disagree about various aspects of the disease, how it manifests, how it should be diagnosed, and how it should be treated. From this gap, numerous diagnostic protocol and treatment regimens have been proposed as more suitable than current guidelines, with varying degrees of evidence supporting their efficacy. The concern is that allowing patient advocates to play such a prominent role in the development of the Framework not only is more costly and slower than expert-driven policy changes, but that it may lead to ineffective or harmful guidelines being implemented. I argue that the role of patient advocates and patient advocacy groups to influence policy making should be limited, particularly in controversial situations or where medical-evidence gaps exist.