Study on medical gaslighting and Lyme disease captures global attention

In an article titled "Medical Gaslighting and Lyme Disease: The Patient Experience," Dr. Jennifer L. Fagen, associate professor of sociology, is shedding light on the challenges faced by Lyme disease patients. 

“Even though there are approximately half a million new cases of Lyme disease in the U.S. annually according to the CDC, it is often undiagnosed or misdiagnosed, which can result in a chronic, multisystemic condition, or even death,” Dr. Fagen said. “Chronic Lyme disease patients have a worse quality of life than people with multiple sclerosis, according to researchers. As such, Lyme disease is a recognized public health threat and is a designated ‘notifiable disease’”. 

The paper was co-authored by Chair of the Department of Psychology Dr. Jeremy Shelton and Jenna Luché-Thayer, former senior advisor to the U.S. government and the United Nations.  

“Dr. Shelton’s and Ms. Luche-Thayer’s contributions to this multidisciplinary research were invaluable. Jeremy Shelton has experience with a variety of parametric and nonparametric data analysis techniques, both of which were necessary for this project. Thankfully, statistical analysis of data is his favorite part of any research project. Not only does he enjoy and support cross-discipline collaboration in research, but he felt this was an important project that would have major societal impact,” Dr. Fagen said. 

Luche-Thayer’s role aided in helping understand the dynamics at play between patients and the medical community.   

“Jenna Luché-Thayer’s position as a former senior advisor to the U.S. government and the United Nations for transparency, accountability and human rights and the UN's recognition of her extensive documentation of the human rights violations and conflicts of interests related to Lyme disease, built an international framework to understand the dynamics driving the gaslighting of this marginalized patient group.“ 

Published in an international, peer-reviewed medical journal, the study is based on a comprehensive survey that gathered responses from nearly 1,000 individuals across 28 different countries. Dr. Fagen and her coauthors delved into the experiences of Lyme disease patients, examining the phenomenon of medical gaslighting within the context of this debilitating condition.  

Within a span of less than six weeks, the article garnered over 5000 unique views, drawing the attention of medical professionals worldwide. Renowned Lyme disease specialists have taken notice, with some creating videos and blogs discussing the significance of the findings in various languages. 

Among those who have acknowledged the study is Dr. Steven Phillips, a Yale-trained expert on zoonotic infections who has treated over 20,000 patients from more than 20 countries. Dr. Phillips, known for his advocacy and role in shaping healthcare laws, conducted a social media interview with the authors, adding his endorsement of the research stating, "This is an impressive piece of work. I think it should be the topic of a CME [Continued Medical Education] activity." 

The ripple effect of the research has spread across Lyme disease associations worldwide. Notable organizations such as the Lyme Disease Association of Australia, the U.K. Lyme Disease Association, and various others in the U.S., Canada, Sweden, Ireland, Scotland, France, Australia, the U.K., and Croatia have shared and endorsed the findings. Project Lyme, a nonprofit dedicated to funding Lyme disease research, has also featured the article prominently on its website.   

“It has been such an honor not only to have renowned medical doctors from around the world reach out to congratulate us on our publication, but also to ask to interview us. One of the frustrations of academia is the fact that not all of the important topics we publish translate into ‘real world’ changes,” Dr. Fagen said. “However, with these interviews, we were able to bridge this gap as medical doctors are making this information accessible not only to patients, but to other medical practitioners.” 

International recognition extends to Dr. Krzysztof Majdyło, chief doctor of St. Luke’s Medical Center in Gdansk, Poland; a specialist in chronic diseases, including autoimmune conditions and tick-borne infections. Dr. Majdyło engaged in an interview with the authors, contributing to the global conversation on the challenges faced by Lyme disease patients. 

“When it comes to public awareness, having doctors read our publication and share this information with other doctors can lead to important changes in the medical field,” Dr. Fagen said. “At this point, we can be relatively certain that the majority of doctors who treat Lyme globally have read our article and it has been shared with doctors who need to be more educated about both Lyme and the medical gaslighting of Lyme patients.” 

To learn more about Dr. Fagen’s findings visit, visit https://pubmed.ncbi.nlm.nih.gov/38200984/