HHS Lyme Roundtable Session (USA): The Gaslighting Era Is Over

Event Overview

The HHS (U.S. Department of Health and Human Services, roughly equivalent to the Swiss Federal Office of Public Health) Lyme Disease Roundtable marked a major turning point in the scientific and institutional recognition of chronic Lyme disease. Gathered in two panels, patients, clinicians, researchers, policymakers, and senior officials from the HHS and NIH (National Institutes of Health, similar to Switzerland’s biomedical research institutes) collectively acknowledged that chronic Lyme disease had been systematically overlooked or inadequately managed for decades. This broad consensus, expressed by experts across multiple disciplines, signals a decisive shift from denial to validation, scientific rigor, and concrete action. The roundtable was structured around two consecutive panels, addressing both patient experience and innovation, providing a comprehensive overview of challenges and emerging solutions.

This recognition of chronic Lyme disease as a serious, multi-system condition opened the door to discussions ranging from personal patient testimonies to cutting-edge scientific approaches, highlighting both the heavy human toll and the potential for transformative progress.

First Panel: Patients, Practitioners, and Partnerships

The first panel brought together patients, advocacy groups, clinicians, and U.S. Congress members to describe numerous cases of delayed or incorrect diagnosis, medical neglect, and long-term disability related to chronic Lyme disease. Panelists emphasized decades of institutional resistance to acknowledging the severity of the disease and stressed the urgent need for improved diagnostics, insurance coverage, and public awareness.

Key Participants:

• Congressmen Chris Smith and Morgan Griffith: reviewed decades of legislative efforts to secure recognition and research funding for Lyme disease.

• Dr. Ben Nemser (Steven & Alexandra Cohen Foundation): major investments in research with a patient-centered approach.

• Rachel Markey, Physician Assistant: clinical observations treating marginalized Lyme patients.

• Dovie Honig, founder of Life for Lyme: personal illness experience and advocacy work.

• Dr. Steven Phillips, clinician-researcher: experience with over 25,000 patients, advocating for recognition of persistent infection.

• Samuel Sofie and Olivia Goodreau: young patient advocates, describing long diagnostic journeys and difficulties accessing treatment.

• Dr. Linden Hu (Tufts University): new unbiased scientific approaches and drug repurposing strategies.

• Dr. Mehmet Oz: clarified Medicare policy regarding coverage for chronic Lyme disease.

Second Panel: Innovators

The second panel focused on scientific and technological solutions, including advanced diagnostics, immune modulation, data integration, and the use of artificial intelligence (AI) and machine learning for complex chronic infection-associated diseases, including Lyme disease.

Key Participants:

• Dr. Robert Bransfield: neuropsychiatric consequences of Lyme disease.

• Dr. Bruce Patterson: parallels between chronic Lyme and Long COVID.

• Dr. Michal Tal (MIT): engineering-based solutions and advanced measurement technologies.

• Drs. Alicia Jackson, Jay Bhattacharya, Stephanie Haridopolos, Kristen Honey (HHS & NIH): detailed new federal initiatives and research priorities.

• Dr. Anita Goel: advocacy for a tech-driven infrastructure to collect high-resolution, real-time health data to accelerate diagnostics and treatments.

Key Takeaways

• End of Institutional Denial: chronic Lyme disease is now officially recognized as a serious medical condition.

• Diagnostic Gaps: antibody-based tests often fail to detect persistent infection reliably.

• Disease Complexity: a multi-system condition often involving co-infections, which can mimic or trigger autoimmune or neurological disorders.

• Urgent Need for Innovation: direct-detection diagnostics, AI-driven data analysis, and therapies addressing both pathogens and chronic inflammation.

• Patient-Centered Approach: patient experience is central to research, policy, and care development.

• Policy and Funding: continuation of the LymeX program, establishment of Centers of Excellence, and clarification of Medicare coverage for chronic Lyme disease.