The Lyme disease roundtable followed a similar event on Long COVID, which still hasn’t led to action on the disease
On Monday, the federal Department of Health and Human Services (HHS) recognized Lyme disease, including both its acute and chronic forms, with a roundtable event featuring government officials, researchers, clinicians, and patient advocates in two panel discussions.
The agency also announced new research funding and awareness efforts. These included a $10 million initiative that will use AI tools to help with detecting the disease, updated Medicare guidelines, and a new “resource page” for the disease hosted on the HHS website, which went live Monday.
Health Secretary Robert F. Kennedy Jr. moderated the roundtable discussion, which included top health agency leaders, Sen. Susan Collins (R-ME), and other Republican congressmembers.
While the Lyme event followed similar roundtable discussions for Long COVID in September, the HHS has yet to share any public updates about initiatives announced during that prior event. A resource page promised for Long COVID still isn’t up, and action plans for Long COVID promised within “weeks” by an Advanced Research Projects Agency for Health (ARPA-H) leader have not been announced. In October, some Long COVID and chronic disease advocates authored a letter denouncing Kennedy.
Lyme disease occurs when an infected tick bites a person, spreading bacteria called Borrelia. While antibiotics are available to treat the acute infection, not all infections are immediately detected, and some people go on to experience chronic symptoms even after treatment. About 10% to 20% of those infected experience Lyme infection-associated chronic illness (Lyme IACI), according to a 2025 report from the National Academies of Sciences, Engineering, and Medicine.
This category of chronic diseases, often called chronic Lyme, has long been controversial within the medical establishment and difficult for patients to navigate. Some healthcare providers who claim to treat it offer unproven interventions. In recent years, some scientific and medical organizations have recognized Lyme IACI as part of the growing infection-associated chronic condition field.
Kennedy shared both his own and his sons’ experience with Lyme disease during his opening remarks. In his Senate confirmation hearing, he also stated one of his sons is “dramatically affected” by Long COVID.
Though the event focused on Lyme, Kennedy used part of the opening remarks of the roundtable to spread a debunked conspiracy theory about the HIV drug known as AZT, stating that it “probably killed more people than HIV/AIDS.” In fact, the drug saved lives. Such false claims are characteristic of Kennedy’s previous public statements on, and denial of, HIV/AIDS.
Kennedy has also previously promoted the conspiracy theory that Lyme disease is a manufactured “bioweapon.” Food and Drug Administration Commissioner Marty Makary has also pushed this false claim, as has Rep. Chris Smith (R-NJ), who spoke at the roundtable event. Research into Lyme suggests the bacteria have actually been present in the U.S. for thousands of years.
“One of the reasons we wanted to host this meeting … is to announce to the world that the gaslighting of Lyme patients is over,” Kennedy said later in the event, to applause.
Several speakers at the roundtables discussed experiencing or witnessing dismissal from medical providers and called for broader education about Lyme. “It took 51 doctors and 18 months for me just to be diagnosed with Lyme disease,” said speaker Olivia Goodreau, who founded the LivLyme Foundation at age 12 to raise awareness and support research.
Speakers also noted commonalities between Lyme IACI and Long COVID, in people’s experiences with the diseases as well as potential underlying biological drivers, such as persistent pathogens.
Speaker Bruce Patterson, a physician-researcher whose company IncellDx has developed tests for these diseases, described his experience of starting to see people with Long COVID early in the pandemic and realizing that some of them actually had Lyme, and “probably weren’t even adequately treated at the time.”
Patterson, along with other clinicians and scientists at the event, said that diagnostic tests are urgently needed to diagnose Lyme IACI more quickly and to distinguish between people whose chronic symptoms stem from different underlying drivers — Borrelia, SARS-CoV-2, and other infections.
“The reason that chronic Lyme is an invisible illness is because we don’t have the test to measure it,” said speaker Michal Tal, an immunoengineer at the Massachusetts Institute of Technology who studies IACCs. “People are often still told that they’re fine while their bodies are breaking down. And I think one of the real tragedies is that we wait for their bodies to break down to really try to help.”
Better measurements would allow clinicians to help people more quickly, Tal said, and her research group is working to develop such measurements. The two roundtables also discussed a large-scale study at Tufts University, funded by the National Institutes of Health, which will follow people starting from acute Lyme diagnosis to track who develops chronic symptoms.
People are often still told that they’re fine while their bodies are breaking down. And I think one of the real tragedies is that we wait for their bodies to break down to really try to help.
Michal Tal, MIT, speaking at the roundtable event
Amy Mitchell, a Long COVID advocate who has had past experience with Lyme disease and other tickborne infections, agreed that better diagnostic tests should be a top priority. Researchers should be looking for active, chronic infections, she said, adding that most current tests rely on measuring antibodies which can be unreliable as “the immune response is suppressed by these infections.”
Mitchell also wants to see more public education about tick prevention methods, such as repellent spray and clothing, and more surveillance of different potential tickborne infections along with Borrelia.
Overall, Mitchell called the event an “encouraging gesture” but was skeptical about meaningful long-term change. A previous Tick-Borne Disease Working Group at HHS, which was established by Congress in 2016 and provided detailed recommendations to health agencies, was “ignored,” she said.
In a press release following the event, the HHS confirmed the renewal of the LymeX Innovation Accelerator, which began during President Trump’s first term. The $10 million public-private initiative aims to improve diagnostics and care for Lyme disease through AI technology and other methods. The initiative is a collaboration with the Steven & Alexandra Cohen Foundation, a philanthropic organization that provides grants to health and community nonprofits. Program officer Bennett Nemser represented the foundation at both of Monday’s roundtables.
HHS also posted a new webpage devoted to Lyme disease. The page highlights government efforts to tackle Lyme, including brief descriptions of new initiatives coming in 2026: a “12-week sprint” to develop new tools for Lyme and other “invisible illnesses,” with cash prizes available; evidence-based guidelines based on a resource from Mount Sinai’s complex chronic illness center; and a clinician locator tool.
During the event, Centers for Medicare & Medicaid Services (CMS) Administrator Mehmet Oz announced updated guidance to clarify that Medicare will support beneficiaries with Lyme disease and related conditions through the chronic care management program.“This support expands access to coordinated care and reduces financial barriers for Medicare patients with complex, long-term conditions,” the HHS press release stated.
It is currently unclear if people with Long COVID would also get support through this guidance, qualifying under “related conditions.” Both Lyme disease and ME are explicitly listed on the CMS page, but Long COVID is not.
Devin Russell, the executive director of the Long COVID Foundation, was a patient representative at this fall’s Long COVID roundtable. He has been affected by both Lyme disease and Long COVID and said the Lyme roundtable was “overall positive.” He hopes to see ARPA-H follow up on commitments they made during the roundtables. “They can move quickly,” he said, explaining that the agency funds high-risk, high-reward biomedical research that doesn’t have the same red tape as other agencies.
Still, Russell said he has had “minimal communication” from government contacts despite his attempts to follow up about initiatives discussed during the Long COVID roundtable. While the government shutdown likely had led to a delay, he pointed out that the Lyme disease resource page is live now, while the Long COVID page — promised three months ago — is nowhere to be found.
“I’m hoping in the new year that [ARPA-H] can get moving on chronic Lyme and Long COVID,” he said.
Until then: “Words are easy, and action is much more difficult.”
I’m hoping in the new year that [ARPA-H] can get moving on chronic Lyme and Long COVID…Words are easy, and action is much more difficult.
Devin Russel, Long COVID Foundation
List of speakers:
Roundtable 1: Patients and providers
- Robert F. Kennedy Jr., Health and Human Services
- Mehmet Oz, Centers for Medicare & Medicaid Services
- Rep. Chris Smith (R-NJ)
- Rep. Morgan Griffith (R-VA)
- Rachel Markey, Restorative Health & Wellness Center
- Steven Phillips, independent physician
- Sam Sofio, patient advocate
- Olivia Goodreau, LivLyme Foundation
- Duvi Honig, Life for Lyme, Orthodox Jewish Chamber of Commerce
- Linden Hu, Tufts University Lyme Disease Initiative
- Bennett Nemser, Steven & Alexandra Cohen Foundation
Roundtable 2: Research innovators
- Sen. Susan Collins (R-ME)
- Jim O’Neill, Health and Human Services
- Alicia Jackson, Advanced Research Projects for Health (ARPA-H)
- Jay Bhattacharya, National Institutes of Health (NIH)
- Robert Bransfield, independent physician
- Bruce Patterson, Health Bio
- Michal Tal, MIT Department of Biological Engineering
- Stephanie Haridopolos, Office of the Surgeon General
- Kristen Honey, Department of Health and Human Services
- Anita Goel, Nanobiosym R&D Institute and Nanobiosym Diagnostics
- Bennett Nemser, Steven & Alexandra Cohen Foundation
Miles Griffis and Betsy Ladyzhets contributed reporting. This is a developing story; we may add additional comments and details later in the week.
Send us tips for further coverage of HHS actions on Lyme, Long COVID, and other related diseases at editors@thesicktimes.org, or reach out to Betsy on Signal @betsyladyzhets.25 or Miles at @milesgriffis.31.
Editor’s note, December 16, 6 p.m. ET: This story was updated to include a full list of speakers at both roundtables.
All articles by The Sick Times are available for other outlets to republish free of charge. We request that you credit us and link back to our website.
