Click here to watch the replay of the meeting on YouTube.

The following summary and transcript were generated by a machine transcription service and may contain errors.

Event summary

The HHS Lyme Disease Roundtable, hosted by Secretary Kennedy, consisted of two sequential panels. The first panel, “Patients, Practitioners, and Partnerships,” focused on the personal and clinical impact of Lyme disease.

Panelists, including patients, advocates, clinicians, and congressmen, shared stories of misdiagnosis, medical dismissal, and the devastating effects of chronic Lyme. They discussed the historical failure of the medical establishment to acknowledge the disease’s severity and the critical need for better diagnostics, insurance coverage, and public awareness.

The second panel, “Innovators,” shifted the focus to scientific and technological solutions. Researchers and leaders from HHS, NIH, and private institutions discussed cutting-edge approaches, including the use of AI and machine learning, advanced diagnostics, immune modulation, and data integration to understand and treat Lyme and other infection-associated chronic illnesses.

Throughout both sessions, Secretary Kennedy emphasized a new federal commitment to validating patient experiences, ending the “gaslighting” of the Lyme community, and fostering innovation through public-private partnerships. Key announcements included the renewal of the LymeX Innovation Accelerator and a change in Medicare policy to explicitly cover chronic Lyme disease.

Background

The roundtable featured a diverse group of speakers. The host, Secretary Kennedy, framed the discussion with his personal family experience with Lyme disease. The first panel included:

• Congressman Chris Smith and Congressman Morgan Griffith, who provided legislative perspectives and histories of fighting for Lyme disease recognition and funding in Congress.
• Dr. Ben Nemser of the Steven and Alexandra Cohen Foundation, who detailed the foundation’s significant funding for Lyme research and its patient-centric approach.
• Rachel Markey, a physician assistant, who offered a frontline clinical perspective on treating marginalized Lyme patients.
• Dovie Honig, a patient and founder of Life for Lyme, who spoke about his personal battle and advocacy for awareness and prevention.
• Dr. Steven Phillips, a physician and researcher, who detailed his clinical experience treating over 25,000 patients and argued for the existence of persistent infection.
• Samuel Sofie and Olivia Goodreau, young patients who became advocates, sharing their harrowing journeys to diagnosis and the need for affordable, effective treatments.
• Dr. Linden Hu, an infectious disease physician from Tufts University, who discussed new “unbiased science” approaches and drug repurposing studies.
• Dr. Mehmet Oz, who announced a critical policy change regarding Medicare coverage for chronic Lyme.

The second panel included:

• Dr. Robert Bransfield, a psychiatrist who discussed the severe neuropsychiatric manifestations of Lyme disease.
• Dr. Bruce Patterson, a viral pathologist who drew parallels between Long COVID and chronic Lyme, focusing on chronic inflammation and pathogen persistence.
• Dr. Michal Tal from MIT, an immuno-engineer who described using engineering principles and advanced measurement tools to solve the “solvable problems” of Lyme.
• Dr. Alicia Jackson, Dr. Jay Bhattacharya, Dr. Stephanie Dr. Stephanie Haridopolos, and Dr. Kristen Honey, all leaders within HHS and NIH, who outlined new federal initiatives, research priorities, and a commitment to data-driven, patient-centered solutions.
• Dr. Anita Goel, a physicist and physician, who advocated for a tech-based infrastructure to collect high-resolution, real-time data to accelerate diagnostics and therapies.

Key points

• End of “Gaslighting”: A primary point from Secretary Kennedy and others was that the era of dismissing and denying the reality of chronic Lyme disease was over, with HHS now officially recognizing it as a serious illness.
• Inadequacy of Diagnostics: Multiple speakers emphasized that current diagnostic tests, particularly antibody tests, were unreliable, missing many cases and failing to detect persistent infection, which delayed proper treatment.
• Complexity of Lyme Disease: Panelists described Lyme not as a simple infection but as a complex, multi-systemic illness often complicated by co-infections, which could mimic and cause conditions like rheumatoid arthritis, MS, and fibromyalgia.
• Need for Innovation: There was a strong consensus on the need for innovative approaches, including direct detection tests, AI and machine learning to analyze complex data, and new therapies that address both the pathogen and the resulting chronic inflammation.
• Patient-Centered Approach: The experience of patients was repeatedly highlighted as the central driver for change. Speakers argued that listening to patients was critical for understanding the disease and developing effective solutions.
• Policy and Funding Commitments: HHS announced the renewal of the LymeX public-private partnership, the development of Centers for Excellence, and a crucial update to Medicare to cover chronic Lyme care, signaling a major shift in federal policy.

Notable quotes

• “For many years, this agency had a deliberate policy to refuse to engage with the Lyme community, and there were top officials in this agency who were saying that Lyme disease did not exist… This agency this day marks a milestone in this agency where we are recognizing that this is an illness.” – Secretary Kennedy (25:42), said during his opening remarks, establishing the historical context of neglect and the roundtable’s significance as a turning point.
• “We used to talk to the wall in this building and they were always polite, would sit there, yes, yes, and then nothing would happen and you’re doing it. Thank you and God bless.” – Congressman Chris Smith (42:25), said while thanking Secretary Kennedy, highlighting the decades of frustration advocates faced when dealing with federal health agencies.
• “It took 51 doctors and 18 months for me to just be diagnosed with Lyme disease. Then it took another three years and four more doctors to be diagnosed with five other co-infections.” – Olivia Goodreau (56:55), said during her introduction, illustrating the arduous and painful diagnostic odyssey that many Lyme patients endure.
• “We can cover chronic Lyme disease. It’s actually already covered… We’ve updated our website to make it clear that chronic Lyme disease is in present because it’s a disease that is… clearly identifiable infectious triggers that includes Lyme disease.” – Dr. Oz (1:11:08), said when announcing the clarification of Medicare’s Chronic Care Management guidelines, representing a major policy victory for patients seeking coverage for long-term care.
• “The situation, if you explain this to Joe the plumber, they would say, what is wrong with this field? It is so messed up. How can this paradigm have persisted for so long? This isn’t easy to diagnose and easy to treat illness when the facts speak otherwise, and they have done so for decades.” – Dr. Steven Phillips (1:18:37), said in response to a question about innovations, expressing deep frustration with the medical establishment’s long-held, inaccurate views on Lyme disease.

Kicker Quotes

• “The gaslighting of Lyme patients is over.” – Secretary Kennedy (1:12:41)
• “Some patients spend years sinking all of their money into treatment, but they don’t get better. We are hoping for more research to know what works.” – Samuel SoFi (55:14)
• “No one should have to be the FDA of their own body and take such extreme risks.” – Dr. Kristen Honey (2:40:26)

Detailed Insights

1. Main Arguments:

• The federal government and the medical establishment historically failed Lyme patients through a “culture of denial,” inadequate diagnostic tools, and a refusal to acknowledge chronic forms of the disease. (Secretary Kennedy @ 25:42, Congressman Smith @ 41:12)
• Lyme disease is not a simple, easily cured infection but a complex, persistent, and multi-systemic illness, often involving co-infections that cause a wide range of chronic and autoimmune conditions. (Dr. Steven Phillips @ 1:18:37)
• A new, data-driven paradigm was needed, leveraging innovations like AI, direct-detection diagnostics, and unbiased “multi-omics” science to understand the host-pathogen interaction and develop personalized treatments. (Dr. Lyndon Who @ 58:26, Dr. Mickey T @ 2:22:46, Dr. Anita Goel @ 2:42:18)
• Patient experiences must be at the center of all research and policy, and public-private partnerships were essential to accelerate progress and break through institutional inertia. (Secretary Kennedy @ 30:27, Dr. Ben Emser @ 43:11)

2. Supporting Evidence:

• Personal Testimonies: Panelists shared powerful personal and family stories of suffering, misdiagnosis, and financial ruin caused by Lyme disease. (Secretary Kennedy @ 24:25, Samuel SoFi @ 54:33, Olivia Goodrow @ 56:55)
• Policy Announcements: Dr. Oz announced that Medicare’s Chronic Care Management guidelines were updated to explicitly include chronic Lyme disease, providing tangible evidence of a policy shift. (1:11:08)
• Statistics: Secretary Kennedy cited that Lyme disease affects nearly half a million Americans annually and, along with Long COVID, ranked as a top chronic disease in the country. (33:52, 1:12:41)
• Research Initiatives: Panelists referenced specific, ongoing research efforts, such as the Lyme Clinical Trials Network, NIH-funded cohort studies, and drug repurposing screens, as evidence of progress. (Dr. Ben Emser @ 43:11, Dr. Lyndon Who @ 58:26)
• Clinical Experience: Clinicians like Dr. Phillips and Dr. Bransfield cited their experience treating tens of thousands of patients as evidence for the reality of chronic Lyme and its severe neuropsychiatric consequences. (Dr. Phillips @ 51:04, Dr. Bransfield @ 2:10:53)

Themes and Trends

1. Recurring Themes:

• Validation and Empowerment: A central theme was the official validation of patients’ long-dismissed suffering, shifting the narrative from patient blame to systemic failure. (Secretary Kennedy @ 25:42, Dr. Oz @ 1:06:55)
• Frustration with the Status Quo: Panelists repeatedly expressed deep frustration with the “ivory tower” mentality of academic medicine and the institutional resistance that had stalled progress for decades. (Congressman Smith @ 41:12, Dr. Phillips @ 1:18:37)
• The Inadequacy of Current Tools: The failure of existing diagnostic tests and the limited effectiveness of short-term antibiotic treatments was a constant refrain throughout both panels. (Dr. Phillips @ 1:18:37, Dr. Patterson @ 2:18:00)
• Hope Through Collaboration: The importance of public-private partnerships, interdisciplinary research, and collaboration between patients, clinicians, and government agencies was highlighted as the path forward. (Secretary Kennedy @ 32:45, Dr. Emser @ 43:11)

2. Emerging Trends:

• Convergence with Long COVID: A significant trend was the framing of chronic Lyme alongside Long COVID as related infection-associated chronic illnesses, suggesting that research and therapeutic discoveries in one area could benefit the other. (Dr. Patterson @ 2:18:00, Dr. Bahari @ 2:30:36)
• Leveraging AI and Big Data: Panelists from the innovation sector focused heavily on the trend of using AI, machine learning, and high-resolution, real-time data collection to decipher the complexity of Lyme disease and create personalized medicine approaches. (Dr. T @ 2:22:46, Dr. Goel @ 2:42:18, Dr. Jackson @ 2:28:02)
• Focus on Pathogen Persistence and Immune Response: The scientific discussion trended away from a simple infection model toward understanding the mechanisms of pathogen persistence and the resulting chronic inflammation and immune dysregulation. (Dr. Phillips @ 1:18:37, Dr. Patterson @ 2:18:00)
• Shift in Federal Strategy: The roundtable itself signaled a major trend: a shift in federal policy from passive neglect to active, Transhigh-level engagement, backed by specific initiatives and funding commitments. (Secretary Kennedy @ 25:42, Dr. Oz @ 1:11:08)

Transcript

Speaker 1 (00:23:33):
All thanks everyone. This is Ken Callahan, head of policy. Thank you very much for joining the HHS Lyme Disease Roundtable. Today we have two different roundtables today. Roundtable number one is going to be on patients, practitioners and partnerships. As I run a show, we have about an hour today for each round table within a 30 minute break in between. And first off, this is just something the Secretary Kennedy has been very focused on and the first Trump administration was very focused on as well. And thanks to Secretary Kennedy’s leadership, made sure that we were going to convene everyone here today for this. So I’m just going to take it to Secretary Kennedy who’s going to give some quick remarks. Then we’ll go around for introductions and we have a few topics that we’ll be hitting as well today. Sir, I will kick it to you.

Speaker 2 (00:24:25):
Yeah, just first of all, welcome everybody and welcome to all the panellists where as Ken said, we’re going to have two panels today. The first one is going to focus on physicians and treatments and patients, and the second one on innovations. Both of ’em last apparently an hour or approximately an hour. This is something that I’ve wanted to do since President Trump offered me this job. My family has been directly affected by Lyme disease. I live for 35 years in Bedford, New York, which is within the epicentre of Lyme disease. Every member of my family has had Lyme disease. I got Lyme disease in about 1986 when it was still very, very difficult to even get it diagnosed. Luckily for me, I got the classic bullseye on my arm and I was able to get an antibiotic treatment that was successful. So I have not actually gotten sick from it.

(00:25:33):
I had a son who that same year had a Bell’s palsy, so his face was paralysed for almost a year, and you can imagine the heartache that caused apparent. I have another son who’s had chronic Lyme disease and has gone through many of the perorations and experienced the kind of difficulties and the invisibility that patients who have suffered chronic Lyme disease all across this country have invariably suffered. It is an invisible illness. For many years, this agency had a deliberate policy to refuse to engage with the Lyme community, and there were top officials in this agency who were saying that Lyme disease did not exist, that who would dismiss patients as the symptoms of psychosomatic and send Lyme disease patients to psychiatrists, which you can’t imagine a worse combination. These are people who genuinely are ill and are directed to find a psychiatric problem that explains their symptoms. And because of where I lived, I’ve known many, many people whose lives have been destroyed by this disease who go to doctor after doctor after doctor, trying to find somebody who are treated. And one of the problems is that none of the conventional tests that are administered by physician’s offices in this country, whether blood tests or MRIs, whatever test will not detect Lyme disease.

(00:27:25):
And the physician’s community, at least until recently, has not been well educated about it. One of my sons recently again, went to the Mayo Clinic and was again told to see the psychiatrist. And I can tell you this child does not need a psychiatrist. He needs help for his illness. And the same thing happened with chronic disease epidemic during the 1980s where were millions of people were told that they were not sick even though they had clear symptoms of injury and disease. This agency this day marks a milestone in this agency where we are recognising that this is an illness. It’s an illness that affects 35 million Americans. COVID also long COVID, which we had a consortium recently also affects 35 million Americans and many of the same things that have happened. And we need to take the same approach that we’re taking now with long COVID, which is to go to the physicians who are treating this effectively, to talk to the patients, to listen to people, and then to do gold standard science and to develop tests or diagnostics and then develop methodologies for treatment that are working.

(00:28:56):
One of the things that we’re going to do is start a series under hrsa, a series of Centres for Excellence around this country where we will identify the best diagnostics and we will identify the best protocols that are successful in the field and on the ground that patients who come in with these symptoms. And we’re going to do our best also to educate the physicians community that they will be able to direct patients to people who can help them. And one of the exciting things is that we’re seeing many of these clinics and many individual physicians who’ve decided to specialise in this illness or actually treating patients very, very successfully. And the patients and the physicians are reporting excellent results. We want to standardise that. We want to make sure that every physician in this country can recognise the symptoms of Lyme disease and test for it and then to direct patients to the best possible treatments.

(00:30:00):
I’ll say another thing. I spend a lot of my time, my life in the woods and that experience has now become hazardous across this country. I remember one day in 1987 when I stood in my bathtub and picked 29 ticks off myself. And that was typical in Bedford. If you went out into the woods and you were active, you would get covered with ticks. I was in Martha’s Vineyard recently and I learned that half the adult population of Martha’s Vineyard now has alpha, the year-round population. So it’s become hazardous now to go into the woods and the Maha movement is trying to get children to be active, to get them to go outside, to get them to experience nature, not only because that’s going to benefit them physically and also this spiritual connection that we get to God, to our own health and wellbeing, to the serenity that we have access to only one we in nature.

(00:31:09):
And now that’s become a hazardous experience for people and we’ve got to figure out a way to make it safe for children to go back in the woods again. And that’s part of what we’re doing here, and it starts with listening to patients during the AIDS epidemic in this country, the NIH took the position that they were an ivory tower, that the solution was going to come from them and they refuse to talk to the physicians who were on the ground. And in places like Dallas and New York and San Francisco and Los Angeles where physicians were developing ways of successfully treating the symptoms of aids, those physicians were silenced. They were de licenced, they were censored, they were demonised and vilified. There was a movie made about it called Dower Dallas Buyers Club. My uncle was one of the ones who convinced Anthony Fauci to do parallel track clinical trials with those physicians on the ground to fast track the clinical trials of the remedies that were actually working to heal patients.

(00:32:22):
And the agency here did that very reluctantly. They wanted to control and they wanted to develop the treatment and they developed a ZT, which probably killed more people than AIDS did. Conceivably, oh, it’s not a good match. We need to start listening to the public and that’s what this agency is going to do. I want to thank first of all Congressman Chris Smith who was the chair of the Lyme caucus and who has been responsible for getting some of the funding that we need to make sure that this works. I also want to thank is your name Bennett, and I know your boss Steve Cohen and Alex Cohen who lived very close to me in Bedford and who also had Lyme disease ravaged their families, and my daughter was best friends with their children. So I want to thank you on behalf of the Cohen Foundation for the resources that you’ve put into dealing with this terrible, terrible disease.

(00:33:28):
Without you, we wouldn’t be anywhere near where we are today. So I hope you thank Alex and Steve for me on behalf of the agency, I also want to thank Congressman Morgan Gryphon for joining us today who’s also been a leader on this subject matter. Thank you to also the subject matter experts, the clinicians, researchers, innovators, patients, caregivers and thought leaders who are with us today. This is the latest round table building on the long COVID round tables in September about invisible illnesses impacting everyday Americans. Today’s event is more accurately to be called an action table because HHS is acting on invisible illness and chronic conditions like Lyme disease. The purpose of today is to elevate patient voices, advance people first, data-driven Lyme solutions. Today I’m proud to announce the renewal of the Lyme X Innovation accelerator, which President Trump launched in 2018 and 2020.

(00:34:36):
It’s a partnership between HHS and the Steven and Alexander Cohen Foundation. This partnership includes a three year memorandum of understanding that will build upon the $25 million lawyers that the foundation invested in two HHS in the first Trump administration, including the 10 million Lyx diagnostic prize and more than $107 million. The foundation has funded in total Lyme science and infrastructure, including Lyme Disease, biobanks, and the Lyme Clinical Trials Network. This announcement fulfils commitments made in the MAHA Strategy report to address chronic illnesses that affect millions of Americans. HHS appreciates Dr. Ben Emser of the Cohen Foundation for being here and for his leadership. Together we are redefining the Lyme status quo. Lyme disease affects nearly half a million Americans every year. It’s a bacterial infection transmitted by the blacklegged tick and deer ticks and cases have now been reported in every US state in the continental United States, Lyme counts for 82% of all tickborne diseases and 77% of vector borne diseases nationally.

(00:35:53):
Tickborne diseases more than doubled between 2004 and 2016 and continue rising children and those who work and recreate outdoors are at highest risk. Dicks also transmitted estimated 20 pathogens that cause human diseases in including those that mimic or compound Lyme symptoms. Some ticks cause alpha gall syndrome. This is the lone star tick and that’s the meat allergy. If you get bit by that tick for even 10 seconds, you could be unable to meet eat meat for the rest of your life. Unfortunately, Lyme disease diagnostics remain unreliable. Current tests fail to detect all stages of the infection and up to 20% of patients experienced persistent debilitating symptoms even after antibiotics. Research has been underfunded, misunderstood for decades, leaving families without answers. Comprehensive cost of illnesses. Studies have not yet even quantified the total economic burden of Lyme disease. Lyme disease is an example of a chronic disease that has long been dismissed with patients receiving inadequate care and at sometimes derision in the Trump administration, things are different. We are validating patients’ experiences now. Our country is built on freedom and MAHA is built on informed choice and medical freedom and good science patients must have clear information, real option, and the freedom to make decisions about their own care. This is especially important for complex chronic conditions like Lyme disease. I’d like to express my gratitude to everyone with us today. You’ve all been leading the way on making this invisible illness visible and impossible to ignore.

Speaker 1 (00:37:58):
Thank you sir, and thank you again echo you. Thank you everyone for being here today. So right now we’re going to have each round table participant, if you can please state your name, title in a short description of some of the work you do, either treating or bringing awareness to Lyme disease or some of the work you’ve done as a member of Congress, Congressman Smith, we will start with you and we’ll go counterclockwise around the table. Thank you so

Speaker 3 (00:38:24):
Much, Mr. Secretary. First of all, thank you. Lemme say that again. Thank you. The patients, their families, everybody involved with Lyme disease and other tick-born diseases are absolutely thrilled that your walking point on this and of course with the full support of the president and you are going to make the difference. 33 years ago I met with C-D-C-N-I-H and HHS people with a delegation from my state because we’re one of the epicentres of Lyme disease. Top people from CDC and part of the discussion resolved around, they were saying if you take four weeks of doxycycline, no matter what stage this disease is in, it goes away. And the insurance companies then said, four weeks, that’s all we’re going to reimburse for. And we got them to admit that their recommendation was being misread if that’s what was happening, that they were taking that four weeks as that’s it for the insurance companies and they claimed that they would reverse it and they did.

(00:39:21):
In 94, I offered an amendment to the NDAA, the Appropriations Committee for Armed Services and frankly Fort Dixon in my district, and we know that many men and women, biv whacking were getting Lyme disease going back to their states National Guard and ready reserved only to say, what do I have here? Getting misdiagnosed by doctors who were very ill-informed about what was going on. So we did a $850,000 per year programme and it took off. It did become law in 1998. I introduced the Lyme Disease Initiative of 1998. It had all of the components that you mentioned trying to find a way of treating, but before that of discerning who has it, who doesn’t, a diagnostic, whether or not vaccines may or may not be applicable, and it was a comprehensive bill, it was bipartisan. One time I had over a hundred co-sponsors could not get it out of the energy and Commerce Committee because people in this building were saying nothing to see here.

(00:40:25):
I was disgusted because I knew a lot of people who had Lyme including members of the assembly in New Jersey and others and friends. So it was like, how can you do that? It wasn’t until the 2016 and you know this 21st Century Cures Act that we put the mainstay of that bill from 19 98, 98 into it dealing with the issue of a blue ribbon type commission, a task force that would leave no stone unturned with Lyme literate people participating. That was transformational. And what Secretary Azar did with his Lyme disease initiative and what that report, they finally recognised Lyme, chronic Lyme, which had been a culture of denial for decades. They wouldn’t call it that per se, but they called it that. And so that anyone who didn’t get it right away the way you did with the antibiotic with the bullseye could then get some treatment.

(00:41:21):
We did the Tick Act. There was a bipartisan effort again, and you have the senator who championed it on the Senate side, Kay Hagan tick act. We’re going to reauthorize it this year again and tonight the Senate will vote on their NDA conference report and I put in an amendment that passed four times, it failed, passed to the house, failed in the Senate. To finally look at, and I know you have spoken out so well on this, where did this come from in its hyper current manifestation? Was it at Fort Dietrich? Was it at the place right near you? Plum Island? Plum Island? Was it there? And GAO will be fully empowered to leave no stone unturned and now it’ll have a congressional mandate to get to the bottom of it because they were weaponizing take Dr. Bertol, as we all know, was a weapons expert and he told Chris Newbie in her book, bitten and I know you’ve read it, I’ve read it, I’ve read it twice.

(00:42:18):
Quoted her extensively that she looked at his files and we weaponized was stopped by Nixon. That’s so far back it goes. But the legacy of that biological weapons testing and the like has been absolutely cruel to our own people. My daughter, eldest daughter, 48 years old, she has chronic Lyme. She manifested about 10 years ago and has been very sick. She has a Lyme literate doctor. Very, very aggressive effort to try to hold it in a advance because in a way you don’t get cured. So I can’t thank you enough and I mean this because we used to talk to the wall in this building and they were always polite, would sit there, yes, yes, and then nothing would happen and you’re doing it. Thank you and God bless. Thank

Speaker 2 (00:43:03):
You

Speaker 4 (00:43:05):
Congressman.

Speaker 5 (00:43:11):
Hello, my name is Dr. Ben Emser, chief programme Officer for the Stephen and Alexandra Cohen Foundation. First, I would like to thank Secretary Kennedy for hosting this historic roundtable. The Steven and Alexandra Cohen Foundation is the largest nonprofit funder of Lyme and Tickborne disease research in the us. Over the last 10 years, the foundation has granted more than $110 million to the Lyme and Tickborne disease field since 2020. This includes a public private partnership with HHS called the Lyx Innovation Accelerator. The foundation’s approach is grounded in the patient experience. Our founder, Alexandra Cohen, has battled Lyme disease for many years and she’s a visionary behind our work. Personally, I’m a caregiver to my wife who has endured Lyme and Tickborne disease co-infections for over a decade. The foundation has funded more than 70 projects, but for this discussion I would like to highlight one. The Lyme Clinical Trials Network started in 2021 at leading clinical institutions such as Johns Hopkins, Mount Sinai, university of North Carolina, to name a few.

(00:44:16):
The network conducts studies based on treatments that are working with frontline Lyme doctors and for other health conditions and rigorously evaluates them in robust clinical settings. The Lyme Clinical Trials Network is designed to build evidence for repurposing medicines and other treatments so we can improve the lives of people suffering. Now while the network is currently testing many treatments, they can use additional support to expand capacity and test more treatments so that patients and clinicians that patients and clinicians recommend to the network. Moreover, once the evidence is generated, the network needs support to disseminate this knowledge to educate and train hundreds of thousands of frontline clinicians across the country. Better treatments for the 2 million people suffering from long Lyme or chronic Lyme are within our grasp, but we need to collaborate for maximum patient benefit. Thank you.

Speaker 6 (00:45:16):
Hello everyone. First of all, thank you so much, Mr. Secretary for inviting me to this round table. My name is Rachel Markey. I am a physician assistant and live here in Washington DC I have been practising medicine for 15 years now and working specifically with Lyme patients for 12. I started in Lyme disease working with a prior Lyme practitioner and I didn’t know much about it at the time. I was hopeful that I’d be on the cusp of new science and new developments, and I’m sad to say that not a lot has changed since then. So I’m excited to be here to see what kind of innovations and what next steps can be taken. I’m honoured to be here to give a voice to my patients who are family to me and who have been marginalised for years and years. So thank you.

Speaker 2 (00:46:09):
Thank you Dr. Markey.

Speaker 7 (00:46:13):
Good afternoon, secretary Kennedy. Thank you. This is my name is Dovie Hoig, founder of life for Lyme. A patient, someone who suffers from chronic illness from Lyme. I myself have a similar story to what your children faced. I went into the hospital 15 years ago, thought I had a stroke and they dismissed me without any diagnostics. I went to a personal physician who said that there could be Bell’s Palsy and let’s test you for Lyme. And he came back all excited to me like it was like lighting eight candles of Hanukkah. The first day you have all 10 bands positive. I never saw that before. And he treated me. And after I was treated slowly within the year, my whole body started deteriorating and falling apart and we started doing some research and I learned about all different co-infections that ticks carry that were unaware of, that the hospitals was unaware of, that the doctor was unaware of and didn’t test before.

(00:47:17):
And I took tests for these co-infections or all these things and I had every different type of co-infection and we couldn’t treat one before the other and learn about one before the other. From that, we established since I had Orex, Jewish Chamber of Commerce, a big network, a big network of doctors, and we established a call centre and we started referring people who are suffering from different symptoms to be able to diagnose and explained to them, create a panel of different blood work they should take to be able to know that there’s different, we shared it with hospitals. I created an r and d papers, I met with governors with the Secretary of Health, some different states, and we showed them that this has to be implemented to the hospitals. So first of all, I want to thank you. We’re working since last November, secretary County discussing about creating this initiative and you’re true for your word, Dr.

(00:48:23):
Ra. We met by the inauguration, the presidents, and we spoke about the initiative that me and the secretary was working about that you’ve embraced it right away. And a special shout out to Chris Smith who’s the oldest senior congressman who tirelessly effort working together with us on this and many other things and its frustration. I remember Chris telling me CDC walked into my office and said, we failed in Lyme. And I just want to finish with a takeaway of prevention because I’m not a doctor, but we do have the biggest referral department and we saved tonnes of over 30,000 people. We serviced already. Prevention number one is that immediately I suggest within 30 days to have the CDC guidelines updated with co-infections that exist and with those symptoms that exist to be distributed to all hospitals and doctors because regardless, until we come to a solution, at least let them know to test for what symptoms because they’re oblivious to, they’re letting people out without proper diagnostics.

(00:49:35):
What they get sicker and sicker from number two is awareness campaigns. What we do life for Lyme, I do billboards spend tens of thousands dollars a year, papers of awareness, flyers all over the place. We focus on hospitals, doctors and we focus on the public. If you have these symptoms, suicidal symptoms, if you have fatigue, if you have brain fog, if you have all these different symptoms, get tested not just for Lyme but for all our different co-infections and we share that and we print out all the co-infections awareness. So there’s two elements and the doctors and the hospitals have to be educated and the patients have to auto look out for that’s going to save lives. You at least know that people will be able to tap into what. And the third thing is insurances. Insurances, it’s killing families. We deal daily with families breadwinners who are suffering from Lyme disease. Now it mimics all different diseases. So people are running from doctor to doctor, different symptoms and at the same time they can provide to the families and it’s out of pocket because insurance only covers the first initial meeting. So with having said that, insurance should be addressed right away and even this should be executive order that they have to cover the extended care.

Speaker 8 (00:51:04):
My name is Steven Phillips. Thank you very much for inviting me to speak today. Good afternoon. I’m a physician, researcher and author. In 1996, I opened my medical practise and from day one we focused on chronic illness and the goal was to identify and diagnose properly chronic infections that are known to cause a wide range of chronic and autoimmune illness, things like Lyme and others. And that’s what we’ve done. And my practise has been exceptionally effective at getting patients off of disability and back to full lives. And these results have been replicated over several decades over more than 25,000 patients. My research areas have been fairly broad. I started out with microbiology and immunology work went into innovative ways for direct detection tests, which are desperately needed. And my most recent research area has been in drug development where I’ve worked with people at Stanford to formulate a new drug candidate and spend the final throes of testing at Tulane University.

(00:52:09):
And I’m really privileged to serve on the scientific advisory board for the Bay Area Alliance Foundation, which has funded $40 million of research that’s been some of the best in the field. It’s the most patient-centric, most innovative, and really the most impactful. I’m also an author, a co-author of Chronic, which is a bestselling book on chronic illness. And it details my story and it’s really a distillation of the decades of research and my medical practise and what I’ve accumulated knowledge. And I’m a bestselling author on substack and it’s called Zero Spin. So like others here today, my family and myself have been devastated by these infections. I was motivated to open my practise, not because I got Lyme in med school, but mic Oh sure, take it off to my dad with my soft spoken. I said I was motivated to do what I do because of my father.

(00:53:05):
I ended up getting Lyman med school and it was a chronic and relapsing course, but it was not disabling. But what I did learn through my studies, because I took all these electives in Lyme at Yale and I realised that my father was most likely suffering from undiagnosed Lyme for more than 20 years. So he had an insidiously progressive dilated cardiomyopathy. He was given six months to live, they were putting him on a heart transplant list. And I went to the cardiologist and I said, can we test him for Lyme? And the guy refused. And I was thrust in his very unfortunate position to try to have to desperately save my father’s life. Unfortunately, he responded really beautifully to antibiotics and his heart function normalised and he lived another 25 years. And in 2010 I came down with an absolutely devastating illness related to Bartonella, which I sustained from spider bites while sleeping in my bed. And just for the sake of brevity of these introductions, I won’t go into the full details of all that, but I would like the opportunity during this round table to paint the four corners of the problems because after 30 years, they’re pretty apparent to me now and to hopefully present some potential paths forward of how we can get this situation taken care of.

Speaker 2 (00:54:28):
Thank you. Dr. Phillips.

Speaker 9 (00:54:33):
Hello, my name is, hello, my name is Samuel SoFi. I’m from Cincinnati, Ohio. I’m a junior at Cedarville University. Secretary Kennedy, thank you for the honour of being at this table and thank you all for caring about those afflicted with Lyme disease. My story reflects many across this nation. In 2020, I became chronically ill. My parents who watched me sprint across the soccer fields now watched as I struggled to go on walks,

Speaker 8 (00:55:07):
I’m so sorry. I’m

Speaker 9 (00:55:14):
Alright. My story reflects many across this nation. In 2020, I became chronically ill. My parents who watched me sprint across soccer fields now watched as I struggled to go on walks to take deep breaths and even just to function without pain and fatigue. My prayers drained, their hard earned money with doctor appointments, blood tests, heart monitors and imaging. The medical system tosses back and forth leaving us at the end of the road broken with misdiagnoses little in our wallets and no answers. If it wasn’t for my relationship with Christ, I would’ve lost hope. I’ve been finding Lyme disease for more than five years. Currently I’m being treated by Lyme layer provider Curie Hodges. I’m very thankful for just a blessing she’s been in my life. She works with long COVID Dr. Jordan Vaughn. As you all know, patients need better and affordable testing. We need insurance to cover our treatments because we pay out of pocket. Thankfully, organisations like Limelight help patients with this. Lastly, one licenced software said, let me know if you find something that works. Some patients spend years sinking all of their money into treatment, but they don’t get better. We are hoping for more research to know what works. Secretary Kennedy, I know that you understand the impact of Lyme disease and I want to say thank you and thank you all. I know that you all are fighting for us and are dedicated to gold standard care. Thank you.

Speaker 10 (00:56:55):
Good afternoon. My name is Olivia Goodrow. I’m 21 years old and I have been battling tick-borne diseases for 14 years now. It took yes I can better. Wonderful. I’m 21 years old and I’ve been battling tick-borne diseases for 14 years now. It took 51 doctors and 18 months for me to just be diagnosed with Lyme disease. Then it took another three years and four more doctors to be diagnosed with five other co-infections. At 12 years old, I started the Liveline Foundation to give money to kids to afford their Lyme disease medication, to give funding and to promote awareness. Starting at 13, I began developing apps including tick tracker, the long haul tracker and tick emojis, which I will talk about later. Through live Lyme, I’ve hosted six scientific international summits that have had participants from over 50 different countries. I’ve also written my memoir, but she looks fine from illness to activism, which details how I turned Lyme disease into Lyme aid. Lastly, I am a junior at UCLA and I’m working with renowned scientists on rapid diagnostics for tickborne diseases. Secretary Kennedy, thank you so much for inviting me here today and thank you all here for the incredible work that you do and I look forward to making history.

Speaker 11 (00:58:26):
Hi, thank you so much for convening this meeting. My name is Lyndon, who I am an infectious disease physician at Tufts University. So I think I’m probably part of that ivory tower, but I will be the first to admit that we have not in the 25 years I’ve been doing basic science, patient treatment and clinical science, been able to come up with satisfactory answers for patients and cures. And I think we need to do better. I will say though, that I am probably the most excited I’ve ever been during my career at the opportunities we have to actually solve this right now.

(00:59:07):
Thanks a lot to people in this room, at this table, and also in the audience here in terms of bringing attention, focus and funding to this problem. And I think we’re at a very unique point in science where we now have the tools to do things. Traditionally we’ve done science in very precise, elegant ways, looking at one potential hypothesis at a time. But now with the technology that we have, we can do what’s called unbiased science and look at all the hypothesis at once and have the patient and the patient data tell us what’s the important thing to be looking at. So to that end, I’ll just mention two things that we’re involved in at Tufts. One is an NIH funded study to enrol a thousand patients with Lyme disease so that we can put them through all these what are called multi tests and come to some answers with that.

(01:00:01):
But one of the unique things that we’re doing with that study is that we are actually using clinicians on the front lines and as our research centres. And so they’re the ones who are involved in bringing the patients to us, enrolling them, and being involved in telling us what they’re seeing. So we’ve learned a lot through that trial and we’re only in our first year in terms of how to work with clinicians, busy clinicians who are not prepared to do research and what kinds of support we need to give them to be able to do the best kinds of research. The other thing I’ll just mention quickly is that we’re also involved in a drug repurposing study. We’ve just completed screening 50,000 compounds against Lyme disease, many of which we found active are actually very common safe medications. I’m not sure where we’re going to go with those eventually, but the idea is that we are now taking that we’re on our way to a hundred thousand and we are going to take that feed that with our collaborators into a machine learning artificial intelligence model where we can then screen virtual libraries of hundreds of billions of compounds quickly to identify the parts of the ones that we actually screen physically that are the most active because repurposed drugs are not designed for treatment of Lyme disease.

(01:01:21):
But if we can figure out what makes them active using machine learning, we can develop better drugs for that. So I’ll stop there and thank you so much for convening this. Thank you Dr. Ho.

Speaker 12 (01:01:35):
Thank you very much. I’m Morgan Griffith. I represent the ninth district of Virginia, which is southwest, western and parts of Central Virginia. Needless to say, we are a hotspot like so many others for tick-borne illnesses and cases have been increasing. Lyme disease is devastating and Virginia Tech and my district is doing some research to understand the prevalence and gather more information into live disease and other tick-borne illnesses. I would be remiss and I think we all agree that Chris Smith is just done amazing work and I’m hopeful that we can get his k Hagen tick act through the Energy and Commerce Committee as chairman of the Health Subcommittee. I’ll do everything I can to get it on there early. We got a little slowed down by the shutdown, but hopefully we’ll get this done next year. That’s important for those who want to use a vaccine.

(01:02:27):
FDA’s working on clinical trials on a vaccine for Lyme disease, for what that’s worth, we’ll see what the studies show, the repurposing of existing medical compounds, any way that I can help on that. That makes perfect sense. Use things that we already have tested on the human body as being safe and let’s go forward with that. I will tell you, and I’ll switch gears just a little bit. You mentioned alpha G. I will tell you that that too, it’s not in most cases, it’s not nearly as devastating, but good doctors out there in the field, people paying attention to what’s going on. I have long had allergies, so I have my, at that time, infant, relatively young son in with me seeing the allergist and my allergist, Dr. Saju, even out of Roanoke, Virginia, said to me, have you been having any problems lately? I said, well, I’ve been following my diet strictly.

(01:03:23):
I’m not eating the things I’m not supposed to eat, but I keep getting an upset stomach and I can’t figure out why. This will be about 2010, maybe 2011. He says, lemme do a test. Sure enough, I have AlphaGo syndrome. Now I have a very mild case. It causes some stomach upset. But as we had discussions over the years, he told me that there was a case that he was aware of. I’m not sure it was his where a lady kept breaking out in highs going into anaphylaxis and it turned out to be drier sheets with beef tallow. So some people have severe reactions. Mine, it’s annoying, but it’s not severe. I kept telling my other son who’s a teenager that he needed to be careful going out in the woods. You mentioned that Mr. Secretary, he’s big on hunting and fishing and bow hunting.

(01:04:13):
You name it, he does it. I said, don’t wear your shorts, wear long pants, protect yourself. And so I’m kind of excited that you mentioned we’ve got to get word out there on prevention as well for all of these tickborne diseases. Fortunately, he has not contracted any of the diseases as of this date, but he wouldn’t listen to dad. But when his best friend came down with Alpha Gal, all of a sudden I haven’t said anything, but I noticed he’s wearing the long pants. Now, Mr. Secretary Dad’s experience didn’t help him, but his best friend did. But these are things that we can work on as we go forward. And last but not least, since we’ve got a little bit of a platform here, I’m going to mention Ivor. I’m kind of excited and I’m going to a poor dog, can’t wag his own tail.

(01:05:05):
I’m going to wag my tail a little bit on this one. I have no interest in Voor for those who worry about, I don’t own any stock. It’s a company that does medicinal stuff. It does organs. In order to transplant organs from pigs and cows, they had to take out the Alpha-Gal protein genetically from those animals. And I suggested to them in early 2020 that they look into having their product that they originally designed the genetic work in my district and look to the FDA to see if they could get it approved for food in late 2020. They got it approved. There’s an alpha gal safe pig product out there, but no major supplier has picked up the licence on it, but it’s out there for those people who suffer from that. So that’s a minor one. But then I asked Davis Michaels, who does all incredible work for me in my office to come up with a list of all the different ones.

(01:06:01):
And we know about, everybody knows about the big three Lyme Alpha Gal or Rocky Mountain Spotted Fever. My goodness, there’s close to a dozen if not more diseases. And I’m learning so much listening to all the co-infections and so forth that are going on here. That’s why this hearing or meeting today is so important. Mr. Secretary, thank you so much. And as chairman of the Health Subcommittee of Energy and Commerce, I’ll do whatever I can to help move these things along, not just Chris Smith’s bill, which he’s been the champion on for years and years, but anything else that we can do to improve situations on lots of diseases. But today we’ll focus on tick-borne illnesses. And thank you so much for doing this. And I yield thank you, chairman. I asked

Speaker 2 (01:06:45):
Dr. Oz to come here to talk about some of the funding options for people for Americans who may get sick.

Speaker 13 (01:06:55):
First off, lemme make it clear to all of you, if you didn’t always realise it, that this sentinel event, this round table online would never have happened if it wasn’t for Secretary Kennedy sitting calmly next to me not being so calm all the time, taking a, he looks mild mannered here, but you get him going on things like Lyme and it gets him agitated for a very good reason. The massive ship that is HHS, even with the great captain cannot change direction unless he’s barking about it all the time. And I learned early on that when you mix medicine with politics, you know what? You get politics. There’s no more medicine left. I learned this on the show and I began talking about chronic Lyme. And I’ve had many of the folks on this around this table, either on the show or I interviewed ’em around it.

(01:07:44):
Doc Phillips and others have come and joined with remark, with blue chip pedigree, with great efforts to try to explain what’s happening. They get no respect from academic centres frequently, but generally from the medical community. And the question why is that? And there’s a quote as you walked into this building from Hubert Humphrey and it says, the moral obligation of government to take care of those living in the shadows and folks who suffer from chronic Lyme are indeed living in the shadows. Many of you have witnessed it. I certainly have. But when I began to recognise that the boards and the other groups that drive this process and insurance companies of course are incentivized by these boards taking a strict stance with a limited amount of time for treatment and thus forcing people into diagnosis that might not truly represent them, you begin to realise you need powerful allies to make change happen.

(01:08:34):
The Cohen’s were friends of mine, and Alex actually was born at my hospital many years, not that many years ago, a few years ago, but she and Steven have been very supportive of this. But it takes people like that who, I appreciate this, but I’ll tell you, going to those events, you realise that there’s a volcano of activity ready to erupt amongst people who are frustrated, angry, that this has not been addressed. As Congressman Smith said, when you’re talking to the wall and nothing happens after a while, you realise that it’s not an accident. There’s an act of desire not to hear this story get loud. And so we began looking into this a little bit that the instruction, secretary Kennedy and those, the few things first off, in the chronic disease categories, especially with K climb, there’s a general short circuiting of the system.

(01:09:18):
So it becomes a condition that resembles other conditions. It makes it hard to put it into a bucket. So if you don’t want to put it in a bucket, it makes it that much easier to avoid managing it. There are about 90,000 cases of Lyme disease reported by the CDC. Now, you heard a much larger number from Secretary Kennedy, didn’t you? Others would probably reflect that. Well, we only know about 90,000 because only 90,000 pit in one of those buckets. That’s data from 2023. By the way, it is still the most common tickborne disease in North America, but it’s not nearly what it truly represents in the impact it has, including economic impact on our country. When college students can’t show up in class, get educated, go to school and become contributing members of society, which is one of the values of investing in healthcare, of those people infected by chronic Lyme in addition to memory loss problems, joint pain, debilitating amounts of discomfort, often you end up with destructions of families.

(01:10:11):
People don’t even know what to think about their relatives. My family’s from the eastern part of Pennsylvania is a lot of Lyme disease. I can’t even keep track of number of relatives, relatives who have Lyme disease much less my friends. And these people are not crazy. We talk about it in many different contexts, but that’s how they’re labelled. So Secretary Kennedy asked us to address funding issues. He asked me to run the Centres for Medicare Medicaid services. And the question is, will we pay for Lyme disease? So Medicare, which covers 68 million Americans, 90% over the age of 65, but chronic disease categories are often treated as well. It turns out have a long list of ailments that they treat. And Secretary Kennedy, I brought you this list, but it includes things you might expect on a list like this, Alzheimer’s disease, asthma, atrial fibrillation, autism is on this disease for treatment, some chronic ailments like cardiovascular disease and cancer when they’re in that category.

(01:11:07):
But it turns out that we can cover chronic Lyme disease. It’s actually already covered. And we’ve updated our website to make it clear that chronic Lyme disease is in present because it’s a disease that is, and I’ll read these words to you, I want you to understand because this is what the statutes on the website right now, clearly identifiable infectious triggers that includes Lyme disease. Now, when you get bitten by a tick, many things happen besides brelia, other things can get infected. Viruses sometimes, which are hard to identify, but clearly identifying viable infectious triggers and difficult to identify infectious triggers both belong in this management structure. So we’ve updated the covered the chronic care management category for Medicare, which are people whose current conditions that they have to have at least two will expect it to be lasted at least 12 months or until death. We don’t want the latter, we want the former. So we’re going to pay for it. Secretary Kennedy, there’s my homework assignment.

(01:12:10):
And we announced this today because again, it wouldn’t have happened without a person who’s curious and courageous. And Secretary Kennedy said this in the very beginning, we should listen to patients. He listens, he listened to all of you, and he wants us in the medical community to listen harder as well with this Medicare guidance. And because the Lyme is quantified as infectious associated chronic disease, I think we can make America healthy again by making it easier to be healthy in America by getting serious about the management of this terrible problem. Bless you for hosting this.

Speaker 2 (01:12:41):
Thank you very much, Dr. I. One of the reasons we wanted to host this meeting, as I make clear, is to announce to the world that the gaslighting of Lyme patients is over and we now Lyme, incidentally, Lyme and COVID are the number six and seven respectively chronic disease in this country after diabetes, obesity, cardiac disease. So the burden is enormous and the economic costs have not been quantified anywhere. But as Dr. S said, there are all kinds of collateral costs when people can’t work, when families are destroyed. And I’ve seen the pressure that it puts on families when you have a child who’s chronically ill who has brain fog year after year. I think my son has seen more than 51 doctors. And that’s what happens. That is the story that is the odyssey of American kids who are motivated to find a cure, to find a remedy and who are relentless. They’re going to see doctor after doctor. And I’d like to do something in the short time that we have left, and I wish I could spend two or three hours with this panel. We have another panel coming up on innovation, but I’d like each of you maybe to go around and talk about the most exciting innovations that you’re seeing right now that might give hope to people, to patients who have Lyme disease around this country. And maybe I could start with Dr. Who.

Speaker 11 (01:14:27):
I think we are seeing an explosion in new diagnostics that are coming through. And as you mentioned, I think diagnostics are the start of all of this until we have a diagnostic that allows us to clearly separate out patients. I think the general, and is it okay if I do some non-scientific justified speculation? But I think many people think that Lyme disease is probably not just one disease, that people get there through different pathways, that there are different things that go on. And until we have tests that separate people into the different subgroups of Lyme disease, we won’t be able to really test the treatments that are appropriate and going to work on them. And when we lump people together and tested treatment, it’s not going to work in some, it’s going to work in some, but it washes out, so you can’t tell if anything’s working.

(01:15:15):
So I think the new coming diagnostics are terrific. I think there’s a lot of new coming things in prevention so that we can prevent some of the people from suffering the way the people at this table have. So I think those are really exciting in terms of some of the new preventative things that are coming down the pipeline that are kind of innovative and not been tried before. So things in terms of our group is working on narrow spectrum antibiotics that can be taken for long periods of time to prevent disease, but could also be used to try longer term therapy because all of our tests for chronic Lyme disease have been done with pretty short-term antibiotics like a couple of months. So if we had something safe that we could use for longer periods of times, we could really test these hypotheses and see if they work. So those are some of the exciting things that I see coming down. And one of the reasons I’m really excited about this point in time for all

Speaker 14 (01:16:05):
Of us.

Speaker 10 (01:16:12):
Yeah, absolutely. I think going on topic with the diagnostics, there are incredible diagnostic tools that are being developed. And one that I’m actually working on is through UCLA and it is a rapid XVFA Lyme disease text that is a multiplex vertical flow assay. And to put this into layman’s terms today, diagnostics with Lyme disease, they take time. They take time and tickborne diseases, they do not have time. They’re very time sensitive, and this can be completed within 20 minutes in our hopes you could buy it at a Walgreens store. And I believe that this is a rapid test for tickborne diseases that could really help people all over the world, especially in rural areas where they might not have access to clinics. Additionally, lye is also working on a multiplex immunoassay, which has AI learning as well, and it has a 94% sensitivity rate, which means that it is extremely capable of detecting tickborne diseases in Lyme disease. So I think that a lot of universities and a lot of groups are creating incredible diagnostic tools. And I think what we can do is really just fast track these innovations because once we get a diagnostic tool that can accurately detect tick-borne diseases, Lyme disease included, then that allows a lot more capabilities for getting proper treatments, medications, insurance companies to cover these things. So those are some of the innovations that are out there.

Speaker 9 (01:17:41):
I think at least from a patient standpoint, there’s a lot of uncertainty. You’re waiting there day after day after day for me, 1400 days with a lot of uncertainty. What’s wrong with me? And I think just having an accurate diagnostic tool would benefit us a lot. And of course, like I said before, patients spend all their money and many years into treatments only to find at the end of the road that it didn’t work and you’re out of money now. So I think something that’s a guideline or a focus that helps patients know, okay, this treatment is the best possible treatment for you based off of this best possible diagnostic tool.

Speaker 8 (01:18:37):
Yes, yes, thank you. So I would hate to be a wet blanket on everyone’s optimistic trait here, but to make better antibodies, we desperately need them because the current antibody testing on their best days is kind of abysmal. They miss more cases than they diagnose. However, on day 21 of doxycycline, those antibody tests, even when positive fail to be useful, we really need direct detection tests. Now, Lyme bacteria have been extremely difficult to culture from infected hosts after a period of time. If you inject Lyme bacteria into a dog, you let the dog get sick for a couple of months, the dog is sick, the dog has Lyme, you did not treat the dog. You can’t isolate Lyme bacteria from the blood of the dog. It’s very difficult. Despite that difficulty, these organisms have been obtained alive from not only animals, multiple species when they cut them up after therapy, they have been found in human tissues around the world.

(01:19:36):
We know that the pathogen persists, and yet we don’t have a good direct detection test on the market. We can’t even kill Lyme bacteria in the test tube with these several antibiotics that recommended by the Infectious Disease Society of America as the purported curative treatments for Lyme. The situation, if you explain this to Joe the plumber, they would say, what is wrong with this field? It is so messed up. How can this paradigm have persisted for so long? This isn’t easy to diagnose and easy to treat illness when the facts speak otherwise, and they have done so for decades. And when it comes to Bartonella, Bartonella is a beast. It’s incredibly antimicrobial resistant. There’s only one class of antibiotics that actively kills and effectively kills Bartonella, and that is immuno glycosides, and they are hamstrung by horrible pharmacokinetics. They don’t get inside cells. Borella is an intracellular infection.

(01:20:34):
They don’t pass the blood-brain barrier, Borella does. They’re horribly toxic. People can only be on them for a couple of weeks. People are developing ear toxicity and kidney toxicity. So when I say what’s exciting going forward, I can tell you that I do think that in the next couple of years there’ll be the opportunity for AI design drugs and small peptides. I know that there’s good research going on at Duke with a subset of screening, like high throughput screening for a small molecule finding that’s funded by the cones and also originally by Burial line Foundation. So that’s optimistic there. But the other thing I wanted to mention is that a couple of people have said that Lyme can mimic this disease and mimic that disease and what have you, and when I opened the doors, one of the first things I noticed that people were coming in with diagnoses of fibromyalgia and rheumatoid arthritis and lupus and multiple sclerosis, and me ccf S and patients were getting better from these various conditions.

(01:21:41):
So if it mimics a condition 100% and Lyme and these other infections are known to be able to mimic these other conditions, then by definition it’s causing these conditions. This is a broader issue than people I think, realise this is not just about Lyme in the way that people think of as Lyme, but I think that these other conditions, there are over a dozen studies, randomised controlled trials on rheumatoid arthritis showing that antibiotics work and placebo doesn’t. The critics of these studies will say, well, some antibiotics have anti-inflammatory effects. That’s why they work. No, they’ve also done the studies in antibiotics that are completely devoid of anti-inflammatory effects. There are multiple open-label trials on multiple sclerosis showing that antibiotics help multiple sclerosis patients when standard MS therapies have failed. And I could tell you from my personal experience, over 30 years have gotten in quite a number of patients with these conditions to get better after standard therapies have failed. So that’s the only thing I would like to add to the commentary.

Speaker 1 (01:22:52):
Pardon me, juvie, we have just as add up, we have about 10 minutes or so, so we’ll need keep the remarks short. Thank you.

Speaker 7 (01:22:59):
Secretary Kennedy, I just want to acknowledge on the surface that you are the innovation recognising Lyme disease today, what you’ve done made history without your recognition. All these solutions, doctors, and many doctors deny Lyme disease as a myth. Today, what you’ve done put it out publicly is the innovation and Dr. Oz for you incorporating Medicare to cover extended care is innovation because this is the surface. Before we go down to all these solutions, and I want to applaud you for that, and I just want to ask you, how do we get other insurances to mandate them to follow in your direction?

Speaker 13 (01:23:44):
Private insurers will often cover Medicare decisions, and there’s obviously a desire to treat chronic illness, but Dr. Phillips is really addressing the problem. If you don’t know what you’re paying for and you don’t think it really works that well, you’re not that incentivized to treat it because you don’t get the benefit of a patient getting better. I actually did not realise that iys were the only way of getting to an intracellular organism, but that is mission critical because we argue about 21 weeks of IV this or that. But if the patient’s still sick afterwards, and you go to any of the Lyme events, you’ll see a large number of patients who claim that they’ve been through every treatment, possible hyperthermia treatment, hyperbaric treatment in surgery. There’s an adage that if you have more than one operation to treat a disease, you don’t have a good operation. If you had a perfect operation, you wouldn’t need two. There’s probably 25 Lyme treatments, which means none of them are really that effective as much as we’d like, if you cobble ’em together, perhaps you can get the results and anything’s better than nothing, but the insurance companies need a bit more confidence that we have better approaches.

Speaker 7 (01:24:50):
That leads back to awareness. Thank you.

Speaker 6 (01:24:58):
Some of the exciting aspects that I’ve seen in my practise and also listening to all of you speak, is the possibility of having better diagnostics and research money going into research, that it’s going to help legitimise this disease, this diagnosis, the aspect of that that will impact me and therefore impact my patients is lifting the barriers to the clinicians. I think the biggest problem that I saw when I worked in internal medicine is I was given 15 minutes to talk to a patient, and that’s not enough time to take care of anything really. I started working with Lyme patients and I was afforded the ability to spend an hour, if not longer, with these patients. And that is critical because this is the disease that affects every system of the body, and you have to systematically go through those systems to support the body so that it’s in the best condition possible to treat.

(01:25:58):
I practise have approaches from both Eastern and Western medication or medicine to help holistically treat the patient, which I think is incredibly important. I also feel that there’s a lot of limitations on utilisation of long-term antibiotics. We at my practise, use pulse antibiotics in hopes of reducing resistance as well as giving the body time to detox and not create further issues down the road in regards to gastrointestinal problems. But I think the innovations that will occur hopefully from this round table and future round tables will allow me to do my job that much better. Thank you

Speaker 5 (01:26:44):
All. Thank you. I’ll be brief two things. One, tissue analysis. Oftentimes in patients Lyme disease is not flowing through the blood, but that’s the only place that we typically test. And so a lot of research done by Dr. Amy P and the audience is looking at tissue reservoirs to seeing how the pathogens may be harbouring there that we can understand the aetiology as well as a potential diagnostic tool. And then second, I think just for everyone here as well in the audience, we’ve been talking a lot about long line chronic linemen jumping into the deep end, if you need a good summary, I would recommend the award-winning documentary. The quiet epidemic goes through a lot of the history of Lyme and all the difficulty of patients, some of the innovations, so I think that’ll be a really great place for folks to start. Thank you, Mr. Chairman.

Speaker 3 (01:27:33):
Secretary, thank you so much again, Dovie. Thank you for your great work in Lakewood and around there area, which is in my district and Morgan, we now have a chairman of the health committee who is totally committed to Lyme disease. In the past, when our bill would come, before that subcommittee, it was killed each and every year. The gentleman from my own state of New Jersey, Frank Palone, he was chairman, I lobbied him, asked him, appealed to him, and he would not bring up the bill. And the mainstay of that bill was the Blue Ribbon Commission. The task force to finally look at all of these in a very dispassionate way, having your leadership, Mr. Kennedy is just, and you too as well, is extraordinary. We always had a civil, okay, thank you. Go on, have a nice day. From the top people at N-I-H-C-D-C, I mentioned that 82 meeting.

(01:28:28):
The 92 meeting I should say was unbelievable. They were the best of the best top people and they basically said, no thank you. There’s a door. Chronic climb does not exist. There needs to be something to be done with the infectious disease side of America. They lobbied aggressively against our bill and when last time we got the bill passed on, looking into what we may have weaponized the ticks, the big story of the Washington Post, mocking the heck out of me for offering that. And I asked the reporter, have you read bitten? Have you looked at any of this stuff? No, no, no. And yet they carried the story like we have a tinfoil hat on our head. I was very sense at that goes, who gets hurt? All of those people. Megan Bradshaw is here. Megan told her story recently. She should be on television talking about not only her courage but her overcoming spirit and she is just one amazing former patient.

(01:29:21):
She still deals with obviously these issues. And Olivia, when she talked about her tick tracker, what an amazing thing that is. I’ve had hearings on my foreign affairs committee. I’ve had hearings on how this is global. You know what the pushback was on that? This is secretary. Oh, if you are in Canada, you probably have visited the United States at some point. And I had a senator there tell me that that’s what he was told by officials there. I think that’s changing, but this is a global issue that needs to be treated as such. Again, can’t thank you to great leaders enough. Morgan, thank you. Well,

Speaker 2 (01:29:55):
Thank you very much, chairman, and I want to thank all the panellists for being here. I want to thank my partner and friend, Dr. Oz for joining me, Ken Callahan, and stay tuned. We’ll be back in about 20 minutes with the next panel. Thank you all very much and thank you, the audience for coming.

Speaker 14 (01:30:14):
Thanks you. I will come back

Speaker 2 (02:00:27):
Everybody. This morning or earlier this afternoon, we had a panel of physicians and patients and we focused on those issues this afternoon. This session, we’re going to focus on innovators and I want to thank all of the panellists for being here. I’m very excited to hear some of what you’re going to tell us about what is on the horizon, and I want to start by introducing Senator Suzanne Collins from Maine who’s had a long, long history of leadership on Lyme disease, and she was one of my inspirations for adding this panel up and going. So I want to start out by allowing you to introduce the group.

Speaker 15 (02:01:11):
Thank you. Well, first, Mr. Secretary, let me thank you for shining a spotlight on this disease and convening this round table and inviting so many people who care so deeply about being here. It’s also wonderful to see one of my constituents, Dr. Honey, who is part of this effort as well. We’ve talked many years ago, and it’s wonderful to see her today. The state of Maine had a record number of diagnosed Lyme cases in 2024. It was 3,218, and I mentioned the word diagnosed cases because the actual number of cases is undoubtedly much higher. The projections are that this year’s total will be even greater. We know that early and accurate diagnosis can reduce costs and improve prognosis. The problem however, is that there are still few effective diagnostics on the market. The Lyme Innovation Accelerator or Lyme X is an essential tool to help identify and develop next generation diagnostics.

(02:02:41):
So I commend HHS for its commitment to re-energizing Lyme X, accelerating the research on tick-borne illnesses. I also want to salute the Steven and Alexandra Cohen Foundation, the largest public private partnerships to combat Tickborne disease because they augment the federal efforts and accelerate the discovery of diagnostic tools, testing and implementation. The fiscal year 26 Senate version of that funds the Department of Health and Human Services maintains 5 million in funding for the LYX programme. Programme Funding will be used for exciting new developments in Lyme disease, diagnostics and treatment. It is also very important that the K Hagen Tick Act, which I first introduced in 2019 be reauthorized. She was a colleague of mine who sadly died of a tick-borne illness, currently leading the Kay Hagen Tick Reauthorization Act. With me is Senator Tina Smith. The bill has 22 bipartisan co-sponsors. It passed out of the health committee by a vote of 20 to one.

(02:04:17):
Unfortunately, it’s being held up by one senator. I’m still working on him. But the original Kay Hagen Tick Act, which President Trump signed into Log 2019 has led to some measurable successes. It had three components. First, it required HHS to develop a national public health strategy to prevent and control vector-borne diseases. It identified four outcomes to help guide public health activities toward measurable and meaningful impact. And one of these outcomes eliminating deaths from Rocky Mountain Spotted Fever has been achieved. The national strategy also calls for the number of laboratory confirmed Lyme disease cases to be reduced by 25% by the year 2035. It’s important to set that kind of goal. The Tick Act also reauthorized Regional Centres of excellence in vector-borne diseases and taken together these centres have supported more than 225 vector-borne disease prevention and control research projects and contributed to the scientific evidence base with more than 600 publications.

(02:05:47):
It’s also trained healthcare professionals, and I think that that is really important. Finally, the TICK Act funds CDC grants to state and local departments. That was 19 million across 65 jurisdiction thanks to the Tick Act. The number of jurisdictions able to report tick surveillance data increase from six, only six health departments of 2019 to 44 in 2025. It’s very important that this bill be reauthorized so we can continue our work. I do want to mention with a bit of pride some work that the state of Maine is doing, and then I will conclude. I promise. First of all, the University of Maine has a tick lab. It is so important because we have so many people who work in the woods each day. Think of our loggers, think of our game wardens, for example, and the University of Maine has developed this little tick case that they can send a tick to the lab where it can be analysed for pathogens.

(02:07:10):
I think that’s really important. They also do a lot of education, teach people how to check themselves for ticks. Although I will admit that my husband and I still have not figured out how to easily identify techs on our black lab who is very fond of bringing them into our house and transmitting them to us. Just to give you an idea, the Tick Lab at the University of Maine tested nearly 5,000 ticks from all 16 of Maines counties and 398 towns. So it has been extremely effective. In addition, one of the most important tools that I hope will continue to research to combat Lyme disease is a vaccine. We did have a Lyme disease vaccine on the market in the early two thousands, but it was pulled as Lyme disease cases have skyrocketed. I think that this is something that we need to continue to investigate with clinical trials that are currently underway at Main Medical Centres Institute for Research. So I look forward to continuing to work with HHS, and again, I’m grateful to the secretary for inviting me to participate today. Thank you.

Speaker 2 (02:08:44):
Thank you very much. Senator Collins. Senator Collins has to leave as a hard out. Thank you. Thank you. She has a heart out at four 10, so we’re going to have to let her go. I’m going to turn this over now to my deputy secretary, Jim O’Neill, who is going to introduce the panellists.

Speaker 16 (02:09:05):
Thank you very much, Mr. Secretary. And I’d like to echo the thanks for Senator Collins for her longtime leadership on this issue, which has had tremendous value and given a lot of momentum and encouragement to many of the other people in this room. All Americans deserve to be healthy and happy and prosperous, of course, including Americans with Lyme disease. People with Lyme disease also deserve respect and acknowledgement that they’re truly suffering from real disease and we are all working to make that happen as well. As the secretary said in the first panel, many of us were in Martha’s Vineyard in September, including Jay and me and the Secretary for Tribal Advisory Council, and we learned, we heard from the Wampanoag Tribe in Martha’s Vineyard about the explosion of lone star ticks in Martha’s Vineyard. So tick born are very much on our mind this autumn and in our hearts.

(02:10:01):
Also in September in this very room, the three of us and some others issued the Maha Strategy report. All of us at HHS are working hard to fulfil all 120 commitments from that report. One of those directives calls on HHS to use artificial intelligence to reduce the economic burden of chronic disease. And this event shows that we’re not waiting for the new year to act. I would now like to ask our distinguished panellists to introduce themselves with name and title and what you’re doing to work on Lyme disease and we’ll start on my far left with Dr. Bransfield.

Speaker 17 (02:10:53):
Alright, I’ll start over again. Okay. Alright. I’m Dr. Robert Bransfield. I’m a psychiatrist in New Jersey, and when a healthcare system fails someone, they often are referred to psychiatrist, and that’s one of the reasons why I’m here. I’ve been treating thousands of Lyme patients over a span since 1973 when I saw my first Lyme patient. And in treating thousands of patients, I’ve learned from my patients. And a good part of my research has been based on that. Some of the articles that I’ve done have focused on some of the areas that have been overlooked. There’s right now 650 peer review journal articles on the psychiatric manifestations of Lyme disease and also some with cognitive impairments with dementia. That’s on the table there if you want to read it. So there is a strong amount of evidence goes back to 1952. Now, in working with these patients, I found there were some neglected areas.

(02:11:50):
One area is trauma related to being lost in the healthcare system, post-traumatic stress. Another thing I worked on is substance abuse. People with chronic Lyme who were inadequately treated 12 fold, increased risk of substance abuse. I’ve also worked with autism, done eight articles on Lyme related autism. It’s not just Lyme, but there’s 20 infections that I see associated with autism. It’s a infection, genetic susceptibility interaction that’s immune mediated. Then I’ve also worked with people with suicide. That was an overlooked area and that comes up a lot. People don’t die from Lyme disease from arthritis, they die from suicide or drug overdoses. I’ve also worked with patients who are violent. That’s been a big issue and homicides dealt with homicides, tried to prevent ’em as best I could. Wasn’t always able to do that. And then a big thing in looking at Lyme disease is that it’s a clinical assessment is more critical Right now, these are complex interactive infections.

(02:12:59):
There isn’t a simple lab test. And in psychiatry, we don’t make a diagnosis of depression or anxiety with a lab test. We make it with a thorough clinical exam. Sir William OER said, if you listen long enough, the patient will give you the diagnosis and that’s what we have to do. We really can get that. So I’ve developed a clinical diagnostic system that anybody can use, and I’ve also developed some educational videos that are on the internet that anybody can listen to learn about that it’s good to educate other mental health care workers in this area. Now, my recenter articles, one was looking at the entire connection between infectious disease and mental illness, and that was one article, another article which I did with the Lyme Biobank out of the Bay Area Lyme. In that case, we had a patient who was on my waiting list, and he was a case where he was inadequately diagnosed, inadequately treated, and then he went on to chronic disease and he got lost in the system, couldn’t get help turned towards substance use that made things worse, became psychotic, killed his best friend and killed himself.

(02:14:14):
And then we did an autopsy. We found evidence of persistence, infection in his brain and body that helped explain why he acted in the way he did. Another article that I did is looking at this interaction of with COVID, my concern was that it contributed towards greater violence in the world, and I looked at proving that, how that occurred, but it also looked at the model of the role of an infectious disease and violence on a regional and global level. And if you look at the map where there’s more infectious disease load, there’s more violence, and you see that in different conflict zones, in higher equatorial areas and higher altitude and higher latitude areas, there’s less vector-borne disease and less violence, particularly in equatorial areas where there’s compromised environments, you see more violence. So a lot of it is a ecosystem problem where we have to look at the whole pattern of how that ecosystem involves the pathogens, the vectors, and how the disease evolves.

(02:15:22):
And I think that’s very critical. That’s not exactly Lyme disease, but it’s related. But my work, looking at the infection with these patients brought me to that. And I think we have to also look at the fact that this is not just an American problem, it’s a global problem, and other countries follow the lead of American healthcare, but they also follow our mistakes. And that’s been a big problem. I’ve seen it with going to other countries and talking with people there. It’s a problem in Australia and Poland in Eastern Europe and France where they have this very restrictive criteria. And I think if we can be more clear in broadening out the definition of Lyme disease, it won’t just help here, but it would help in other parts of the world. And I think it would help with global stability as well. So it’s very difficult dealing with this, but I think we can make some progress.

(02:16:19):
But I think we have to look at diagnostics not just as blood work, but we have to do it clinical diagnostic systems where there can be screening, you can do rapid screening, and then you do more detailed screening. The most detailed screening I do takes two hours to do, and I look at 280 different symptoms. But you don’t start out that way. You start out more with a screener and then you expand from there. And I think that we have to help people today. In my past week, I had two people that were homicidal, two that were suicidal, one that was psychotic with an autoimmune encephalitis. We have to help these people today. We can’t wait until these things evolve. There’s a great urgency. So on behalf of my patients, and one other thing I get involved with is the forensic legal aspect of Lyme disease on various levels.

(02:17:09):
That’s a significant thing that comes up a lot. And on behalf of my colleagues with ilads, I also organise people. I organise other psychiatrists and other doctors. I’ve done that since the nineties. And my colleagues are here from IDs, and that’s an organisation where we help to promote and educate. And we also have to develop these biobanks like the Bay Area Biobank where there’s 28 Lyme disease brains. It helps us with a lot of these studies. The gold standard is really with autopsy and tissue studies, and that’s where we really are going to move forward and truly understand this. And I thank you very much on behalf of my colleagues and my patients and myself for bringing attention to this critical issue.

Speaker 16 (02:17:57):
Thank you so much, Dr. Manfield.

Speaker 18 (02:18:00):
Dr. Patterson? Yes. I’m Bruce Patterson. I’m a viral pathologist. I’ve been doing pathology for over 30 years. So I’ve had my share of diagnostics and what we call pathogenesis, which is exactly how do bugs create disease. And I wrote a op-ed Lyme the pandemic that COVID uncovered four years ago as we were using machine learning and AI to develop a diagnostic for long COVID. And along the way, we found some apparent patterns in the immune system that were intriguing, that had very signature markers of Lyme disease, interleukin eight, interleukin four, TNF alpha. These are all inflammatory proteins that we’ve been talking about and have been published. And we finally developed an algorithm-based system to diagnose long COVID and distinguish it from chronic Lyme because as a clinician seeing thousands of patients, they all come in and say, oh, I have fatigue. I have brain fog, I have exercise intolerance.

(02:19:18):
I must have long COVID. Well, four years ago, when we were first going through those iterations, a lot of these patients ended up having Lyme. And so they probably weren’t even adequately treated at the time. And I still think that is a huge issue right now with clinical trials starting with long COVID clinical trials, hopefully in Lyme, we’re about to submit one in January is proper stratification of patients in these clinical trials. It’s a very simple ask, but it’s very difficult to come by when people use the term diagnostics. Diagnostics is a very, very broad term. There’s diagnostics to say yes or no. You have something, there’s diagnostics that say how much of something do you have? There’s diagnostics that say you have this versus you have that. Or most importantly, in the Lyme context, the need for a diagnostic to say, is the bug active?

(02:20:23):
Is it actively replicating or is there evidence of past infection? And I’ll add a third condition that we just discovered that much like in long COVID, there’s retention of the pathogens, protein in white blood cells called monocytes that are nothing more than fragments of protein and nucleic acids. We just found the same thing in Lyme. In other words, we found that there were fragments of borre protein in monocytes, and we show that those white blood cells are pro-inflammatory. They’re producing all the inflammatory proteins that cause these extensive symptoms, brain fog, fatigue, joint muscle pain, et cetera. We all know what those symptoms are, but the fact remains that there may not even be a replicating bug to treat within antibiotic in certain cases. And that could be another potential mechanism for chronic Lyme that we have to look at. It may not be all about antibiotics, but immune modulation, we’ve been using one in particular called Ravi Rock, which reprograms these white blood cells away from a pro-inflammatory phenotype.

(02:21:39):
These cells also are able to migrate through the blood brain barrier and cause neuroinflammation. So we have to think of this differently as organism disease, treat the organism, the disease goes away. What I tend to approach Lyme as doing is treating the bug and treating the chronic inflammation that results from the bug. And that could be due to mere fragments of the bacteria in some cases, but it may be the bug in other cases, and we need to be able to distinguish that. So thank you for your time, secretary Kennedy. I think by looking at long COVID in Lyme, we’ve identified from some of the reports that I’ve seen that these are in the top seven of chronic diseases in United States impacting our population and again, the population worldwide. And these are also ones that haven’t been adequately addressed from a funding level. So thank you and I appreciate being here. Thank you, Dr. Patterson drt.

Speaker 19 (02:22:46):
I’m Mickey T. I’m an engineer. I’m an immuno engineer and I’ve been working on infectious disease immunology for the last 20 years. And the reason that chronic Lyme is an invisible illness is because we don’t have the test to measure it. 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 step in and help. And so some of the big innovations that we need are we have to be able to measure what’s happening and we have to be able to measure it to see what trajectory are you on? Is your illness on track to recover or is your illness on track towards catastrophic breakdown of your body? So at MIT, we’re rooted in engineering, and rather than looking at this as a mysterious syndrome, we’re looking at this as a set of problems, solvable problems.

(02:23:48):
And so I lead a clinical study at mit. It’s actually MIT’s largest clinical study. It’s called the MIT Maestro, and I’ve left a handout on the back table as well as I’ve given each of you guys to show you some of these features that we can measure. And we are running thousands of tests. We have over a million data points per participant. We’ve looked now we are looking at hundreds of people who have long COVID or chronic Lyme or acute Lyme and trying to see if they are on track to recover or not comparing them to recovered controls. These diseases are complex and clinicians can’t exactly ask their patients, is your connective tissue damaged? Is your connective tissue recovering? Is your blood brain barrier integrity compromised? What about are you getting enough blood flow to your brain? But these are things that we can measure and we need to be measuring so that we can really understand the different impact I’ve bought you.

(02:25:03):
Just for an example, this is a capillary scope. You can look at the blood flowing through your smallest microvasculature, your capillaries, and you can wear all sorts of different, there’s all sorts of different wearables available to look at blood flow. There are different wearables and different trackers that you can look at eye tracking. You can look at voltage, brain voltage, you can through E, E, G. And so we have all these different measures that we can very finely measure and put hard numbers on different features of neurological dysfunction. So we don’t need to say, oh, brain fog, that’s a subjective symptom. We don’t have a way to measure that. Well, we do have ways to measure neurological dysfunction and we need to be doing that. And so where in maestro our concept is measure absolutely everything. But the reason we’re doing that is so that we can identify the tests that are the most impactful, the tests that we need to move forward with.

(02:26:10):
And while we’re not done yet, I do want to tell you that I think at the very least, measuring blood flow, measuring eye tracking and neurological dysfunction, those are really critical and important and could really help us see what is on track. And the other thing that I want to mention is one of the other things that we’re doing is instead of asking the immune system a yes or no question, have you ever seen this bug before? Yes or no? We’re really trying to look at the features of the immune response so that we can ask it an open-ended question. If you saw this bug, how did you respond? Was it in a way that was protective and you’re clearing this infection, you’re never going to think about this again? Or was it in a way that was catastrophic? Bring the house down. And those are really important to identify because then maybe we could help people before all of the ongoing damage and suffering. And so with that, I really want to thank you for your invitation today and for this open discussion.

Speaker 16 (02:27:16):
Thank you, doctor. Thank you, doctor. So we’ve already learned a lot of useful information about Lyme from our first three scientists. Fortunately, this meeting is being livecast and other people are learning from it. Our next four scientists are all people who work here at Health and Human Services. And before I turn it over to Dr. Jackson, I just want to go ahead and announce that because we have so much information today, we’ve launched a special dedicated page on the HHS website that is going to be a hub for news and data and policy around Lyme. So the website is hhs.gov/lyme. It launched today, and I hope it’ll be a resource for everyone. And now I will ask Dr. Jackson for an introduction.

Speaker 20 (02:28:02):
There we go. Hi everyone. I’m Dr. Alicia Jackson. I am the director of ARPA H, which is an agency within HHS designed for just these types of problems, problems that seem nearly impossible to solve. And we can bring the best innovators around the world who have new approaches, they have new paths that we can go down and also we can bring together the groups, the data sets, all the AI tools that we’d need and build those for the community. And so I’m thrilled to be here to make Lyme disease, nothing that seems impossible, but actually possible to solve and probable that we can do it not just in 2035, but within the next five to 10 years. And I do believe that is possible if we bring the right people and resources, resources and committees together. Other already we’ve started to build an effort around these invisible diseases.

(02:29:04):
And while it sounds quite simple, it’s actually quite complex, which is to take not only all the clinical trial data that’s being produced around Lyme, but also each individual patient’s, record the depth of that, record the clinical notes, and bring them all together in one place so that we can study them as a whole, make them available to researchers so we can understand what are the common patterns that we’re seeing here, what’s working, what’s not working, why do some people recover when others do not? And get the kind of insights that we need. And we’re building this for the community because if we can build that foundation for the community, we can allow a bunch of folks to come on top of it and find those insights, ask the questions that need to be asked, and that will speed up the community as a whole.

(02:29:50):
The second big area of innovation that we’re quite interested in is around immunology and immune reset. And we’re really looking to the community on this, which is what are those new ideas that you have? What are the big ideas that haven’t been tried before or maybe go against dogma that we can put resources and funding in to actually go and make a dent here? I’m happy to talk more with all the folks here. I’m so happy that all of you have come here to share your experiences, what you’re digging into, what you’re funding as well, so that we can partner and make a difference.

Speaker 16 (02:30:30):
Thank you so much, Alicia. Next we have our distinguished director of NIH. Jay.

Speaker 21 (02:30:36):
Hi, I am Dr. Jay Bahari. I’m the director of the NIH. Thank you, Jim. I want to start by echoing something that Dr. Patterson said, which I think is incredibly important, the way forward on Lyme on M-E-C-F-S, on long COVID. So many of these conditions that for the very longest time patients have been gaslit to say, well, it’s not real. Well, first it is real. But also when you think about addressing it, you can’t just think about the pathological agent that initiated the condition. You have to think about the patient as well. It’s the interaction between the patient and the pathological agent that is at the heart of making progress on each of these conditions. And the philosophy of the NIH has been and will be to think about those paradigms. We’re not just going to be thinking about Borrelia, although that’s a very important thing to think about when you think about Lyme disease, but about the patient’s reaction that why is it that you have this long-term mean reaction?

(02:31:41):
Why is it so sometimes difficult to find evidence of rally in the chronic conditions, but sometimes you can find it. These are mysteries that are solvable and the investments that we’re making at HHS, including at the NIHR are going to be the heart of solving it. Lemme just give you some items from this. I actually heard earlier in the earlier panel about this tough study funded by the NIH, this prospective study of symptoms, events, and clinical outcomes for patients with Lyme disease. It’s a very large study compared comparatively for looking at how Lyme is a prospective study for how the symptoms evolve over time, how biomarkers evolve over time, and how clinical outcomes respond to treatments. There are several teams looking at the potential role of peptic glycans that are the bacterial proteins and the antibodies that generate for possible role in persistent Lyme. We’re supporting an ongoing, ongoing clinical study using neuroimaging and blood markers after treatment to assess mechanisms of neurological symptoms associated with Lyme.

(02:32:44):
We support several studies seeking to identify serological markers, antibodies that predict patient outcomes after treatment. And we are about to launch at the NIH Clinical Centre with a partnership with the Children’s National Hospital in Washington dc, a new clinical study that will improve our understanding for paediatric Lyme disease, which is an increasing increasingly important problem. In fact, this is one of the commitments that we made in the Lyme disease framework to do, and we’re going to launch that in early 2026. The NIH has multiple ongoing initiatives and studies on long COVID E CCF S and other infection associated chronic illnesses that may have similar underlying mechanisms. And studying these conditions together, finding what’s in common and what’s different will help make advances in all of them. Again, Dr. Patterson, I think this is one of the things you’re thinking. Along the same lines, while there’s investments we made in identifying new antibiotics that potentially could have a longer better effects as well as potentially protective monoclonal antibodies that can be used as a treatment strategy evaluated in the usual rigorous NIH way I’ve gone on long enough.

(02:34:02):
So lemme just say the NIH is committed to contributing to the overall Lyme strategy that the HHS and Secretary Kennedy has launched. And as I said, we’ve already committed. We’ll be launching this new paediatric Lyme initiative as well as convening the new national NIH Lyme workshop to update federal research priorities on Lyme. I entirely agree with Dr. Jackson the idea that Lyme is a intractable condition. Patients are just making things up. Those days are long gone. Those are long gone. At HHS, we’re absolutely committed to making sure we do the gold standard signs to address your condition. And with the advances we’re seeing, there’s a real potential in a few short years that we’ll have much, much better early predictive biomarkers, much better treatments and real cures maybe even than ways to prevent it that we don’t currently have, but we’re headed in that direction.

Speaker 16 (02:35:05):
Thank you so much, Jay. Next we have Dr. Opolis.

Speaker 22 (02:35:09):
Well, good afternoon everyone, and thank you Secretary Kennedy for your initiative on this very important issue that affects so many Americans. I’m the chief of staff of the Office of the Surgeon General, and I am a family medicine physician practise in Florida. For two decades, I have diagnosed and treated patients with Lyme disease, so I do bring some real world experience to the office of the surgeon General. Part of what we do is want to communicate with the Americans, how do we live healthier? How do we have disease prevention and harm reduction? So in this space, we are going to be very active in educating the public on preventing as well as awareness to clinicians on how to diagnose. Secretary Kennedy, you gave us our marching orders earlier this year, and Dr. Honey and I put together a briefing for you with your subject matter experts within the department.

(02:36:07):
And one of those takeaways you said, I want a live stream round table. So patients and innovators and researchers and clinicians are seen and heard, and this is what we’ve executed today with your leadership, sir. And so many people around the world are cheering for you today because of this. So what I could tell you is that I don’t know if you remember, I put poppy seeds on the table for you because I said these are the size of the nymphs and people don’t understand it’s not just the adult tick that spreads the burle bacteria. It could be the nymphs too, and those are the size of a freckle. So as we talk about primary prevention, we want, obviously Secretary Kennedy wears jeans when he goes hiking for a reason, so he doesn’t get Lyme disease and for others. And so we want to cover up, we want to make sure that we are not getting it in first place, but taking it off, research recently showed that the bur bacteria, actually, it doesn’t have to be 48 hours, it can happen within hours that the bacteria is spread and it’s a very smart bacteria that quickly gets out of the blood and into the tissue.

(02:37:26):
Unfortunately, that’s why we have such a hard time with the biomarkers and it develops a biofilm and hides. And so that’s why even antibiotics are so hard to penetrate into the biofilm and get to it. So clinicians need to understand that just because a patient doesn’t live in the northeast doesn’t mean you are not thinking of it as a differential diagnosis. Making sure that if you are not totally able to understand why they’re experiencing it, maybe you need a test or maybe you need a treat. Just educating yourself. Let’s take down those barriers. This is a paradigm shift for patients with Lyme disease, but also for clinicians to be aware to test no longer will you be gaslight. I want you to know your opinion, your experience matters and you are valued. So the wisdom we get from you, the patient-centered approach is warranted. Ensuring that the voices and experiences that are affected by Lyme disease directly shape programme development.

(02:38:35):
And we listen at events like this and you get real world insights from patients and clinicians, and then you communicate how your stakeholder input could shape a programme. And then launch initiatives that like a IH is very much working on possibly novel antibiotics as well as preventing maybe tick population expansion and also some anti-inflammatories that very much help with the immune dysregulation, with the cytokine pathway that is expanding the disease state. So we’ve learned so much, but there is so much more to be done with Secretary Kennedy’s leadership and all the internal and stakeholders that are here with your influence. So yes, we have the Lyme disease site on the HHS website, but also there’s going to be a fact sheet that’s released today with some wins. I think it’s a really big deal that the chronic care management guidelines with the G codes help the physicians to see that with the MLN, that they can actually get reimbursed to see patients with chronic illnesses.

(02:39:50):
And that Lyme disease is listed on that active as of just two weeks ago. That is a big deal for the Lyme community. You are being seen, you are being heard, and we are doing things at HHS for you. And this is the beginning of the journey. This is not the end. So we are going to continue this communication and I promise there are going to be more wins throughout this administration because of the wonderful leaders that we have here. So I’m going to let Dr. Honey, who has been my counterpart on putting this together, proceed.

Speaker 16 (02:40:23):
Thank you, Stephanie. Dr. Honey,

Speaker 23 (02:40:26):
Thank you so much and it’s been a great team effort. Kristen Honey, and I’m the chief data Officer at HHS and also the Lyme X lead with our public private partnership. But folks here probably know me as a Lyme patient because I was recruited by a tick in 1999 and went through many misdiagnoses for over a decade until I completely collapsed. And if I had followed the guidelines, I would be dead today. Fortunately, the patient community shared their wisdom. And I am here on the shoulder of giants like Lorraine Johnson who founded lyme disease.org and my Lyme data registry with over 20,000 crowdsourced records from patients who are trying to find answers and the late Pat Smith and people who shared what got them well. So after trying many things over three years, I finally biohacked my way out. But no one should have to be the FDA of their own body and take such extreme risks.

(02:41:32):
So we need a new approach that puts the patients at the centre, and that is truly precision health because there is no average American and what works for me may not work for you. And with these complex conditions, we really have to look at the individual and the host response. And I think of myself now as really a data-driven problem solver who loves the science, loves the nerdiness, but give me a wicked problem. Let’s unleash all the data we can with radical transparency and then have the courage to follow the data wherever it leads us.

Speaker 16 (02:42:05):
Thank you so much, Kristen. Dr. Goul is the person on the panel that I think I’ve known the longest. I think we met at a scientific conference around 13 or 14 years ago. It’s always lovely to see you. Please proceed.

Speaker 24 (02:42:18):
Thank you very much, deputy Secretary O’Neill and Secretary Kennedy for hosting such an amazing, am I audible? Yes. First for convening such a great gathering. I think it’s a critical moment in the history of our health and wellness care in this country that this convening is happening. My name is Dr. Anita Goel by training. I’m a physicist and physician from Harvard and MIT. I’m the chairman of the Nano Bias and Research Institute and Nano Bias and Diagnostics, which is a company in Cambridge, Massachusetts. I’ve been on a lifelong journey to bring fundamental physics and biomedicine together. My institute has been working with agencies like darpa, nasa, DOD, and recently with FDA and HHS and Dr. Honey on really bringing together physics, bio nano and even AI tools to unleash quantum leap innovations in healthcare. And specifically, I feel like I’m hearing my echo specifically, we’ve built a vertically integrated tech stack that enables real time high resolution data collection and diagnostics in a decentralised way.

(02:43:44):
So the idea is that you could diagnose with high resolution. So my initial background is building nano biophysics based detection systems, next generation diagnostics at the single molecule level. But we really harnessed all of that into a tech stack. Most recently demonstrated with the FDA in a contract project we did with them where we quantified the viral load. We have one of the most sensitive FDA approved ways to detect low viral loads of COVID and saliva. And we quantified the viral load of these patients. So we ran a decentralised clinical trial and we focused on collecting multimodal data. And Secretary Kennedy, you mentioned it’s important to listen to the patient. So I see our technology stack as a way of technologically listening to one patient at a time by recording all kinds of data, their past medical history, their electronic health records, their biomarkers, and quantifying them with very high resolution in real time.

(02:44:56):
So temporally resolving this, most of our clinical trials are done in a low resolution way where we do cross-sectional studies, but if we can measure in high resolution in real time at an individual level, we get a lot more data because each individual story, and this is that personalised precision medicine, there’s a lot of environmental factors that are influencing the biology of that organism on many layers. And so what we are trying to understand is not only the background information, but that interplay of that information of that biological organism with different layers of information in the environment. And that when you mathematically try to put all that data together and extract patterns with tools like ai, you start to get novel insights. And the point is we can learn from patients in real time as opposed to taking five to 10 years for certain kinds of clinical trials before therapies become available.

(02:45:57):
So I’m advocating this new technological infrastructure that makes it possible to collect high resolution data in real time and then collect it on individuals, but then aggregate it over a population of individuals to start to build patterns. It’s the way Facebook learns from its users. That’s how we can advance our tech infrastructure to learn from every patient except use it for the benefit of advancing therapies faster, getting them to the bedside faster, being smarter in our triage of patients, earlier detection of patients value-based care, delivering better care at a cheaper cost because we can allocate our medical $4 trillion of annual spending budget more efficiently if we understand not just the detection and the quantification of the disease, but how that fits into a bigger pattern of how all these parameters fit together. And so I think what I would advocate is that we’re at a pivotal moment right now where with your leadership, we can make major investments into really bringing the convergence of things like physics, nano bio and AI together to unleash a quantum leap in our capabilities in terms of not only diagnosis, but this enables in my view, a platform to accelerate novel therapies for many kinds of diseases, including chronic diseases.

(02:47:41):
For example, we need to understand the interplay of infection and inflammation, and this is true in Lyme disease as well as long COVID and many other diseases, or even if you look at other chronic diseases of inflammation. And if you can time resolve, let’s just take Lyme and long COVID, if you can start to time resolve the infectious phase and the inflammatory phase of each patient. And some of the things we saw in our clinical trial data is that no patients are the same. Some patients have high viral load and their inflammation and their symptoms end when the viral load ends. Other patients, their symptoms end, but they continue silently carrying a persistent viral load. And a third group of patients have no viral load, but they keep having symptoms in some sort of inflammatory framework. And just really trying to understand that and tease that out.

(02:48:41):
And we can learn from cohorts of patients in real time with this kind of tech infrastructure and then use that to then more intelligently tailor therapies. And then the therapies themselves have to be holistic. You can take the best of medications, but you can also try, if somebody is trying acupuncture or Ayurvedic medicine on the side, that should be part of the data input that then informs the trajectory of that patient. And with these kinds of tools, you can start to see all of that in real time. And then thanks to ai, you can really try to make sense of that. So I’ll stop right there.

Speaker 16 (02:49:19):
Thank you so much, Anita. I can say all of these opening statements have answered most of the questions I was planning to pose, which is excellent because they’re also consuming a fair amount of time we allocated and I bet we’ll get all the rest of the answers from our final panellists. So please go ahead. That’s a very

Speaker 5 (02:49:36):
Tough act to follow. Hi, my name is Dr. Ben Emser at the Steven Alexander Cohen Foundation. As a largest nonprofit funder in the space, we fund research into Lyme diagnostics, therapeutics, bio repositories prevention, aetiology epidemiology. This includes, of course, is the $10 million LYX diagnostic prize competition. Currently, there are seven scientific teams developing new diagnostic tools with the ultimate goal of FDA approval in the next two years. Over the last 40 years, unfortunately, as we’ve heard so much about today, the status quo has failed long Lyme patients. There’s no consensus diagnostics for long Lyme, no consensus treatments, no consensus on aetiology, and of course the patients and their families suffered tremendously.

(02:50:27):
So our portfolio is geared towards innovative ideas. To break through that deadlock, we often attract innovative researchers who have grown frustrated with nihs peer review process. While NIH P review process has some strengths to slowly, incrementally progressive research field, the primary weaknesses, valuing new and innovative theories or approaches. While innovative ideas may be financially risky, the slow incremental approach can take decades. A whole generation of patients suffer and the current taxpayer gets no benefit. Our foundation is positioned as a counterbalance to this grant making status quo by leaning into innovations. Of course, some projects are higher risk and higher work because it’s what we feel is the best for Lyme patients and their families in the short and long term. Thank you.

Speaker 2 (02:51:19):
Thank you to all the panellists. I have a question that comes from my own anecdotal experience in this panel. The last panel, there were several references to co-infections with other Rick Tickborne diseases and other diseases that compounds the complexity of diagnostics and of treatment. As I said, in my own anecdotal experience, I’ve met a number of Lyme patients or long COVID patients who also have mould sensitivities that appear to amplify the impacts or any of you running into that problem.

Speaker 18 (02:52:05):
That’s a really interesting observation because I think one of the things that’s confounded our analysis and now has come out with a large number of patients is mould and mycotoxin. We’re working right now on an immune signature. Obviously we have a test that can do 14 different biomarkers at one time or 89 billion combinations. And we’re enrolling patients to figure out, and we think we have some early data to show that there is indeed a mould mycotoxin signature that separates it from long COVID Lyme and me CCF S. But I think that is another invisible, hidden source of chronic inflammation and chronic disease that needs to be looked at. I think it’s far more prevalent than we could ever imagine.

Speaker 24 (02:53:05):
I’ll just add one point to that. I think that there’s a complex constellation of infection and host immunity and inflammation, which includes the microbiome. And so different people have different starting immune systems, and then with the infectious insult, their immune system reacts in different ways and each person’s journey is a little bit different. And so to understand that, I think the idea of individualised precision detection and tracking helps us then dial in the parameters for that one patient. And the way you would do it for one patient may differ a little bit than how you do it for the other patient. And that’s why instead of the one size shoe fits all, having the ability to real-time track in my opinion, helps you tease out why. Because for example, one patient might be co-infected because of a baseline immunocompromised situation, whereas another patient may have a post infectious inflammatory reaction that might then modulate their immune system in such a way that they become more prone to certain infections. And so you really have to kind of understand that interplay as well as the environmental exposures to really answer your question. In my opinion.

Speaker 2 (02:54:28):
And thank you, doctor. The last question I would ask is particularly from those who are academics that two of you work at MIT and Dr. Patterson, are there things that we should be doing at HH that can support your work?

Speaker 18 (02:54:53):
I think that’s such an important question because I think at the end of the day on our parts, it’s always bandwidth and funding. I would love to collaborate with ARPA H expand these databases that we use as a source for machine learning and ai, but even the smallest things such as having the proper scientists and bioinformatics people to pull together all that data and deposit it, even that takes some resources. So I think at the end of the day, especially in Lyme and long COVID, which are two excellent examples, I think funding is critical. But the other critical thing is what we’re doing here, right here today, I would never have known what other people are doing in this space. We live in a little bit of a vacuum sharing these ideas. I think, as I’ve shared with you, secretary Kennedy, in the HIV days, we didn’t do this. In fact, the immunologist and the virologists rarely spoke to one another. But what we’re doing today, we kind of get a feel for what everybody’s doing. And a lot of us have similar ideas, maybe approached in a different way. That’s what we’ll get to real solutions and real outcomes. So I think this is what we should be doing.

Speaker 19 (02:56:20):
I want to chime in there that I’m surrounded by colleagues who are trying to build tools that could really change this, some novel alternative methods, these NAMS to humans on chip, as well as different ways of looking at the human in their own body and developing new computational methods to really do systems medicine. And there’s so much happening with AI developing the way it is. I think one of the things that we really need is there’s still data that doesn’t yet exist in the way that we need it to exist in order to analyse it. And the funding mechanisms that exist today aren’t in a way that really allow us to develop these tools that we need and to collect the data the way that we need to have it. And so I think having funding structures that allow for these really critical developments that can leap us forward would be incredible.

Speaker 24 (02:57:28):
I would just add to my colleagues here, I think this is an era of convergence. In the last century, a lot of our biggest innovations were in silos. So I think a great convergence across agencies, across disciplines, physics, nano ai, bio coming together. I think the ability, you mentioned this idea of centres of excellence, I think those would be great places to set up where we could set up tech infrastructure to listen to patients at scale by recording, almost having a place where we could record high resolution data on a certain set of volunteer patients in exchange for however we set it up. And that becomes, because our AI is only as good as the data we used to train it. So if we can get high resolution data, we can build next generation algorithms to really start to predict where things are going to go. And so I think leveraging some of your vision of setting up these centres, which can be places where we envision the future of medicine and healthcare with the latest convergence of tools to get information, but also where we can try new therapies and accelerate by recording and quantifying the response to the, so it’s all data-driven. We can accelerate how new therapies, including suppressed therapies get to market and how we can think more holistically about health and wellness and even ageing and chronic disease reversal.

Speaker 2 (02:59:04):
Thank you very much. That’s exactly what we’re envisioning with these Centres for Excellence. I’m glad to hear you validate that. Do you, I’m just curious, Dr. Go and Dr. Al, do you actually treat patients

Speaker 24 (02:59:18):
Full-time research?

Speaker 2 (02:59:21):
So then how do you get your data?

Speaker 24 (02:59:24):
So we run clinical trials in partnership with the FDA where I partnered with several academic centres that recruited the patients, and then we collected all the data and build all the tech. I’ve trained as a physician, but we work with a lot of others to actually recruit their patients.

Speaker 2 (02:59:42):
I’m surprised you weren’t working with Dr. Patterson because he is got a lot of patients Well,

Speaker 18 (02:59:46):
Now

Speaker 24 (02:59:47):
That we’ve met.

Speaker 18 (02:59:48):
Yeah, I’ve actually sat in front of some 12, 13,000. So it’s interesting that you say that. But it’s also interesting. We’ve actually sat in front of them and heard their story. It makes you even more committed to find answers because it’s gut wrenching sometimes.

Speaker 16 (03:00:09):
There’s been a lot of mentions of data. And using data more efficiently is one of our priorities here at HHS. So we have around the department access to a lot of data sets, each of which has a very different structure. So CDC has disease surveillance data. FDA has clinical trial data. CMS has payment reimbursement data. NIH has research data. States have a lot of longitudinal health data. Other outside partners have electronic health records. And we are using AI to find ways to look for even weak signals across all these differently structured data sets. And that is one of the potential benefits of AI that we are all excited about, and a lot of the HS people on this panel are working hard on that. Alicia,

Speaker 20 (03:01:04):
One thing I wanted to address that goes directly to this point of what we’re talking about is we’ve started launching this model of bringing new tools into ongoing clinical trials so we can broaden what’s being measured. I agree with Dr. Tall quite a bit that we are sometimes limited to where the technology has been versus where it’s going. And so being able to bring these new, we call it basically diagnostic markers, not necessarily bio, but a lot of other data inputs that we can get to enrich those data sets and seek new insights, I think is quite powerful and a model that we could expand even further. We’re applying it with our mental health for veterans clinical trials right now.

Speaker 16 (03:01:52):
Okay. Wonderful. We’re out of time. This has been a really wonderful discussion. As I said, it’s been live streamed and we’re going to, we’ve created this portal for more information. We’re very grateful to the Steven Alexandra Cohen Foundation, which is an amazing lyx partner, has devoted really significant resources to helping us treat Lyme. Mr. Secretary, do you have any final thoughts? I’m very,

Speaker 2 (03:02:17):
Very grateful for all of you participating. I hope it’s the beginning of a major national effort to solve this problem and finally give some relief and recognition to these patients who have been invisible for so long.

Speaker 16 (03:02:35):
Thank you very much. Everyone. If there are ways the department can help, please reach out to us and please continue to validate patience with Lyme. Thank you so much.