Betty Diamond. Photo: Public Relations at Northwell Health
The NAM member and physician-scientist discusses a new National Academies report on Lyme infection-associated chronic illness and the importance of listening, coordination, and action.
By Betty Diamond, Karen Meurer Bacellar
Betty Diamond has spent her career investigating complex diseases that challenge conventional thinking. A physician-scientist elected to the National Academy of Medicine (NAM) in 2006, she has helped illuminate how autoimmune conditions affect both the body and the brain. Diamondās work has pushed the field toward more nuanced understandings of chronic illness and the importance of patient experience in shaping research.
Lyme disease is something Diamond has been aware of for decades ā her father was one of the early patients included in the first New England Journal of Medicine report identifying the illness ā but it wasnāt until recently that she took a closer look at the condition from a scientific perspective. As a member of the committee behind , Diamond has helped examine why some people experience long-term symptoms after Lyme disease and how scientific research can make a difference for people living with the condition.
In this conversation with the National Academy of Medicine, Diamond reflects on the importance of validating patient experiences, how the science around Lyme disease is evolving, and why this report marks an important step toward more coordinated, evidence-based care.
The following interview has been edited for length and clarity.
Tell us a little more about the report. Why does it feel especially important now? And if possible, could you share a summary of what it covers?
Diamond: I think there are a couple of ways to answer that. First, I think many people would be surprised by how many individuals develop Lyme IACI ā or chronic Lyme disease ā every year, and how many continue to be affected by it long term.
With diseases that lack a clear diagnostic marker or an agreed-upon treatment plan, there’s often a tendency ā both in the medical community and among the public ā to dismiss them. People may think the symptoms arenāt real, or assume theyāre due to fatigue, stress, or dissatisfaction with life. Thatās why this report matters. It lays out just how common and debilitating this condition is and helps validate its reality.
It also outlines the key next steps: we need a clearer definition of the condition, validated diagnostic tests, and a deeper understanding of the pathogenesis. We know the cause is a previous infection with Borrelia, but we donāt yet understand why some people go on to develop a persistent medical condition.
Another important point the report makes is that Lyme IACI isnāt alone. There are other post-infectious conditions like it ā Long COVID, for example ā where people simply donāt fully recover. Many of the symptoms are similar: fatigue, pain, brain fog. The report argues that we donāt have to wait until we fully understand the biology before we act. We can begin conducting well-designed clinical trials now to address some of the most debilitating symptoms.
So, in summary, the report does three important things: it validates the condition, identifies critical gaps in our understanding, and emphasizes the need to start building evidence-based treatments immediately ā even as research continues.
Why have these long-term effects received so little attention, and what has changed to bring more focus to them now?
Diamond: I think COVID affected so many people. Itās probably hard to find someone who didnāt get it. So now, nearly everyone knows someone with Long COVID. And when that person is someone you know well ā someone whoās honest, doesnāt complain unnecessarily, enjoys their work and hobbies, and suddenly canāt do those things anymore ā it forces you to see that this is real.
Long COVID has changed how we think. Iāve also worked on the diagnostic criteria for , and the same challenges apply there. In my own lab, we became involved ā somewhat by chance ā in studying neuropsychiatric lupus. We realized that the cognitive problems and brain fog patients reported were being caused by the same mechanisms driving kidney and skin disease in lupus.
I remember being invited early on to speak to a group of patients with lupus. I was nervous. I thought, here are people dealing with kidney issues, cosmetic concerns, and cardiovascular risks, and now Iām going to tell them their disease might also affect the brain. But I presented the evidence as gently and clearly as I could ā and I was overwhelmed by the response. So many people came up to me afterward and thanked me. They felt seen. They had known something was wrong, but their doctors had told them to get more sleep, eat better, go to therapy, or take a Valium. Those things didnāt help, because they werenāt the root of the problem.
I think the first step in medical progress is identifying the problem and defining it clearly enough to study. Thatās what I believe this report is beginning to do.
Youāve talked about how validating it can be when a patient feels heard and taken seriously. How do you see the medical and scientific communities evolving in how they approach patient experiences, especially in conditions that are poorly understood or hard to diagnose?
Diamond: I think there has been a real shift in the scientific and medical communities toward thinking about medicine in a more patient-centered way. It starts with listening ā actually listening ā to the person in front of you. If someone says they have a problem and theyāre looking for help, the first instinct shouldnāt be to dismiss it as unreal or psychosomatic.
Thereās always a tendency to push away what we donāt understand. But the truth is, as physicians, we feel most fulfilled when we can help someone and see them get better. Itās much harder when you donāt know how to help. Still, I think the culture is changing. Thereās less of a paternalistic attitude now, and more willingness to sit with complexity and really hear what patients are saying.
And that change is happening in science too. Thereās growing recognition that itās not just valid but important to start with real-world biomedical problems and then ask the scientific questions that follow. You can peel the onion starting from a lab bench or from the clinic. Both approaches are valuable.
Another big shift is recognizing that patients arenāt just study subjects ā theyāre partners in the research process. People sometimes worry about feeling like guinea pigs in clinical trials, but when done right, itās a true collaboration. Thereās been a sea change in acknowledging that patients should help define what a āpositive outcomeā even is.
For example, letās say I run a trial and find that a treatment improves blood sugar levels in people with Lyme IACI. That might look like a success on paper. But if patients come back and say, āMy fatigue and pain havenāt improved,ā then it hasnāt really helped them. Thatās why the report stresses the need for clinical trials that measure what actually matters to people living with the condition.
Thatās a powerful point, and a necessary one. So, what next steps is the report recommending?
Diamond: The report lays out several next steps. One of the most important is engaging government agencies that have already played a key role in coordinating research efforts and conducting epidemiologic studies. Weāre also calling for foundations and patient groups to be part of the process, so that all stakeholders can work together.
For example, we recommend that patient registries be maintained in a standardized way, so that the same information is collected across systems. Bio samples should also be processed and stored using consistent protocols. That way, we can actually use and compare data effectively and make the most of the resources weāre collecting.
Weāve covered a lot today, but is there anything else youād like to share ā about the report, the findings, or anything we havenāt touched on?
Diamond: Yes, I think itās important for people reading this report to understand that itās meant to be organic. What weāve outlined now will need to be revisited in five or ten years, because weāre optimistic that real progress will be made. And with that progress, the priorities around research questions, clinical trials, and clinical strategies will change.
As we learn more about the pathogenesis of this disease, weāll move from managing symptoms ā which is where clinical trials can start today ā to actually trying to interrupt or slow down the disease process itself. This report isnāt something we can refer back to in ten years expecting everything to still apply. Some recommendations may still hold, but hopefully many will evolve, because we will have moved forward in a substantial way.
Thatās something I hope readers will take away: this report is a starting point, not a final word.
Views expressed are those of the interviewee and do not necessarily reflect the views of the National Academy of Medicine.
