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. Diamond’s 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 — her father was one of the early patients included in the first New England Journal of Medicine report identifying the illness — but it wasn’t until recently that she took a closer look at the condition from a scientific perspective. As a member of the committee behind a new National Academies report on Lyme infection-associated chronic illness, or Lyme IACI, 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 — or chronic Lyme disease — 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 — both in the medical community and among the public — to dismiss them. People may think the symptoms aren’t real, or assume they’re due to fatigue, stress, or dissatisfaction with life. That’s 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 don’t yet understand why some people go on to develop a persistent medical condition.
Another important point the report makes is that Lyme IACI isn’t alone. There are other post-infectious conditions like it — Long COVID, for example — where people simply don’t fully recover. Many of the symptoms are similar: fatigue, pain, brain fog. The report argues that we don’t 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 — 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. It’s probably hard to find someone who didn’t get it. So now, nearly everyone knows someone with Long COVID. And when that person is someone you know well — someone who’s honest, doesn’t complain unnecessarily, enjoys their work and hobbies, and suddenly can’t do those things anymore — it forces you to see that this is real.
Long COVID has changed how we think. I’ve also worked on the diagnostic criteria for myalgic encephalomyelitis/chronic fatigue syndrome, and the same challenges apply there. In my own lab, we became involved — somewhat by chance — 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 I’m going to tell them their disease might also affect the brain. But I presented the evidence as gently and clearly as I could — 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 didn’t help, because they weren’t the root of the problem.
I think the first step in medical progress is identifying the problem and defining it clearly enough to study. That’s what I believe this report is beginning to do.
You’ve 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 — actually listening — to the person in front of you. If someone says they have a problem and they’re looking for help, the first instinct shouldn’t be to dismiss it as unreal or psychosomatic.
There’s always a tendency to push away what we don’t understand. But the truth is, as physicians, we feel most fulfilled when we can help someone and see them get better. It’s much harder when you don’t know how to help. Still, I think the culture is changing. There’s 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. There’s growing recognition that it’s 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 aren’t just study subjects — they’re partners in the research process. People sometimes worry about feeling like guinea pigs in clinical trials, but when done right, it’s a true collaboration. There’s been a sea change in acknowledging that patients should help define what a “positive outcome” even is.
For example, let’s 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, “My fatigue and pain haven’t improved,” then it hasn’t really helped them. That’s why the report stresses the need for clinical trials that measure what actually matters to people living with the condition.
That’s 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. We’re 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 we’re collecting.
We’ve covered a lot today, but is there anything else you’d like to share — about the report, the findings, or anything we haven’t touched on?
Diamond: Yes, I think it’s important for people reading this report to understand that it’s meant to be organic. What we’ve outlined now will need to be revisited in five or ten years, because we’re 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, we’ll move from managing symptoms — which is where clinical trials can start today — to actually trying to interrupt or slow down the disease process itself. This report isn’t 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.
That’s 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.
