Episode 126: ME/CFS and Long COVID: What's New?
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I'm thrilled to be joined by Dr. Anthony Komaroff, a Professor of Medicine at Harvard Medical School and a Senior Physician at Brigham and Women's Hospital. With over 40 years of experience studying myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), Dr. Komaroff brings invaluable insights to our conversation.
He explains the complex nature of ME/CFS and its similarities to long COVID, emphasizing that both illnesses have many of the same problems, especially in the immune system and brain. This shows why we need more research and awareness on these conditions.
Learn about the connections between long COVID and ME/CFS, the latest research, and practical advice for those seeking support and understanding in their health journeys.
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Dr. Anthony L. Komaroff is a distinguished Professor of Medicine at Harvard Medical School and a Senior Physician at Brigham and Women’s Hospital. He has held significant leadership roles, including Director of the Division of General Medicine and Primary Care at Brigham and Women’s Hospital. Dr. Komaroff is known for his research on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and human herpesvirus infections. He has published over 270 research articles and book chapters and served on numerous advisory committees for major health organizations.
LinkedIn: https://www.linkedin.com/in/anthony-l-komaroff-64133346/
Facebook: https://web.facebook.com/anthonyl.komaroff
Solve ME: https://solvecfs.org
Open Medicine Foundation: https://www.omf.ngo
National Institutes of Health (NIH): https://www.nih.gov/mecfs/about-mecfs
Centers for Disease Control and Prevention (CDC): https://www.cdc.gov/me-cfs/about/index.html
Brigham and Women's Hospital Boston
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Transcript Below:
Haylie Pomroy: I'm Haylie Pomroy, #1 New York Times best-selling author and the Assistant Director of the Integrative Medicine Program at the Institute for Neuro-Immune Medicine. Today, we're going to talk a lot about ME/CFS, and I am fortunate to be joined with Dr. Anthony Komaroff. Dr. Komaroff is a professor of medicine at Harvard Medical School. He was also a senior physician at Brigham and Women's Hospital. Dr. Komaroff has worked in the field and studied ME/CFS. He is also a senior physician at Brigham and Women's Hospital. Dr. Komaroff has been studying and doing research in the field of ME/CFS for over 40 years. Dr. Komaroff, thank you so much for being here with me today I really appreciate it.
Prof. Anthony Komaroff: Thanks for inviting me, Haylie!
Haylie Pomroy: Our community was so excited to have you. I posted a couple of days ago that I was getting the chance to interview you, and we had tons of questions. You have such an extensive background and it's touched on so many aspects of this syndrome or complexity of symptom profile that the questions were pretty vast. But I want to first ask you, how did you get interested in this space? In your expression of medicine, how did you land here?
Prof. Anthony Komaroff: Early in my career, I saw several patients who told me something that I'd never heard before, and I'd never been taught in medical school. They said they'd come down with what seemed like a brief flu viral illness. But this time, unlike many previous times, they never got better. It was now months or years later and they were still suffering from symptoms that had made it very hard for them to function. I said I hadn't heard of that. I went into the textbooks, I couldn't find any reference to such an illness in the textbooks. I did the usual laboratory tests and the results came back normal. And so I had a dilemma. Either these patients were imagining they were sick or they had an illness that medicine had not yet recognized and figured out.
Haylie Pomroy: I love that you said the word “or” and I love what you just said, “An illness that medicine had just not recognized yet or figured out.” That just gave me chills because it gave so many people validation. I'm sorry to interrupt. Please keep going. I'm underlining this. This is great.
Prof. Anthony Komaroff: Anyway, I said, well, this is interesting. If I'm going to help these people, I have to see if I can find any underlying physical abnormalities that are caused by this illness and that are causing the symptoms of the illness, and I began looking for those and that's how it all began.
Haylie Pomroy: And where were you practicing at the time?
Prof. Anthony Komaroff: At the Brigham and Women's Hospital.
Haylie Pomroy: And when you were seeing patients, were you seeing more and more? We're more and more referrals coming in with this? Or was it just trickling in with your patient population?
Prof. Anthony Komaroff: It’s trickling in with the patient population, initially, but over the next five years or so, word got out and interest in the illness started to grow, and then it became more like a flood.
Haylie Pomroy: Unfortunately. I wish it was a dwindling trickle. This is what I hope for the future. When you started seeing patients, had they previously seen typically other practitioners that weren't acknowledging what they had going on? We hear about that a lot in our community, about people sometimes seeing 20 doctors and 10 years before they finally get a diagnosis. Were you seeing that they were coming to you having had already been to other people?
Prof. Anthony Komaroff: Yeah, unfortunately, that was often the case. Sometimes those other physicians were genuinely puzzled and trying to figure it out but couldn't, but other times, some of the physicians decided to dismiss the patients. If I can't figure out your diagnosis, that's my problem. And I don't like having a problem, so I'm going to make it your problem. The problem is you. You're imagining that you have these symptoms. And I saw that happening to lots of patients.
Haylie Pomroy: I love the way you distilled that down. I think being in the community, in the patient perspective, and having an autoimmune disorder myself, I can't tell you how much I appreciate you expressing that. With all of your expertise in expressing and validating that a patient can feel that way and can feel treated that way. When I first heard of this, it was called chronic fatigue syndrome, then the ME part came on. How was that evolution, what does it mean? And why was it so important that that happened?
Prof. Anthony Komaroff: Chronic fatigue syndrome is an awful name. It trivializes the illness because every human being says, “I'm getting fatigued.” Everybody's got fatigue.
Haylie Pomroy: I'm tired too.
Prof. Anthony Komaroff: The name did not convey how debilitating the illness was, how badly it interfered with people's lives at home and at work. Myalgic encephalomyelitis was a term that had actually begun, used 40 or 50 years ago in Britain. And many of us in the United States tried to make it a part of the name of the illness. I hope ultimately it becomes the only name of the illness and that chronic fatigue syndrome is dropped.
Haylie Pomroy: That would be fabulous. I have heard things about adding immune dysregulation, and immune exhaustion. There's been a lot of better nomenclature that would describe some of what's happening in the body. When you started to study this illness, and it was really cool to me that it was patient-driven, who else was in the field? Was it far or few between, were we leaning on other pre-viral illnesses? Was it more recognized internationally? What did the what did the field look like?
Prof. Anthony Komaroff: It was a small group of of doctors and physician-scientists in Atlanta, Bethesda, Denver, Miami, Dr. Klimas's group, who were getting interested at about the same time in the 1980s. And then gradually, particularly after the early 1990s, we and others had begun for the first time to identify some of those underlying physical abnormalities that were in this illness to find tests that were abnormal compared to the initial experience of the usual tests not showing abnormalities.
Haylie Pomroy: What were some of those?
Prof. Anthony Komaroff: Initially in the 1990s, they were abnormalities primarily of the brain and the immune system, for example, at about the same time, Dr. Klimas’s group and our group had identified that a certain type of white blood cell, called natural killer cells, that are very important in fighting viral infections, they were not working well. When you put them in the laboratory dish and challenged them to do their job, they just weren’t working.
Haylie Pomroy: And so we saw that modification in the immune system. I have a heartache for people that were told it's all in their head, that we're told that it's menopause, or we're told that they just need to get rest. Every time when I hear brilliant scientists like yourself validate this for patients, I have heartbreak for those people that have lost hope, or feel like they're going to lose hope, in their journey back to some sort of homeostasis. Physiologically, what did we see in the brain?
Prof. Anthony Komaroff: There have been so many different abnormalities in the brain and the autonomic nervous system, which is a part of the brain, but it spreads out to the rest of the body. Over the last 20 years in particular, there have been a huge number of abnormalities found that involve the brain, the autonomic nervous system, the immune system, but also energy metabolism, the gut microbiome, the bacteria that live in all of our guts, and the cardiovascular system, the heart, and the blood vessels. There are so many abnormalities of the brain and of all of these other organ systems. It's not possible to summarize them in a short interview like ours.
Haylie Pomroy: This is so good for people to have this conversation. How do people find doctors that have some semblance of education in this? Because we want to educate our our upcoming physicians and reeducate our physicians that are currently practicing. We had an interesting conversation in clinic the other day where we were talking about how Covid happened all at once for physicians. Many physicians that didn't know how to treat long viral dysregulation are being forced to, because there's this large volume of people and Covid was definitely recognized and believed, but a lot of the doctors like yourself that were studying ME/CFS for so many years have educated to be able to leapfrog what that dysregulation looks like in Long Covid because of what they had studied in ME/CFS. Do you agree with that?
Prof. Anthony Komaroff: I do, but not every doctor does. We, in fact, last year, in 2023, we published a paper that pointed out not just similar symptoms of ME/CFS and Long Covid, which had been recognized pretty much since the Covid pandemic began. But if you look at the literature, there now are thousands of published scientific articles of the brain, of the immune system, of energy metabolism, and they're saying the same thing about the similarities in the underlying abnormalities of both ME/CFS and Long Covid. I'm one of those people who thinks that what we learn about the underlying biology of ME/CFS will apply, in most cases at least, to Long Covid and vice versa. The real encouraging news is that the world, the government of the United States in particular, is spending lots more money finally on studying Long Covid, and hopefully that will translate into the ME/CFS in other post-infectious fatigue syndromes, which I think both Long Covid and ME/CFS are.
Haylie Pomroy: I heard somebody the other day use the term that what we're seeing now is the true pandemic. That the post-dysregulation in the body is really making an impact on a lot of people and an impact on people that fall all across the spectrum. Had Covid really bad? Didn't have Covid really bad? Potentially vaccines are associated with it. There's good research going into all of that, which is great., and funding. But this is forcing, both the patient and the physician to understand what's happening in the body. That's what I want to ask you, what is it that you think is causing the physical abnormalities and all of these symptoms? What the heck is happening? The million-dollar question, let's do it today. What is going on, doctor? What is going on?
Prof. Anthony Komaroff: Let me start with what I think is not causing ME/CFS. I think and I've always thought that ME/CFS is not an illness caused by a single novel, infectious agent in the way that HIV is the necessary trigger for Aids.
Haylie Pomroy: Got it.
Prof. Anthony Komaroff: I think instead, ME/CFS is caused by the way the immune system and the energy metabolism respond to an infection. What do I mean? I mean that people with ME/CFS often say, it's like I got the flu, a flu that never went away. I think there's a clue in that. And the question is, why do we feel sick the way we do when we get the flu? What is happening in our body that causes the sickness symptoms? And the science of that is now coming into view. We have understood that when you get an infection, the immune system has to attack it, and attacking it requires energy, and energy in the form of ATP molecules is something that our body has only so much of. What do we need to do to find the energy to fight the infection? The body needs to stop or throttle down any kind of energy-consuming activities that aren’t completely necessary if we can preserve the energy to fight the infection. And to make a long story short, our bodies, when we get a virus like the flu, have a hard-wired response that causes the symptoms, that causes us to be fatigued. What don't we do? We don't exercise and use it… We don't think very hard and use energy doing that. We don't have a good appetite, so we don't eat a lot, we don't digest. And digestion requires energy. Our body is hard-wired to throttle down behaviors that take energy so that the energy we've got can be preserved to fight the infection. That's something that's well-established not just in humans, but in all animals where it's ever been studied. You can tell when you're tense.
Haylie Pomroy: My background is in agriculture and animal sciences, then biochemistry, then nutrition, and now neuroimmunology. But I always say we nourish our pets better than we nourish most of ourselves. I always say we do not walk out the door and don't feed our dog, yet we walk out the door without breakfast, expect our bodies to heal, think, and perform. In every animal, whether it is in captivity and in the wild, you're right, the body is designed to to gear down in order to conserve. We're making progress in understanding some of the causes, some of the triggers, I guess we would call them for ME/CFS? What are some of the things that we have identified as triggers? I know you mentioned a viral component.
Prof. Anthony Komaroff: Many different kinds of infectious agents, not just viruses, but also some bacteria, some protozoans, like Giardia that infect our guts. A very similar illness to ME/CFS and to Long Covid follows a whole variety of different infections. It's been well-established. And it's even interesting that following certain injuries, noninfectious injuries, like a bad auto accident or like Gulf War Illness, that Dr. Klimas studies, where there's a physical injury to the body in Gulf War illness from toxins they’re exposed to. These injuries to the body trigger a very similar illness to the post-infection illness that we are talking about today. The same reason, in my opinion, the body has to heal that auto accident injury, that Gulf War illness toxic injury, and to heal it, it has to throttle down other energy-consuming activities to preserve the energy necessary to heal the injury.
Haylie Pomroy: It does feel like there are many triggers that all affect our bodies to adapt to those, like a hermetic event that causes our bodies to create dysfunctional homeostasis where we can't quite get traction, either clear a virus, detoxify efficiently. In the GWI population, we find residual toxins decades later, generations later. Toxins that are transmitted or trans-delivered, to the next generation through pregnancy. Do you think there's a genetic component or a predisposition? What is it the HLA with the toxicity, the molds? We're looking at some of those expressions. Do we think that that could be is it the perfect storm or is it the perfect environment during the storm, or is it both?
Prof. Anthony Komaroff: Most human illnesses are a combination of a genetic vulnerability, plus something in the environment that brings out that vulnerability. And I think that's likely to prove true in ME/CFS and Long Covid. I would say there's already pretty strong evidence that there is a genetic component to both Long Covid and ME/CFS. Now, how exactly those genetic differences make a person vulnerable? That we don't even begin to understand yet. But I think genes are a part of it, and the environment, in this case, infectious agents, that like the toxins you're referring to remain in the body and so the immune system sees that the battle actually isn't over. When we get the flu, we feel sick for a week because it takes about a week for the immune system to eradicate the virus. But with ME/CFS and certainly with Long Covid, there's now strong evidence that many people with Long Covid have still some of the Covid virus in their body and their immune system sees that. And the immune system says, hey, the battle's over. We have to keep fighting. And that ongoing battle that the immune system has to fight is what's leading to the ongoing symptoms of the illness.
Haylie Pomroy: During the heat of the pandemic, I felt really fortunate to have so many brilliant scientists around and people just feeling like they could question things and collaborate. And I'll never forget when the 10 -14 days, it'll clear your body. It should clear the body in 10 to 14 days. And I mean, people in the room were literally screaming. Immunologists were going, this virus doesn’t act like that. Maybe for some people, but we're discounting so many people that are going to struggle after this. Did you have that angst, that feeling while all this was going on? And was that happening in your medical space?
Prof. Anthony Komaroff: Yes. I think, most people assumed that this virus, once the immune system got rid of it, would be gone for good. Because other viruses like it, that's often true. RNA viruses are thought to be easier to eradicate from the body than DNA viruses, like herpes virus, for example, which live in the body for the rest of your life once you get infected. People did think the immune system is going to win this battle in short order and then everything should be hunky dory. Reasonable expectation but I think it has unfortunately turned out not to be true.
Haylie Pomroy: You mentioned some things that don't clear the body, some viruses that don't clear the body, and a lot of the conversation around ME/CFS, but also Long Covid, people are talking about specifically a group of viruses. But a lot of times I feel like the conversation goes towards EBV or Epstein-Barr virus. Do you think that that can be also one of the infectious triggers, or is that reactivated when the immune system goes wonky? I'll use that very scientific term. Feel free to use it in your next lecture at Harvard.
Prof. Anthony Komaroff: I do think that in some people, the Epstein-Barr virus, which is one kind of herpes virus, and another virus, too, something called human herpesvirus 6, and possibly other herpes viruses that are living asleep inside the brain in many of us, they get reactivated or reawakened by the Covid or in ME/CFS by whatever the triggering agent was. And once they get reactivated, particularly if they're reactivated in the brain that they now are in another battle in the brain that the immune system has to fight. And again, that's producing the symptoms, according to the theory that I put forward, that's producing the symptoms just like the initial Covid virus was, it's a complex thing. Probably there there isn't a single reason for the illness. And in every person, there are multiple different contributing reasons.
Haylie Pomroy: I know that you are taking this approach of just honoring the complexity of the patient and their personal experience, but also recognizing the complexity of getting the patient back into a healthier state of homeostasis. I know that you're doing that in the patient setting. Please tell me you're also doing this as you're educating the doctors, as you're educating the next generation of practitioners.
Prof. Anthony Komaroff: We're trying to. Very hard. To be honest, doctors throughout the world, and certainly the ones I know in the United States, have been under such pressure for the last several years, in large part because of the pandemic but other things, too, trying to teach people about a new illness like ME/CFS, which is not real new, but it's new to many doctors. Long Covid is brand new, in the last few years, and the fact is we have a lot more answers today than we did 20 years ago but we still don't have enough answers that means we don't have enough stuff to teach doctors. What we don't have yet are definite diagnostic tests or proven FDA-approved treatments. And that's what a practicing doctor wants to know. I'm supposed to take care of patients with this illness, give me the test and I'll be able to do something to help my patients. We're still in the process of developing those things and so we don't have definite tools to give doctors yet.
Haylie Pomroy: It was interesting. Someone said to me one time that we wasted so many years, 10 to 20 years depending. There was just this big waste of not wasted time, but time that could have been used to develop diagnostics, to verify the theory or the hypothesis that this could be what's going on in the patient and to have a protocol for progress for progression of the patient in a positive light, just getting validation that it actually existed. The thing that's a little bit nice is that the gap seems to be shortened with the Long Covid, or at least to some aspect, or because not that the diagnostics are good or the protocol for progression in a positive direction are good yet. But we don't have to delete, we don't have to go through those hoops of this is actually something going on in the body and to believe the patient. Do you see that now that at least we're getting to the forefront of diagnostics and treatment before just debating whether it exists or not?
Prof. Anthony Komaroff: Yeah, I do. Over the 40 years that I've been involved in taking care of patients with ME/CFS and studying it, more recently, studying Long Covid. There's been enormous progress not just in what we know about the underlying abnormalities in the body, but awareness in the doctors' community about both of these illnesses. I think that's good. And unfortunately, we also are learning and we get both illnesses are really big problems. There are at least 3 million people in the United States alone and many millions more around the world with ME/CFS. There are at least 10 million with Long Covid, many would say more than that, just in the US, and 70 million around the world. And that has huge implications for our country, for our economy. There's a few percent of the workforce in the United States right now can't work because of Long Covid.
Haylie Pomroy: I was in Washington, DC with Dr. Peter Marks we were doing a podcast together, interviewing him. He's the head of CBER through the FDA. And it was early in COVID, we were maybe 12 months in at that point. And we were having a conversation about his oncological hematologist. And I have an autoimmune disorder, a blood disorder. I have ITP. I feel like I have good friends that are hematologists all my life growing up. Maybe the really candid conversation about some of the co-morbidities with Covid and he was talking about it's going to be the after. It's going to be the after that we're gonna have to work really hard to get the American population healthy. It's more than just surviving the pandemic. I keep replaying that conversation that I had in my mind. I'm in DC, I'm talking to Dr. Peter Marks and he's saying it's going to be the after. It's going to be getting the patient healthy. I just thought that that was a lot of insight and I know in so much of the work that you've done, you look at the different systems and the different organs and the different pathways and processes. I am very convicted in nutrition. I'm a nutritionist by trade. But are we seeing that we have to strengthen the whole body just as much as attacking a potential pathogen at this point when they're past the original insult?
Prof. Anthony Komaroff: Yes. Although we don't understand very well how to do that, yes, nutrition for sure.
Haylie Pomroy: Say that again, nutrition for sure.
Prof. Anthony Komaroff: In healing almost any illness. And so is regular exercise, but of course, with ME/CFS and Long Covid, that's a problem because part of the illness is an intolerance to, a negative reaction to exercise if it's pushed too hard. You have to be very careful with that. I'm not recommending exercise therapy for either of those two illnesses.
Haylie Pomroy: But it does lend to the fact that if we know that exercise helps the body be healthy and you're dealing with something that exercise comes off the table, that that also is a contributing factor, it makes it harder for the body to get well. The very state of exercising, causing an exacerbation of not just symptoms but inflammatory response, we're talking about a syndrome, that one of our cornerstones of health is pulled away from us. We have to be really creative at putting other things in until we get the body back to a metabolic state where exercise can be employed, but sometimes it just can't. It's like saying to a person with two fractured femurs, it'd be really good if you get on the treadmill every day. If that's not the case, then what do we do? We don't just say, “Sorry, you can't. You have two fractured femurs, no treadmill for you, therefore you can't achieve health.” We have to be creative and resourceful and say, can we come in the back door, the side door, the front door, kick down the door in order to embrace a body where it can create a new homeostasis back towards the progression of health. I'm glad that you validated that for people. My daughter was dealing with some major health-positive EBV, PCR, and also HHV 6. I ended up at UCLA testing positive for every virus you could imagine. It's a crazy situation. But all her friends were like, you just need to get up. And she's a professional rodeo. She is a type A, scholarship student, rides per rodeo, barrel races, landed her at UCLA, and was tanked physically. And everybody said, just get up and ride. Just get up and run. Just get up and exercise. Sometimes she could get enough rest where psychologically she'd force herself to do it and she would pay for it. I mean, just pay for it. I'm lucky I get access to people like you. I have doctors that are trained by people like you. I have Dr. Klimas around in my space, but so many people out there just don't have it. I think Dr. Komaroff, I know we're running out of time but I just want to say that everybody out there that's listening, there is so much value in you validating what they're going through. We appreciate it if our loved ones and our moms and our kids and our parents validate us. But to have somebody in the medical establishment that's had the legacy that you've created validate it for us, I just want to thank you for that gift because it's really huge to all of those people that are struggling out there.
Prof. Anthony Komaroff: Thank you for those kind words, Haylie. I think though we can't rest easy. We need to take action. There there is no doubt that there's much more interest in and resources for studying these illnesses now. But I'd urge people to contact your representatives in Congress, contact the director of the National Institutes of Health, and really urge that there be more support for studying with ME/CFS as part of the Long Covid initiative, as part of the Women's Health Initiative. It's by investing more in figuring out what's going wrong in the body that we're going to have good diagnostic tests and most importantly effective treatments.
Haylie Pomroy: And everybody out there, do not underestimate the power of doing that. We would not see the money going towards our veterans right now for Gulf War Injury (GWI), for Desert Shield, or Desert Storm, if it weren't for very large individuals contacting. Please make sure that you're advocating. Also, where can people get more information about the stuff that we're talking about? Do we have books? Do we have websites? Where can they go to? You will post this everywhere for everybody, but what would be the specific call to action that somebody can do right now to become an empowered patient and an advocate for their loved ones?
Prof. Anthony Komaroff: There are a growing number of organizations, patient-focused organizations like Soul, ME, and Open Medicine Foundation on the West Coast that have websites, have information available. The NIH and CDC have information available. And it's not hard to find lots of information online. The problem is some of it is probably incorrect, but that's the internet. Nevertheless, the organizations I've mentioned are the best places to get online information.
Haylie Pomroy: I know that this podcast is going to have a ton of questions from our community. Please, may I please have you back on? I know that our community would love it very much. I'd love to come see you when I'm in Boston. I travel to Boston quite a bit. Spend some time, sit in your classes. I just want to learn more and I really thank you for teaching not only our next generation but being a huge advocate for your patients and for the reeducation of the physicians that are at the frontline right now of helping their patients. Thank you so much for being here. I really appreciate the conversation and all the work that you've done on behalf of all of us out there.
Prof. Anthony Komaroff: Thank you for your kind words, Haylie. Been a pleasure.
Haylie Pomroy: Talk to you soon.
Prof. Anthony Komaroff: Bye-bye.
Haylie Pomroy: Bye.
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I'm thrilled to be joined by Dr. Anthony Komaroff, a Professor of Medicine at Harvard Medical School and a Senior Physician at Brigham and Women's Hospital. With over 40 years of experience studying myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), Dr. Komaroff brings invaluable insights to our conversation.
He explains the complex nature of ME/CFS and its similarities to long COVID, emphasizing that both illnesses have many of the same problems, especially in the immune system and brain. This shows why we need more research and awareness on these conditions.
Learn about the connections between long COVID and ME/CFS, the latest research, and practical advice for those seeking support and understanding in their health journeys.
Tune in to the Fast Metabolism Matters Podcast – ME/CFS and Long COVID: What's New? With Prof. Anthony Komaroff.
Enjoy this episode? Subscribe to Fast Metabolism Matters and leave a 5-star review.
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Dr. Anthony L. Komaroff is a distinguished Professor of Medicine at Harvard Medical School and a Senior Physician at Brigham and Women’s Hospital. He has held significant leadership roles, including Director of the Division of General Medicine and Primary Care at Brigham and Women’s Hospital. Dr. Komaroff is known for his research on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and human herpesvirus infections. He has published over 270 research articles and book chapters and served on numerous advisory committees for major health organizations.
LinkedIn: https://www.linkedin.com/in/anthony-l-komaroff-64133346/
Facebook: https://web.facebook.com/anthonyl.komaroff
Solve ME: https://solvecfs.org
Open Medicine Foundation: https://www.omf.ngo
National Institutes of Health (NIH): https://www.nih.gov/mecfs/about-mecfs
Centers for Disease Control and Prevention (CDC): https://www.cdc.gov/me-cfs/about/index.html
Brigham and Women's Hospital Boston
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Transcript Below:
Haylie Pomroy: I'm Haylie Pomroy, #1 New York Times best-selling author and the Assistant Director of the Integrative Medicine Program at the Institute for Neuro-Immune Medicine. Today, we're going to talk a lot about ME/CFS, and I am fortunate to be joined with Dr. Anthony Komaroff. Dr. Komaroff is a professor of medicine at Harvard Medical School. He was also a senior physician at Brigham and Women's Hospital. Dr. Komaroff has worked in the field and studied ME/CFS. He is also a senior physician at Brigham and Women's Hospital. Dr. Komaroff has been studying and doing research in the field of ME/CFS for over 40 years. Dr. Komaroff, thank you so much for being here with me today I really appreciate it.
Prof. Anthony Komaroff: Thanks for inviting me, Haylie!
Haylie Pomroy: Our community was so excited to have you. I posted a couple of days ago that I was getting the chance to interview you, and we had tons of questions. You have such an extensive background and it's touched on so many aspects of this syndrome or complexity of symptom profile that the questions were pretty vast. But I want to first ask you, how did you get interested in this space? In your expression of medicine, how did you land here?
Prof. Anthony Komaroff: Early in my career, I saw several patients who told me something that I'd never heard before, and I'd never been taught in medical school. They said they'd come down with what seemed like a brief flu viral illness. But this time, unlike many previous times, they never got better. It was now months or years later and they were still suffering from symptoms that had made it very hard for them to function. I said I hadn't heard of that. I went into the textbooks, I couldn't find any reference to such an illness in the textbooks. I did the usual laboratory tests and the results came back normal. And so I had a dilemma. Either these patients were imagining they were sick or they had an illness that medicine had not yet recognized and figured out.
Haylie Pomroy: I love that you said the word “or” and I love what you just said, “An illness that medicine had just not recognized yet or figured out.” That just gave me chills because it gave so many people validation. I'm sorry to interrupt. Please keep going. I'm underlining this. This is great.
Prof. Anthony Komaroff: Anyway, I said, well, this is interesting. If I'm going to help these people, I have to see if I can find any underlying physical abnormalities that are caused by this illness and that are causing the symptoms of the illness, and I began looking for those and that's how it all began.
Haylie Pomroy: And where were you practicing at the time?
Prof. Anthony Komaroff: At the Brigham and Women's Hospital.
Haylie Pomroy: And when you were seeing patients, were you seeing more and more? We're more and more referrals coming in with this? Or was it just trickling in with your patient population?
Prof. Anthony Komaroff: It’s trickling in with the patient population, initially, but over the next five years or so, word got out and interest in the illness started to grow, and then it became more like a flood.
Haylie Pomroy: Unfortunately. I wish it was a dwindling trickle. This is what I hope for the future. When you started seeing patients, had they previously seen typically other practitioners that weren't acknowledging what they had going on? We hear about that a lot in our community, about people sometimes seeing 20 doctors and 10 years before they finally get a diagnosis. Were you seeing that they were coming to you having had already been to other people?
Prof. Anthony Komaroff: Yeah, unfortunately, that was often the case. Sometimes those other physicians were genuinely puzzled and trying to figure it out but couldn't, but other times, some of the physicians decided to dismiss the patients. If I can't figure out your diagnosis, that's my problem. And I don't like having a problem, so I'm going to make it your problem. The problem is you. You're imagining that you have these symptoms. And I saw that happening to lots of patients.
Haylie Pomroy: I love the way you distilled that down. I think being in the community, in the patient perspective, and having an autoimmune disorder myself, I can't tell you how much I appreciate you expressing that. With all of your expertise in expressing and validating that a patient can feel that way and can feel treated that way. When I first heard of this, it was called chronic fatigue syndrome, then the ME part came on. How was that evolution, what does it mean? And why was it so important that that happened?
Prof. Anthony Komaroff: Chronic fatigue syndrome is an awful name. It trivializes the illness because every human being says, “I'm getting fatigued.” Everybody's got fatigue.
Haylie Pomroy: I'm tired too.
Prof. Anthony Komaroff: The name did not convey how debilitating the illness was, how badly it interfered with people's lives at home and at work. Myalgic encephalomyelitis was a term that had actually begun, used 40 or 50 years ago in Britain. And many of us in the United States tried to make it a part of the name of the illness. I hope ultimately it becomes the only name of the illness and that chronic fatigue syndrome is dropped.
Haylie Pomroy: That would be fabulous. I have heard things about adding immune dysregulation, and immune exhaustion. There's been a lot of better nomenclature that would describe some of what's happening in the body. When you started to study this illness, and it was really cool to me that it was patient-driven, who else was in the field? Was it far or few between, were we leaning on other pre-viral illnesses? Was it more recognized internationally? What did the what did the field look like?
Prof. Anthony Komaroff: It was a small group of of doctors and physician-scientists in Atlanta, Bethesda, Denver, Miami, Dr. Klimas's group, who were getting interested at about the same time in the 1980s. And then gradually, particularly after the early 1990s, we and others had begun for the first time to identify some of those underlying physical abnormalities that were in this illness to find tests that were abnormal compared to the initial experience of the usual tests not showing abnormalities.
Haylie Pomroy: What were some of those?
Prof. Anthony Komaroff: Initially in the 1990s, they were abnormalities primarily of the brain and the immune system, for example, at about the same time, Dr. Klimas’s group and our group had identified that a certain type of white blood cell, called natural killer cells, that are very important in fighting viral infections, they were not working well. When you put them in the laboratory dish and challenged them to do their job, they just weren’t working.
Haylie Pomroy: And so we saw that modification in the immune system. I have a heartache for people that were told it's all in their head, that we're told that it's menopause, or we're told that they just need to get rest. Every time when I hear brilliant scientists like yourself validate this for patients, I have heartbreak for those people that have lost hope, or feel like they're going to lose hope, in their journey back to some sort of homeostasis. Physiologically, what did we see in the brain?
Prof. Anthony Komaroff: There have been so many different abnormalities in the brain and the autonomic nervous system, which is a part of the brain, but it spreads out to the rest of the body. Over the last 20 years in particular, there have been a huge number of abnormalities found that involve the brain, the autonomic nervous system, the immune system, but also energy metabolism, the gut microbiome, the bacteria that live in all of our guts, and the cardiovascular system, the heart, and the blood vessels. There are so many abnormalities of the brain and of all of these other organ systems. It's not possible to summarize them in a short interview like ours.
Haylie Pomroy: This is so good for people to have this conversation. How do people find doctors that have some semblance of education in this? Because we want to educate our our upcoming physicians and reeducate our physicians that are currently practicing. We had an interesting conversation in clinic the other day where we were talking about how Covid happened all at once for physicians. Many physicians that didn't know how to treat long viral dysregulation are being forced to, because there's this large volume of people and Covid was definitely recognized and believed, but a lot of the doctors like yourself that were studying ME/CFS for so many years have educated to be able to leapfrog what that dysregulation looks like in Long Covid because of what they had studied in ME/CFS. Do you agree with that?
Prof. Anthony Komaroff: I do, but not every doctor does. We, in fact, last year, in 2023, we published a paper that pointed out not just similar symptoms of ME/CFS and Long Covid, which had been recognized pretty much since the Covid pandemic began. But if you look at the literature, there now are thousands of published scientific articles of the brain, of the immune system, of energy metabolism, and they're saying the same thing about the similarities in the underlying abnormalities of both ME/CFS and Long Covid. I'm one of those people who thinks that what we learn about the underlying biology of ME/CFS will apply, in most cases at least, to Long Covid and vice versa. The real encouraging news is that the world, the government of the United States in particular, is spending lots more money finally on studying Long Covid, and hopefully that will translate into the ME/CFS in other post-infectious fatigue syndromes, which I think both Long Covid and ME/CFS are.
Haylie Pomroy: I heard somebody the other day use the term that what we're seeing now is the true pandemic. That the post-dysregulation in the body is really making an impact on a lot of people and an impact on people that fall all across the spectrum. Had Covid really bad? Didn't have Covid really bad? Potentially vaccines are associated with it. There's good research going into all of that, which is great., and funding. But this is forcing, both the patient and the physician to understand what's happening in the body. That's what I want to ask you, what is it that you think is causing the physical abnormalities and all of these symptoms? What the heck is happening? The million-dollar question, let's do it today. What is going on, doctor? What is going on?
Prof. Anthony Komaroff: Let me start with what I think is not causing ME/CFS. I think and I've always thought that ME/CFS is not an illness caused by a single novel, infectious agent in the way that HIV is the necessary trigger for Aids.
Haylie Pomroy: Got it.
Prof. Anthony Komaroff: I think instead, ME/CFS is caused by the way the immune system and the energy metabolism respond to an infection. What do I mean? I mean that people with ME/CFS often say, it's like I got the flu, a flu that never went away. I think there's a clue in that. And the question is, why do we feel sick the way we do when we get the flu? What is happening in our body that causes the sickness symptoms? And the science of that is now coming into view. We have understood that when you get an infection, the immune system has to attack it, and attacking it requires energy, and energy in the form of ATP molecules is something that our body has only so much of. What do we need to do to find the energy to fight the infection? The body needs to stop or throttle down any kind of energy-consuming activities that aren’t completely necessary if we can preserve the energy to fight the infection. And to make a long story short, our bodies, when we get a virus like the flu, have a hard-wired response that causes the symptoms, that causes us to be fatigued. What don't we do? We don't exercise and use it… We don't think very hard and use energy doing that. We don't have a good appetite, so we don't eat a lot, we don't digest. And digestion requires energy. Our body is hard-wired to throttle down behaviors that take energy so that the energy we've got can be preserved to fight the infection. That's something that's well-established not just in humans, but in all animals where it's ever been studied. You can tell when you're tense.
Haylie Pomroy: My background is in agriculture and animal sciences, then biochemistry, then nutrition, and now neuroimmunology. But I always say we nourish our pets better than we nourish most of ourselves. I always say we do not walk out the door and don't feed our dog, yet we walk out the door without breakfast, expect our bodies to heal, think, and perform. In every animal, whether it is in captivity and in the wild, you're right, the body is designed to to gear down in order to conserve. We're making progress in understanding some of the causes, some of the triggers, I guess we would call them for ME/CFS? What are some of the things that we have identified as triggers? I know you mentioned a viral component.
Prof. Anthony Komaroff: Many different kinds of infectious agents, not just viruses, but also some bacteria, some protozoans, like Giardia that infect our guts. A very similar illness to ME/CFS and to Long Covid follows a whole variety of different infections. It's been well-established. And it's even interesting that following certain injuries, noninfectious injuries, like a bad auto accident or like Gulf War Illness, that Dr. Klimas studies, where there's a physical injury to the body in Gulf War illness from toxins they’re exposed to. These injuries to the body trigger a very similar illness to the post-infection illness that we are talking about today. The same reason, in my opinion, the body has to heal that auto accident injury, that Gulf War illness toxic injury, and to heal it, it has to throttle down other energy-consuming activities to preserve the energy necessary to heal the injury.
Haylie Pomroy: It does feel like there are many triggers that all affect our bodies to adapt to those, like a hermetic event that causes our bodies to create dysfunctional homeostasis where we can't quite get traction, either clear a virus, detoxify efficiently. In the GWI population, we find residual toxins decades later, generations later. Toxins that are transmitted or trans-delivered, to the next generation through pregnancy. Do you think there's a genetic component or a predisposition? What is it the HLA with the toxicity, the molds? We're looking at some of those expressions. Do we think that that could be is it the perfect storm or is it the perfect environment during the storm, or is it both?
Prof. Anthony Komaroff: Most human illnesses are a combination of a genetic vulnerability, plus something in the environment that brings out that vulnerability. And I think that's likely to prove true in ME/CFS and Long Covid. I would say there's already pretty strong evidence that there is a genetic component to both Long Covid and ME/CFS. Now, how exactly those genetic differences make a person vulnerable? That we don't even begin to understand yet. But I think genes are a part of it, and the environment, in this case, infectious agents, that like the toxins you're referring to remain in the body and so the immune system sees that the battle actually isn't over. When we get the flu, we feel sick for a week because it takes about a week for the immune system to eradicate the virus. But with ME/CFS and certainly with Long Covid, there's now strong evidence that many people with Long Covid have still some of the Covid virus in their body and their immune system sees that. And the immune system says, hey, the battle's over. We have to keep fighting. And that ongoing battle that the immune system has to fight is what's leading to the ongoing symptoms of the illness.
Haylie Pomroy: During the heat of the pandemic, I felt really fortunate to have so many brilliant scientists around and people just feeling like they could question things and collaborate. And I'll never forget when the 10 -14 days, it'll clear your body. It should clear the body in 10 to 14 days. And I mean, people in the room were literally screaming. Immunologists were going, this virus doesn’t act like that. Maybe for some people, but we're discounting so many people that are going to struggle after this. Did you have that angst, that feeling while all this was going on? And was that happening in your medical space?
Prof. Anthony Komaroff: Yes. I think, most people assumed that this virus, once the immune system got rid of it, would be gone for good. Because other viruses like it, that's often true. RNA viruses are thought to be easier to eradicate from the body than DNA viruses, like herpes virus, for example, which live in the body for the rest of your life once you get infected. People did think the immune system is going to win this battle in short order and then everything should be hunky dory. Reasonable expectation but I think it has unfortunately turned out not to be true.
Haylie Pomroy: You mentioned some things that don't clear the body, some viruses that don't clear the body, and a lot of the conversation around ME/CFS, but also Long Covid, people are talking about specifically a group of viruses. But a lot of times I feel like the conversation goes towards EBV or Epstein-Barr virus. Do you think that that can be also one of the infectious triggers, or is that reactivated when the immune system goes wonky? I'll use that very scientific term. Feel free to use it in your next lecture at Harvard.
Prof. Anthony Komaroff: I do think that in some people, the Epstein-Barr virus, which is one kind of herpes virus, and another virus, too, something called human herpesvirus 6, and possibly other herpes viruses that are living asleep inside the brain in many of us, they get reactivated or reawakened by the Covid or in ME/CFS by whatever the triggering agent was. And once they get reactivated, particularly if they're reactivated in the brain that they now are in another battle in the brain that the immune system has to fight. And again, that's producing the symptoms, according to the theory that I put forward, that's producing the symptoms just like the initial Covid virus was, it's a complex thing. Probably there there isn't a single reason for the illness. And in every person, there are multiple different contributing reasons.
Haylie Pomroy: I know that you are taking this approach of just honoring the complexity of the patient and their personal experience, but also recognizing the complexity of getting the patient back into a healthier state of homeostasis. I know that you're doing that in the patient setting. Please tell me you're also doing this as you're educating the doctors, as you're educating the next generation of practitioners.
Prof. Anthony Komaroff: We're trying to. Very hard. To be honest, doctors throughout the world, and certainly the ones I know in the United States, have been under such pressure for the last several years, in large part because of the pandemic but other things, too, trying to teach people about a new illness like ME/CFS, which is not real new, but it's new to many doctors. Long Covid is brand new, in the last few years, and the fact is we have a lot more answers today than we did 20 years ago but we still don't have enough answers that means we don't have enough stuff to teach doctors. What we don't have yet are definite diagnostic tests or proven FDA-approved treatments. And that's what a practicing doctor wants to know. I'm supposed to take care of patients with this illness, give me the test and I'll be able to do something to help my patients. We're still in the process of developing those things and so we don't have definite tools to give doctors yet.
Haylie Pomroy: It was interesting. Someone said to me one time that we wasted so many years, 10 to 20 years depending. There was just this big waste of not wasted time, but time that could have been used to develop diagnostics, to verify the theory or the hypothesis that this could be what's going on in the patient and to have a protocol for progress for progression of the patient in a positive light, just getting validation that it actually existed. The thing that's a little bit nice is that the gap seems to be shortened with the Long Covid, or at least to some aspect, or because not that the diagnostics are good or the protocol for progression in a positive direction are good yet. But we don't have to delete, we don't have to go through those hoops of this is actually something going on in the body and to believe the patient. Do you see that now that at least we're getting to the forefront of diagnostics and treatment before just debating whether it exists or not?
Prof. Anthony Komaroff: Yeah, I do. Over the 40 years that I've been involved in taking care of patients with ME/CFS and studying it, more recently, studying Long Covid. There's been enormous progress not just in what we know about the underlying abnormalities in the body, but awareness in the doctors' community about both of these illnesses. I think that's good. And unfortunately, we also are learning and we get both illnesses are really big problems. There are at least 3 million people in the United States alone and many millions more around the world with ME/CFS. There are at least 10 million with Long Covid, many would say more than that, just in the US, and 70 million around the world. And that has huge implications for our country, for our economy. There's a few percent of the workforce in the United States right now can't work because of Long Covid.
Haylie Pomroy: I was in Washington, DC with Dr. Peter Marks we were doing a podcast together, interviewing him. He's the head of CBER through the FDA. And it was early in COVID, we were maybe 12 months in at that point. And we were having a conversation about his oncological hematologist. And I have an autoimmune disorder, a blood disorder. I have ITP. I feel like I have good friends that are hematologists all my life growing up. Maybe the really candid conversation about some of the co-morbidities with Covid and he was talking about it's going to be the after. It's going to be the after that we're gonna have to work really hard to get the American population healthy. It's more than just surviving the pandemic. I keep replaying that conversation that I had in my mind. I'm in DC, I'm talking to Dr. Peter Marks and he's saying it's going to be the after. It's going to be getting the patient healthy. I just thought that that was a lot of insight and I know in so much of the work that you've done, you look at the different systems and the different organs and the different pathways and processes. I am very convicted in nutrition. I'm a nutritionist by trade. But are we seeing that we have to strengthen the whole body just as much as attacking a potential pathogen at this point when they're past the original insult?
Prof. Anthony Komaroff: Yes. Although we don't understand very well how to do that, yes, nutrition for sure.
Haylie Pomroy: Say that again, nutrition for sure.
Prof. Anthony Komaroff: In healing almost any illness. And so is regular exercise, but of course, with ME/CFS and Long Covid, that's a problem because part of the illness is an intolerance to, a negative reaction to exercise if it's pushed too hard. You have to be very careful with that. I'm not recommending exercise therapy for either of those two illnesses.
Haylie Pomroy: But it does lend to the fact that if we know that exercise helps the body be healthy and you're dealing with something that exercise comes off the table, that that also is a contributing factor, it makes it harder for the body to get well. The very state of exercising, causing an exacerbation of not just symptoms but inflammatory response, we're talking about a syndrome, that one of our cornerstones of health is pulled away from us. We have to be really creative at putting other things in until we get the body back to a metabolic state where exercise can be employed, but sometimes it just can't. It's like saying to a person with two fractured femurs, it'd be really good if you get on the treadmill every day. If that's not the case, then what do we do? We don't just say, “Sorry, you can't. You have two fractured femurs, no treadmill for you, therefore you can't achieve health.” We have to be creative and resourceful and say, can we come in the back door, the side door, the front door, kick down the door in order to embrace a body where it can create a new homeostasis back towards the progression of health. I'm glad that you validated that for people. My daughter was dealing with some major health-positive EBV, PCR, and also HHV 6. I ended up at UCLA testing positive for every virus you could imagine. It's a crazy situation. But all her friends were like, you just need to get up. And she's a professional rodeo. She is a type A, scholarship student, rides per rodeo, barrel races, landed her at UCLA, and was tanked physically. And everybody said, just get up and ride. Just get up and run. Just get up and exercise. Sometimes she could get enough rest where psychologically she'd force herself to do it and she would pay for it. I mean, just pay for it. I'm lucky I get access to people like you. I have doctors that are trained by people like you. I have Dr. Klimas around in my space, but so many people out there just don't have it. I think Dr. Komaroff, I know we're running out of time but I just want to say that everybody out there that's listening, there is so much value in you validating what they're going through. We appreciate it if our loved ones and our moms and our kids and our parents validate us. But to have somebody in the medical establishment that's had the legacy that you've created validate it for us, I just want to thank you for that gift because it's really huge to all of those people that are struggling out there.
Prof. Anthony Komaroff: Thank you for those kind words, Haylie. I think though we can't rest easy. We need to take action. There there is no doubt that there's much more interest in and resources for studying these illnesses now. But I'd urge people to contact your representatives in Congress, contact the director of the National Institutes of Health, and really urge that there be more support for studying with ME/CFS as part of the Long Covid initiative, as part of the Women's Health Initiative. It's by investing more in figuring out what's going wrong in the body that we're going to have good diagnostic tests and most importantly effective treatments.
Haylie Pomroy: And everybody out there, do not underestimate the power of doing that. We would not see the money going towards our veterans right now for Gulf War Injury (GWI), for Desert Shield, or Desert Storm, if it weren't for very large individuals contacting. Please make sure that you're advocating. Also, where can people get more information about the stuff that we're talking about? Do we have books? Do we have websites? Where can they go to? You will post this everywhere for everybody, but what would be the specific call to action that somebody can do right now to become an empowered patient and an advocate for their loved ones?
Prof. Anthony Komaroff: There are a growing number of organizations, patient-focused organizations like Soul, ME, and Open Medicine Foundation on the West Coast that have websites, have information available. The NIH and CDC have information available. And it's not hard to find lots of information online. The problem is some of it is probably incorrect, but that's the internet. Nevertheless, the organizations I've mentioned are the best places to get online information.
Haylie Pomroy: I know that this podcast is going to have a ton of questions from our community. Please, may I please have you back on? I know that our community would love it very much. I'd love to come see you when I'm in Boston. I travel to Boston quite a bit. Spend some time, sit in your classes. I just want to learn more and I really thank you for teaching not only our next generation but being a huge advocate for your patients and for the reeducation of the physicians that are at the frontline right now of helping their patients. Thank you so much for being here. I really appreciate the conversation and all the work that you've done on behalf of all of us out there.
Prof. Anthony Komaroff: Thank you for your kind words, Haylie. Been a pleasure.
Haylie Pomroy: Talk to you soon.
Prof. Anthony Komaroff: Bye-bye.
Haylie Pomroy: Bye.
