The Dysunderstood Podcast

Transcript: Episode 6: Dr. Rowe

Welcome to the Dysunderstood Podcast.  I'm your host, Ella Eastin.

Today, I am lucky to sit down and have a conversation with Dr. Peter Rowe, a world-renowned physician specializing in the treatment of ME CFS, dysautonomia, and related illnesses now including long COVID. With over 30 years of experience, Dr. Rowe has made significant contributions to the field through his research, patient care, mentoring, teaching, advocacy, and awareness efforts.

Since 1996, Dr. Rowe has served as the director of the Johns Hopkins Children's Center Chronic Fatigue Clinic in Baltimore, Maryland. His groundbreaking research began with the identification of a subset of chronic fatigue patients who also had dysautonomia, leading to an overwhelming response of 5, 000 calls a day.

seeking more information or referrals to his clinic. Continuing his research, he's also explored the relationship between ME CFS, dysautonomia, and hypermobility in patients.  Dr. Rowe's dedication to research, patient care, and advancing knowledge in the field is unmatched. His commitment, compassion, empathy, determination, intelligence, and sense of humor have made him a trusted and highly regarded figure in the medical community.

Today, we are lucky enough to have Dr. Rowe on the Dysunderstood podcast, where he shares his path to becoming a physician, treating this patient population, and things he has hope for in the future.  I hope you enjoy.  Thank you, Dr. Rowe, for joining me today for this conversation. Um, I think that in order for the listeners to get A little bit of background on you.

It would be wonderful if you shared your journey to eventually treating this patient population that we're trying to serve with this podcast. Sure. Well, a pleasure to be with you, Ella. Um,  I'll, I'll go back to, uh, uh, the story, the question that people used to ask all the time on interviews when I was in college, what's your five year plan?

And I didn't have a great five year plan. I wasn't quite sure what I was going to be doing. Um, but, uh, I always thought, you know, it, it didn't work for the former Soviet Union. They used to have these five year plans that never functioned well. So I kind of  stuck with that.  Uh, but I trained in, uh, general pediatrics and, um, did a general pediatric clinical research fellowship that gave me some statistical and epidemiology background.

Uh, and then after I finished my training at Hopkins, I went to Canada where all the pediatricians function, not as primary care physicians, but really as consultants. And we all ran kind of diagnostic problems clinics. I got recruited back to Hopkins to run a similar kind of diagnostic problems clinic in 1991.

So, I would see patients that people were having trouble sorting out. Were they having a spell of fainting or were they having a seizure? Uh, what was this rash from? So, it was really very broad. And my joke is that I was the pediatric version of House without the cane and the oxycodone pro.  So, along the way, um, you know, in that era, in the early 90s, uh, Chronic Fatigue Syndrome, as it was then called, was thought to be largely psychosomatic because people said there's no blood test, the physical exam is normal, it's mostly these upper middle class women, forget about it.

It must be psychosomatic.  So, people didn't know what to do with them, they sent them to my problems clinic, and I was impressed that that received wisdom wasn't correct. These were people who were pale, they wanted to be in school but they couldn't be, uh, and I thought they were sick. Uh, so we, around that time was when tilt table testing was coming into play.

And I thought, you know, they're all describing being lightheaded when they're in positions of quiet, upright posture. So, sitting for a long period of time, standing in line, especially in the hot weather, taking a hot shower.  And, uh, so we decided to put them on a tilt table, which brought them up to a 70 degree angle.

You've had that. Um, and what we were able to do was see that not only did it provoke their usual symptoms of fatigue and lightheadedness,  But at that time, they developed this absolute plummeting of blood pressure that they couldn't have been in control of. So it was, again, very much against the notion that the exam was, was normal.

It was really abnormal and in a way that they could not influence.  When we started treating them for this hypertension.  Uh, a proportion of them, not everybody, uh, but a proportion got so much better that we were convinced this had to be a key factor in the genesis of symptoms.  Yeah, that's amazing. Um, you said the name of the, or what you referred to the clinic as the problem clinic, was that the name of The clinic at Hopkins?

It's called the Diagnostic Referral Clinic.  Okay. And you know what happened was that as we, um, pieced this together and started treating people, we put together, uh, an initial case series of just seven patients and we sent it into the Lancet, which at the time was one of the most prestigious. Um, medical journals with, with the widest, uh, readership and they, um, accepted it because this was a completely novel idea at the time that some problem with autonomic nervous system control could be behind these symptoms.

And that we had treatments that were being used for people with recurrent fainting that would apply to this group.  So in the, in the, um, week after that paper came out,  uh, we, we had. We had done a press conference to announce the findings. And it was a sleepy weekend, holiday weekend, and the reporter in the front row was the guy who's the medical reporter for CNN.

So, uh, this story about tilt testing and chronic fatigue syndrome played every, uh, hour, 20 minutes after the hour for three days. We came in on a Tuesday after the holiday and there were 5, 000 messages on the answering machine with people begging us to do their tilt test, to see them, to greet them. I, people got hold of my pager, they were calling me randomly from across the country.

I had never had that kind of reception to any of our research work before. Um, so it was very clear that there was a huge unmet need. Yeah. We, in the meantime, were doing another study that was, um, that, the first study was just with adolescents. The next one was with a mix of adolescents and, and adults.

And it was meant to be a pilot study to help us figure out how many patients did we need for a randomized trial using Florinib, one of the drugs we'd been using.  And that, uh, study got published about six months later in September of 95.  And we had the same thing happen, five to or more thousand phone calls and requests.

And at that point I thought, this is a really interesting problem to tackle. It's, it's one of these things that really not a lot of people were working on.  Patients were sick. We had a way of making at least some of their symptoms better. And I thought, what else? Should I be working on than this? So I switched out of the diagnostic problems clinic over to start a full blown chronic fatigue clinic.

Wow.  That's um,  a very, uh,  a very good coincidence for all the people that are, you know, living with these diseases. Um, and now orthostatic intolerance is, is very commonly recognized in these patients. So, well, thank you for all of the work that you did to, to bring that to light. Um, and I also have to say that I think that managing patients with these conditions is often something that a lot of providers may shy away from because of the big question marks that surround, um, you know, the overlapping conditions that these patients manage.

Um, And just the varying levels of debilitation that they experience. Can you talk a little bit about, um, your, your experience with managing conditions outside of ME CFS that these patients often present with? Yeah. So a lot of, uh, what we now, the current treatment approach evolved over time by just  listening to what people were telling us.

And so one of the things that we saw early on was that.  Way more people than we expected were reporting a triad of symptoms. of epigastric pain, reflux, and early satiety. So they'd sit down hungry and then five bites in, push the plate away. And what was interesting was that my colleague Kevin Kelly in gastroenterology had described exactly that triad of symptoms in kids who had eosinophilic esophagitis on biopsy.

And where milk protein was a big trigger of those symptoms. So we started looking. at whether milk protein intolerance was a factor. And it turns out that on subsequent research, 31 percent of the kids in our clinic have milk protein intolerance and their quality of life improves when you rigidly exclude milk from the diet.

Some of them have milk and soy or milk and egg, but milk is by far the most common.  And then another thing we noticed in the late 90s was that we were seeing patients who had this diagnosis of Ehlers Danlos Syndrome, which I'd heard about,  you know, wasn't really screening for on a regular basis. So we started becoming more systematic when we sent, uh, we did a Biden score of, for joint hypermobility on everybody, looked for other features of, of Ehlers Danlos Syndrome like stretchy skin.

Um, could they touch their tongue to their nose? Could they flip their eyelids inside out? Um, and, and over the course of a year, we found 12 out of the next hundred patients met criteria for Ehlers Danlos syndrome confirmed by a geneticist, Michael Garrity.  And that was way more than the population prevalence of Ehlers Danlos was supposed to be.

And then we said, well, if we've been missing these guys, what about people with non syndromic  joint hypermobility? So we just did Biden scores on the next.  58 patients and had controls and the cases with CFS were way more likely than the controls to be hypermobile. It was a three and a half fold increased risk of being hypermobile if you met the criteria for CFS.

And since then we found patients that have a variety of neuroanatomic crowding problems with cervical spine stenosis, Chiari malformation, cranioservical instability, and I think we will keep Finding problems, including thoracic outlet syndrome, that give us a toehold into how to treat them.  But I think a big thing that people need to understand is that you just have to dig in and get familiar with these areas.

They're not difficult, but most of us weren't trained in how to manage orthostatic intolerance or EDS. You need to rely on your physical therapist colleagues who do more manually based treatments. Uh, there's a lot of trial and error, but physicians are used to that when they're trying to find something that works for a migraine.

It's very similar to try to find the right medicine for the orthostatic intolerance. But I would say that despite the received wisdom when I started, the physical examination is always abnormal if you know what to look for. So the joint hypermobility, the movement restrictions that you can see on a PT person's exam.

The orthostatic intolerance, they get acrocynotic, their limbs are purple when they stand, uh, in many instances. So there's a lot wrong on the physical exam once you've been taught what to look for. Uh, the other thing is that even though people used to think this was, uh, um, behavioral and that people were trying to get out of going to school or work, I've not met a single person who really wanted to be this sick.

And that's in. Uh, over 30 years of treating this problem, uh, uh, in, in complete, uh, focus.  So you know, I think a good working assumption is that nobody wants this. Nobody is trying to, to fool you, uh, give patients the benefit of the doubt. And sometimes the symptoms are kind of unusual, but they make sense in the end.

So for example, one of the things that makes way more sense now is people used to come in with five and seven or more. medicines that they were sensitive to. And the allergists would typically say, well, nobody's allergic to that many things. And look on these allergy tests. That, that testing is negative.

It turns out they were reporting something that was accurate, but it was being driven by mast cell activation rather than true IgE mediated allergies. So I think,  you know, that it's a rare patient that is really, um, Uh, you know, trying to get secondary gain from the ill.  Yeah. I love what you said about the physical exam is abnormal if you know what to look for and I think I hear from so many patients that um have been willing to open up and share their experiences with me because of this platform and And me sharing my story with the world.

Um, so many of them are told that everything that the doctors have looked into has been normal. Um, and I think it's because of the, the limited, um, education that providers are, are given and throughout their training, um, particularly in medical school. Um, you know, if, if chronic fatigue syndrome and specifically.

Um, MECFS is mentioned, it's mentioned, um, in passing and not necessarily, um, given a ton of thought, um, and there's obviously limitations to the amount of education we can receive, but, but I think that opening the, the door to expanding awareness of different things to look for on a physical exam is, is kind of the first step, um, and so I think that patients really appreciate when.

Um, when something comes up as abnormal, because if they're constantly told that things are looking normal and that they should feel fine and that they have no reason for, um, you know, no objective reason for experiencing the symptoms that they're experiencing, it's a pretty, um, disheartening, um, disheartening experience for sure.

Well, I think it can be traumatizing, right? Like people are told this, there was a There was a quote from a guy who wrote a history about psychosomatic illness in the modern era, and he was basically saying that, um, here in these patients with chronic fatigue syndrome, uh, who continue to feel that they're sick when they've been given medical reassurance to the contrary.

Well, the medical reassurance to, that was there in 1992 wasn't really  It was not informed. So, you know, they, they were almost saying these people are protesting too much, but it was a catch 22 for the patients. If they said, no, I really do feel ill. And it was for a reason that was true. They, they were viewed as, as being, um, you know, malingers.

Um, but yeah, I think we've learned to really hone in on patterns of physical presentations, the hypermobility that, that.  Uh, and I, I would make the other point.  If you've got a psychosomatic illness, the symptoms ought to be kind of random, scattered, you know, all over the physical map. What we find is that we get a monotonously consistent group of, of, uh, symptom descriptions, uh, because most of these, uh, individuals have something related to the autonomic nervous system that's dysregulated.

Plus or minus the milk protein intolerance, plus or minus spinal stenosis or mast cell activation. But the main group of symptoms is almost always the same, whether the patient is from New York or California or Florida or next door to me in Towson,  you know, so that doesn't  accord with a psychosomatic diagnosis for everybody.

all over the map to be coming in saying the same thing.  Yeah. Would you mind describing, um, maybe a typical patient case that you would see, um, maybe on, on first visit? Yeah, so people are usually coming in because they aren't managing with their school or their workload. Typically for us seeing adolescents as new patients, it's that they aren't managing, uh,  to, to get to school every day.

Or they feel exhausted after school, they have to start napping, they don't feel as sharp as they used to feel, their studying is inefficient, they reread the same paragraph over five times and then it's gone. Um, so there's a lot of cognitive dysfunction that's usually new and not related to prior attention deficit disorder, but it looks just like inattentive ADD.

Uh, they can have, um, you know, real problems on hot days because of the orthostatic intolerance. They may, may be, uh, incapable of standing in line without getting symptoms. And one of our screening tests. Uh, and one of the, the jokes that we tell our trainees is that if they can't go to the mall,  uh, there's something organically wrong until proven otherwise.

So our patients cannot tolerate long periods of time in the store. They, they go in for five minutes, then they want to get out because they start feeling unwell.  Um, and so we really screen carefully for things that involve quiet, upright posture, like the standing in line. Being in a chorus or a band, um, standing in line for an amusement park ride, who wants to get out of that?

But these are patients who can't do that and on a hot summer day.  So we look for that, um, and, and then a variety of different pain symptoms like, um, many people have headaches or migraines. They can have joint pain if their, if their ligaments are really, uh, too loose, uh, that's a factor that goes into it.

And we now are, are much more focused on thoracic outlet syndrome, which refers to tightness as the nerves are coming out of the neck and going down through an opening into the arm. But it's an opening that's crowded by vessels,  uh, and the nerves can be, uh, getting compressed, especially when people have their arms overhead.

Uh, if you're anyone but me, uh, the best screening question to ask them is how do you do when you're washing your hair? It takes, it takes me two seconds, but for patients who are, who have their arms elevated shampooing their hair, their arms start getting tired. They might get tingling. They might have to interrupt it, do it in, in, in with different breaks.

You know, it's, um, we, we look for all of these, uh, factors as we're seeing the patients. And I think the other thing we want to make sure they understand is. And, and probably this is just from doing the history in a detailed way. They get the sense that we're really listening to them. We can anticipate symptoms that they didn't realize anyone else knew about.

And, and I think  they understand that we know from our experience what they're going through and that we have a path forward and that this is not something they've made up.  Yeah, and I think that that's  one of the most relieving feelings when I received my diagnosis and knew, you know, this is not something that medicine has found a cure for yet, but at least there are people that.

that my experience is legitimate and that this is truly affecting my life, um, that was really game changing. And so, um, I, I think that the whole community truly appreciates your efforts and, and also being their advocate. Um, and there are a lot of. Uh, medical professionals out there that, that are not as patient, um, and not as open minded to this idea.

And so, um, we're really grateful for all your contributions to this community. Um, and on that note, on, you know, your interactions with patients, what are some things that you would share with either current or future providers? Um, in terms of Um,  things that have been helpful with you, um, managing these patients even in the, the,  in situations where you don't have a curative treatment for them.

A couple of things. One that, that you were talking about was patients. There's a, there's an issue there because the history can take a while to sort through and there, there are a number of symptoms that you've got to unpack. Um, the, the initial history takes time, the exam takes time. And. In modern medicine, you can't, cannot see these patients in 20 million increments or 30 million increments as the initial visit.

So for practitioners who are limited by their practices in terms of the time they can spend, you might have to take several sessions to get all of the, uh, issues nailed down properly.  Correct. Uh, so I think that. That is something that probably is going to have to change systemically in order for patients to be treated adequately for this illness, for long COVID, and for related problems.

We, we need more time up front to really make sure we're getting the story straight and not going off on the wrong path with treatment. We have a number of things that we can try for treatment. We treat as many of the symptoms as we can. We start with the ones that we think are driving the process the most.

Usually that's the orthostatic intolerance. But for some patients, it might be that they've just gotten injured enough that their sort of physical alignment, uh, and, and, uh, neurodynamics are a bit, Uh, so that's where you can rely on a physical therapist colleague. He with the physical therapy, we don't want them doing exercise based PT, we want them doing manual therapy to address these areas of tightness and, and inefficient, uh, muscle movement and nerve movement.

Um, that's been a really helpful part of the way our colleagues have been able to help us treat the patients here. Rick Violin, Scott Highmine, many of the other.

Um, and then we just keep looking for other treatments that might be helpful, uh, including newer things for migraines has been a revolution in migraine therapy that, uh, has been beneficial to our patients with migraines. There are new understandings all the time. So when we have somebody where we're not able to figure out a way forward, we just.

Uh, we have this, I don't think, um, foolish hope. I think it's realistic because of what progress has been made in the last 30 years. is a hope that we'll, we'll find something that will address why they aren't getting better.  Um, so, you know, one of the things that emerged a while ago was when one of our patients was a, a kid who'd missed six years, uh, of her life, really, she had, uh, not been able to attend school after 10th grade.

Um, and we just hadn't made much progress with her, but we, we kept looking at her. And one, the sixth year, the physical therapist thought her neck muscles were sort of asymmetric. He said, take another look at her. And on that day, she had pathological reflexes. She had a Hoffman sign that you elicit by just flicking the end of the middle finger and you're looking for an abnormal flexion of the thumb and the fingers.

That indicates some kind of problem in the cervical spine. So we got an MRI,  and we found that she had a congenitally narrowed cervical spine with one disc that was pressing on the cord. And we weren't sure what, which thing we had to tackle. Her spine surgeon said, let's do the least invasive thing first and, and give her a disc replacement.

Within two months, she was walking dogs. She took a  job in the Colorado Rockies, taking people out on trail rides. She never looked back after that surgery. Nobody really knew to look for that kind of thing. Before, and now we, we've had a number of patients who are refractory in therapy who have this neuroanatomic cause of symptoms.

So You know, that's one of the, the newer observations that has helped inform proper care and we can get to that diagnosis at an earlier point.  Yeah.  And what about things that are less, um, diagnostic and treatment in nature? that you felt like has been, um, helpful in having patients believe that they can move forward?

Um, what are some of the things that either patients have told you that has been helpful or things that you've just observed?  Um, you know, sometimes it's, it's getting used to the pace of this illness that they're, they're often, often you're, you're helping people manage their symptoms. and pace their activities, um, but I think the consistency with which symptoms can be provoked by exceeding their usual activity, that reminds them, yeah, there's something real going on here.

I don't know if that's what you're getting at. We have a few people for whom anxiety is a problem. It's not universal in this population, but it's probably overrepresented,  especially among those who are, uh, who have Ehlers Danlos Syndrome, where it's known to be a, uh, another thing that goes along with that.

Well, If you've got anxiety, we want that treated.  Um, and if people become depressed as a result of the, the illness and the limitations in their life, we want that treated. So  sometimes our behavioral psychologists can be extremely helpful for people with coping. But I want to be really clear that I don't think this is a psychological illness primarily.

That's not what's driving it, but it'd be crazy to think that. If you suddenly weren't able to advance your education or your activities, then you ought to be happy about that. Our patients are not particularly happy that they're sick.  Of course not. To put it in a very sarcastic manner.  Yeah, yeah. Um, but I, I do know that you use, um, a good sense of humor and are, um, incredibly patient with your patients and having the ability to have a little bit of a longer appointment time at initial evaluation is.

Um, something that you have also said is, is critical to really get to the bottom of this. And, um, I think that if more providers were, um, able to spend that time, I do agree that there could be Um, a number of other individuals that would have the ability to, to take care of these patients. Um, but I think that you've done this for so long and, um, you've been able to develop also the interpersonal skills.

I believe that you had them to begin with, but, um, also as, as a really. Good caretaker for these patients in addition to being a doctor. And I think that that's often something that, um, is not emphasized enough. Um, but I think is particularly important in this patient population because we don't have all of the answers.

Um, you know, if, if you were able to walk in and, and get your diagnosis right away and get your prescription and walk out the door and things were fine, it wouldn't necessarily be, be a concern, but I think that, um, with this patient population, it's, it's particularly sensitive and, and, you know, emphasizing how you can help them advance their quality of life while they do manage this, I think is a huge benefit.

Yeah. And I think keeping in mind the fact that they've often been seen by several other people who told them there was nothing wrong. We've got to be really careful with our choice of words so that we're, we're not rushing to any kind of judgment and we're not trying to be judgmental. We're just trying to guide them.

Uh, sometimes we get some resistance, right? Kids don't want to wear compression garments for their orthostatic intolerance. They've given up so much and now they have to look like their grandmother. Well, you know,  We don't always win those battles, but over time people start, you know, realizing, okay, I'd rather feel good than, than look good, uh, the, the reverse of the old Saturday night live routine.

I think that, um, they're at least trying to make compression socks, um, more fun these days and, um, kid friendly, but I, but I do agree. I think you feel like you are already, your life has already changed so much and, and  Some more adjustments that are required to feel better are often uncomfortable, but I do agree that over time you, you realize you would rather participate, um, than, you know, make those changes.

And I think that's also something that, um, is wonderful about mobility aids, um, and is something that. I think oftentimes people that are unfamiliar with these, um, conditions, you know, may look at someone who may look totally healthy using a mobility aid and wonder, you know, if they really need it and what the, what the situation is.

Have you, can you discuss, I guess, the conversations that you've had with patients about mobility aid use and, and how that has, uh, worked out for some of your patients? Yeah. And, and, you know, one of the easiest ones that we can offer people is a handicapped parking placard. to be used and they use it very, um, sensibly only on the days where they just are exhausted.

They don't have the ability to walk the hundred yards through the parking lot. Uh, and, and I warned them, you know, people are going to be very judgmental in their looks and their comments because you don't look like you're bleeding to death. Uh, you know, you don't have a physical sign of the illness.

This is in some ways an invisible illness. And I tell them, just ignore that to the extent that you can. Um, you know, the mobility aids are, are, are needed by a proportion of the more profoundly impaired patients. And, and we use them. Sometimes there's a, a, a difficult choice to make between. You know, getting a wheelchair versus encouraging a bit more activity.

And it's a tough one. You have to individualize that decision. Um, we find that different things like, uh, ring splints that help prevent the fingers from being hyperextended, especially for our Ehlers Danlos patients, those can be really helpful for allowing them to write for longer periods of time or type for longer periods of time without getting joint pain.

Um, so we'll use a lot of these kinds of aids, uh, just to, again, improve function and allow them to participate more in activities.  Yeah.  I think, um,  that, I mean, that definitely goes back to quality of life and  I remember one time you said we, We encourage our patients to try out, um, new techniques to manage their symptoms, because once they're able to do more, they'll be able to do more.

And, um, can you talk about what that means and, and the progression of, you know, working towards increasing, um, daily capacity? Yeah. And, and there's a big. Um, you know, the, the patients often feel like the old message was, uh, when it, again, from the people who thought this was a psychologically driven illness, that all you had to do was get these lazy bums moving and, and then they'd be fine, that exercise was the answer to all.

And that was clearly wrong. It couldn't possibly overcome the orthostatic intolerance or some of the other problems. And so when we talk about improving activity, we're trying to. Really emphasize that the things we do, like the PT, the management of their circulation can really help with that. And then once they're able to, uh, perform the physical activity, that can help build blood volume and strengthen muscles and improve health.

Because everybody knows that physical activity is good for us as a species, but I don't want people beating over the head that that's the only way to get better. I'll give you a really nice example. One of the, uh, students.  Uh, that we worked with by the fourth or fifth year of her illness, her resting heart rate when she would come into the clinic was between about 105 and 140, so really, really excessive.

Um, and so she would try to exercise following the advice that's been printed, but two minutes into going out to the elliptical, her heart rate would shoot up to 180 and that would provoke a two day migraine. And I said to her, look, you've got to stop trying to exercise until we get better control of your circulation.

Along came Ivabradine. Here's an example of what we were talking about a little bit before where we didn't have Iva Ivabradine as a drug in the armamentarium until a few years ago. It was introduced as a drug to treat tachycardia in people with congestive heart failure. It also works really well for people with pots and syncope and and inappropriate sinus tachycardia.

So as we put her on this, and each time we raised her the dose, her resting heart rate came down.  So, on 10 milligrams twice a day, she had a resting heart rate not of 105, but of 72. She could go 30 minutes or 40 minutes on the elliptical and her heart rate would only go to the 130s. No migraine.  Wow. Um, she is, was active as an occupational therapist on the proning unit.

Uh, training team for COVID in Phoenix. Um, so she was a tough worker during the early part of the pandemic. She sent me a postcard that she'd gone up to Sedona and had done a 10 mile hike, which she could never have done before of Aberdeen.  So if you think that all you need to do is get fit, um, uh, she's an example of, of where that, that.

idea falls apart because every summer her insurance company makes us appeal to get authorization again for the Ivaverdin. She's off the medicine for two weeks, even though she's fit enough to do a 10 mile hike, she gets all of her symptoms back, fatigue, lightheadedness, cognitive fogginess, and they only improve once the Ivaverdin comes back on.

So yeah, the exercise is what we want her to be able to do, but it's not the way for her to get there. It's just, she needs her  medication regimen controlling things. She, I'm sure, gets a little bit of a benefit from being fit, but so would we all.  Yeah. Yeah. And I love that distinction. It's like, it's not the means to the end.

It's the goal and, um, making sure that patients are, are being encouraged to, you know, listen to their body and, um, and understand the limits. And I remember going through the process of. You know, figuring out exactly what would trigger my post exertional malaise and what I was able to tolerate and for how long.

And it is quite a process. Um, and especially in patients that this happens pretty quickly if it's triggered by a viral illness or, um, or something else where symptoms come on pretty rapidly. It's, you're going from being a fully functional person to, um, losing a lot of your capacity overnight, which is really scary.

But I think, you know, you're, you're Uh, experiences similar to that of other athletes with this where, you know, the amount of activity they can now do when they're sick before we get them well controlled doesn't feel like a workout. They know what a real workout is. And so they sort of beat themselves up a bit.

I don't remember that you did that, but I think some people feel like. They, they, this isn't, this isn't what I should, I should be, Oh, I did. And by pushing harder, you just provoke more symptoms. So it requires a lot of learning about disciplined advancement of, of the exercise regimen.  Um, yeah. Yeah. And, and, and  I, I would make one other comment because patients were being blamed.

for not getting themselves better with exercise by the behaviorally oriented folks in the past.  Um, they came to think that, all right, uh, if, if enough exercise will provoke PDM, I shouldn't do any activity.  So there's been, I think, a, a, Uh, misinterpretation in the patient advocacy community that we sometimes hear about that any activity, any increase in exercise is to be avoided.

I think the point is that we need to control the symptoms so that they can advance exercise and not be fearful of it.  Yeah.  Yeah. And I think understanding that there is an important balance between like,  Doing enough to kind of figure out those limits versus overdoing it when you feel, um, you know, well on, on a given day.

And, and that definitely takes, takes time to, um, takes time to adjust to. Yeah. So I think everybody gets a bit better at that as they get a bit older and they're no longer young adolescents. You know, I think we all get a bit wise.  Yeah, and with all of your experience, you've been treating patients with ME CFS for 30 years, you said.

So, can you talk about how you've continued to, um, stay motivated and continue to  Um, feel inspired to treat this patient population, whether that has to be with the advancement that you've seen or your experience with these patients, what, what is it that keeps you so, um, motivated to continue to find answers for this population?

I think it's, um,  probably two things, uh, Ella. One is we are in this profession to try and help people get better. Doesn't mean that we get to always pick which group of patients, but I think  the fact that we started in this, we discovered some things that were really critical that have been enduring advances.

There's, there's a bit of pride that comes in there about this process, but also a recognition that we haven't helped everybody, that there's more work to be done in there. things that we don't understand. Um,  and so I think our patients are also patient with us. If we don't have all the answers, they know that nobody has them.

And, and, you know, we'll just keep working on that together. Um, it's been a really gratifying process though, to see people getting better and going on and with their education or their, or their, the work that they want to do.  Um, and we've been very fortunate with the philanthropic support that we, we've garnered, uh, to be able to take enough time to really dig in.

Um, measure things carefully, be able to describe that in the papers for others to learn from. Um, and so there's, I think the constant process of discovery,  you know, and your curiosity about what's going on is a driver for many physicians. And the, the ideas that we are introducing about orthostatic intolerance were not well accepted by the ME CFS community in the beginning.

Uh, and so I remember standing up at a conference in San Francisco and giving a plenary talk. Uh, I'd been invited to give a plenary talk on our findings and was surprised to get to the conference to realize that they, they'd, uh, scheduled a guy to come on after me as a rebuttal talk.  Um, none of the other plenary speakers had a rebuttal speaker.

And I thought, well, why wasn't I told about this? That seems kind of unprofessional. Anyway, this guy got up and he was a practitioner from the community in Oklahoma somewhere.  And an infectious disease practitioner at that. And he said, we've been doing some of this tilt testing that they do at Hopkins and we're not finding the same things.

I thought, well, okay, probably because you don't know what you're doing and you're not, you don't have the best electrophysiology guy in the country working with you, which was Hugh Calkins at the time. But, you know, there was a lot of resistance and thankfully that resistance has been overcome by the mountain of data showing that there is orthostatic intolerance.

It's objective. You can't control the amount of blood flow that goes to your brain.  Uh, and our patients have a 26 percent reduction in brain blood flow when they're up on the tilt test. Healthy people have a 7 percent reduction. That's not a small difference.  No. The other one that was interesting was when we first submitted the paper, uh, uh, to a journal,  uh, on the connection with Ehlers Danlos syndrome, orthostatic intolerance, and chronic fatigue syndrome, uh, the reviewer did not have a very kind comment.

He said, uh, this is yet another piece of propaganda from the Johns Hopkins group that will lead to, uh, inappropriate labeling of patients. Inappropriate testing and, uh, dangerous treatment,  uh, so they rejected that paper. We got it published in the Journal of Pediatrics, which is pretty nice to get published in anyway, but there was a lot of resistance along the way, and so it's been kind of nice to see that these observations have been, um, confirmed by many, many other groups, and that's really the advance of science.

You put out a hypothesis, if you can't, if you can't confirm it, or if others can't confirm it, it's going to fall away. And these ideas about orthostatic intolerance, about joint hypermobility, I think are well established now and, and that's something I'm really pleased about over time. Yeah. And you'd think the advocacy groups would be grateful to find some things wrong.

We're always looking for what's wrong. Yeah, no, and the, uh, the, the, the Solve MECFS initiative, it was called the CFIDS Association of America in the beginning. Okay. They were instrumental in supporting us from the very beginning. We had. One time when we had a gap between grants and I was about to lose my research team and they came forward with, um, uh, some, some gap grant funding, uh, that was really helpful.

But that's a, that's an organization that's produced really good, uh, talks, advocacy and, and, uh, lobbying to get these conditions better understood. They've been very. Good about bringing in long COVID and, and the other, other, uh, chronic disease groups, anything that's triggered by infection. I think they've been, uh, very willing to kind of unite forces, uh, so that we get better results and better funding.

Yeah, I think that's been one positive from the pandemic is this, uh, increase in awareness around post viral conditions and, um, something that you're going to be discussing at your upcoming conference, I'm guessing, too. Yeah, yeah, I think, I think that's been the silver lining of the COVID pandemic is that Because COVID is such a horrific disease and people have had their own personal experiences with it, lost, uh, loved ones and family members and friends, they then realize, okay, something that can kill all these people also can probably very legitimately cause these long, uh, illnesses.

And because, uh, long COVID is looking very much like, if not identical to ME CFS, it's putting a more favorable light on people with pre pandemic, uh, ME CFS and other post infectious illnesses like long Lyme as it's now being called.  Mm hmm. Yeah. I think also with the number of scientists now attracted to the long COVID space.

We're all hopeful that any observations made for long COVID will also apply to these other chronic illnesses. So I think it's a time to be hopeful. The funding for these initiatives has gone way up. Uh, across the world. So we're not just reliant on NIH funding, but from all countries where the, where the pandemic has affected people.

So it's really a global effort and we'll need it because of the numbers of people involved and now disabled with these illnesses.  Yeah. And I think that was a huge, uh, area of  Um, improvement for decades, as you've seen, is just the amount of funding that's gone to, um, research and address these conditions.

Um, so hopefully that, that increase is going to make some really great strides here in the next couple of years. And, and I'm hopeful as well, and so thanks for providing that, that hope to all of us for so long. And now, hopefully you'll get to Retire one day and see all of this kind of, um, you know, continue to rise after all of the work that you've put in.

Yeah. We'll see how happy my wife is to have me at home full time.  I love it. When she's doing the New York Times crossword puzzle on Sunday morning, really focused in and I keep peppering her with questions or things I've read in the rest of the paper. She'll look up and say,  don't you have something to do with the office?

That's that's code for stop bothering.  Yeah, you're going to have to go out to the garden a lot.  And I, I suppose that's part of what keeps me rolling. I've got a really good support team around me.  Uh, you know, um, it took a long time to build a clinical group with a nurse. Now we've got two physicians and a research assistant, uh, all built on philanthropic support.

So that's. That makes it, it's, it's fun when there are others to, to discuss with and compare notes with. What would you do here? Um, so a team is really important to that process as well as a home team of people who, uh, support my work,  uh, within the family.  Yeah,  well, we are all collectively so grateful for all the work that you've done, um, and I'm also so grateful for everything that you've done to help me, um, and also just shed light on these conditions in addition to making scientific advancements and also encouraging other providers to keep an open mind about this patient population and one of the things that I hope that, um, You know, future providers that are listening to this episode here, um, is, you know, they're, they're able to learn that these conditions are not psychosomatic.

They have objective findings that are wrong with these patients. That quality of life is. Um, something that can be changed and, um, having longitudinal relationships with these patients, um, is incredibly gratifying. Um, so thank you so much for joining me and, um, thank you again for, for all the work that you've been doing to, um, help so many of us in this community.

Or you, you as well. Keep on keepin on.  Thank you. All right.  Thanks for listening and being a part of the Dysunderstood community. You can find all things Dysunderstood at our website, Dysunderstood. com or at Dysunderstood on Instagram and TikTok. Have a great week.