Episode 124: Post-Exertional Malaise: In Depth with Dr. Melanie Hoppers
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Post-exertional malaise (PEM) is often misunderstood and dismissed as mere fatigue, but it’s a much more complex and serious condition.
I’m joined by Dr. Melanie Hoppers, a dedicated physician from the Bateman Horne Center of Excellence. We discuss the symptoms and severe impact PEM can have on those dealing with conditions like ME/CFS and long COVID.
Dr. Hoppers shares her personal journey, motivated by her daughter’s battle with chronic illness. She provides invaluable insights on identifying and managing PEM, offering practical advice on pacing and the effects of emotional and cognitive stress.
Learn how to advocate for yourself, understand your body’s signals, and find hope in the midst of chronic illness.
Tune in to the Fast Metabolism Matters Podcast – Post-Exertional Malaise: In Depth with Dr. Melanie Hoppers.
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Dr. Melanie Hoppers is a practicing physician at the Bateman Horne Center of Excellence, specializing in internal medicine and pediatrics. She earned her Bachelor of Science degree in Biology from Union University in Jackson, TN, and her medical degree from the University of Tennessee College of Medicine. Dr. Hoppers completed a dual residency in Pediatrics and Internal Medicine, equipping her with extensive expertise in managing complex medical conditions, including ME/CFS and fibromyalgia. At the Bateman Horne Center, she contributes to both clinical care and research aimed at improving patient outcomes.
LinkedIn: https://www.linkedin.com/in/melanie-hoppers-939a00279/
Facebook: https://www.facebook.com/melanie.hoppers
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https://batemanhornecenter.org/providers/mecfs/diagnosing-managing/rehab-professionals/
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Transcript Below:
Haylie Pomroy: Today, we're going to talk about a subject that I think has a lot of weird nomenclature around it. We're going to talk about post-exertional malaise. Sometimes people think of that as just fatigue. But I'm here to tell you that it's a whole lot more than that. What did I do? I pulled a very special doctor in with us today. It's Dr. Melanie Hoppers. Dr. Hoppers is one of the physicians and one of the practitioners at the Bateman Horn Center of Excellence. There they provide clinical care, they provide research, and education that specializes in the care of post-infectious disease. This covers patients that have ME/CFS, we're seeing things like Long Covid, Pandas, POTS, all of those things that fall into what is going on in the body. We are super lucky to have Dr. Melanie Hoppers here with us today. Dr. Hoppers, thank you so much for taking the time to talk to our community. I really appreciate it.
Dr. Melanie Hoppers: Thank you for allowing me to be here. I'm so happy to be here.
Haylie Pomroy: You are located in Tennessee, is that right?
Dr. Melanie Hoppers: The Bateman Horn Center is in Utah. They’re in Utah, and I am in Tennessee. I do see some patients here in Tennessee and I also see patients in Utah. I'm a product of their environment. I guess you could say they are, like you said, they provide education and they also provide diagnosis and see patients. That's how I got to know them in trying to research and learn.
Haylie Pomroy: Tell me, how did you get involved? Was it family, was it self, personally?
Dr. Melanie Hoppers: What happened about 9 years ago, my daughter had mono and she never recovered and essentially she developed ME/CFS, at that time I did not know what ME/CFS was. I had been to medical school, never was there a mention of this illness. There would be occasional mention of chronic fatigue syndrome with the oral and the crossing of the arms now we got to go see this person, but that was the only experience I'd had with it. I'd had patients, now in retrospect, I'm sure that had it. And although I did not roll my eyes, I was unable to help them. I wasn't very efficient in helping them. But anyway, with my daughter, I tried to find people that would help, tried to find answers, and I didn't locally, but I did find on the internet one night, about 3:00 am when you're up trying to figure things out and your anxiety hits its peak. I was looking and searching and I found this website, the Bateman Horn Center and I was like, wait! No, I take that back. It was on the CDC website.
Haylie Pomroy: Dr. Hoppers, I just want to jump in for our community and tell me how you’ve set humility. Just that you just shared with our community, it's okay to Google things and to look up a little bit on behalf of yourself. We have community members say they get told by their doctors all the time. What, did you Google that? Yes, I did, as a matter of fact. People feel lost and people feel hopeless. No, but I just want to punctuate. You only talk about nothing else. The fact that you have the medical background that you have, the education you have, obviously the passion as a mom and a parent, and that you're feeling lost and hopeless. I hope that our community identifies that it's okay to feel that way, and to be an advocate for yourself and to Google and to look and to research and to talk and to listen to podcasts is what you have to do right now. It's just what you have to do.
Dr. Melanie Hoppers: To be honest, primary care can't keep up with all of this. When I did find myalgic encephalomyelitis and when I did learn about it, I did speak to her pediatric neurologist and said, “Hey, could it be this?” Read the note later which said, “Mom thinks she may have myalgic encephalomyelitis.” Anyway, I found the CDC website had mentioned Dr. Lucinda Bateman and talked about this illness I was like that's it right there. I threw out an email, thinking they'd never answer me. You call your doctor and they don't answer you.
Haylie Pomroy: Says from an amazing doctor's mouth. It's true.
Dr. Melanie Hoppers: I experienced it, and I'm so disappointed in our healthcare system. But anyway, I reached out, and in a few days, I got an answerback. She spoke with me and talked to me about the NASA lean tests that I had never heard of.
Haylie Pomroy: Tell me that test again.
Dr. Melanie Hoppers: The NASA lean test is an orthostatic intolerance test and the doctors will call it a passive stand test. But what you're doing is you're seeing what happens when you stand up. Does anything bad happen? Do you get palpitations? Does your heart race? Do you have blood pooling? Do you have a problem? The worst lean test I've ever seen was the one I did on my daughter.
Haylie Pomroy: I'm dealing with it right now with my kids so I feel it in my heart.
Dr. Melanie Hoppers: It's sickening and I didn't even understand, at the time, I knew it was bad, but I didn't even understand completely how bad it was because, again, I'd done orthostatics before, you lay down, you stand them up. Okay. One minute. There you go, that's your number. It's not something we talked about. I didn't diagnose POTS in my practice. That wasn't something I did. I said, this is really awesome to have this information, but I don't know what to do with it, so can you help?
Haylie Pomroy: At the time you were living in Tennessee?
Dr. Melanie Hoppers: Yes.
Haylie Pomroy: Did you travel to the clinic in Utah?
Dr. Melanie Hoppers: I did, I ultimately went there. And the thing that really amazed me was the way they shared their information. So many times with again, guys sound like I'm just bashing healthcare and I really don't mean it that way because I think the majority of people have good hearts, but we don't share things. We want to keep our little forums to ourselves. Oh my goodness, you're going to steal my intellectual property. You ask a stupid question. But anyway, she just shared everything with me. Here's what we do, here's how we do it. And when I was there, I remember thinking, I've never been in a clinic like this before. This is amazing. And our clinic here, it's an urgent care, it's a primary care. And when we started our clinic, our whole point was we want it to be different for the patient. We want to have an amazing patient experience. We have a movie theater, a 30-person movie theater in our waiting room. If you have to wait, you can watch something on TV. It's not great for ME/CFS patients, all that stimulation. But for our urgent care patients, that was our goal. But when I went there, this was something just on a whole different level. And they took the time. Not only did the providers take the time, but the front desk, the front desk is educated about this illness.
Haylie Pomroy: They are first eyes. They're the first set of eyes that are laid on that patient. And oftentimes by the time a patient gets back to the doctor, they can be nervous, they can be exhausted, they can be frustrated if they have to wait. God bless them and I don't blame them. But that front desk or in our community, it's our community support team that talks to all the people online, all of our online community, they're getting that first glance at that person. What kind of symptoms was your daughter having?
Dr. Melanie Hoppers: Just incredible amounts of fatigue. And at first when this first started and I didn't understand. “Baby, you just got to get up, you got to school. We're just going to have to do this.” And then you go to Disney World and she says I don't want to go to the park. I don't want to do anything.
Haylie Pomroy: It's not just the statistics class that she's like, I'm trying to get out of some math class or some sort of work or something like that.
Dr. Melanie Hoppers: And it's Saturday and it’s Sunday.
Haylie Pomroy: They had to bypass joy. My daughter and her riding.
Dr. Melanie Hoppers: They missed so much. And so just severe fatigue and sick a lot. In retrospect, I realize now so much of that was a post-exertional malaise. The words around this are difficult. The definition is even more difficult, the official definition. I know people spend a lot of time and it's great, but it's hard to define. It's so variable but basically what it is is you have a clinical you have a clinical picture, you're sick, whether you're mild or moderate or severe. But when you have post-exertional malaise, you’re worse, everything is worse. Whatever symptoms you have, they're worse. You may develop new symptoms and then you can't recover as well as you would normally do. And this is the result of some sort of exertion.
Haylie Pomroy: Let me take it back just a second. What we're saying is we have a particular symptom profile and then with exertion, the profile is exacerbated? It intensifies it magnifies that. Is the exertion always doing a 5K, or running a marathon? What kind of things would fall under exertional?
Dr. Melanie Hoppers: Good question. First of all the categories, it can be physical, it can be cognitive, just thinking, it can be social, it can be emotional, it can be environmental. Now what degree of exertion could change from person to person and their level of illness can also change for the individual. For some people sometimes we screen for it and say a college student or high school student is what happens after you take a test? Or a more severe patient, it may be what happens if you read a couple of pages in a book. It can be emotional. It can be, I graduated and I was happy. And that's particularly cruel, isn't it? Certainly, can get mad, but it's also if you're happy.
Haylie Pomroy: It's almost like a hermetic event, any event that the body has to adapt to, whether positive or negative. The funny thing, we're talking about our girls, the funny thing about my daughter was we've always considered her like she's the strength to get over any petri dish. In Disneyland, when she was a kid, I turned around she was literally licking the handrails on the ride at Disneyland. Everybody in the house got sick, she didn't get sick. She can lick lead, anything. She was so hearty. She became this canary in the coal mine. The environmental toxins that are, unfortunately, we're exposed to in our air and our water, like a new mattress. Anything environmental toxicity, she would just tank on us. She would just tank and be exhausted and fatigued. I appreciate you bringing all these categories. It could be social, emotional environmental, physical for sure, and also cognitive. Lights and sounds. She stopped listening to music. Just things that we were observing. Just come downstairs and make me turn off my Taylor Swift. Turn it off!
Dr. Melanie Hoppers: People sometimes mistake it for depression, and it's not that they don't want to listen to music. They can't listen to music. And it can be a combination of those things. It can be, again, for some people that are particularly severe, it may be simply just walking downstairs. I had a patient, who was mostly homebound a little bit between homebound and bedbound. One day got tired of it. He was like, nope, he's 15, I'm not doing this anymore. And he got on a bike, a stationary bike. And he did it for 15 minutes and has never recovered. Why is it important? Why is PEM important? So 1…
Haylie Pomroy: Let me take you back just a second. Post-exertional malaise (PEM). I have an autoimmune disorder, been in that space for a long time with my own self personally, and then it all shifted into neuroinflammatory disorders when I started having kids. But this one has the weirdest nomenclature. People just say you're tired, get up and exercise. But post-exertional malaise (PEM), you're saying the unique thing about it is it can cause not just a trigger of symptoms, but do we see in any light?
Dr. Melanie Hoppers: A lot of things. 1. When you have it, it makes your symptoms worse and it is difficult to recover from. But in addition, a couple of things about it, one is that it can be delayed. You can do your thing and then it's not maybe 12 hours a day, 2 or 3 days before you have your symptoms. That can be frustrating and also hard for people to put two and two together sometimes. And they'll keep doing this over and over again. And the other bitter pill to swallow about this is every time you do it, you're damaging. You're damaging your functional status. If you do it once and you recover, 3 or 4 months later, you do it again, that's not great, but maybe not so bad. But if you do it repeatedly, you're going to end up with a lower baseline. That's why it's just truly very important to get this message out so people understand fighting through it is not going to help. It's only going to make it worse.
Haylie Pomroy: I love you saying that fighting through it. We're going to talk about some of the things that we can do to pace ourselves or so we can do preventative, not get into that space where we're doing damage or make our resilience less. It reminds me, though, a lot of the conversations that, again, in the autoimmune space, there's such a cycle here in the autoimmune space, we a lot of times in my community, we talk about fear of the flare. You're off, you're doing something fun. I went on vacation with my family. In the back of my head was for so many years I was going, “Am I going to pay for this?” Am I going to tank? Am I going to pay for this? What's going to happen? What are going to be the consequences? I was called it fear the flare with individuals that have these long chronic post-viral or post-infectious disorders or syndromes. A lot of times they get in that cycle where they don't know, I don't want to be afraid to do anything, but I also want to listen to my body and know what I can do. First, I want to start with self-identification. How can we as the patient, how can you as your daughter, me and my daughter, identify when to do and when to back off a little bit? How do we identify that? And then I want you to take your momma hat off, put your doctor hat on and say, how can the doctor help the patient identify what that space is?
Dr. Melanie Hoppers: That's a good question and it's hard and I'll try to be realistic because sometimes, there are these ideal ways to do things, but everyone can't do those things. People have to live, they have to have an income, they have to work or what have you. So how can you identify it? Well, there's a couple of different ways. One is just to start to try to recognize, I tell people, to think back when they've had post-exertional malaise or unfortunately, if you have it again, pay attention when you do, and make mental notes. How did you feel? Do you remember how you felt the day before? Do you remember how you felt early in the process? How did you feel? Did you slow down? What did you do?
Haylie Pomroy: Do you have your patients calendar or journal on a calendar?
Dr. Melanie Hoppers: Yes if they can. And there's something that I read recently that I thought was a really good thing. You get your average resting heart rate. And the way to do that is in the morning before you get out of bed, check your resting heart rate, and do that on seven days and get an average. Of course, it needs to be seven good days. You don't want to do it on a day you're already in post-exertional malaise, if you're already feeling bad, I wouldn't I wouldn't do it.
Haylie Pomroy: It's when you're still laying in bed, not when you've gotten up, gone to the bathroom, brushed your teeth, or nothing.
Dr. Melanie Hoppers: When you wake up, get your average heart rate.
Haylie Pomroy: Is there an ideal range?
Dr. Melanie Hoppers: Not necessarily. It's funny, I find a lot of my patients are fairly low normal. Anyway, you get your average number, and then going forward if you're up to 10 above or 10 below, that's a signal right there, that this may be the day for you to back off. It's numbers and I like numbers because sometimes I’m just like a bull in a China shop and off I go and I don't have post-exertional malaise. But even with my daughter when she was younger, I would misjudge. I would think everything's good. This is a good day. And then on the way home, I'd be like, oh no, I've messed up. I’d let her talk me into, let's do one more thing. I needed parameters. The other thing you can do is set timers, especially with a child, I can't tell you how she's feeling unless she tells me she doesn't always feel like it. So I would set timers and I would know, each person is different, but you can get a feel for what you can and can't do with time. Like I know that an hour is going to be too long, then I'll set a timer for 30 minutes and it is a hard stop at 30, and I'll do a 25-minute timer. Okay, we have five more minutes, the decision has already been made, we're out. And that's what we would do and that was very helpful for us.
Haylie Pomroy: You would do more like bursts of activity and then periods of rest?
Dr. Melanie Hoppers: Periods of rest. And another thing, I'm going all over the place. I'm trying to make it organized. Another thing, when you do rest, if you can get your feet up because so many people have orthostatic intolerance, they aren't getting blood flow to the brain. If you can get your feet up, you can help.
Haylie Pomroy: On the feet up, please. It's above the heart, correct?
Dr. Melanie Hoppers: Yes. Lay on the ground with your feet on the wall at a 90-degree angle or another thing you can do is, the thing about this illness too, is it's very expensive.
Haylie Pomroy: I'm going to stop you one quick second. When you say feet up, how long should I shoot for with people? 5 minutes? 10 minutes?
Dr. Melanie Hoppers: It’s 30 minutes if you can.
Haylie Pomroy: It's good for us to have goals. I think the biggest thing, the misnomer is that so many people and we're seeing it with long Covid, definitely see it in ME/CFS, with Gulf War injury is a lot these people are Type-A. A lot of people are super active. And so if we can give them a mission and a goal, they want to feel better. This is fabulous. I didn't mean to interrupt, but you were saying that this can be expensive.
Dr. Melanie Hoppers: It’s an expensive illness, so another suggestion is if you can put your feet up or there are compression boots that you can buy and you can get them on eBay if you want to get a little cheaper version. They'll squeeze and it's a rhythmic thing and it will help get that blood flow back up. You can do that as well. I have patients that do that in the evening.
Haylie Pomroy: How many times a day? In the evening better?
Dr. Melanie Hoppers: Can do it three times a day. Especially if you're having a bad day or you've exerted yourself and you're thinking, maybe I did a little too much, you can do that 2 or 3 times. For the person who's listening, who works, and they go, “What am I going to do that three times a day?” I get that. It depends on what your situation is. But if you're, if you do work, maybe when you come home and maybe again at bedtime. Maybe 30 minutes is too long because you have kids. Maybe it's 15 minutes, but do what you can.
Haylie Pomroy: I appreciate you giving the seminar and review it for everybody. But like even when you talked about the 25-minute, 30-minute hard stop, one of the things with people that are working is sometimes if you can just, maybe you're sitting in front of the computer or you're on phones or whatever, that 30-minute mark, you can go in and put your hands in cold water or do something that's going to change the rhythm of what your body's currently doing, something that can give your body a break. I love these active things. When we measure the resting heart rate, did you say average it over seven days?
Dr. Melanie Hoppers: Just get an average number.
Haylie Pomroy: And then when you're 10 above or 10 below that's a day to maybe, one, support yourself even more or back it down a little bit. Would that be right?
Dr. Melanie Hoppers: That heart rate is taken again at rest. If you wake up and you're 10 above or 10 below or more, then that's a warning sign. But then also you can use your heart rate for activity. I've read 15 beats per minute above your resting heart rate. If you can, okay. But I will tell you that that's a little bit restrictive. And again, it depends on what place you're in. If you are severely ill, you can't go anywhere or do anything, or really try to hone in on this, then that might be a good number. But if you have to go and do some things and work or what have you, then you might go with 120, 130, and then note: that's my number. Set an alarm on your watch or your Fitbit if you have one, and know that at that number I need to sit down and rest if at all possible. And then as you are doing that start to pay attention. Oh, wait, my watch went off, here's how I feel. Oh, wait, I feel a little short of breath. I feel a little bit lightheaded. I'm not bad enough to really stop because I am Type-A, or whatever. I'm going to keep going. But now you start to pay attention to those things, and you don't necessarily have to have a watch on or whatever, but you can start to pay attention. And note, before I quite get to that point, this is how I feel I'm going to pull back.
Haylie Pomroy: With post-exertional malaise, the capacity to rehabilitate that as part of a person making progress towards getting better? Do we see that as something that can also resolve itself in that process?
Dr. Melanie Hoppers: If a person stays out of the post-exertional malaise, there have been a couple of studies that show that their overall clinical status may improve. I'm not going to say if they're going to get well, that's not the case, but the overall status improves. On the other hand, if you repeatedly are in post-exertional malaise, you are going to see a worsening. It just does the opposite.
Haylie Pomroy: It's important to manage and condition this. It's important to listen.
Dr. Melanie Hoppers: You can't condition yourself as far as graded exercise. That's not something I would suggest. Not like conditioning in the traditional… When people think… That means if I just try harder, 5 minutes, and push really hard. I don't mean that.
Haylie Pomroy: I'm glad you said that because I think so many people, we had a really good friend, a really brilliant friend of ours that said, why don't you just have her start at 10 minutes a day for the first week, at a minute every week, until you get to do it. And then add weights. But on those down days, if you do push through them, your next down is even more. How would you classify as a doctor just a traditional fatigue? I've heard a lot of people say, being tired that rest mediates, being able to identify a cause for your fatigue, for your tiredness, a person that's not dealing with chronic illness, how can a person dealing with chronic illness describe the difference between just a normal everyday fatigue and post-exertional malaise?
Dr. Melanie Hoppers: I'm going to get a little science-y. They did this study, I'm sorry I don't know the names of the authors. I can maybe provide that later for you. But there was a study that you see pet testing again, cardiopulmonary exercise testing (CPET). This is a well-researched form of testing that assesses the functional capacity of a person, how much energy they can expand, that kind of thing. They did a 24-hour CPET test. It's a you get on a bike, usually sometimes a treadmill. They can use seven minutes of graded exercise, and measure the metabolic components, muscular, cardiac, and pulmonary components for energy expenditure. They did a study, they took I think it was 22 patients who were normal but sedentary, and they had 25 patients that had ME/CFS at 24 hours they looked to see who had recovered. 85% of the healthy sedentary controls had recovered. 0 patients of the ME/CFS had recovered. At 48 hours, all of the healthy controls had recovered and 1 of the ME/CFS patients had recovered. Stark difference. The problem is they cannot create energy. It doesn't matter how hard you try. You can't squeeze blood out of a turnip. That's the best way I know to put it. You can't. You can beat your head against the wall all day. It's not going to happen.
Haylie Pomroy: I just know that there are people out there right now that are listening, that are thinking, I hate to even use the word medical gaslighting, but it's being used a lot right now, but they're made to believe that they have a lack of desire, or a lack of effort, or a lack of willpower or a lack of cognition. When I first came into the institute and I could see the VO2 machines, the machines, the bikes, the testing, the oxidation, oxygenation, the testing of the ATP, secretion of blood labs that we run, just the science, the hard science sits behind something's going on from an inflammatory and metabolically in these bodies. I knew it and I believed it in my mind and with a little bit that I had been exposed to. But there's hard science about this.
Dr. Melanie Hoppers: That's what's baffling to me. How many times I say it, I feel like I'm preaching all the time this message. I tell everyone, I tell every physician, every health care provider that I'm around, here's what's happening, here's what's going on. And I try to give them a little bit of the science because I think maybe that'll make a difference. Maybe that will make them understand. Also, I want the patient to understand, here's what's happening. What we do, we start gaslighting ourselves.
Haylie Pomroy: We start gaslighting ourselves.
Dr. Melanie Hoppers: I gaslight myself as a provider, I'll be like, am I not encouraging them enough? Or and I'm like, wait a second…
Haylie Pomroy: I know better.
Dr. Melanie Hoppers: But sometimes you just sit there for a second and think, let me make sure I'm thinking of everything. Let me make sure my whole picture and I'm being open-minded. And then I come back to science and I go, oh, yeah. Okay.
Haylie Pomroy: I knew that we talked about, with your daughter, there was a viral component, and my daughter too, got mono. She was positive for cytomegalovirus. And then later PCR for Epstein-Barr virus (EBV). And I've talked to Dr. Klimas, we've had lots of conversations about this, in the ME/CFS space, we wasted 10 to 20 years just debating whether the patient really had a true disease or not, really had a true dysfunction in the body. If there was something that could be diagnosable. We talk about it, inflammatory from the neck up and from the neck down. In Long Covid, all of it happened at once. We had a lot of docs that had a lot of resistance in the ME space. I don't even like to call it chronic fatigue if we don't have to, we have to in the States. But over in Europe they just use the myalgic encephalomyelitis term. But we got to leapfrog because one, it happened all at once. Practitioners had to deal with the Covid patients, and now practitioners are having to deal with the Covid long hauler. What are you guys seeing in your practice with those patients? Dr. Harris the other day said 10 years and 20 doctors before they get to our office. And they've been told they're just about everything else that has a metabolic disorder. I just feel like you could survey people that walked out of the clinic here at INIM and I'm sure at the Bateman Horn Center. Also, if you surveyed people walking out the door, one how relieved they feel to be validated and heard and understood and given hope. And the other is how many doctors did it take you to get here? I guess my question around that is how do we educate the up-and-coming physicians? And how do we reeducate the physicians that are out there right now, and how do we empower the patient? First of all, you just gave us all permission to Google Mom and doctor. So thank you.
Dr. Melanie Hoppers: That's one of the missions of the Bateman Horn Center. Again, I am the product of them. I would not know what I know. Every single patient that is seen here can thank them because I would have had no idea how to do it without… The volume of information is huge. And they break it down into pieces that can be absorbed. You don't have to know. That's a thing for physicians. If any physician is listening or if a patient can tell their physician or their nurse practitioner or their physician's assistant, whoever their primary care is, you don't have to know everything. If you just try, you will be doing you will be doing far more than the majority. Just listen. And for just a second, as again, I'm speaking to providers, suspend all disbelief and believe your patient. Who wants to feel like this? Nobody. There's no secondary gain. There's no sympathy. No one cares. I mean, they do. There are people that care. But, at the end of the day, when you're home in bed and can't do anything, people aren't clamoring to come check on you. People aren’t clamoring to include you. It's a lonely disease. It's a difficult disease. Please don't add and make them feel like they want to be that way.
Haylie Pomroy: I hope every practitioner out there is listening because it's so hard when their personal experience isn't believed. One thing about the Bateman Horn Center of Excellence is the incredible generosity of information, and there's such a lack of information with people that are dealing with these types of things, any kind of chronic illness, any kind of chronic inflammatory disorder. You guys have a really cool newsletter. I'm going to give the link for people to subscribe to your newsletter because it's just a wealth of generosity. It's information, information, information, and it's all really good stuff. You go to batemanhorncenter.org/outreach/newsletter/ but you guys if you just go to the Bateman Horn Center you go to their website. There's an icon there for their newsletter I would definitely subscribe to the newsletter. Dr. Hoppers, you see patients both in Tennessee and in Utah.
Dr. Melanie Hoppers: I do.
Haylie Pomroy: That's nice. That's wonderful. Is your practice a certain demographic, a certain age, mostly female? Like what do you see?
Dr. Melanie Hoppers: It's funny, I see all ages. It is more female, but it's funny, Long Covid really changed. At least if you see long Covid, it's a little bit of a different demographic, it seems to me and this is just the way it seems. I have patients that are older. I have several patients that are in their 70s, I had one he was 80. Of all the patients, he got better. He actually improved and said, I think I'm good. I'm going to stay home. I'm not going to come back. If I need you, I'll call you. I was like fantastic, that’s wonderful.
Haylie Pomroy: I have a theory about that. We were talking about the older patient that gets long Covid and the older patient that gets ME/CFS the other day, I don't know if I’d share this with you, but I love to ponder with all of you brilliant scientists. They were talking about as we age, our immune system isn't quite as robust. Sometimes the immune dysregulation that happens with any of the post-infectious syndromes or disorders, the stronger the immune system, that’s why we're seeing some of our 20-year-old girls and boys with POTS and these hardcore 15, 12 with long Covid. Their syndromes are so hard to start to manipulate in a positive direction, where in some of our older patients it's a little bit easier because they don't have quite as much of a robust immune system. I'm in the middle of my PhD, so forgive me. Everything is fascinating to me right now.
Dr. Melanie Hoppers: And it may not be any different to Covid than it is with mono, but we're seeing them earlier because we were aware of it. Sometimes I feel like I'm seeing people who are on fire on the inside, they're exhausted, but you look into their eyes and you go, you just look like you're just fried. But the other thing, to answer your question, I do like to see kids, that's really a passion of mine, because when my child was sick, there weren't really any pediatric providers for ME/CFS that I could find that were still seeing new patients. Sometimes if you've been sick a while, you can't find someone to see you, I was like, she's going to age out before she turns 18 and the sooner we can do something, even if we just teach you to pace for post-exertional malaise, you're going to have a better outcome. We want to get that message out to everyone, pediatrics, adults, everyone. And that's something you are you are more in control of than your provider.
Haylie Pomroy: And I think parents can be a strong advocate. It's just so hard when there's pushback. Dr. Hoppers, I cannot thank you enough for being on.
Dr. Melanie Hoppers: Thank you so much. You're welcome.
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Post-exertional malaise (PEM) is often misunderstood and dismissed as mere fatigue, but it’s a much more complex and serious condition.
I’m joined by Dr. Melanie Hoppers, a dedicated physician from the Bateman Horne Center of Excellence. We discuss the symptoms and severe impact PEM can have on those dealing with conditions like ME/CFS and long COVID.
Dr. Hoppers shares her personal journey, motivated by her daughter’s battle with chronic illness. She provides invaluable insights on identifying and managing PEM, offering practical advice on pacing and the effects of emotional and cognitive stress.
Learn how to advocate for yourself, understand your body’s signals, and find hope in the midst of chronic illness.
Tune in to the Fast Metabolism Matters Podcast – Post-Exertional Malaise: In Depth with Dr. Melanie Hoppers.
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Dr. Melanie Hoppers is a practicing physician at the Bateman Horne Center of Excellence, specializing in internal medicine and pediatrics. She earned her Bachelor of Science degree in Biology from Union University in Jackson, TN, and her medical degree from the University of Tennessee College of Medicine. Dr. Hoppers completed a dual residency in Pediatrics and Internal Medicine, equipping her with extensive expertise in managing complex medical conditions, including ME/CFS and fibromyalgia. At the Bateman Horne Center, she contributes to both clinical care and research aimed at improving patient outcomes.
LinkedIn: https://www.linkedin.com/in/melanie-hoppers-939a00279/
Facebook: https://www.facebook.com/melanie.hoppers
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PEM Resources:
https://batemanhornecenter.org/providers/mecfs/diagnosing-managing/rehab-professionals/
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Transcript Below:
Haylie Pomroy: Today, we're going to talk about a subject that I think has a lot of weird nomenclature around it. We're going to talk about post-exertional malaise. Sometimes people think of that as just fatigue. But I'm here to tell you that it's a whole lot more than that. What did I do? I pulled a very special doctor in with us today. It's Dr. Melanie Hoppers. Dr. Hoppers is one of the physicians and one of the practitioners at the Bateman Horn Center of Excellence. There they provide clinical care, they provide research, and education that specializes in the care of post-infectious disease. This covers patients that have ME/CFS, we're seeing things like Long Covid, Pandas, POTS, all of those things that fall into what is going on in the body. We are super lucky to have Dr. Melanie Hoppers here with us today. Dr. Hoppers, thank you so much for taking the time to talk to our community. I really appreciate it.
Dr. Melanie Hoppers: Thank you for allowing me to be here. I'm so happy to be here.
Haylie Pomroy: You are located in Tennessee, is that right?
Dr. Melanie Hoppers: The Bateman Horn Center is in Utah. They’re in Utah, and I am in Tennessee. I do see some patients here in Tennessee and I also see patients in Utah. I'm a product of their environment. I guess you could say they are, like you said, they provide education and they also provide diagnosis and see patients. That's how I got to know them in trying to research and learn.
Haylie Pomroy: Tell me, how did you get involved? Was it family, was it self, personally?
Dr. Melanie Hoppers: What happened about 9 years ago, my daughter had mono and she never recovered and essentially she developed ME/CFS, at that time I did not know what ME/CFS was. I had been to medical school, never was there a mention of this illness. There would be occasional mention of chronic fatigue syndrome with the oral and the crossing of the arms now we got to go see this person, but that was the only experience I'd had with it. I'd had patients, now in retrospect, I'm sure that had it. And although I did not roll my eyes, I was unable to help them. I wasn't very efficient in helping them. But anyway, with my daughter, I tried to find people that would help, tried to find answers, and I didn't locally, but I did find on the internet one night, about 3:00 am when you're up trying to figure things out and your anxiety hits its peak. I was looking and searching and I found this website, the Bateman Horn Center and I was like, wait! No, I take that back. It was on the CDC website.
Haylie Pomroy: Dr. Hoppers, I just want to jump in for our community and tell me how you’ve set humility. Just that you just shared with our community, it's okay to Google things and to look up a little bit on behalf of yourself. We have community members say they get told by their doctors all the time. What, did you Google that? Yes, I did, as a matter of fact. People feel lost and people feel hopeless. No, but I just want to punctuate. You only talk about nothing else. The fact that you have the medical background that you have, the education you have, obviously the passion as a mom and a parent, and that you're feeling lost and hopeless. I hope that our community identifies that it's okay to feel that way, and to be an advocate for yourself and to Google and to look and to research and to talk and to listen to podcasts is what you have to do right now. It's just what you have to do.
Dr. Melanie Hoppers: To be honest, primary care can't keep up with all of this. When I did find myalgic encephalomyelitis and when I did learn about it, I did speak to her pediatric neurologist and said, “Hey, could it be this?” Read the note later which said, “Mom thinks she may have myalgic encephalomyelitis.” Anyway, I found the CDC website had mentioned Dr. Lucinda Bateman and talked about this illness I was like that's it right there. I threw out an email, thinking they'd never answer me. You call your doctor and they don't answer you.
Haylie Pomroy: Says from an amazing doctor's mouth. It's true.
Dr. Melanie Hoppers: I experienced it, and I'm so disappointed in our healthcare system. But anyway, I reached out, and in a few days, I got an answerback. She spoke with me and talked to me about the NASA lean tests that I had never heard of.
Haylie Pomroy: Tell me that test again.
Dr. Melanie Hoppers: The NASA lean test is an orthostatic intolerance test and the doctors will call it a passive stand test. But what you're doing is you're seeing what happens when you stand up. Does anything bad happen? Do you get palpitations? Does your heart race? Do you have blood pooling? Do you have a problem? The worst lean test I've ever seen was the one I did on my daughter.
Haylie Pomroy: I'm dealing with it right now with my kids so I feel it in my heart.
Dr. Melanie Hoppers: It's sickening and I didn't even understand, at the time, I knew it was bad, but I didn't even understand completely how bad it was because, again, I'd done orthostatics before, you lay down, you stand them up. Okay. One minute. There you go, that's your number. It's not something we talked about. I didn't diagnose POTS in my practice. That wasn't something I did. I said, this is really awesome to have this information, but I don't know what to do with it, so can you help?
Haylie Pomroy: At the time you were living in Tennessee?
Dr. Melanie Hoppers: Yes.
Haylie Pomroy: Did you travel to the clinic in Utah?
Dr. Melanie Hoppers: I did, I ultimately went there. And the thing that really amazed me was the way they shared their information. So many times with again, guys sound like I'm just bashing healthcare and I really don't mean it that way because I think the majority of people have good hearts, but we don't share things. We want to keep our little forums to ourselves. Oh my goodness, you're going to steal my intellectual property. You ask a stupid question. But anyway, she just shared everything with me. Here's what we do, here's how we do it. And when I was there, I remember thinking, I've never been in a clinic like this before. This is amazing. And our clinic here, it's an urgent care, it's a primary care. And when we started our clinic, our whole point was we want it to be different for the patient. We want to have an amazing patient experience. We have a movie theater, a 30-person movie theater in our waiting room. If you have to wait, you can watch something on TV. It's not great for ME/CFS patients, all that stimulation. But for our urgent care patients, that was our goal. But when I went there, this was something just on a whole different level. And they took the time. Not only did the providers take the time, but the front desk, the front desk is educated about this illness.
Haylie Pomroy: They are first eyes. They're the first set of eyes that are laid on that patient. And oftentimes by the time a patient gets back to the doctor, they can be nervous, they can be exhausted, they can be frustrated if they have to wait. God bless them and I don't blame them. But that front desk or in our community, it's our community support team that talks to all the people online, all of our online community, they're getting that first glance at that person. What kind of symptoms was your daughter having?
Dr. Melanie Hoppers: Just incredible amounts of fatigue. And at first when this first started and I didn't understand. “Baby, you just got to get up, you got to school. We're just going to have to do this.” And then you go to Disney World and she says I don't want to go to the park. I don't want to do anything.
Haylie Pomroy: It's not just the statistics class that she's like, I'm trying to get out of some math class or some sort of work or something like that.
Dr. Melanie Hoppers: And it's Saturday and it’s Sunday.
Haylie Pomroy: They had to bypass joy. My daughter and her riding.
Dr. Melanie Hoppers: They missed so much. And so just severe fatigue and sick a lot. In retrospect, I realize now so much of that was a post-exertional malaise. The words around this are difficult. The definition is even more difficult, the official definition. I know people spend a lot of time and it's great, but it's hard to define. It's so variable but basically what it is is you have a clinical you have a clinical picture, you're sick, whether you're mild or moderate or severe. But when you have post-exertional malaise, you’re worse, everything is worse. Whatever symptoms you have, they're worse. You may develop new symptoms and then you can't recover as well as you would normally do. And this is the result of some sort of exertion.
Haylie Pomroy: Let me take it back just a second. What we're saying is we have a particular symptom profile and then with exertion, the profile is exacerbated? It intensifies it magnifies that. Is the exertion always doing a 5K, or running a marathon? What kind of things would fall under exertional?
Dr. Melanie Hoppers: Good question. First of all the categories, it can be physical, it can be cognitive, just thinking, it can be social, it can be emotional, it can be environmental. Now what degree of exertion could change from person to person and their level of illness can also change for the individual. For some people sometimes we screen for it and say a college student or high school student is what happens after you take a test? Or a more severe patient, it may be what happens if you read a couple of pages in a book. It can be emotional. It can be, I graduated and I was happy. And that's particularly cruel, isn't it? Certainly, can get mad, but it's also if you're happy.
Haylie Pomroy: It's almost like a hermetic event, any event that the body has to adapt to, whether positive or negative. The funny thing, we're talking about our girls, the funny thing about my daughter was we've always considered her like she's the strength to get over any petri dish. In Disneyland, when she was a kid, I turned around she was literally licking the handrails on the ride at Disneyland. Everybody in the house got sick, she didn't get sick. She can lick lead, anything. She was so hearty. She became this canary in the coal mine. The environmental toxins that are, unfortunately, we're exposed to in our air and our water, like a new mattress. Anything environmental toxicity, she would just tank on us. She would just tank and be exhausted and fatigued. I appreciate you bringing all these categories. It could be social, emotional environmental, physical for sure, and also cognitive. Lights and sounds. She stopped listening to music. Just things that we were observing. Just come downstairs and make me turn off my Taylor Swift. Turn it off!
Dr. Melanie Hoppers: People sometimes mistake it for depression, and it's not that they don't want to listen to music. They can't listen to music. And it can be a combination of those things. It can be, again, for some people that are particularly severe, it may be simply just walking downstairs. I had a patient, who was mostly homebound a little bit between homebound and bedbound. One day got tired of it. He was like, nope, he's 15, I'm not doing this anymore. And he got on a bike, a stationary bike. And he did it for 15 minutes and has never recovered. Why is it important? Why is PEM important? So 1…
Haylie Pomroy: Let me take you back just a second. Post-exertional malaise (PEM). I have an autoimmune disorder, been in that space for a long time with my own self personally, and then it all shifted into neuroinflammatory disorders when I started having kids. But this one has the weirdest nomenclature. People just say you're tired, get up and exercise. But post-exertional malaise (PEM), you're saying the unique thing about it is it can cause not just a trigger of symptoms, but do we see in any light?
Dr. Melanie Hoppers: A lot of things. 1. When you have it, it makes your symptoms worse and it is difficult to recover from. But in addition, a couple of things about it, one is that it can be delayed. You can do your thing and then it's not maybe 12 hours a day, 2 or 3 days before you have your symptoms. That can be frustrating and also hard for people to put two and two together sometimes. And they'll keep doing this over and over again. And the other bitter pill to swallow about this is every time you do it, you're damaging. You're damaging your functional status. If you do it once and you recover, 3 or 4 months later, you do it again, that's not great, but maybe not so bad. But if you do it repeatedly, you're going to end up with a lower baseline. That's why it's just truly very important to get this message out so people understand fighting through it is not going to help. It's only going to make it worse.
Haylie Pomroy: I love you saying that fighting through it. We're going to talk about some of the things that we can do to pace ourselves or so we can do preventative, not get into that space where we're doing damage or make our resilience less. It reminds me, though, a lot of the conversations that, again, in the autoimmune space, there's such a cycle here in the autoimmune space, we a lot of times in my community, we talk about fear of the flare. You're off, you're doing something fun. I went on vacation with my family. In the back of my head was for so many years I was going, “Am I going to pay for this?” Am I going to tank? Am I going to pay for this? What's going to happen? What are going to be the consequences? I was called it fear the flare with individuals that have these long chronic post-viral or post-infectious disorders or syndromes. A lot of times they get in that cycle where they don't know, I don't want to be afraid to do anything, but I also want to listen to my body and know what I can do. First, I want to start with self-identification. How can we as the patient, how can you as your daughter, me and my daughter, identify when to do and when to back off a little bit? How do we identify that? And then I want you to take your momma hat off, put your doctor hat on and say, how can the doctor help the patient identify what that space is?
Dr. Melanie Hoppers: That's a good question and it's hard and I'll try to be realistic because sometimes, there are these ideal ways to do things, but everyone can't do those things. People have to live, they have to have an income, they have to work or what have you. So how can you identify it? Well, there's a couple of different ways. One is just to start to try to recognize, I tell people, to think back when they've had post-exertional malaise or unfortunately, if you have it again, pay attention when you do, and make mental notes. How did you feel? Do you remember how you felt the day before? Do you remember how you felt early in the process? How did you feel? Did you slow down? What did you do?
Haylie Pomroy: Do you have your patients calendar or journal on a calendar?
Dr. Melanie Hoppers: Yes if they can. And there's something that I read recently that I thought was a really good thing. You get your average resting heart rate. And the way to do that is in the morning before you get out of bed, check your resting heart rate, and do that on seven days and get an average. Of course, it needs to be seven good days. You don't want to do it on a day you're already in post-exertional malaise, if you're already feeling bad, I wouldn't I wouldn't do it.
Haylie Pomroy: It's when you're still laying in bed, not when you've gotten up, gone to the bathroom, brushed your teeth, or nothing.
Dr. Melanie Hoppers: When you wake up, get your average heart rate.
Haylie Pomroy: Is there an ideal range?
Dr. Melanie Hoppers: Not necessarily. It's funny, I find a lot of my patients are fairly low normal. Anyway, you get your average number, and then going forward if you're up to 10 above or 10 below, that's a signal right there, that this may be the day for you to back off. It's numbers and I like numbers because sometimes I’m just like a bull in a China shop and off I go and I don't have post-exertional malaise. But even with my daughter when she was younger, I would misjudge. I would think everything's good. This is a good day. And then on the way home, I'd be like, oh no, I've messed up. I’d let her talk me into, let's do one more thing. I needed parameters. The other thing you can do is set timers, especially with a child, I can't tell you how she's feeling unless she tells me she doesn't always feel like it. So I would set timers and I would know, each person is different, but you can get a feel for what you can and can't do with time. Like I know that an hour is going to be too long, then I'll set a timer for 30 minutes and it is a hard stop at 30, and I'll do a 25-minute timer. Okay, we have five more minutes, the decision has already been made, we're out. And that's what we would do and that was very helpful for us.
Haylie Pomroy: You would do more like bursts of activity and then periods of rest?
Dr. Melanie Hoppers: Periods of rest. And another thing, I'm going all over the place. I'm trying to make it organized. Another thing, when you do rest, if you can get your feet up because so many people have orthostatic intolerance, they aren't getting blood flow to the brain. If you can get your feet up, you can help.
Haylie Pomroy: On the feet up, please. It's above the heart, correct?
Dr. Melanie Hoppers: Yes. Lay on the ground with your feet on the wall at a 90-degree angle or another thing you can do is, the thing about this illness too, is it's very expensive.
Haylie Pomroy: I'm going to stop you one quick second. When you say feet up, how long should I shoot for with people? 5 minutes? 10 minutes?
Dr. Melanie Hoppers: It’s 30 minutes if you can.
Haylie Pomroy: It's good for us to have goals. I think the biggest thing, the misnomer is that so many people and we're seeing it with long Covid, definitely see it in ME/CFS, with Gulf War injury is a lot these people are Type-A. A lot of people are super active. And so if we can give them a mission and a goal, they want to feel better. This is fabulous. I didn't mean to interrupt, but you were saying that this can be expensive.
Dr. Melanie Hoppers: It’s an expensive illness, so another suggestion is if you can put your feet up or there are compression boots that you can buy and you can get them on eBay if you want to get a little cheaper version. They'll squeeze and it's a rhythmic thing and it will help get that blood flow back up. You can do that as well. I have patients that do that in the evening.
Haylie Pomroy: How many times a day? In the evening better?
Dr. Melanie Hoppers: Can do it three times a day. Especially if you're having a bad day or you've exerted yourself and you're thinking, maybe I did a little too much, you can do that 2 or 3 times. For the person who's listening, who works, and they go, “What am I going to do that three times a day?” I get that. It depends on what your situation is. But if you're, if you do work, maybe when you come home and maybe again at bedtime. Maybe 30 minutes is too long because you have kids. Maybe it's 15 minutes, but do what you can.
Haylie Pomroy: I appreciate you giving the seminar and review it for everybody. But like even when you talked about the 25-minute, 30-minute hard stop, one of the things with people that are working is sometimes if you can just, maybe you're sitting in front of the computer or you're on phones or whatever, that 30-minute mark, you can go in and put your hands in cold water or do something that's going to change the rhythm of what your body's currently doing, something that can give your body a break. I love these active things. When we measure the resting heart rate, did you say average it over seven days?
Dr. Melanie Hoppers: Just get an average number.
Haylie Pomroy: And then when you're 10 above or 10 below that's a day to maybe, one, support yourself even more or back it down a little bit. Would that be right?
Dr. Melanie Hoppers: That heart rate is taken again at rest. If you wake up and you're 10 above or 10 below or more, then that's a warning sign. But then also you can use your heart rate for activity. I've read 15 beats per minute above your resting heart rate. If you can, okay. But I will tell you that that's a little bit restrictive. And again, it depends on what place you're in. If you are severely ill, you can't go anywhere or do anything, or really try to hone in on this, then that might be a good number. But if you have to go and do some things and work or what have you, then you might go with 120, 130, and then note: that's my number. Set an alarm on your watch or your Fitbit if you have one, and know that at that number I need to sit down and rest if at all possible. And then as you are doing that start to pay attention. Oh, wait, my watch went off, here's how I feel. Oh, wait, I feel a little short of breath. I feel a little bit lightheaded. I'm not bad enough to really stop because I am Type-A, or whatever. I'm going to keep going. But now you start to pay attention to those things, and you don't necessarily have to have a watch on or whatever, but you can start to pay attention. And note, before I quite get to that point, this is how I feel I'm going to pull back.
Haylie Pomroy: With post-exertional malaise, the capacity to rehabilitate that as part of a person making progress towards getting better? Do we see that as something that can also resolve itself in that process?
Dr. Melanie Hoppers: If a person stays out of the post-exertional malaise, there have been a couple of studies that show that their overall clinical status may improve. I'm not going to say if they're going to get well, that's not the case, but the overall status improves. On the other hand, if you repeatedly are in post-exertional malaise, you are going to see a worsening. It just does the opposite.
Haylie Pomroy: It's important to manage and condition this. It's important to listen.
Dr. Melanie Hoppers: You can't condition yourself as far as graded exercise. That's not something I would suggest. Not like conditioning in the traditional… When people think… That means if I just try harder, 5 minutes, and push really hard. I don't mean that.
Haylie Pomroy: I'm glad you said that because I think so many people, we had a really good friend, a really brilliant friend of ours that said, why don't you just have her start at 10 minutes a day for the first week, at a minute every week, until you get to do it. And then add weights. But on those down days, if you do push through them, your next down is even more. How would you classify as a doctor just a traditional fatigue? I've heard a lot of people say, being tired that rest mediates, being able to identify a cause for your fatigue, for your tiredness, a person that's not dealing with chronic illness, how can a person dealing with chronic illness describe the difference between just a normal everyday fatigue and post-exertional malaise?
Dr. Melanie Hoppers: I'm going to get a little science-y. They did this study, I'm sorry I don't know the names of the authors. I can maybe provide that later for you. But there was a study that you see pet testing again, cardiopulmonary exercise testing (CPET). This is a well-researched form of testing that assesses the functional capacity of a person, how much energy they can expand, that kind of thing. They did a 24-hour CPET test. It's a you get on a bike, usually sometimes a treadmill. They can use seven minutes of graded exercise, and measure the metabolic components, muscular, cardiac, and pulmonary components for energy expenditure. They did a study, they took I think it was 22 patients who were normal but sedentary, and they had 25 patients that had ME/CFS at 24 hours they looked to see who had recovered. 85% of the healthy sedentary controls had recovered. 0 patients of the ME/CFS had recovered. At 48 hours, all of the healthy controls had recovered and 1 of the ME/CFS patients had recovered. Stark difference. The problem is they cannot create energy. It doesn't matter how hard you try. You can't squeeze blood out of a turnip. That's the best way I know to put it. You can't. You can beat your head against the wall all day. It's not going to happen.
Haylie Pomroy: I just know that there are people out there right now that are listening, that are thinking, I hate to even use the word medical gaslighting, but it's being used a lot right now, but they're made to believe that they have a lack of desire, or a lack of effort, or a lack of willpower or a lack of cognition. When I first came into the institute and I could see the VO2 machines, the machines, the bikes, the testing, the oxidation, oxygenation, the testing of the ATP, secretion of blood labs that we run, just the science, the hard science sits behind something's going on from an inflammatory and metabolically in these bodies. I knew it and I believed it in my mind and with a little bit that I had been exposed to. But there's hard science about this.
Dr. Melanie Hoppers: That's what's baffling to me. How many times I say it, I feel like I'm preaching all the time this message. I tell everyone, I tell every physician, every health care provider that I'm around, here's what's happening, here's what's going on. And I try to give them a little bit of the science because I think maybe that'll make a difference. Maybe that will make them understand. Also, I want the patient to understand, here's what's happening. What we do, we start gaslighting ourselves.
Haylie Pomroy: We start gaslighting ourselves.
Dr. Melanie Hoppers: I gaslight myself as a provider, I'll be like, am I not encouraging them enough? Or and I'm like, wait a second…
Haylie Pomroy: I know better.
Dr. Melanie Hoppers: But sometimes you just sit there for a second and think, let me make sure I'm thinking of everything. Let me make sure my whole picture and I'm being open-minded. And then I come back to science and I go, oh, yeah. Okay.
Haylie Pomroy: I knew that we talked about, with your daughter, there was a viral component, and my daughter too, got mono. She was positive for cytomegalovirus. And then later PCR for Epstein-Barr virus (EBV). And I've talked to Dr. Klimas, we've had lots of conversations about this, in the ME/CFS space, we wasted 10 to 20 years just debating whether the patient really had a true disease or not, really had a true dysfunction in the body. If there was something that could be diagnosable. We talk about it, inflammatory from the neck up and from the neck down. In Long Covid, all of it happened at once. We had a lot of docs that had a lot of resistance in the ME space. I don't even like to call it chronic fatigue if we don't have to, we have to in the States. But over in Europe they just use the myalgic encephalomyelitis term. But we got to leapfrog because one, it happened all at once. Practitioners had to deal with the Covid patients, and now practitioners are having to deal with the Covid long hauler. What are you guys seeing in your practice with those patients? Dr. Harris the other day said 10 years and 20 doctors before they get to our office. And they've been told they're just about everything else that has a metabolic disorder. I just feel like you could survey people that walked out of the clinic here at INIM and I'm sure at the Bateman Horn Center. Also, if you surveyed people walking out the door, one how relieved they feel to be validated and heard and understood and given hope. And the other is how many doctors did it take you to get here? I guess my question around that is how do we educate the up-and-coming physicians? And how do we reeducate the physicians that are out there right now, and how do we empower the patient? First of all, you just gave us all permission to Google Mom and doctor. So thank you.
Dr. Melanie Hoppers: That's one of the missions of the Bateman Horn Center. Again, I am the product of them. I would not know what I know. Every single patient that is seen here can thank them because I would have had no idea how to do it without… The volume of information is huge. And they break it down into pieces that can be absorbed. You don't have to know. That's a thing for physicians. If any physician is listening or if a patient can tell their physician or their nurse practitioner or their physician's assistant, whoever their primary care is, you don't have to know everything. If you just try, you will be doing you will be doing far more than the majority. Just listen. And for just a second, as again, I'm speaking to providers, suspend all disbelief and believe your patient. Who wants to feel like this? Nobody. There's no secondary gain. There's no sympathy. No one cares. I mean, they do. There are people that care. But, at the end of the day, when you're home in bed and can't do anything, people aren't clamoring to come check on you. People aren’t clamoring to include you. It's a lonely disease. It's a difficult disease. Please don't add and make them feel like they want to be that way.
Haylie Pomroy: I hope every practitioner out there is listening because it's so hard when their personal experience isn't believed. One thing about the Bateman Horn Center of Excellence is the incredible generosity of information, and there's such a lack of information with people that are dealing with these types of things, any kind of chronic illness, any kind of chronic inflammatory disorder. You guys have a really cool newsletter. I'm going to give the link for people to subscribe to your newsletter because it's just a wealth of generosity. It's information, information, information, and it's all really good stuff. You go to batemanhorncenter.org/outreach/newsletter/ but you guys if you just go to the Bateman Horn Center you go to their website. There's an icon there for their newsletter I would definitely subscribe to the newsletter. Dr. Hoppers, you see patients both in Tennessee and in Utah.
Dr. Melanie Hoppers: I do.
Haylie Pomroy: That's nice. That's wonderful. Is your practice a certain demographic, a certain age, mostly female? Like what do you see?
Dr. Melanie Hoppers: It's funny, I see all ages. It is more female, but it's funny, Long Covid really changed. At least if you see long Covid, it's a little bit of a different demographic, it seems to me and this is just the way it seems. I have patients that are older. I have several patients that are in their 70s, I had one he was 80. Of all the patients, he got better. He actually improved and said, I think I'm good. I'm going to stay home. I'm not going to come back. If I need you, I'll call you. I was like fantastic, that’s wonderful.
Haylie Pomroy: I have a theory about that. We were talking about the older patient that gets long Covid and the older patient that gets ME/CFS the other day, I don't know if I’d share this with you, but I love to ponder with all of you brilliant scientists. They were talking about as we age, our immune system isn't quite as robust. Sometimes the immune dysregulation that happens with any of the post-infectious syndromes or disorders, the stronger the immune system, that’s why we're seeing some of our 20-year-old girls and boys with POTS and these hardcore 15, 12 with long Covid. Their syndromes are so hard to start to manipulate in a positive direction, where in some of our older patients it's a little bit easier because they don't have quite as much of a robust immune system. I'm in the middle of my PhD, so forgive me. Everything is fascinating to me right now.
Dr. Melanie Hoppers: And it may not be any different to Covid than it is with mono, but we're seeing them earlier because we were aware of it. Sometimes I feel like I'm seeing people who are on fire on the inside, they're exhausted, but you look into their eyes and you go, you just look like you're just fried. But the other thing, to answer your question, I do like to see kids, that's really a passion of mine, because when my child was sick, there weren't really any pediatric providers for ME/CFS that I could find that were still seeing new patients. Sometimes if you've been sick a while, you can't find someone to see you, I was like, she's going to age out before she turns 18 and the sooner we can do something, even if we just teach you to pace for post-exertional malaise, you're going to have a better outcome. We want to get that message out to everyone, pediatrics, adults, everyone. And that's something you are you are more in control of than your provider.
Haylie Pomroy: And I think parents can be a strong advocate. It's just so hard when there's pushback. Dr. Hoppers, I cannot thank you enough for being on.
Dr. Melanie Hoppers: Thank you so much. You're welcome.
