#20 Practical guide to pacing and managing Post Exertional Malaise (PEM) with Dr Melanie Hoppers, Bateman Horne Center

(gentle music) Welcome to Make Visible, the podcast Shining a Light on Complex Chronic Elness. I am your host, Emily Kate Stevens. (gentle music) Welcome back. This week I bring you a wonderfully insightful and hopefully helpful conversation with Dr. Melanie Hopper's of the Bateman Horn Center. Physician, pediatrician and a mother who has spent the last 10 years trying to help her daughter with ME/CFS. Here we discuss post-exertional malaise, PEM and pacing, offering you a practical guide to understanding and recognizing PEM, what to do when you have it, and ways in which you can use pacing to mitigate it. (gentle music) In terms of where you are now, you are an internist and a pediatrician. And in 2008 you co-founded the Physicians Quality Care Center, which was there in Tennessee. And this was a multifaceted center combining that real medical line of acute and primary care. But within that center, you had the more, I don't know if holistic is too light a word, but you combined that OT, physio and wellness piece of things. As if you were trying to actually help people get well. We even had a gym for a while, we had to shut it down, but we had a gym, we were trying really hard. But the self is not particularly fond of healthy eating and exercise. So in terms of your approach to healthcare and your approach as a doctor, tell me about that idea that you had to bring all of those elements because I think that's so relevant for what you have ended up doing now. And it's a huge missing piece in a lot of healthcare. - So my bot was healthy eating, exercise are all very important, obviously not for ME/CFS, but for people who don't have ME/CFS. Those are two things that I wanted to incorporate 'cause lifestyle, again in the South, our lifestyle is what kills us. And so we're just trying to help people make lifestyle changes as a part of their care. If you have a high cholesterol, let's help you lose weight. If you have a high cholesterol and diabetes, let's help you exercise appropriately. Obviously very different with ME/CFS 'cause exercise is not something I've prescribed, but it also goes back to the healthy eating, the environmental exposures. How can we limit those things, the chemicals that we're exposed to and things like that? But yeah, that was my thinking when we opened the clinic. And my daughter was healthy then. And to be honest, I was like other people. I had not heard of ME/CFS. I've heard of chronic fatigue syndrome as part of my medical training associated with role dyes every time it was said. - Yeah. - This scale has chronic fatigue syndrome, yeah. - Yeah. - When I was wrong with her mental health, whatever. - Yeah. - And I didn't feel that way. I was when people came in looking back and I go, oh, now I know what was wrong with them. I always tried and I always was sympathetic, but I wasn't effective. It wasn't effective at treating them. Once my daughter became ill. - And that was 2015. - Yeah. 10 years ago, she was 10. Yes, and I had no idea. And then there wasn't as much stuff, but I still tried the whole, okay, we've gotta get up, we've gotta go to school, we've gotta do the things. I didn't know about pacing, I didn't know about post-utestational malaise. But for the year, I'm like, huh, we go on vacation and she doesn't wanna do anything. We go on vacation and she comes back. And I remember I finally found Dr. Bateman and her website, and I was reading, I was like, well, okay, this is exactly what she has, but Pym and pacing wasn't a part of anything. And I took her to doctors and I were useless. She had pots and they didn't refer me to their pod center. - It actually makes me well up slightly because knowing what it's like for me to live with a chronic illness as an adult is hard enough. But the idea for her to be going through it or for parents to be completely helpless watching their children and trying to advocate for them, I just think it must be. - It's incredibly painful. And what's incredibly painful is, I don't know where that much better. Maybe a little, but I saw a child this week, horribly ill, been to providers multiple times and, you know, I don't know. I don't know, exercise, prescribed exercise therapy, and a kid who could barely speak, we've got to get the word out about kids too. I mean, it's, we got to get the word out about everybody, but it's incredibly terrible. - Yeah. - It really is. - And that is one of the things that you finding the Bateman Horns Center and joining essentially being mentored, I'd say, by by the Center Bateman and becoming part of what they offer. A huge part of what they do is that education piece, they are trying to share knowledge, as well as the clinical work that you do. It's about educating patients and healthcare providers. - Right. - Now, in a, it was actually in something that was written from NSU, who I, a huge fan of the team there at NSU and an interview that you did. And they described that Bateman Horns Center as somewhere that breaks down a vast amount of information into manageable pieces, making it easy for patients to understand and apply. And I just thought that was a really beautiful and succinct way to talk about the work that you do at the Bateman Horns Center. And this interview, I would really, really like it to be strong, practical, adviceful for patients on post-exertional malaise and pacing. But I would first of all like to talk about this amazing piece of work that you and the Bateman Horns Center have just created. And that is your clinical care guide, which is for patients and healthcare providers. Can you tell me what this document is? - So we try to break down, how do we treat people with MECFS, long COVID, people with long COVID who have MECFS, how do we break down and take care of this illness? I remember when I first, I had gone to the Bateman Horns Center and I'd spent about a month there learning and I was all excited and ready to come home and start seeing patients. And I was thinking, I'm gonna start slow. I'm gonna start real easy of refined to people who are not so sick, I'm gonna start there and I'm gonna work my way up. And the first patient I saw was a teenager who was having multiple episodes of seizures every day. She had been labeled as having psychogenic seizures. And indeed they were not psychogenic seizures, treating her MECFS to her seizures, right? And that was the shot in the dark on my part. I remember coming out of the room and going, oh no, what have I done? How did I get into this? Because I am in over my head. And I sat there and I thought a minute and I thought about my daughter and I thought about how no one was able to help us. No one else now who's gonna help her? So I have to try. So I did and I got super lucky. And MECFS, because I knew she had symptoms of MECFS, I didn't think the seizures were MECFS, I didn't know what exactly they were. But when we treated her MECFS or seizures improved, remarkably, like from 10 seizures a day to one a month. - Wow. - Yes, I'm completely changed her life with a couple of nits. I remember coming out and just feeling so overwhelmed and I had the Baton Horn Center that I could call. I have another group that I'm involved with that I can post a question and people will help, but they're providers out there have no idea. So I didn't want them to come out of that room and give up. Like I was tempted to do that day. I wanted to give them something to help them. And well, the Baton Horn wanted to do that and they allowed me to be a part of it. And so this is to try to help guide them through treating a patient with my logic and cephalomer a lot of scrim Fatigue syndrome. Whether it's because of COVID or whether it's because of mono or whatever horrible thing triggered their illness. It was really hard because everything you do, there's the art of medicine, right? You can look up in a book how to treat someone and if you have never done it before, you know what the book says, but sometimes what you really do is a little bit different. So we tried to kind of put those things in there as well. For instance, when we start treating especially teenagers, I take like a normal dose and divide it by four or five and I start there and I slowly tie trade up. I'm sure people look at my doses if they get some wrinkle, what are you doing? Have a reason because you're given that pool dose and they'll have all the side effects. It's too much. So you have to start slow. So we make sure we add those things in, you know, principles go low and slow, all those different little principles and then we divided, you know, orthostatic and tolerance. What's the definition? You have either orthostatic and tolerance or cognitive impairment. So there's a chapter on each of those things. Here are some things that you will see. Here are some ways that we treat it. All the comorbidities, even Dr. Yelman wrote beautiful chapter on CCI, the Neural Anatomical findings that are very complex and hard to understand. But yeah, there's just a chapter on all the different things and different ways that you can treat. These are not, it's not a formula because everybody's different. You'd think you're treating one illness. It can't be that hard. It's just one illness. You should be able to figure that out and be really good at it. But it's unique for every person. I think one of the big things with it is the sections on the comorbidities because it is one illness, but there are so many things that go alongside it and it does that fall within the same illness or is that a comorbidity and the way in which you treat them together separately. It's like one of those puzzles that just gets ever more complex, the more layers that come into it and and you're dealing with the ME/CFS cohort of people that have been sick, like your daughter for 10 years, and that length of time of having the symptoms and stresses on your body, how that has then chemically biologically changed the body. There are so many strands to it, aren't they? Yeah, and it's a guide. It's a way of trying to unravel that a little bit. In trying to, for example, at my clinic, we have primary care and we have several nurse practitioners there and I picked one, bless her heart, who I said, "I'm going to give you my patients that when I hear about someone I'm going to send them to you, she didn't necessarily say, okay, great, but she's been willing to do it." So I gave her that and so we started with some patients who were maybe mild with pots and so we really focused on how do we treat pots. So she can pull up that chapter and really read about it and then kind of expand from there because whatever started, MCAS was pretty foreign to me. But it was like, "Okay, I can handle this." And so I had to kind of stick my toe in the water just a little bit at a time before I felt more comfortable with it. And so again, it's just a place where people can go, "Look, read, there's resources so they can find more information. It's are interested." "Hey, I think I'd like to try treating someone." This person sounds like they have MCAS. Oh, look, there's all these treatments that are already approved. There are FDA approved drugs. I'm not doing anything out of the box. I'm doing things that can even be found over the counter. So it gives them a comfort level and helps and it's hard to do things out of the box without something on paper or something in print where you feel like that's okay to do. So I'm trying to give people that information. And that's another thing that you do both in the clinical care guide and at the Bateman Horn Center is you layer these various FDA, there is still no FDA approved treatment for ME/CFS, but you layer various FDA approved treatments to alleviate people's symptoms. Absolutely. I know that you're a big advocate for LDN. You use that quite effectively in a large number of your patients. I love LDN. I really do. You have ME/CFS, right? I have Long COVID. You have Long COVID. Will do you have ME/CFS secondary to Long COVID? I don't think that I do now because of that 50% threshold that you need to fulfill, which is an interesting thing. I absolutely understand that you need to have a benchmark, but that's only because during the last six months I have made considerable gains in my health. That's wonderful. But until that point, I don't think I would necessarily have properly fulfilled the criteria for ME/CFS. And yet I was affected every single day of my life by Long COVID and probably half the time for a good three or four years I was unable to get out of bed. Well, that, do you have PIN? Yes. Now I think it's much more managed. That may be why you're doing better, right? Well, this is an interesting point because I do really, really want to go into detail with you on the PEM. Okay. On how to manage, recognize and deal with the PEM once you're actually in it. But one of the big things with once you reach a stage where you're vaguely functional is understanding the way in which that PEM is always changing or your thresholds are changing. Because, and I've spoken to Dr. Bateman about this, I've spoken to Dr. Climus about this, that point at which you think you're fine, you think you're doing okay. So you throw yourself way too far into life. And so I've been doing pretty well for six months, but I can feel right now that because I'm trying to live at a higher level than I have been. In the first three months of feeling better, I was so gentle with myself. And then you start pushing it and start pushing it and start pushing it. And so whilst a lot of what I'd like to discuss now is for the people who are really in the thick of it, needing to understand pacing just to get through their everyday activities. I would love to also touch on long-term strategy because I don't know if any of us ever completely lose. Certainly that the sort of hangover or the shadow of what we have been through. I don't know if we actually recover from these illnesses. Agree. So let us talk about your, you use LDN, you use things to treat MCAS. You use things like the Nassaline test to understand pots and orthostatic intolerance. But what I would love to hear from you today is your understanding of post-exertional malaise as you've seen it both in your daughter and in your patients. And so let's first of all start with patients just understanding or recognising what PEM post-exertional malaise actually is in them. So post-exertional malaise essentially does when you exceed. And let me say this at the beginning, when I use terms I try really hard to make sure that it's not ever a failure on the part of the patient. I don't ever, ever mean that, but sometimes the words I used may, I don't want that to be misinterpreted. But within MCAS or with long COVID, there is an energy threshold that you want to stay under. And sometimes when our extortional levels exceed that threshold, then we experience PEM post-exertional malaise, which is basically a worsening of all of your symptoms. It can incorporate new symptoms. It's associated with fatigue, but it's not just fatigue. I almost hate to use fatigue in the definition because people get really hung up on that. And they think that's all it is. It's so much more you exceeded your capacity and now there's a payback. And it's a payback with worsening of symptoms. There may be additional symptoms or the static intolerance may get worse. Generally, it's delayed after the exhaustion. Sometimes it's immediate, but generally it's delayed. It can be delayed two to three days. And I'll tell you, I've noticed lately, again, I have walking experiment in my house. My daughter, she'll laugh if I say that. And notice the other day, it was four or five days later. She had done some things and I was worried. I was like, oh, we got away with that. And then four or five days later, I noticed the fade. And I was like, okay, that's interesting. So sometimes it can come even more than 72 hours later. Generally, the recovery takes at least 24 hours. Sometimes can be months for people. But it's essentially impaired recovery in response to an exertion. Just to pick up on that point, which I think is really important because there is so much emphasis put on exhaustion put on fatigue. And I know through my experience of this, a lot of people who say, but I don't have PEM. I don't suffer from PEM. However, that's because they are attributing it to that fatigue state, that exhausted state. There are two things in this. A lot of the time they will have exacerbation of other symptoms. Maybe it's the heart partitions. Maybe it's the difficulty in breathing. For me, it was definitely the headaches, the migraines. But the other thing for patients who are in these states is that they are often in an over and adrenalized state. So that fatigue feeling, that exhaustion is sometimes not necessarily recognized as such by the brain because of the, it's almost like a buzzing that I used to have. So I thought that I wasn't tired. But it's because your body is in some kind of overdrive. So I think it's not something that someone has mentioned before on this podcast, but I just wanted to highlight that point that post-exertional malaise does not necessarily mean that you end up feeling exhausted. It can often. But certainly, certainly, certainly. Sometimes it's more cognitive. And I think too, I noticed this in kids especially, the brain fog, I think, really makes it difficult sometimes to recognize things. I've noticed that too with adults, I think with a brain fog, you just can't think it's clearly and you don't recognize you aren't a self-aware, I think. Yeah. And so I think that, it doesn't affect everybody the same, but I think for some people it can be hard to sort all of that out. even just because of the brain fog. And so the place that we would like to try and get to is possibly a place where people are not pushing themselves into post-exertional malaise. But I guess that there are. We need to find out that threshold. We need to find how do people recognise when they are going into that post-exertional malaise? And what do they do at that point? Right. So it really is hard, especially at the beginning. First of all, people are functioning, depending on how old you are, if you're 30 and you get ill, well for 29 and 30 years, you've functioned in a certain way. Now all of a sudden, everything is changed. It's like you go outside and gravity is no longer affecting you. The rules have changed. You're an upside-down world. And you have the only disease that this occurs in, so unless someone has the same problem, they don't understand. It's just really hard to wrap their brains around even medical professionals have a hard time wrapping their brains around this, even when confronted with all of the evidence. It's very strange. First of all, I want to recognise that it's just hard to figure out. But there are certain signs that can be helpful. If your heart starts racing, if you have palpitations, if you start to have some brain fog, maybe a little bit of word finding hard to concentrate, had a patient tell me one time, oftentimes her pen was triggered by going to the grocery store. She said, I finally realised when I'd have a hard time making a choice, I knew that was my signal. And she knew that's when she had to do something different. Have a patient who's teeth hurt when she is becoming too physically active. So there's little signs like that that can occur. And that's sort of the early signs of PIM. They may have chest tightness, trouble breathing. But recognising those signs, if you can do that, there's also other things, there's physical signs too, right? You can also have heart rate monitors and we can talk more about that. That if you have something awareable of some sort or for people, I always want to make sure I give you examples for people who can't afford things like that because when you're this sick, you have to spend a lot of money on your healthcare. So if you can't, let's teach you how to check your pulse. And if you're starting to feel like maybe I'm not sure how I'm doing, let me check my pulse and see what it is. And we can talk like I said, looking at data to figure out when you're having a problem. But those are symptoms that you may experience. When that happens, the sooner you can stop. Obviously, if you're driving through traffic, that may not be something you can do with a child, you're running after in the store, you can't just stop what you're doing. But as soon as you can, you stop, you rest, you get off of your feet, you get supine, even get your feet up if possible. The optimal situation is to go lie down, get your feet up, ear plugs in. I'm telling you, stop as much energy consuming activities as you can. And it doesn't just mean stopping your physical activity, stop your cognitive activity, stop your sensory processing, turn the lights down, don't have the TV on in the background. I mask phones, screens, all those things, stop everything. It's danger, danger, red zone, stop. Wait till your heart rate has recovered until you're starting to feel more like yourself. And again, I know it. And sometimes I say these things and I hear myself talking and go, for the person that's sitting there going on a single parent and I have to work, good luck with that, I get that. But to the best of your ability, if maybe you can't do that, if you aren't work, you stop and take a break, if that's possible, even though you may not be able to lay down with earphones and I mask on, you can at least maybe stop and take a break. But stopping as soon as possible, getting that heart rate down and talking about cognitive activities that produce PIM, you may not have elevated heart rate, so you're going to just take a break. And is there any kind of guidelines in terms of the length of time that we need to rest in that? Because for some of us, it really is, you can't get out of bed for two days. You can't do anything. But is there a suggestion that taking 10 minutes is still something? It's still useful. Yeah. And even if you don't have the capacity to take two days off of one. Right. And certainly, and it depends on where you are, right? If you are, I'm just trying to pace my activities. I'm not in PIM. I don't have signs of PIM. One thing that I, my resources, a lot of the things I suggest come from Amy Mooney Clayton Powers, occupational therapists, physical therapists, and then what I've read that top that I'm for is done. And Amy's an occupational therapist, she's super helpful with little tips and tricks. And one thing she talks about is two to one. For every two minutes, you should have a minute of rest. Obviously, you don't necessarily go around one minute or two minutes and I'm going to stop one. But just kind of a two to one capacity. Again, if your heart rate's up, you can use that. Get it back to your resting heart rate. One thing that's really important for people to know what is their resting heart rate when they wake up in the morning. So I really advocate for having a pad and pin at your bedside or whatever you use to log your information. But keeping up with what is your resting heart rate in the morning before you get out of bed. That's a great baseline number to know. Different ways to pay some people talk about what's your anaerobic threshold. When you hit the anaerobic threshold is when PIM starts, baseline heart rate resting heart rate plus 15. Well, that's pretty darn restrictive, right? If you're 60, now you're at 75. I mean, most of my patients would just have to sit or lay down the rest of the day. So we go maybe a little bit higher. If I say that number, most of my patients just ignore what I say because there's like I can't do that. We're done. So I'll start at 120 and say try to stay under 120. If you can stay under 120 and you're not having PIM, I suppose we can use that number. If you're still having them, then we're going to have to slow that down. So I want to get you back to your resting heart rate before you get up and move around again if that's possible. Obviously, if you feel pretty bad and you're down to 75 and you can rest another 10 or 20 minutes, go ahead. There's no limit to that. But I find that most people, if they feel good enough to go, I can't get them to stop. Somebody, I have pediatric patients in their mind will say, I don't want them to get deconditioned. I want them to play and I'm like, I cannot stop a kid from playing. If all of a sudden they're better and I do have patients, pediatric patients with long COVID who some have really improved quite a bit. So where they started and where they are now is very different. They just started doing more. It's hard with kids because they don't express themselves as well. Adults as well, they'll start doing things. So I don't think you have to worry that you're going to overdo the rest. Yeah. On a side note, do you think that kids whilst it might be harder for them to express things are actually more aligned with how their bodies are feeling. So if they are feeling shattered, they know they're feeling shattered. Whereas adults have much more that sense of duty and they'll just push on through. Yes, it's kids are hard to for another reason. They may feel like, okay, I just want to go lay down. That's what I'm going to do. They don't necessarily have that and it depends on their age, right? They don't have that guilt. Maybe that adults have like, why am I still laying in bed? They haven't been old enough to be conditioned that you have to be a certain way or a certain function to be a normal person who's worth something. Which obviously I don't describe to that belief, but kids are going to just lay down when they feel bad. I feel sick and they lay down. But the adults come around behind them and say, we got to go. Come on. It's time to go. We got to go to the store. We got to go to this activity or that activity. Your brothers playing baseball. We got to go. They're at school. The teachers, like get your head off the table. You got an assignment and their lives are ruled by other people who don't feel what they're feeling. So they don't know. And sadly, sometimes parents don't get it. They don't believe it. They'll keep pushing their kid or they do believe it. And their kid goes to school and despite talking to the school, despite talking, they don't get it. And so off you go and kids just don't have that autonomy. Yeah. They're the better teenagers are hard because they want to live. They want to experience all these fun things. And it's really, really hard to slow them down. But the disease will. Yeah. Do you think that the pushing through in PEM, especially in those early days when you don't really understand it, you don't really know what your body is going through? Does that slow down any potential recovery? Does that build up in terms of its detrimental effect? Yes. I do believe. You believe that it absolutely contributes. And when you're in post-exertional malaise, it's very hard to treat your symptoms. When you're in post-exertional malaise, my treatments don't work as well. I learned the hard way. Don't start new medications when a person is in PEM. That goes very poorly. Every side effect. And I learned this at home. You know, I learned that at home. That if you're in PEM, you give them medication, they will experience all the side effects. They will not experience any improvement. And then you mark that one off the list incorrectly. Because it's really because they were in PEM, you need to try again when they're not in PEM. And you need to start low. And you need to go really slow and tie it up. Everything's different. Like I said, everything is topsy-turvy. What is that physiologically? Biologically, what is that that means that medications don't work? Because if I reflect the majority of things that were tried on me were probably tried when I was than a massive content. pretty much constant state of PEM because we didn't understand. We still hadn't equated it at that time that long-havid was this similar disease to MECFS in the way that it was a post-viral consequence and the way in which we needed to consider it. So I don't, nothing worked for me, but I think it was probably in PEM for two or five years. Right. Different things can be contributing. One is you could be in a MECFS player because you have PEM when you're in PEM, all your symptoms are worse. Many, many of my patients have muscle activation disorder. And okay, so when you're in a flare, your body is primed and ready to attack any new thing and exhibits in the medications can cause a problem. Another thing is you're just not an omniate, right? Right. Always think about those nasty exhibits that can cause all sorts of problems. Again, healthcare is expensive when you have this disease. So many times my preference is to compound things, but eventually you have to pick and choose your healthcare dollars. But, um, exhibits can be an issue. The autonomic nervous system is on overdrive, so you get exposed to something new. The body is just like, no, no thank you. I would not like to participate in this today. It's something like a hypersensitivity across the board. Yes. Yes. When the nervous system is dysregulated like that. Right. Right. Hypersensitivity to everything. The other thing is you think about it, your mitochondria aren't functioning properly. There's energy taken when you are taking new medications and you're just not ready for that. You may not absorb the medications properly because you're in PESITS RRALAZ and your digestive system isn't working as well. So all sorts of reasons, maybe all of those, it may be none of those. I could be completely wrong, but that's where I come down on that. And is that mitochondrial function more dysfunctional in the PEM phase? Okay. Interesting. So if we want to avoid that hypersensitive overdrive state that we've reached for PEM, talk to me about the strategy that you use with your patients to help them understand how to pace, balancing their activities and their energy to enable them to possibly live slightly better. Live slightly more. So every person's different, right? And I really try to learn my patient and learn their personality. And I always tell them, give me feedback. If this sounds like something, I think we all think about ourselves, right? I think about myself. What would I do well with? And there are certain things that I know I wouldn't do well with. I'm a person who I like data. If I see data, go, oh, get really obsessed on my ring. What do they give you at an age? And like, I look at that age like I want to be younger. He said, what do I need to do? I have to sleep better. Oh, no, I'm going to have to meditate now. Okay. Well, I'll meditate even though I'm really bad at that. But now I try to meditate. So I'm going to get that number down. I want to see a better number. So if you give me numbers, I'm going to act right. There are other people that they're like, I'm waiting for that alarm to go off to tell me my heart rate is high. So they get stressed and anxious and the heart rate goes too high because they're stressed and anxious about it. So you have to know the person. But the first thing I do is try to let's kind of figure out your baseline. So many people are in, I call it low grade PIM. And it's my term that's not scientific. This is just something I say because it resonates with me. And so they'll tell me, yeah, I work and then I come home and I'm so tired. I don't even want to cook dinner. So I'll lay down and half the time I fall asleep and I get up and go to work again. Do you feel good when you're on your way? Not at all. No, I feel terrible. So I work, I work weekends on Friday and what do you do on the weekend? I mostly on the cows or I'm in the bed all weekend. So they're just all they're doing is working and they do that because they have to to survive. And they're in PIM the whole time that they're pushing and pushing and pushing. And then it starts to become now I have to miss a day every so often and then next thing they can't go into work at all because their baseline just slowly gradually gets lower because they're constantly in PIM. But it's not that obvious. Oh, I went on a hike and 24 hours later, I was very ill and I was in the bed for four weeks. That's obvious. The other is not so obvious to people because they slip into this. They know something's wrong, but all they're doing is keeping their head above water and surviving. So I'm like, let's step back and analyze. And if there's any way, one thing I like to do in some people, again, depending on the situation, if there's any way at all, what can we do to how do you maybe not do work for a couple of weeks? Let's see where you are. If you don't do much of anything, except when I stay home rest, do your basic activities, are you in PIM? Do you feel better? Does that improve your symptoms? If it does, and we can kind of gradually increase your activity, that's in a perfect world where we have support systems for people who are sick and they're not going to get into a financial crisis because they miss work. I had someone to talk to yesterday. She said, I absolutely cannot do it. I cannot. So I said, okay, let's see what we can do. So can we? What can we reduce? What can we ask your family to do for you? Let's get your activity level down, try to get it down low enough so that you're not constantly in PIM. That kind of gives you a baseline. And then you can expand from there. I'm feeling, especially if you have this routine, I saw something someone had posted on Facebook and I thought, this is a great idea if a person can do it, is to kind of keep the same routine, the same activities. And then when you go out of that, at what point do you have a problem? So that's one way. Another way is to use that heart rate. Remember, we have our HRV and we have our, you know, our resting heart rate and what is your heart rate right now. The HRV kind of gives you trends. It's more of a long term picture and your HRV, you want to hire the higher the number. Everybody has their own number. I'm not saying you have to be at a certain number, but like if you're at 50, normally and you start to notice, huh, it's been 48, 47, 45, 42, uh oh, you're doing too much. That's your signal to let's get things back on track. If you wake up in your heart rate is normally 60 and it's 90, that's today. Today we have to get back on track. You know, today don't go do the things that you had planned, maybe. So those are some ways that you can notice what's going on. So that's kind of how to recognize it, but then what are we going to do to try to not have them, right? What can we do? What are the little things that we can do? And if you have an occupational therapist or a physical therapist who is educated in post-exertional malaise, that's very helpful. It can be the opposite of helpful if they aren't familiar. So be careful with that. But if you have some, they're gold, they are golden. The ones we work with at the Bateman Horns Center, I just gather nuggets of wonderful information from them all the time. And that's because they're able to offer just simple practical advice to patients on how to tailor this particular lifestyle. So maybe drive at this point instead of walking or shower chair. That's one of those things that people don't, it's, it, I'm always like, do you use a shower chair, right? What? No. Get a shower chair. You can stand in the shower and sometimes people go, but I don't want to do that. It makes me feel like an invalid. And that's a terrible word, but that's what people will say to me. But you're not. You're trying to conserve your energy so you can eat dinner with your family tonight. Think of it that way. Think of what you want to do. What can you give up or what can you get rid of? One patient I had, I was telling her about pacing and I said there's things you don't like to do that you, that are just obligatory that aren't necessary. Don't do them. She said, so I don't have to listen to, she had a coworker that used to call her and just talk for an hour about stuff she didn't like. She said, I said, no, stop. Don't listen to that. She was, she, it was funny because she was like, oh, this is great. This is relieving. I'm just going to stop all these things that are unnecessary. So, so prioritize. Think what you really want to do and save your energy for that. Thing I said, that is one thing that I've always said chronic illness gives you is, yes, because you are only able to give your energy to certain things. Really, really focus and make the things that you give your energy to, the things of highest value to you. And it really enables you to reframe your life in terms of who gives me energy, who am I going to spend time with that helps with my energy, not drains it. What are the activities that enhance my energy rather than drain it? I know that's a perfect wild situation and we all have to do jobs and we all have to do chores. But that balance of finding the things that don't drain you. Right, right. And that's something I'll talk about with kids. So, this is, this may not be such a popular thing to say, but I think school's very important. I think learning is very important. But if you have a child who is becoming more ill because they are in school, then we need to modify what they're doing. Don't just say, okay, you can go home and not come in and I'm going to give you all of the same assignments. That's actually harder. That's what happened with my child. Here's all your assignments. Now there's no teacher to help you with them. Yeah. And no friends, none of the kind of joy that you would get. Right. Let them have the social activity. Again, it depends on the severity. If it's a person who's mild, that's different. But if you have a person who's moderate, severe, very severe, I want them to have the 10 minutes with friends rather than 10 minutes of math. We'll get to math later when they're when they're improved. And that's my hope. They're going to be improved. But figure out those things that are important to you. Think about the extraneous things you're doing like. I'm going through the grocery store. Yeah, I like to pick out things, but is it really that important to have to handle the fruit? If you can save the energy and get it in a quick list where you pick it up or they bring it to you even better conserve your energy and my daughter Litz-O-Stairs. I said okay when you come down bring your your plate down You know if you come down bring it with you don't go back up and do that bring it at the same time do things that are efficient Work smarter not harder. I used to work harder not smarter Not not intentionally, but that seemed to be my policy So now I'm trying to work smarter or not harder anyway you get it But but try to be efficient sit when you when you can if you're doing laundry don't stand and do it sit and do it When you're studying you know recline getting a recliner with your feet up because you get blood flow to your brain You can think better and does isn't so fatiguing turn off the Extraneous noise don't have the dog barking in the background Have a lamp instead of a bright light overhead when you're doing your homework those kinds of things Anything do remember everything we do consumes energy eating Adjusting food consumes energy, but the lights you're consuming energy when your brain is processing those lights The noises the sounds emotional things whether good or bad and that's a particularly cruel thing right? I'm excited because my friend had good news and now I'm in Pym What is what is this disease? It's just incredibly cruel and In addition to that emotional the the cognitive because I think cognitive pacing is a massive area where Adults particularly fall fall down Because they feel well, I'm not physically done anything I haven't exercised but I have sat on my computer and worked for eight hours and then they wonder why they're still getting the physical Exacibation right right it's hard to put this together the most of the time cognition doesn't father you so this is a new concept What happened? It's funny because sometimes when people tell me what they're doing in And again, this is not a criticism. It's just interesting to me how I can go oh There's a pattern there and they're like I never thought of it like that again because they're not used to thinking about life in this way It's just so different. So it's hard. I'm telling you if it were me I'm slow to the table to figure things like that out. I just keep trying to bulldoze my way through that does not work But it's just it's hard and again you throw in brain fog It's hard to figure some of this out. Yeah, it really is So how can people recognize if it's actually a cognitive or emotional thing that has pushed them into pain when they're there frustrated thinking but I've rested so much physically I've sat down to cut the vegetables and I've driven instead of walked and I haven't done any exercise. I've not done anything physical How can people then start to recognize that possibly it's that cognitive? So one thing is keeping a log I know that that's hard to do. I know that it's hard to keep a log But if you can even just simple you don't have to write out the whole thing but maybe the day bad day went to the store Say it on the computer three hours and just you can kind of start to pick out patterns look at that So let's say you kind of have done that on Friday you experience PM now you can go back and look what did I do? Monday Tuesday Wednesday Thursday and start to see a pattern cognitive clues can be things like like when you're doing something cognitively and I had I have one patient who says I know when I'm reading because part of her job is reading She says I know when I have to go back and read Senses is over and over again. I know I have to go take a blade or I can't concentrate I'm losing my train of thought or maybe other types of cognitive activity I'm having more trouble finding my words. I feel fuzzy Those kind of symptoms are the clue to slow down sometimes just check in with yourself And how often you check in with yourself is depends on how ill you are if you have mild MEC of us and You normally can do your work on your computer 30 minutes checking at 20 minutes how my feelings every and my still is good nails I was 20 minutes ago if you're feeling like you're fading. Okay. Just taking the time to think about it Just doing that and I'm really big on setting timers for things like that Like during activities whether they're cognitive or physical With my daughter because I have found that hope is always there right and sometimes we would do something and I was so hopeful because she's having a good time Everything's great. I see she's experiencing something and I'm like, okay, let's just keep going and then on the drive home was That sick feeling that She would become quiet and I would know oh no I've let this happen too far. I am not to be trusted you cannot trust me for that you have I have to set a time on we decide before we go Okay, it's gonna be 20 minutes that we are at the dog shelter because as usually we were going to see the dogs at the dog shelter And we would go pet them and play with them right and so now I'd be like at 20 minutes. I let her know we have 10 more minutes And she learned at 10 minutes we were leaving that's what we had to do I had already thought and decided I did I can't make the decision in the moment can't do it Do you think that employing that kind of strategy where you are actually Reducing what you think in that moment you possibly could manage you're putting that time limit on it Does that strategy help you incrementally increase that over time? I think the less you're in PIM The better everything is because you're not having those symptom players Your medicine is working better. You're less stressed You're less upset you're less anxious because I mean I can't imagine I can't imagine what it must feel like For your body to betray you that must be very scary and Not having as many of those feelings has to help right and so with time just like Repeatedly crashing you start to cycle downward I see that people when they aren't crashing start to cycle upward and everything starts to come together right I had a patient who we had done a lot of things just in a pretty decent place You still had the occasional flare the occasional PIM And she started really I hate you as a word aggressive because doing anything aggressive when you have mcfs is hard or long COVID and I say that term anyone who has PIM okay So she started she would every day she would take a break mid-morning It's just kind of moderate she was moderate more housebound But she could do little things around the house. She didn't do the shopping. So that's kind of her baseline So she started taking a 15 20 minute break in the morning mid-day and afternoon and on Wednesdays the whole day was break And she said after about a month or two she said I am feeling better My you know, she's a little bit better, but if nothing else she said I am enjoying everything more because I feel better when I'm doing it And my quality of life is improved and the other thing was she was empowered She was like I have more control over the disease rather than the disease controlling me And that met a lot to her and so I really want to help my patients and I want to help people listening I want to help you gain some control of your life again Because again, that's one of those things that really hurts my heart to know I can't imagine how that feels I can't to a degree because I know how I have no control sometimes with my daughter I can't I should be able to fix this I should be able to fix this But I can't So here's what we can do Yeah, the strategy is it is a horrible feeling when you you can't trust your body So I think that is hugely powerful tool if you can Give people some sense of agency over their own bodies and lives And What you're suggesting here is not actually going and Seeking the most expensive medical care this is strategy That people can employ themselves at home right obviously it's helpful if you have someone like Amy Meenie to refer to and there as guidance in your clinical care guide over this but Just those ideas that you've put there that people can take and it might not be The grocery store or it might not be 50-minute breaks in the workday But trying to take the essence of what you're saying in terms of those pacing strategies and apply it to their own lives Mm-hmm. I know with cognitive impairment it might it might be challenging Maybe sit down with a family member or loved one to try and and build something together There are tools there In terms of for those people that that might be able to afford it and I know that we don't want to dismiss the people that can't you mentioned earlier wearables And using that kind of thing now This podcast is bought to you by visible and we're never here to Promote a product. I am here to distill the science and the information to everyone But in terms of wearables you actually have had experience with your daughter and patients Can you talk to us about how that wearable data or these sort of devices enable patients to focus on some of the those pacing elements that you've talked about. And some of it is not just the actual data that's coming in, it's the data that they're in putting because it helps create a framework for that journaling or that record keeping. - Right, so most of my patients have some sort of awareness and I really like it because a lot of times they can download the information and send it to me in the portal and I can look at patterns, you can look at their sleep, their HRV, the HRV is kind of a more long term number that I look at and they can look at, but we can start to look at patterns that way. Visibles new for us, we just got it. My daughter has never wanted to do a wearable and I said, "Keep seeing, I have patients that have this, they really like it, I love the pace points thing, I love that." I think that's so cool. Again, numbers, I'm a numbers person, so that would be really helpful for me. And she said, "Sure." Okay, so she got it and before she's been very resistant, she got it and she brought it down to me the other day and said, "Can you tell me what this means?" And what's your HRV, she went, "Oh, my mind was." And we were comparing who wins. And so that we were looking at all that and then she said, "But you are old, so yours would be different and all these guys, she didn't say it like that, but that's how I took it." So anyway, but that was really exciting to me that that information was helping her make good decisions. And it wasn't me having to help her make good decisions. She's a young adult now and it's hard because when you start out at 10, sick, it's hard to, it's just, it's hard. And so I'm at the point in my life where I'm trying to teach her how to navigate and manage on her own because that's my job, right? To teach her how to be independent on her, what if I'm not here? So this is helping her instead of me being that voice that's like slow down, slow down and that becomes annoying after a while. So now she is able to be a bit more autonomous with it. I tell you another thing that was really helpful. So I've tried to get her to do breathing exercises for years. And there's a place on the visible app where you can do a breathing exercise. And so we did that and she had positive feedback with heart rate. And so, hmm, okay. And I said, so let's look at your sleep. And let's do this for a couple of weeks and let's see if your sleep changes. And we did and her sleep improved. And she could see kind of the correlation. And so that has reinforced the importance of the breathing for her. That was huge for me. I've tried to get her to do this for a long time. So that was amazing. That was pretty amazing. A, we'll try anything out there. I'm always trying things. And I have had a lot of things that are disappointing, but that was really cool. That was really neat. I feel I don't want to sound like I am running a commercial. I really don't, but the price point is not horrible at all. So I, that I think. To the other state. My patients are using it. And I didn't know what the price was until I bought one. And so I was like, oh, well, this isn't too terrible. And I feel sometimes I am everyone's mother. I feel like I try to be everyone's mother and it's not my job. But I still have that mothering instinct. This one, like, okay, we've got to save your money. We can't spend all this money. I just wrote three compounded things. So now I can't tell you to go get a wearable because I've just asked you to spend $1,000. Because, truly, that's hard for people. It's easy for me to say, go do all these things, but you have to practically do it. And so I try to think about those things, but it really wasn't bad. So I can't remember what it was, but I remember being pleasantly surprised. - The thing with that is whether people choose visible or another wearable is that rather than relying on your mother or on your physician or on completely intangible measures, what you're getting there is data. And while it's not everyone's brain is necessarily geared up to understanding the intricacies of data, there's something about it that corroborates what you're going through. It almost gives you a readout that's reflective of what's going on in the inside of your body. And I think that validation can be hugely important for people. - That's not to say that the physicians like you are not validating patients, but just to have that on a day-to-day basis, not only once every six months when you see a physician is huge. - Well, I mean, people who have this disorder, I see them gaslighting themselves. And it's because they're being gaslit every day by peers and family and unfortunately, healthcare. And so they start to doubt what they think, they start to not trust their instincts. And this helps them get that back. - Yeah. - And so it helps with that. And again, that feedback. And also here's another thing. If you can start to recognize, like you see that HRB dropping, now that's a cue to you, what am I feeling? You may be surprised and go, oh, it's causing this or that symptom. This is in what I thought going into PIM would feel like. Now I have another clue. And I was on a hype with someone who has post-exertional malaise and they said, I need to go back to the car and are you okay? Is your heart rate not a teeth hurt? Your teeth hurt? Okay. Then we did this whole conversation. And then I started asking my patients, you teeth ever hurt when you're in post-exertional malaise? It was not, it was more yet. - Ton common. - Yeah, it was not uncommon to hear it. At least in the five or six that I asked, about half said, oh yeah, I do that. Or my tongue hurts or something mouth related. It was really interesting. So just start you can use that and go, okay, here's my numbers. I'm going to start slowing down now, but what am I feeling right now with this low number or this number, this not optimal? - And I think that's an interesting point to make because sometimes that HIV reduction is considerably prior to the real symptom exacerbation. So if you can notice that the HIV is dropping before you get into the real depths of the crash, do you find that patients are then possibly able to bring themselves back before they fully enter PM? - I think it's possible. It depends again sometimes on how severe they are. If they're severe, it's a little bit harder if they're more mild and it depends again on how much they rest. If they go all in, they're able to take the day off and just really spend at home kind of sitting on the couch, lying on the couch. There's so many variables it's hard to say, but yes, in some instances for sure. And if nothing else can lessen it? - Are there any other things that you'd like to share with people when it comes to really trying to get a handle on this idea of pacing and avoiding PM? - Yes, healthy eating is very important. And people, what kind of diet? Well, to start a healthy diet, just a healthy diet, heavy with fruits and vegetables, organic wash them, all the chemicals that are foods that are sprayed with, you know, you wanna, there's, and I won't go into it 'cause I can't really remember now, but if you do a Google search of which foods are most likely to have pesticides, there's like a list of 10. And you can figure out, okay, so maybe I want to avoid those and go more with these, but try to be healthy when you're experiencing PM or going into PM, even this, I mean digestion takes up energy, right? So do things that maybe are a little more easily digestible that you don't have to chew so vigorously. If your severe chewing can be difficult, swallowing can be difficult. So you want things that are easier to swallow, things that are easier to eat, soft foods, things like that. Don't eat spicy foods in PM. It's just more things for your body to experience the sensations, et cetera. So healthy habits, controlling your triggers, for like if you have MCAS, MCAS can trigger PM. So you want to try to avoid your triggers, try to identify your triggers. And again, sometimes I say things in like, oh boy, that's a hard thing, but I'm going to ask you to try to do it, is to try to reduce your stress level. Stress, when you have stress, your body releases cortisol. Mass cells have a receptor for cortisol releasing hormones. So when you're in stress, you activate your mass cells, which can activate and worsen your pots. So you can see the spiral that can occur, that can lead to PM. So trying to do things like that that are healthy, focus on you. Do the things that are healthy for you. Do the things that keep your peace. And that can be very helpful. Okay. In an ideal world, there are all many things that some people will say, these are really not options for me, but I just want to reiterate you're saying, do as much of them as you can, to try and get your body back to some sort of homeostasis. Right. Right. And hopefully the more of these strategies that you can implement in the immediate term, it can enhance things in the long term. So we're talking about instead of living for the rest of your life with this severe situation, perhaps implementing some of these strategies now might enable sooner for your life too. Be improved. And again, sooner to have some control for you to control, not it to control you. And let me say though, to sometimes this disease is cruel and you can do all the right things. So I don't want anyone to feel like if I'm, Thank you. like they're doing all the right things, that's a failure on their part. Sometimes this disease is just cruel. But if there's any way to enlist other people to help you to figure out those things, like with OT, that can be helpful. Dr. Melanie, this has been such a pleasure. I feel like we're only scratched the surface of your knowledge and your clinical experience and your experience as a mother. But I hope that what we have given to people is a little bit of a guide of how you can start. And I guess the biggest thing for us to say is do you check out the resources at the Bateman Horns Centre because it is a remarkable organisation. And the primary function is to help people to drive this forward. So absolutely. Thank you so much Dr. Melanie. Thank you so much. So you, my listener, if this conversation was helpful to you and I think it's so packed with ideas and tips and genuine lived experience, if it rang true, if there are nuggets in there, please can you go and share it with someone for whom it might actually make a difference to their day, for whom it might make a difference to their illness and their life. It would be really, really appreciated because actually what people like Dr. Melanie are trying to do is help as many people as possible. And by creating these podcasts, by creating these episodes, we're trying to spread that information more widely than a single individual or centre can do. The Bateman Horns Centre is an absolutely phenomenal resource. Check out the show notes for links. But if we can play a part in sharing their knowledge and spreading the understanding of these conditions with this podcast, we are helping not only them as an education centre, but we're impacting the lives of people with complex illness. This conversation was actually prompted by a listener who responded to our Rob Vust episode, episode 17, which dealt into the scientific understanding of post-exertional malaise asking what we are supposed to do about it. I say this is the first in what will be multiple conversations from different practitioners to really try and give you the tools to pace and make steps towards understanding what you can do on a daily basis to try and alleviate your symptoms and regain some control over your illness. So please share this episode, review it, leave a rating, give me feedback, engage with us so that the information here has the greatest impact, the greatest reach, and we will continue to bring you the brightest voices in this field. Thank you for listening to Make Visible. Please do like, follow, or subscribe to listen to our next episode where we'll be uncovering more insights into complex chronic illness. This was brought to you by the team at Visible, a group of scientists and engineers whose lives have been affected by energy limiting health conditions. We're building wearable technology that's helping a hundred thousand people measure and manage their complex chronic illness. To find out more about what we're working on and how visible could help you, visit our website at makevisible.com.