136 - Dr Meg Anderson - Movement in Long Covid - Part 2 - "how to"

Episode 136 of the Long Covid Podcast is a continuation of my chat with the fabulous Dr Meg Anderson about movement in Long Covid.

In this episode, we talk more about what that movement might actually look like and how to tailor that.

The previous episode, where we talk about "getting ready" for movement is definitely worth a listen HERE

Links:
Meg website: www.risingtidesrecovery.com

Application for group program Energy Expansion Project: https://mailchi.mp/2362788d68fa/energy-expansion-project

Depaul symptom questionnaire for PEM
"Muscle abnormality worsens after PEM" Appleman & colleagues
Workwell foundation guidelines for HR

For more information about Long Covid Breathing courses & workshops, please check out LongCovidBreathing.com

(music credit - Brock Hewitt, Rule of Life)

Transcript

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Jackie Baxter  
Hello, and welcome to this episode of the long COVID Podcast. I am so excited to have Dr. Meg Anderson back with me today. So we spoke quite recently in our previous episode, where we talked a load about exercise and movement and kind of how to know if it's appropriate for you. So that's a really interesting conversation that I would totally recommend you checking out, I will link it in the show notes, possibly before listening to this one or certainly, as well as. 

Jackie Baxter  
So today we're going to talk a little bit more about, well, how do I actually do that? What does that look like for you? What does that look like for me? And, you know, some sort of things to look out for? So welcome back, Meg.

Dr Meg Anderson  
Hey, thanks for having me back, Jackie. Yeah, you know, it was so interesting, after the last episode that we did, I think we both had that sense of like, man, there's just so much more. Right. And I mean, we could say that about anything with Long COVID. There's just so much more. But there's definitely more to this. 

Dr Meg Anderson  
And really want to make sure people have a practical understanding, especially in a world when this topic is so controversial, right? Because there are people who benefit from exercise in certain moments and people who don't tolerate it. So really good to just put a little bit more context in and, and like you said, you know, we already spoke before. 

Dr Meg Anderson  
But if some of you are catching this, and you haven't listened to the previous episode, as Jackie said, you know, my name is Dr. Meg Anderson, I'm a Doctor of Physical Therapy in the United States, I've been practicing as a PT, or physical therapist for over 10 years. And since the pandemic started, I've been working with severe acute COVID cases in the hospital and then eventually transitioned to working entirely with just people who have Long COVID. 

Dr Meg Anderson  
And so I've been doing that for over three years now and doing entirely virtual and remote to provide this help for people. So this has become my my bread and butter, I guess you could say. 

Jackie Baxter  
Yeah, absolutely. I agree. And I think it's a really difficult topic. Because I mean, you know, you could again, say that about every topic with long COVID, because everybody is so different. And what one person can tolerate isn't necessarily the same as what another person can tolerate in terms of breathing exercises, nutrition, literally anything. 

Jackie Baxter  
But obviously here, we're talking more about movement, and how to know that that's something that's appropriate for you, or when to notice that that's something that's appropriate for you, I guess.

Dr Meg Anderson  
Yeah. So I think you hit the nail on the head when you said "when" it's appropriate for you, right. And that's kind of what we spent a lot of time talking about in the last episode, is that knowing how to get ready for movement and exercise, when it's right for you, and kind of these pillars that need to be hit before getting there. 

Dr Meg Anderson  
And we you know, just briefly, you know, in case you're catching this, before getting to that one, we talked about, you know, metabolic needs, so nutrition, pacing, medical stability, and breath training, kind of as the foundation. 

Dr Meg Anderson  
But here's the thing, like, once you kind of get that handle and you feel like, okay, I'm in a place where I think I can move more, I think I want to try moving more in some intentional way. Because that's really what exercise is, is intentional movement with a purpose. The number one thing that you really need to know, is that you need to know if you have post exertional malaise. 

Dr Meg Anderson  
And I think that's an important concept that not everybody fully understands or learns right away, or it takes a little bit of time for them to realize, and, you know, we'll talk a little bit around that kind of understanding the post exertional malaise component. But one thing I wanted to say up front is that when it comes to long COVID, and even post exertional malaise, I think there's a lot of talk that or maybe fear around, if you have PEM, it means you can never exercise. 

Dr Meg Anderson  
And that's really not the case. Okay? Because, like I said, right now, may not be the time for you to exercise but it doesn't mean never. Okay, and I think that's an important piece to really understand is that right? Yes, now may not be the moment for you, but it's not off the table entirely right there. I think there are still ways that you can optimize your body to be able to then be ready, even with post exertional malaise to incorporate movement. 

Dr Meg Anderson  
And then, you know, that was kind of what we were touching upon in the last episode, but then also just Understanding how movement can help post exertional malaise when done appropriately. So, I think that's kind of an important piece to say is that, again, there's a lot of talk that it needs to be like this black and white, if you have post exertional malaise, black and white, you can't exercise boom, done. Right. And it's a lot of gray area, you know, which makes this tricky. 

Jackie Baxter  
Yeah, I think you're right. And I don't know, if I'm totally taking this off in a bit of a tangent here to I mean, I almost certainly am, because it's me. But I mean, post exertional malaise, and then we're obviously talking with long COVID, this is something that no one... when you get long COVID, you will never have experienced this before where it you know, it's completely inproportional to the activity that you've done. 

Jackie Baxter  
So for example, you claim your stairs, and it puts you in bed for a week, you know, that is that is not a normal reaction. But also, and this was something that I kind of had to work through as I was coming out of Long COVID, was that actually, when you do something, especially if it's something that's a little bit more than you've done before, then you are going to notice, your body is going to go, okay. So, you know, if you are increasing your activity, you are going to feel more tired. 

Jackie Baxter  
So I suppose maybe what to work out, and the problem is, is my reaction to this activity proportional or not? And what does that look like for different people? Because it's not always going to be the same. And is it a problem? Or is it not? I suppose that that's got to be something to think about?

Dr Meg Anderson  
Yeah, absolutely. And I think that kind of touches upon, again, what I mentioned in our last episode is in order to kind of find that medical stability and being ready for movement and exercise, is really having a foundational understanding of your current response to anything or activity. And really knowing your body and getting in touch with it to understand, okay, I have post exertional malaise, right, and we can talk about what that is, if you're like, Well, what is that? You know, I don't really know, I'm just tuning in, I, what is that? 

Dr Meg Anderson  
But you know, I have post exertional malaise. So when is my onset is my onset - 12 hours, 24 hours, two days later, you know, when is my onset? So I know what my window is, and what to look for. When does my post exertional malaise peak? Because some people, you know, okay, it starts the day after, but maybe it doesn't peak, it keeps increasing, and you know, until day three, and then it starts to tail off. And then okay, then how long does it last? Okay, I know that usually about six days, is the course that it takes. Okay, and then I'm kind of out of it. 

Dr Meg Anderson  
So I think that's really important to know and understand, because then that helps with self monitoring, whenever you're introducing anything, any activity, whether it is some form of natural movement, or a little bit more of a structured formal exercise. And again, like I said, coming back to, what is this post exertional malaise? Right? 

Dr Meg Anderson  
And I think you and I live in a world where we hear it all the time. So you know, it's like, well, well, duh, like, yeah, of course. But, you know, there, there are plenty of people who are coming into this, that, you know, maybe they just had their fourth infection, and now they're getting long COVID, or, you know, or maybe they're just getting long COVID. Or maybe they've had it and they've haven't had the knowledge and the information, and now they're starting to put it together. 

Dr Meg Anderson  
So to really understand that, like you were saying, Jackie is, it's an abnormal response to an activity, meaning it's like out of proportion, right? So you would think, if I ran a marathon, I should feel like really sore, really exhausted, like really sweaty, and like, you know, like I really exerted myself. You shouldn't feel that way when you're doing your normal daily activities, right? That would be extreme and out of proportion. So that's kind of what we're talking about. 

Dr Meg Anderson  
So some some signs, or some things that people can experience for post exertional malaise is extreme fatigue. Right. And the thing about it is, you might feel fine totally in the moment, and I think that's what's scary for people with movement and exercises. They're like, but I felt fine. Right? Like, I didn't feel anything. I felt fine. It felt good. And then later on, or the next day, I could not get out of bed. I could not keep my eyes open. I could hardly hold my head up. I was so wiped out right. So there's that version and because there's a delayed effect. 

Dr Meg Anderson  
But then there's also the the version of which is post exertional symptom exacerbation or PESE. And that's where, okay, yes, there's maybe this fatigue component as well. But you might have a flare and a whole host of symptoms, GI upset, so like maybe you're more constipated or maybe you're having bouts of diarrhea, or maybe your your breathing changes, you're more short of breath or more chest tightness, heart racing, maybe numbness and tingling, like just these whole host of random symptoms, right. So that could be another version. 

Dr Meg Anderson  
There's even another version, which is more along the lines of looks like you think you have a cold, or maybe you got you just got the flu, right. And those are like those constitutional symptoms, which we call like, you know, chills, fever, headache, you know, just body aches, things like that, that can also be a sign of post exertional malaise, and that's more of the post exertional neural immune exhaustion. So there's like a couple of different versions of this. 

Dr Meg Anderson  
So again, bringing this back, it's really important to understand the central question, which I think helps people understand, do I have this or not? is, you know, answering this question - does exercise or activity positively affect you? Right? And if the answer is no, then you really need to start thinking, Okay, do I have post exertional malaise? 

Dr Meg Anderson  
And if you're thinking that, then, you know, possibly the next step is either doing it yourself or asking your physical therapist or your doctor to help you fill out the DePaul symptom questionnaire? Because this can help with identifying if you have post exertional malaise, for sure. 

Dr Meg Anderson  
But again, bringing us all back, like I was saying, it's understanding your version of PEM. Right? Because there are different versions, different severities. So really knowing, okay, if I do something, how much later does it start to come on? Okay, so you know, what window to watch for? And then, okay, it starts, then when does it peak? And when does it end? Because then that helps you start to plan, how to introduce movement. Right. And I think that's the way to start off

Jackie Baxter  
How do you class, the sort of PEM that starts while you're still doing the activity? I mean, does that actually class itself as PEM? Or is that something else? Because, you know, there's definitely the thing where you sort of, you're gonna walk to the postbox and back, and you get there. And you turn around to come back and...Oh. So is that actually PEM?

Dr Meg Anderson  
Yeah, so no. So you know, by true definition, PEM is like a delayed onset. Because by definition, post exertional malaise, like, after the exertion you feel unwell. So during the exertion, right, if you're starting to feel unwell, it could mean that you are triggering PEM. Right? 

Dr Meg Anderson  
And again, I think it depends on the person because I have had some people that said, like, oh, you know, I took my niece out for a stroll just around the block, and it didn't feel good when I was doing it. But I didn't have a crash. Right? You overexerted but you didn't go into the point of PEM. And I think that's the thing that is, again, that gray area, right? That not every single time that you experience symptoms means that you're going to have a crash, or you're going to have PEM, right. 

Dr Meg Anderson  
However, I think no matter whether it's PEM or not, you shouldn't be feeling those symptoms when you do an activity. Right. And I think that's kind of what can help us maybe segue into understanding why it's so important to avoid post exertional malaise.

Dr Meg Anderson  
I don't know if you're familiar with this, but it was in January, there was a study that came out, it was titled "muscle abnormality worsens after post exertional malaise in long COVID". It was by Appleman and colleagues, and it was a really great paper and what they did was they took people who had long COVID and intentionally had them over exert. So intentionally, and then they took muscle samples to see what happened and they took blood samples to see what happens. 

Dr Meg Anderson  
And we know that when post exertional malaise is triggered, when you go to maximal capacity of exercise, and post exertional malaise is triggered, there are muscle abnormalities that happen. There is a catabolic breakdown. And there was even, you know, examples of amyloid plaques building up. So we know there are physiological, chemical and structural changes that happen, which is why it makes it so dangerous. And why there are people who get significantly worse in response to exercise. 

Dr Meg Anderson  
Now, the interesting thing, this paper was super controversial, you know, it opened up again, more conversation about exercise. And the thing was that one of the co-authors actually came out to defend it, because people were saying, See, this means you shouldn't exercise. And one of the co authors came out to defend it, and say that the study was not designed to study, like the nature of submaximal exercise, or sub symptom exercise, right. 

Dr Meg Anderson  
So it shows that there's danger of over exerting. But it didn't study what happens if you just do a very little in the range where you don't have symptoms. That's the sweet spot. And that's really what movement and exercise should be about. It should be about moving or exercising in a way that you're not bringing on symptoms, so that you're not causing physiological damage. So that you're not inducing post exertional malaise, right? 

Dr Meg Anderson  
And so that's how I approach it with people. That's how I educate people. And that's really how people should approach it in general, regardless of whether you're intentionally exercising or you're just walking to the bathroom. Right? You know, thinking about, Am I doing something that is triggering symptoms? How can I stay below that level, so I'm not constantly going into the level of overexertion?

Jackie Baxter  
Yeah, and I suppose this is in the same way that, you know, we're using the word Exercise and Movement, but that could include, or, you know, certainly be equal in some some ways to, as you just said, walking to the bathroom, you know, moving between your bed and your couch, going into the kitchen to fill up a glass of water. 

Jackie Baxter  
But also the cognitive side of things, which, certainly for me, was the one that tripped me up because I was so much less able to quantify it, where you read an extra couple of pages in your book and boom, you know, you're actually sort of triggering the same response, but by doing something different, I suppose, aren't you? 

Jackie Baxter  
So whether it's an intentional movement, or an intentional reading two pages of your book, or, you know, whatever he knows, as a stupid example, it's doing it at a level below what is going to trigger you is kind of what we're aiming for, isn't it? You know, in everything?

Dr Meg Anderson  
Yeah, absolutely. And I think you bring up a good point that it really doesn't matter what the exercise is, right? If we're gonna use that word, exercise or movement. What matters is how you apply it. 

Dr Meg Anderson  
Because, I mean, there have been plenty of examples of people who say, I love to dance. And I just do a little here and there, and it makes me feel so good. And, like, it brings me so much joy. I can't do like the big jumps or whatever that I used to be able to do. But I just do a little bit. And they find that through that they're able to improve and open up their window of tolerance. 

Dr Meg Anderson  
And then there's other people who say, I did the rowing machine, right. And then there's other people who said, you know, I did some yoga. And then there's other people who say, you know, I did walking, right. And so what's important here is it doesn't matter what the movement is, as long as it's something that brings you joy, fills your cup, is below the symptom threshold. 

Dr Meg Anderson  
And you follow these principles of treating it almost like a prescription in a way right? And when we think about like medication or prescription, it must have a dose, an intensity and a frequency right? If you think about like a blood pressure medication, okay, frequency, I take it every day in the morning. And you know, intensity could be the chemical compounds in it or whatever. And then the doses I take five milligrams, right? 

Dr Meg Anderson  
Exercise is the same way, you kind of have to treat it the same like a prescription or a medication. What is the dosage okay, it needs to be below symptom threshold. So meaning I can't go to the point where I'm starting to feel my heart racing, or I'm starting to feel brain fog, or things are starting to increase you know, a lot. 

Dr Meg Anderson  
Frequency. Well, I know that my post exertional malaise comes two days later, so I need to build in space for that to see if what I did, I tolerated it. Right? You know, so frequency could be once every two or three days. 

Dr Meg Anderson  
And the dosage comes back to keeping it sub symptom threshold. So how much work does it take to stay below this threshold? And I think that's what changes every day, because you're going to change every day. Right? And so your intensity, like you might say, oh, yesterday, I did the rowing machine for five minutes. And by my rate of rowing was, you know, 30 cycles per minute or something, right? 

Dr Meg Anderson  
So you're saying, Oh, great, I can do 30 cycles per minute, for five minutes. Well, then the next time you come around, you're a completely different person. And if you go to do 30 cycles, for five minutes, you might over exert, because your body is different that day. And so it's more about changing your intensity. Right? So some days are slower, some days are a little bit more to stay sub-symptom threshold.

Jackie Baxter  
Yeah, and I guess that's kind of the tricky bit, isn't it. Because if you use your prescription medicine analogy, it doesn't matter how you feel that day, you're still going to take your five milligrams of whatever it is. And you know, that's a done deal. It's just something you do every day. 

Jackie Baxter  
Whereas when we're doing movement here, well, I walked for five minutes yesterday, therefore, I'm going to walk for five minutes today, and five minutes tomorrow and five minutes the day after and I'm going to do it at nine o'clock in the morning, because that's what it says on the box. It's not going to work like that, because you may not feel able to do it at nine o'clock in the morning, whereas you could do it at two o'clock in the afternoon. 

Jackie Baxter  
But also, as you say, the intensity and the length, and all of those other things are potentially going to change as well. So how do we know how to judge that? I mean, you know, there's there's going to be some trial and error, right? But also, you know, ideally, we would want to be able to well, even you know, learn from those errors, if nothing else.

Dr Meg Anderson  
Yes, there is trial and error involved in I think, you know, that's something that you have to be comfortable with. So there are circumstances where yes, there have been times when exercise has permanently changed someone's baseline, meaning that they did the exercise, and then they actually never came back to where they were before that exercise. And it happens. Right now we don't know who or why. You know. 

Dr Meg Anderson  
And so there is some inherent risk here. In that, I don't know if I'm going to be one of those people, I will say I don't know, the specific percentage, except I do know it is lower than those who have a temporary decrease in baseline. So there is some inherent risk in that trial and error. 

Dr Meg Anderson  
And so that's why I guess you do need to build in, okay, there's a chance that when I try this, it's going to make me feel worse. But from previous experience, I know that when I've done certain activities, it's temporary, and I come back to a baseline and then I figure it out again, right. So yes, there is some inherent risk. And it's convincing yourself and understanding that it's temporary. Right? 

Dr Meg Anderson  
For the most part, I can't say that for every single person. Again, I would love more research on knowing, you know, some biomarkers, hint hint, anyone out there with a research lab. So here's the thing, the way that I usually introduce it with people, okay, is we establish a comfortable plan that the person feels good about, that they feel confident with. 

Dr Meg Anderson  
Because really the first time that you introduce some type of movement, it should be so small and so easy that you come out of it, you're like, did I even do anything? Right? Like, because you really just want to get that exposure and that rep under your belt that says like, okay, yeah, I can do this. Right? You kind of have to convince your body and your brain like, yeah, we can do this. Okay. 

Dr Meg Anderson  
And so, a lot of times I use heart rate to help with guiding people. There's guidelines from the workwell Foundation, which puts out guidelines for MECFS in terms of understanding the anaerobic threshold limit. 

Dr Meg Anderson  
Not to go down like a whole rabbit hole of anaerobic threshold. But basically, it's that limit of where you transition from using sustaining energy resources to short non-sustaining energy resources. So it's the difference between using the quick energy for a sprint, versus like the energy for a marathon. 

Dr Meg Anderson  
And what we know is that people with long COVID and MECFS have a significantly lower anaerobic threshold. So that means that they switch over to their short reserves, right, their sprint reserves much sooner than other people. And so they're just depleting themselves much faster. 

Dr Meg Anderson  
So anyway, so I use the information from the workwell foundation to set target heart rate zones for people. And what they basically suggest is no more than 15 to 20 beats above your average resting heart rate. And that sounds crazy, because let's say your average resting heart rate is 70. Okay, so then, that means when you're doing activity, movement, or exercise, you shouldn't be going over 85 to 90, or you should be trying to stay within that window.

Dr Meg Anderson  
And you're like, well, Meg, when I stand up, and I get out of bed, I shoot up to 110. What do you mean, I have to exercise or move at 85 to 90, that's not possible. But really what you want to do with exercise, it's how low can you go? Okay, it's not how high you can go, we know your heart rate can go high, no problem. That's not the issue. We want to train it to stay low. So it's how low can you go, right. 

Dr Meg Anderson  
And so that's why typically, I start people off, and I say, All right, we're gonna do I don't know, we're gonna give the example of marching, lying down picking up your legs, or lifting your arms, and you're gonna keep your heart rate below 85 to 90. And you're gonna do this for maybe 30 seconds to a minute. And we start so low. But that person might have to wait for their heart rate to come down before they can start. Right. 

Dr Meg Anderson  
So a lot of it is what do I do before exercise and after. So you might have to lie down, put your legs up the wall, get your heart rate to come down, and then try the exercise. You might have to do breathing exercises before you do the intentional movement. You might need to eat a snack, you know, to give yourself some energy reserves. Right? 

Dr Meg Anderson  
So there's things you have to do as preparatory beforehand, and then working in a really low threshold. Because again, it's about how low can I go? How can I keep my heart rate low? And you might have to move at the pace of a snail to do that. But that's where the magic happens. 

Jackie Baxter  
So this is kind of like warming up before exercise, except it's almost the opposite, isn't it? It's where like, instead of kind of like, warming up, so you can like go sprint. It's like actually, I need to warm down, I need to down-regulate myself. So I can then do that exercise and keep my heart rate below whatever my threshold is. 

Jackie Baxter  
It's like we were saying last time, isn't it? It's kind of like unlearning, and relearning, and doing things in kind of the opposite way around to what traditionally we might have done.

Dr Meg Anderson  
Yeah, absolutely. Because we learn that in order for exercise to be exercise, you have to get your heart rate up to get the benefits. And that's not the case here. Your heart rate probably goes up no problem. And that is the problem, right. And so what we actually need to train is we need to teach your nervous system and your heart rate to stay low and respond consistently to a normal workload, right? 

Dr Meg Anderson  
So in a normal exercise test, right, so like a treadmill test, or a bike test, or whatever, what they do is they gradually increase the intensity each minute, okay. And then a normal response is that it looks kind of like this nice slope. If you can imagine like a, like a hill, where as the intensity increases, your heart rate should proportionally increase. And that doesn't happen in long COVID. 

Dr Meg Anderson  
And so what we're doing is we're saying, Hey, we're going to keep the intensity really low, we're going to keep it the same. And we're going to tell you your heart rate and your heart that you need to match us down here. And that's how you start to train your heart rate response. And that's how you start to open up your window of tolerance is by saying, hey, I need you to meet me down here.

Jackie Baxter  
And I suppose again, it's like a lot of other things, where, you know, the traditional model of whatever it is, whether it's breathing or nutrition or exercise will say, right, okay, so it's progressive. So you do this, and then the next day you do that, and the day after you do that. And then you do that and you know, you just keep pushing yourself. 

Jackie Baxter  
And you know, I mean, the end game here, I guess, is that we do increase our activity and that we are able to tolerate that. But I think what, you know, people, I mean, people with long COVID, as well struggled to understand, and I put myself in that category, because I pushed myself too quickly. 

Jackie Baxter  
But also, you know, particularly people who don't have long COVID and don't have the understanding of this, is that they don't understand the sort of wibbly wobbly, nonlinear progression. And I suppose how long you need to do a certain level, and be happy and safe with that before you can then increase. 

Jackie Baxter  
But how does that look like? Because, you know, yes, we want to increase, we don't want to increase too fast. We don't want to push people over the edge. And, you know, understandably, there's going to be a lot of kind of anxiety around this as well. So how would you approach that?

Dr Meg Anderson  
I think in order to talk about this, we have to talk a little bit about the Levine protocol and the modified chops, okay. And then also this term, GET, graded exercise therapy. So, graded exercise therapy is basically kind of like what you were describing is like in those traditional normal, quote, unquote, normal, whatever normal is models. 

Dr Meg Anderson  
It's, you know, I do this, and then I do this the next day, and then I increase it the next day. And then the next week, I increase it, and you just keep adding on, adding on, adding on. Okay. 

Dr Meg Anderson  
And that is essentially what the Levine protocol, the modified chops is, is you know, it's this eight month long protocol where week one, you do this much. Week two, you do this much, week three, you do this much. It basically says that, if you just keep increasing and progressing, then you know, you're gonna work through it and give yourself a few months, even if it doesn't feel good to work through it. 

Dr Meg Anderson  
And while that's actually not what we want to do here, and I actually don't use the Levine protocol or the modified chops, because one, it's too aggressive, not only in where it starts off, but how it progresses. It doesn't build in space for post exertional malaise for monitoring for that. Additionally, it's designed to do intervals, right? You're supposed to increase your heart rate, decrease, increase, decrease. And a lot of people can't bring it back down. Like they're not trained to do that yet. So it's too hard. 

Dr Meg Anderson  
And additionally, it actually has a high rate of failure. I think it's like 50 to 60% failure rate in terms of non completion. And honestly, that's because it wasn't designed for the masses, but it's being applied to just about anyone who kind of fits this PoTS or dysautonomia presentation. And when we look at like the research studies for these protocols, they excluded people who had MCAS, MECFS and like hypermobility disorders. 

Dr Meg Anderson  
So it's not made for everyone. And yet, it's like, as if everyone's using it, because it's either being told that they should, or affiliated with, you know, their similar situation. And so, the thing is, it actually has a lot of great principles. Okay, and so I think understanding the principles will help answer your question of how do I move forward. 

Dr Meg Anderson  
And so the principles of the Levine protocol and the modified chops is that you need to start horizontal and work your way vertically. Because if we operating under the assumption that you know, at least more than two thirds of long COVID cases are some form of dysautonomia, then that means you typically have orthostatic intolerance, meaning an intolerance to being upright. 

Dr Meg Anderson  
So if you're intolerant to being upright, you don't want to train in your triggering position. You have to start horizontal. Okay, so, so, you know, it's starting horizontal, and then gradually working up to vertical. But like you were saying, you know, how do you actually know how to progress and when and how much? 

Dr Meg Anderson  
So with the protocol, you know, the rules, because there are rules, is that you need to do it a minimum of three times a week. Because your body wants consistency, and it craves consistency. 

Dr Meg Anderson  
So, I use the similar principles is that the minimum is that you need to do it three times a week. Okay? And you may need to build up to that. Like, you may need to start at once a week and build up to three times a week. But when you can do it three times a week without a crash, then you can say, Okay, I think I'm ready to tweak this up a little bit. Okay. 

Dr Meg Anderson  
But honestly, sometimes, you know, I have some people stay doing the same exact thing for a month. Right? Because it's more about allowing your body to feel good. And to adapt to the predictability of it, then trying to add on, add on, add on, add on. Because you actually feel better by doing the same thing over and over again, for a period of time. 

Dr Meg Anderson  
So, so often I'm like, like, just hold, hold for one more week, come on, hold for one more week, don't increase yet, come on, just hold one more week. Because I think there's more to be gained in not rushing that progression, right. So I think kind of as like, like a loose rule of thumb is, whatever level or intensity you're doing, if you can do it three times in a week, and you do not have a crash, right? Nothing has really changed, then you can look at slowly increasing it. 

Dr Meg Anderson  
And what I say is a safe percentage of increase is like 10 to 20%. So like, let's say, if you were whatever you were doing, you were doing two minutes, okay, let's say you're doing two minutes of biking, then that would be adding on like, let's say, about 20 to 30 seconds. So like 10 to 20% increase, it's such a small threshold that you can easily scale it back, if you have post exertional malaise. 

Dr Meg Anderson  
Whereas if you're like, Oh, I'll add on another two minutes. Well, how do you know if you would have tolerated one minute? One minute, half? 30 seconds? 40 seconds, right. So 10 to 20% is such a small increase that, you know, okay, yeah, I definitely did too much. I'm not ready for that, you know, whereas if you do like a big window of five minutes, you have no idea whether you could have tolerated that increase. 

Dr Meg Anderson  
So I think that gives a little bit of a framework, you know, because again, this is a gray area, it's not black and white. But what I can offer is a framework. 

Jackie Baxter  
And I think, you know, it's always that less is more, isn't it? The motto that I always try to introduce into breathing, but I think it probably works here, too, is that it's better to have been able to do more, than to wish that you've done less. You know, it's much more comfortable to say yeah, okay, well, maybe next time, I'll try a little more than, Oh, no. 

Jackie Baxter  
How does this work for people with long COVID who have fluctuating hormones? So you know, this is ladies of, what you want to call it, reproductive age, or whatever the phrase is, which is quite a lot of people. Because you know, I don't know what the statistic currently is, but a large percentage of people with long COVID are female, and are of that age. 

Jackie Baxter  
Because what we hear over and over and over is actually things are starting to go better, I have two weeks where actually things are quite good, I'm able to do a bit more, you know, maybe I'm able to do whatever activity and I feel good. And then I get into that week where my progesterone is high, and oh, my goodness, everything comes back, I can't do anything. 

Jackie Baxter  
So how do we kind of manage this within your structure, because this is another one of those big fluctuations. And we can't stop it from happening.

Dr Meg Anderson  
We cannot. So what changes is the effort, which is the intensity, right. And so during that, like we're talking about basically the luteal phase, which is right before menstruation. Which is when females tend to notice that their symptom burden is much higher, because of what you were explaining those fluctuations in hormones. 

Dr Meg Anderson  
And so in that case, you still approach and attempt to do whatever it is that you're doing at that time, you know, in your routine. It just may not take as much effort to achieve that heart rate zone or to stay low. You might have to do way less effort to stay below symptom threshold to stay below that heart rate target. So what changes is your effort, your essentially your output and your workload. 

Dr Meg Anderson  
The other thing is that you're probably during that time going to need more calories, because your body is working extra in this luteal phase, because it's basically either planning for a pregnancy or not. And either way, it uses more calories. So you may need more calories to then help sustain and actually have the energy in your tank to do that routine that you've been doing consistently. 

Dr Meg Anderson  
And then of course, you know, there is fluctuation because I'm saying that you need to do it a minimum of three days a week. Well, if you're at the peak, you know, and you're really premenstrual and you're really having a high symptom burden, push it to the next day. Right? As long as you're still hitting your three times a week, then you have that flexibility to move things around and say, You know what, maybe today is not the day. Right? 

Dr Meg Anderson  
So I think that's really the way to approach it is because again, coming back to your body craves predictability and consistency. So if you've been in a consistent routine, the worst thing to do would be to take the week off in that case, yeah,

Jackie Baxter  
I mean that makes a lot of sense. It's not that we stop, it's that we kind of listen to the body. And if the body is saying, Okay, well, you know, that feels very effortful, then we can sort of reduce that. 

Jackie Baxter  
And, you know, I think we know that that's a lesson for life as well, isn't it? You know, that in that week, I'm putting quotation marks around "that week", because we all know what it is, those of us who experience it, you know, actually, you know, I think, you know, all the advice is actually that movement does help. But it's going to be movement in a slightly different way, you know. 

Jackie Baxter  
It's not hitting your PBs, that is not the week for hitting your PBs. It's a week for, you know, doing more yoga and sort of going for a walk rather than a run kind of thing. So to put that back into your long COVID context, it's going to be gentler, it's going to be you know, maybe if you were upright, it I suppose is maybe potentially going back to being less upright for that week, maybe I don't know if that would work? No, no, okay, you're shaking your head? No, no,

Dr Meg Anderson  
no, you would stay in the same phase that you're in. You can essentially stay the same activity, you would just put less effort and less workload into it to get the results. Because you want to keep your body working in the same position that you've been training in. 

Dr Meg Anderson  
But I think you know, another good thing to touch upon is, is there is a time not to exercise. And really, that comes down to if you have an acute illness. So if you are sick, you should not be exercising, okay. So this actually means you have to stop whatever routine you're in. If you have a fever, you should not be exercising, any of those things are definitely signs that you should not. 

Dr Meg Anderson  
If you are in post exertional malaise, if you are in a crash, you should not be exercising, those are like the top three things of when not to, those are definitely like black and white. You know, there is a lot of gray, but those are definitely black and white. 

Dr Meg Anderson  
And so when you reemerge right out of the crash or out of the acute sickness, you can't start right where you left off. You got to take it back significantly. And a lot of people, you know, I think as humans, we're like, oh, I had a setback. Is it really though? Like, you know, you might find that okay, I may need to go back a couple of weeks. But you might be able to progress much faster than the first time, you know. 

Dr Meg Anderson  
So I think that's that's important to know is that there are times where you cannot exercise. And when reemerging, you can't just pick up where you left off, which is important. 

Jackie Baxter  
Yeah. And as you emerge, I love that word emerge. You know, you emerge from your crash or your fever, because you know, these are things that happen that we can't always avoid. You know, your partner has been at work and brings home something nasty. How do we know how kind of slow to take that? We take a few steps back, we go back a couple of weeks, we take it a little bit gentle? 

Jackie Baxter  
But at what point can we put our foot back on the gas? That's a terrible analogy here, isn't it? But you know, at what point do we start sort of thinking, okay, back on track kind of thing? And how do we know what that feels like?

Dr Meg Anderson  
I think it will come down to understanding your symptom burden. So when I use symptom burden, what that means is like taking like a temp check on all of your symptoms and how severe they are, right? 

Dr Meg Anderson  
Because the thing is, when it comes to starting movement, and exercise, and even going through this, you're not going to be in a place of no pain, no fatigue, and I use pain to cover any symptom that you experience. Right. And I think that's hard for people to understand is that a lot of people are thinking, Well, I have to get back to zero pain and zero fatigue in order to start. And if you're waiting for that, you're going to be waiting forever, right? 

Dr Meg Anderson  
And so if you're reemerging out of one of these scenarios, right? There is no like formula to figure out how far back to go. You kind of have to just, you know, not fully start over, but maybe think, Okay, where was I about a month ago? You know, I'd say that's probably a good way to look at it. Where was I about a month ago? Try that and assess how your body reacts and give yourself that space again, for the post exertional malaise, if it is going to happen. 

Dr Meg Anderson  
But when I'm talking about symptom burden, what I'm saying is like, you know, when you approach any type of movement or an exercise, doing that temp check of like, Alright, what's going on in my body right now, and how severe is it? So all right, I got a little bit of headache. I'm a little bloated. I've got fatigue. You know, I've got a little bit of some tingling. All this added up, I had to say on a zero to 10 scale, it's like a four. Right? I'm just throwing that out there. So that's your symptom burden. 

Dr Meg Anderson  
And then say, then when you're actually doing the exercise, keeping in check of like, okay, is what I started with ncreasing? Right? And what I will say is that it's okay if it increases a little bit. Okay. What I would say is that you keep checking in and saying giving yourself a score. Am I still out of four out of 10?  Yes or no. Yes or No. 

Dr Meg Anderson  
When you get to more than two points above where you started, right? So if you're like, Oh, I'm at a six, I'm about to be a seven, it's time to stop. Right? So that will help to guide you to when you're reemerging. Or even any other time, not just when you're reemerging, but any other time so that you know when to stop and put on the brakes. Before just like, oh, three weeks ago, I could do 20 minutes. But at 12 minutes, your symptoms are increasing, right? It helps you put on the brakes and be able to avoid still, as you're kind of reemerging and testing it out. 

Dr Meg Anderson  
And then you know, the other piece is, it's okay. And it's normal after you move and have exercised to feel a slight increase and a slight increase in your symptoms, as long as it doesn't impact your daily routine. Right. That's a normal response to exercise. That's actually a healthy response. Right? And I think, because there's such this fear of post exertional malaise that when you're in that moment, any reaction is like, Oh, my God, I did it wrong. I'm having a crash. You know, I can't tolerate exercise. 

Dr Meg Anderson  
And actually, that's a very normal response to exercise. It's just that the difference between normal and post exertional malaise is post exertional malaise impacts your ability to function, and it impacts your normal daily routine. So I often tell people like, hey, the next day, expect to be a little bit tired, more than your baseline. Expect a little bit increase in symptoms. 

Dr Meg Anderson  
But it shouldn't change the routine that you're in, as long as you can still get through your normal routine in your day, you're okay. And like, those are the things that you can use to self monitor, as you're reemerging. But then just anytime, in general.

Jackie Baxter  
Yeah. And I guess, you know, that comes back to, you know, the tools that we learn while we're recovering from long COVID or whatever, are actually Tools for Life, because we should still be, you know, checking in after we go for a 10 mile run, you know, and oh, gosh, I feel tired. Oh, well, that's, that's okay. I would expect to. 

Jackie Baxter  
And, you know, again, putting it back into the long COVID context, you know, I did 20 seconds extra of exertion today, compared to what I've been doing. Well, I would expect to be a little more tired. And I suppose it's that kind of like temperature check of what's normal, isn't it? And normal is a stupid word. 

Jackie Baxter  
And it's really difficult to work out what is normal, when you've been in this world of being sick for so long. Because, you know, like, your view of normal is so different to anybody else's, and to what life was like before. So it's kind of difficult to work that out sometimes, isn't it?

Dr Meg Anderson  
Yeah, it definitely is. Yeah.

Jackie Baxter  
Well, thank you so much for coming back. And for speaking to me, again, sort of putting yourself through this all over again. It's been an absolute pleasure. I think there's some really, really useful information there. 

Jackie Baxter  
I'll make sure that all of the links that you mentioned, to things like research and guidance and things like that all go into the show notes, so you can follow them up if that's useful. And thank you so much.

Dr Meg Anderson  
Yeah, great. Jackie. No, it was really a pleasure to follow up and I think, make this conversation a little bit more complete. And you I just want to leave your audience with a little bit something that again, maybe you're in this moment right now, where you're listening to the podcast, horizontally, legs up in the air and thinking like, how am I ever gonna get out of this position, literally, and figuratively? Am I ever going to be vertical again. 

Dr Meg Anderson  
And what I really want to share with you is that just because you might not be able to tolerate something right now, doesn't mean that you won't ever be able to tolerate it. And there are steps you can take, there are things that you can do to help your body be in a better place to accept and handle more, whatever more is for you. 

Dr Meg Anderson  
So, you know, I would really encourage anyone who's listening to this podcast to you know, check out my website, you know, there's multiple ways that I can help guide people. And really, just to hold on to perseverance I think, more than anything. So thank you, Jackie.

Transcribed by https://otter.ai