The truth about exercise & pacing in ME/CFS, Long Covid & POTS

Emily Kate Stephens (42:51): Your work is just prolific. But one thing I wanted to put out there to our audience, what you would like to do with these energy systems is for us to apply our knowledge of first aid to look after ourselves in these situations the way that you would, and the analogy used was the way that you would with a broken bone. So if you've got a broken bone, you have your first aid treatment, you have the way that you deal with it. And actually, instead of pushing people to try and just get well in a vague way, you would like to try and implement a system where we apply that same idea to these conditions. Can you tell me about that?

Todd Davenport (43:36): Absolutely, and thanks for the chance to talk about it, the Energy System First Aid concept is really just taking these principles of first aid and looking at them through the lens of the body's metabolism. You wouldn't push a person with a broken bone, because that will make it worse. Ask me how I know. So what you do is you essentially immobilize. There are secondary consequences to the immobilization. Things get tight, things get weak, but focus is trying to restore the capacity of that bone to take on load. And once that bone can take on load, and you don't have to immobilize the bone anymore, then you undergo a period of more restorative a more traditional rehabilitative interventions. Now that period of immobilization can depend on a lot of things, and it depends on how long the fracture heals, and if it doesn't heal, guess what? You stay immobilized in some way, shape or form. So really, whether and when you pass into this more restorative phase, rehabilitative phase really depends on the body's initial response to the fracture. And so you have a situation where your body is not responding in the manner of improving baseline and response to pacing. Obviously, we're not pushing you to exercise a bit. It does leave room for the people in whom eventually they feel like a little exercise could be helpful and restorative, that underlying metabolic issue has begun to resolve sufficiently that they would like to get in a walk, or they would like to get in some exercise with stretch bands or something like this. And so this construct leaves room for that transition as well.

Emily Kate Stephens (45:08): It's such a brilliant construct there, because that idea that also, when you have that plaster cast taken off the broken bone, you don't immediately go on a 20 mile run.

Todd Davenport (45:17): Please don't go on a 20 mile run.

Emily Kate Stephens (45:19): It's that idea of incremental rehabilitation in exactly the same way that I think that we, just so many of us, did not have that idea, did not have that idea of really shutting down with the view that once we had done that and done that initial phase of rest and recuperation that then you would start to rehabilitate. But I absolutely loved that concept, fabulous. You've given us an overview of everything in here, so it's very, very much appreciated.

Todd Davenport (45:54): The pleasure has been mine, and hopefully it hasn't been too much of a it hasn't been too much of a ride for your listeners.

Emily Kate Stephens (46:02): No, I think it's been absolutely fascinating for them. So I appreciate your time. Thank you so much. I really appreciate it. I absolutely love that idea. It's so simple. It seems so simple to treat these conditions with the first aid that you might offer any other condition. He specifically talks about a broken limb. Imagine a cut. You don't just leave that open, bleeding ready to get infected. You treat it to allow it to heal. Gez, tell me what you thought of what Professor Davenport shared with us,

Gez Medinger (46:46): Fascinating, validating. That's probably my key word. If I had to pull out one word from that interview, it would be validating, because what he's talking about is stuff that feels intuitively right as a patient, how it feels, couple of thoughts just on a few bits of it. So just regarding that first aid, I think what an important intervention immediately after the viral infection. And I wish so many of us could go back in time and take a big plaster on our foreheads and say, stop, because I was continuing to try and run for two months afterwards, and got worse and worse. And I'm pretty sure that had I not tried to do that, if I'd immobilized, I don't think this condition would have kicked on anything like it did.

Emily Kate Stephens (47:29): I almost cried when he gave that description in the interview of someone going for that run, thinking they're better, going for that run, and then saying they think they had Covid again, because that's the exact email I sent to work three weeks after I had Covid. Is I said, I think I've got Covid again, having been for a run. And interestingly, I don't know what virus my daughter had over Christmas or two viruses she had tested for Covid. It doesn't say that it was Covid. I have been so specific with her school, about her not having to do sport, not being pushed, being allowed to rest when she needs I don't want to be overbearing with my child, with the idea that she's going to get sick because I got sick. But if I have learned anything about how we should behave immediately post virus, that we should listen to our body.

Gez Medinger (48:21): The slight thing about the first aid is that I don't know how useful it is once you're five years in, but about three years in, I tried going for sort of two months of radical rest, or as radical rest I could get. Think it might be too late at that point, I didn't necessarily feel any better for it. So I think obviously, what do we do if that immobilization doesn't help, and obviously that's where the research has to kick in, but certainly as an intervention in the immediate aftermath of an infection, for those who may be at higher risk, and when I say higher risk, it's all the same demographics and existing conditions that we've seen as risk factors for Long Covid intervention there could be absolutely critical.

Emily Kate Stephens (48:57): On that point that you just made about three years in going for radical rest. I was listening to something the other day talking about in these conditions when you are stuck, and again, this is this whole nervous system thing, but when you are stuck in fight, flight or freeze mode, when your nervous system is already that razzed up, which is a consequence of all of the symptoms and the lack of sleep and everything that you've been going through, your body perceives rest as danger because your system is so revved up the entire time, so it thinks that it's actually sheltering from a predator the whole time, which is why rest is not restful when you're in this situation.

Gez Medinger (49:40): Totally agree. Yeah. The other things I thought were particularly interesting is when he introduced this idea of the CPET testing, and how the two sets of results, one day apart for the same person, could be so wildly different, because there, right in front of you is the cold, hard scientific evidence of what we've been saying, for years, about how exercise knocks you out if you do too much, and even cognitive exertion can knock you out. That's the thing. And so there's been a lot of research that's looked at how it's all about skeletal muscles are the ones that suffer when you do too much. But what I found, really encouraged to hear from Todd was it's not just the skeletal muscle cells that are damaged. It's the immune cells, and, by implication, all sorts of other cells too. And that certainly reflects the feeling of being struck down with the term that he used, which I quite like a post exertional neuroimmune exhaustion. Neuroimmune exhaustion. Because that's that the much better descriptor that seems to capture the severity and the complexity and the all consuming nature of what it is when you crash after having...

Emily Kate Stephens (50:46): Yeah, and it removes that malaise phrase from it, which is so reductive in terms of what people go through. And he spelled that out also super clearly with the primary differences between deconditioning and this post exertional neuroimmune exhaustion. It's not only physiological. We have all of these.. Or it's not just muscular. We have so many symptoms as a result of that exertion. And the other thing being that the trajectory is completely opposing.

Gez Medinger (51:23): The other part of it, which I was very encouraged by, was how he was talking about the different theories for what could be causing this. It feels fundamental to me, and every instinct in my body intuitively tells me that this is a mitochondrial problem. And obviously I'll defer to the science on this, but I'm very pleased to see the science is reflecting intuitively what it feels like.

Emily Kate Stephens (51:41): Because it's so system wide, you can almost feel it in every cell of your body, going back to your point about the cognitive exertion, which we have known for quite some time. And I think you and I are specifically people who have been caught up more quickly with how we had to alter our physical exertion, and it took me so long to understand that still trying to exercise with the same cognitive capacity was not a possibility. And I live in relative wellness, because of strategies that I have put in place. I live a completely different life, and my pacing is - my version of pacing - is the thing that enables me to live in relative equilibrium. However, last week, when we put out the first podcast of you and I together of this sort of relaunch into the New Year, immediately post holiday, after everything that had been going on, I decided to add some heavy weights into a little gym session that I did. I have always been really, really careful since I had Long Covid that I basically do yoga because I still can't push my heart rate too high. There are still certain things I can't do, but as a woman of a certain age, everyone says you have to lift heavy weights. So I lifted heavy weights and had a massive cognitively related week, and I had a little crash. So it was really interesting point at which to notice, yeah, one year of relatively feeling okay, and I still - There is glass ceiling - it's still there. And I still have to manage it. I still have to put all of those things in place. So it's not that it's all gone away, it's just that you can build those strategies in what strategies do you have? Do you use some of those that Todd speak about? Or what strategies do you have? And that's not necessarily today, but have you built over the last five years to try and balance things for you?

Gez Medinger (53:49): So one of the things I found particularly interesting about what Todd was saying was how there are essentially three different energy creation systems. One of these appears to be knackered, which is some form of that electron transport chain, slash Krebs cycle, the aerobic respiration, yeah, which is exactly what you do if you go for a run that's working out your aerobic, you know, getting into your zone two, that's how you build your maximal fitness. Blah. So I have a long history of marathon running. I know all about training and how best to do that in the aerobic zone, where it's effective, but that's the one thing that is kryptonite for us, and that certainly reflects my experience of any time I do anything that gets aerobic, I start to feel unwell pretty quick. So he says, up to two minutes, you're just about okay, because you've got certain energy that can enable activity that lasts that long. And this reflects my experiences, which is that I can help someone move a sofa, but I can't help them move house. That's the difference. If it's if it takes two minutes or less, I'm okay. I've still probably got 90 to 95% of my muscle strength, yeah. But if it's anything aerobic, or if I've got to pump up a bike tire after two minutes, I'm starting to get pumped. Palpitations, and that's pumping up a bike tire. That's not like running. So for me, interesting. It's, for me, it's a really effective reminder of why pacing is so key. You just have to stay below that point of aerobic exertion. So anything you do that is exertive, you just have to really listen to. May not be exactly two minutes in your individual case, but you just have to be very sensitive to when your body starts to tell you that something is not quite right, and that's when you stop. And you just never go into that aerobic zone.

Emily Kate Stephens (55:31): I was trying to run last summer, and I was fine running without a crash, if I only ran to the point at which I could stay breathing through my nose without gasping for air. Initially, on my run, I was running to a maximum of around one minute, 45 / two minutes, and then I slowed down to a walk, and I could do 30, 45, minute runs like that without a crash. So that is fascinating, because that plays into that whole theory that you push it, and once you're about to go over that threshold, you pull it back, rather than what you and I used to do when we were running, which is, in those first two minutes, you reach that point, and then you push it at that point for the next 45 minutes, or in your case, for the next, you know, three hours. Oh, that's probably offensive, isn't it? You probably did marathons in less than three hours?

Gez Medinger (56:22): A little bit less, but you train for longer. So one of the big things that I'd love to know what the answer is to this, there's two parts to this. I'd really love to know the answer to, why does physical exertion lead to this horrific brain fog and cognitive crash, along with everything else? What is the physiological mechanism that connects those two, and why is it 30? Well, 24 to 48 hours later that it happens both of these two things. There's sort of theories around why this might be but doesn't quite feel like we've got the dart in the bull's eye on understanding what's going on with either of those yet.

Emily Kate Stephens (56:58): No, but this does link back to where we started this episode today, which is mind body, this intrinsic link between what is happening in our body and the impact it has on our mind and vice versa, we cannot still be separating the two. We just can't. There is way too much scientific evidence that, I mean, we're one system. You can't live without you can't live without your brain. You can't.

Gez Medinger (57:31): True. So the other point that the professor Davenport said that I was pumping my fists in agreement with was about how trials are being slightly undone at the moment by not understanding the phenotypes of the people who are going into them. So he used the example of people with POTS. And in principle, exercise is good for people with POTS. It helps train that autonomic nervous system and improve symptoms, but not if they are essentially energy limited, and they have some form of ME/CFS.

Emily Kate Stephens (58:03): Yeah, the primary treatment for POTS is exercise based. And I've actually got some interviews coming up on this, but there are multiple conditions, Long Covid, ME/CFS, EDS, where POTS is a really predominant symptom, and they are all worsened by exercise. So it's flipping the playbook for a lot of symptom treatment.

Gez Medinger (58:29): On that subject. I think what's so key is that with a condition that's as heterogeneous as Long Covid, and even within ME/CFS, there are subtypes. How do we make sure that the right people of the right subtype go into the right trials? And this is undoing trials already famously, BC007 potentially undone by poor participant selection for the trial and Todd's referenced without naming any that this has been a problem in the research the last few years, and I really hope that - almost the most pressing thing for us to do on the research front is just work out what those subtypes are and what are the biomarkers for those subtypes, so we can actually categorize people and put them in the right trials. It's a long old process this.

Emily Kate Stephens (59:10): And Todd is not the only one who has said that. There are multiple people that we have spoken to who have said we need to identify these subtypes and separate people out. And even then, you then need to give personalized treatment, a personalized approach. And that goes back to how we started today. Every single person is different. Let's see if we can get some buckets of subtypes in these various conditions. But every single person is going to require a personalized strategy to enable incremental improvement. Thank you so much for joining me again today, Gez, we would love to hear what you thought of this conversation, what you thought of the subject matters that we have raised and we look forward to being back here with you again soon. Thank you.

Gez Medinger (1:00:02): Thank you, and look forward to chatting again in a couple of weeks.

Emily Kate Stephens (1:00:15): 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 100,000 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

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