164 - The Art of Listening & Validating in Healthcare with Clayton Powers

Discover the transformative journey of Clayton Powers, a dedicated doctor of physical therapy who transitioned from orthopedic and musculoskeletal issues to specializing in complex conditions like ME/CFS, PoTS, and Long Covid. 

• Clayton's PoTS rehabilitation showcases continuous learning and collaboration with experts.
• Telehealth is vital for Long Covid and ME/CFS patients, but faces legislative challenges.
• Healthcare systems need to adapt to support unique health needs, as highlighted by personal stories.
• Patient education and support, especially listening and validation by doctors, are crucial.
• Practical solutions for energy conservation and managing post-exertional malaise are explored.
• Prioritizing joy and building social connections enhance recovery and quality of life.

Links:
Basic PEM Explanation Video: https://www.youtube.com/watch?v=UkS6L3Klc00

Orthostatic Intolerance Explanation Video https://www.youtube.com/watch?app=desktop&v=Gh4vpKsLbr8

Life with a Low Battery: Living with ME/CFS: https://www.youtube.com/watch?v=gKWk99Fsd_o

Bateman Horne Center Crash Survival Guide: https://batemanhornecenter.org/wp-content/uploads/filebase/crash_care/Dark_Blue_Survival_Guide_Complete.pdf

Resources for Rehab Providers: https://batemanhornecenter.org/providers/mecfs/diagnosing-managing/rehab-professionals/

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

(music credit - Brock Hewitt, Rule of Life)

Chapters

• 0:00 Advancements in Long COVID Treatment
• 12:03 Accessibility and Flexibility in Healthcare
• 22:49 Importance of Patient Education and Support
• 36:58 Accepting Help and Energy Conservation
• 50:57 Managing Energy and Prioritizing Activities
• 57:41 Prioritizing Joy and Accepting Help

Transcript

Jackie Baxter: 0:55

that All right. So hello and welcome to this episode of the Long COVID podcast. I am absolutely delighted to be joined this evening by Clayton Powers, who is a doctor of physical therapy specializing in ME-CFS, pots and now, of course, long COVID. So a very warm welcome to the podcast. I'm so excited to have you here.

Clayton Powers: 1:21

Thank you. I'm excited. I just looking through the different guests you've had, I feel honored to be on the podcast. This is amazing, so thank you.

Jackie Baxter: 1:31

Well, thank you so much for being here Now. You've got tons of experience in this area, so I think it's going to be really exciting to you know dive into all of this. Uh, this evening I've also been told that I say dive into about four times an episode so I'm going to try and stop doing that. But anyway, I've done it now. Um so before we get kind of um into this too much, would you just be able to introduce yourself briefly and sort of say a little bit about yourself and what you do?

Clayton Powers: 1:59

Yeah, so originally I'm a physical therapist and I specialize in helping individuals with complex or chronic illnesses like POTS or ME-CFS or long COVID, like you mentioned, and I work with a few different organizations, including Bateman Horn Center and the University of Utah Long COVID Clinic, in trying to raise awareness about long COVID and ME-CFS particularly, and so originally I actually graduated from physical therapy and focused on more orthopedic or musculoskeletal issues, so I mostly treated individuals with knee pain, back pain, neck pain, things like that, and then I started to get more involved with treating individuals with dizziness or vertigo and concussions or mild traumatic brain injuries. And what kind of led me down the path of getting to this point treating patients with ME-CFS or long COVID is. I was actually treating a lot of patients after they would sustain a concussion from a motor vehicle accident or sometimes the most obscure and odd ways you can get a concussion. But, um, I would see patients and I remember this one time I get an email from a doctor referring a patient to me and she said hey, do you, I, I have a patient I want to send to you. Do you treat pots? Um, and I I didn't respond that day.

Clayton Powers: 3:33

I first um read up on it and tried to learn as much as I could, and mostly what I found was information about the Levine protocol or the CHOP protocol, this graded exercise protocol for POTS. And so I emailed back the next day and said, yes, I treat POTS, because I mean I found the information and felt like, oh, I can do this, doesn't seem too difficult. And so I started working with different individuals and I started getting more patients being referred for POTS rehab. And for those who don't know, pots stands for postural orthostatic tachycardia syndrome and it's this condition where individuals will have difficulty tolerating being upright, and that's often thought to be caused by a decrease in blood flow to the brain and heart when they're upright, and so it causes this tachycardia rapid heart rate response. And so, as I started working with more individuals, I actually, just looking over some of the research, thought, wow, this protocol is great, we can help a lot of people who have POTS, and so I started introducing them to this graded exercise program, and it didn't take long for me to start finding that it didn't work very easily it wasn't.

Clayton Powers: 4:59

I became pretty frustrated with a lot of the protocols out there and I noticed that I was always having to adapt them and trying to figure out. Well, that didn't work. What are we going to have to do to kind of lower the intensity and the frequency? And it just seemed like it was not working well, and so I kept reaching out to people to learn why, what's going on. I thought this was supposed to be helpful, and I even had some patients who were referred to me for they would say POTS, but also post viral fatigue or things. And this was before COVID and physical therapy programs don't really go over, or we didn't learn about POTS or ME-CFS in school. And so it was.

Clayton Powers: 5:45

I was trying my best to help these patients with the limited information that I had, and I had a patient come in who said I have POTS, I also have ME-CFS. Do you know what that is? And I said I honestly don't know what that is, but I know some information about how to help people with POTS. And she said no, that's not going to work for me, and I so I was. I listened to the patient, I tried to, so I did read as much as I could and I started getting information about Todd Davenport and the WorkWell Foundation and how they've been treating or helping individuals with ME-CFS for a long time, and so that was the year before COVID that I started learning about ME-CFS and diving into there.

Clayton Powers: 6:39

I used the diving into, so I started researching as much as I could and eventually I just reached out to Todd Davenport and I wanted to set up a journal club for physical therapists here in Utah in order to learn more about these conditions that are hard to treat, and so I reached out to him to ask if he could present to us and we spoke for about an hour and also invited him to join this research project where we're looking at all the research that's been done for exercise, for POTS, and really combing through it and and analyzing it and and then it's about to be published.

Clayton Powers: 7:24

But, um, I invited him to that group and then I also reached out to Bateman horn center in salt Lake city and and pick their brains and and so these relationships is really just amazing with the technology of being able to um reach out via tele, via tele teleconferencing, to be able to. I never, I never would have had that opportunity in the past, because zoom and things like this were not as popular until around that time right before COVID, and so I reached out to them and it's been just amazing. Since then, I've I've learned a lot from them and also have had a lot of opportunities to share and educate others and try to raise awareness about this throughout the country and hopefully internationally as well.

Jackie Baxter: 8:15

And you know we're big fans of Todd Davenport on the podcast. He's been a past guest and he's an amazing person, absolutely definitely a good egg. And like I think you know what you were just saying about this. You know, making connections and networking and learning from each other and like how important is that in this world where you know lots of amazing people are doing amazing things in different pockets of the world, and you know it's great that people are able to talk to each other and learn and share and, you know, make those connections that maybe wouldn't have been so easy to make before and it makes it so much easier for patients to get things like information and help from people.

Jackie Baxter: 9:01

And we were talking a little bit just before we hit record, weren't we? About you know, the ability to see patients in different countries and different time zones and how it makes it so much more accessible for patients as well and all these connections, which I think is just really really cool, and I love that you've kind of like, yeah, reached out and done that kind of networking in order to try, and you know, learn more about these conditions that aren't widely understood, kind of in the world, but also, you know, in sort of medical sort of circles either. Really, you know, there's not that great an understanding. I don't think among the majority of medical professionals, certainly from what I've noticed yeah, absolutely.

Clayton Powers: 9:48

I've. Even in speaking with some of the other providers physical therapists or other health care providers who have been doing this a lot longer than me prior to it seemed like a lot of people were on islands. So there's a physical therapist here in Utah. He's been doing this much longer than me and he often says like all those years I was treating alone and felt isolated and then now it's all connected, everybody's starting to communicate more and to share their resources and what's helping, because this is a lot bigger than a bigger issue than one person or one group can tackle, and so we try to share as much information and resources and things as we can, because it's not about having a monopoly on the helpful things, it's trying to just help everybody figure this out together.

Clayton Powers: 10:47

And that wouldn't have I don't think that would have happened without the teleconferencing becoming more popular. And then also, telehealth has been huge, as you mentioned, to be able to help patients who don't have access. As you mentioned, to be able to help patients who don't have access, I have patients reach out from all over the US who want to either fly out or drive out for a visit, and now with telehealth it makes it so much easier to reach the rural areas and also to provide care that's in the comfort of their home and doesn't use as much energy and and cause a post-exertional malaise crash after so. Um, that's what.

Jackie Baxter: 11:31

That's one of the most exciting things about seeing how health care is changing, but there's still a lot of work to do yeah, and you know what the irony of like coming to see a doctor or a specialist about post-exertional malaise and experiencing that post-exertional malaise as a result of traveling to see that post-exertional malaise specialist, like isn't that well, that is like literally the definition of irony, isn't it? I think? Um, so, you know, I think it is great that it makes it so much more accessible. You know, particularly for this cohort of people, but you know also for other people, for other reasons. I mean, you know, there's obviously some medicine that is not possible to do remotely. You know you can't do remote surgery as far as I know.

Clayton Powers: 12:19

Yet yeah, right, you know you can't do remote surgery as far as I know yet.

Jackie Baxter: 12:22

Yeah, right, I don't know. Yeah, I don't know what's going on, what the robots are up to, but as far as I know that's not yet possible. But you know, I know from my own experience. You know we we do breathing courses online and that works absolutely beautifully. In fact it probably works better than it would face to face certainly for this cohort and is that kind of your experience as well that doing it remotely it works just the same or better than it would if you were seeing the person you know in the room, kind of thing.

Clayton Powers: 12:54

Yeah, absolutely so, one of the things that I think needs to change. People who are experiencing post-exertional malaise need a different approach to health care and telehealth. Offering telehealth is one of the biggest things that can help. The problem is that a lot of the legislature legislation. Originally they allowed a lot more telehealth visits during the COVID pandemic and since then we're seeing that some of that's being taken away. So for physical therapy, for example, medicare and Medicaid will no longer be reimbursing or covering that for therapists, and so I've even been told that I need to cut back on some of my telehealth appointments, and that's really hard because it is so helpful for a lot of patients.

Clayton Powers: 13:54

In olden times, doctors would do home visits, you know, and now we expect patients to come to a certain location on the doctor's time when they want to be seen. In this environment that's not conducive to healing. You go into the hospital setting. It often causes a lot of anxiety and then a sympathetic response. A lot of anxiety and then a sympathetic response, which also is metabolically costly.

Clayton Powers: 14:25

It's expensive, to energy wise, to go into an environment that has bright lights and and lots of people and beeping noises or other mechanical noises inside, and so one of the ways that health care needs to change and that we try to do in our clinic is, when somebody comes in, I have an area where they can come in and be brought right back into the and this is the ideal. It doesn't always happen, but bring them back where they can lay down if they need to, in a dimly lit room, in a private space that's quiet, and provide that environment that's a little bit less stimulating and threatening, and by doing that we can hopefully reduce the likelihood of an individual experiencing post-exertional malaise. But that should be standard of screening for post-exertional malaise in individuals and then offering a alternative approach to health care, like telehealth or private settings that are a little bit less energy or costly to their energy yeah, I mean that's a really interesting point you just made about doctors doing home visits, and I hadn't even thought about that.

Jackie Baxter: 16:28

you know, for a patient who's not able to come into the surgery or the clinic or wherever it is, you know the doctor would go to them and you know, and now we expect patients to go to doctors and you know for a lot of people that that's fine, it works absolutely fine for many people. But there is obviously, you know, this particular cohort and I'm sure loads of others as well actually. But you know, we're obviously talking more specifically here about the sort of long COVID, me-cfs community you know, many of whom. You know it is, as you say, very, very costly in terms of energy I mean in terms of finance as well, but particularly in terms of energy to do that travel. And why is it that they're expected to do that when actually you know there is another option there, whether it's the doctor going to them or, you know, probably much more efficiently, doctor seeing them on on a screen.

Jackie Baxter: 17:24

You know, I think it's it's a really valid point, isn't it? Um, and what I find really interesting, I mean I'd never considered any of these things until I became unwell, because I'd never had to. You know, I was in the privileged position of having never really been properly unwell. You know, I'd had a cold, I'd had the flu, and you feel miserable for a few days and then you're back on your feet and everything is fine, and that is most people's perception of illness, isn't it? You know, you get that bug. It's horrible, you're grumpy, you shout at people, you feel rubbish and then you're fine and it's.

Jackie Baxter: 17:59

It's sort of this world where you suddenly come into this world where that is not the norm, that is not what happens, and suddenly you realize how difficult the world is for people who are not quote unquote normal. I mean, what is normal anyway, but that's that's a different conversation, isn't it? Um, you know, and and that life is so difficult, it's so biased against these sorts of people who have these particular struggles, and it really opens your eyes it certainly did for me to how important things like accessibility are, whether it's for energy, whether it's for, I don't know, neurodivergence. You know these accessibility options are so important and just because these people might be the minority, it doesn't mean that it's not something that we need to do better, and I think you know this kind of coming back to your point about healthcare needing to change or certainly to be more flexible, I think this will benefit more than just this particular community, and it's something that's really important, isn't it?

Clayton Powers: 19:06

Yeah, absolutely. I think that's the number one complaint I get is probably related to that accessibility. And then also providers, healthcare providers not listening when somebody comes in. But the accessibility issue is a really hard one because I have patients who have severe ME-CFS after long COVID, after developing long COVID. You have to come in for the appointment because I have a particular patient I'm thinking of right now who his doctor said we cannot treat you and we don't get reimbursed enough to do tele visits, so you have to come in and he has nobody who can drive him.

Clayton Powers: 19:56

There's no family, he lives alone and his situation is really dire and and so to not be able to have access where he can be seen, in his home or virtually, has been really hard and I've tried to help in ways that I like outside of my job, but it's just, it's rough. Like, for example, he had a home health nurse who they ordered home health care for him. So they had a home health nurse come to his house and afterwards she really didn't understand what was going on and he asked me to call her. So I called her after and tried to explain what's going on and she said really we don't have any options for him, unless he wants an occupational therapist to help him with some things, with assistive devices, or if we can send him a PT to his house who can help strengthen him and get him exercising. And I was like, no, that is not what we need. And so they said we really don't have, we don't have a lot that we can offer At least that particular home health nurse didn't and so it just has been made it really hard.

Clayton Powers: 21:13

And I know a lot of those patients who have severe, very severe symptoms often are have accessibility issues with getting into the healthcare system, getting treatment, and that's why they often go. Are the millions missing? That's what they go by, because they're those that you don't see who are suffering, who aren't able to get healthcare. But I also wanted to mention that not listening that's another complaint that I hear so much from patients is even if they can access health care, they can get there and save up enough energy to make it into an appointment with a doctor. I feel like number one when working with individuals. As a healthcare provider, it's so important to help patients feel validated and seen and heard, and that can be part of treatment. Often, when I've presented to healthcare providers or physical therapists. They'll say, well, what treatment can you provide? Physical therapists they'll say, well, what treatment can you provide? Number one is listening and and validating that experience and helping them feel safe and that they can trust you, and that's a game changer for moving in the right direction.

Jackie Baxter: 22:36

Yeah, I agree, and it's like that should be the least that any healthcare provider should, you know, be able to provide, isn't it Even you know, and there are. You know it's difficult for doctors. Like you know, I don't want a witch hunt for doctors because doctors are struggling, because doctors are struggling and you know that they're overworked, they're underpaid and they don't have time to do tons of research. So, you know, many people with long covid, for example, will go to their doctor and the doctor probably won't know and, like you know, we could say we need to educate doctors and I think, yeah, you know, we, we do. But also you know that doctor, at the least they should be doing is listening and making that patient feel validated.

Jackie Baxter: 23:25

And you know, I've told this story before where I went to my doctor and, to be fair to him, he listened to me and he said I don't know. And I said to him thank you, you know I was, I was so worried about going because I thought, you know, so many people talk about being gaslit and you know how their doctors will try and tell them it's just anxiety or it's just this, or you know all of all of that sort of story. And he turned around and he said I honestly don't know, and I just thought that is so refreshing that he said that you know it wasn't very helpful but it was very validating. And, as you just said, that you know it wasn't very helpful but it was very validating. And, as you just said, I think you know that has to be step one.

Jackie Baxter: 24:05

It made me feel like we were kind of in it together and we were both coming from the same place and actually I was able to educate him over time, which made me feel quite kind of empowered, almost. I mean, it's not the way around it should be, but you know it was. You know it was a very kind of empowering and validating kind of space, and a lot of people don't get that, and I think that's definitely something that should change. You know it's what we would call sort of bedside manner, isn't it? And you know that's got to be important for a healthcare kind of professional that they do have.

Clayton Powers: 24:43

You know that manner that makes the patient feel safe you were able to educate the doctor on the your health and, and I think I have learned the most from my patients, from the people I treat. So, um, that's where we should learn the most is by listening and and applying that feedback, and so, um, I think it's actually the right even though an individual may not have a healthcare provider, might not have all of the answers, it's a team effort with the patient and trying to figure it out and just being there with that person and saying, hey, I'm not quite sure what's going on, but we're going to work through this together, and I think that's the more powerful treatment you can provide is just being there with that person. And there's the, once you got that far. The next step is learning more about some of the possible complications or comorbidities that can be contributing to somebody's symptoms, and that's in physical therapy. That's a lot of. What we're doing is first screening for post-exertional malaise, and I think that's the first step is helping physical therapists, occupational therapists, all healthcare providers, to recognize when somebody's experiencing post-exertional malaise or have a history of that, and being able to offer this alternative approach, and then screening for other conditions that could be contributing. So that's, I think, the next step, think the next step, um and so, for example, um screening for things like mass cell activation or cranial cervical instability or vascular compressions or malls or a lot of these conditions that can be an underlying cause for their symptoms or contributing to some of those symptoms. And so that's another key thing that, after providing that compassion and listening and an alternative approach, screening for those conditions and then educating people on post-exertional malaise, I think another part of helping people heal is giving them an explanation, even if it's not necessarily the only explanation, just having some type of explanation that helps them feel heard and validated.

Clayton Powers: 27:33

So, for example, I had a patient who she, when I first met her, I did a telehealth visit and she was hardly able to tolerate the full visit so we had to end it early. But one of the things she said was my husband does not understand what's going on. He thinks it's in my head and they were actually considering divorce because he just felt like she wasn't pulling her weight, she wasn't helping enough with their kids, and and so I met with them and did a joint call and explained post exertional malaise and some of the research that's been done. It helped him to recognize oh, this isn't her just being lazy, there's something going on, and so they actually stayed together and he's been much more supportive, and I find that that's a huge.

Clayton Powers: 28:30

Another treatment for people is helping them have relationship support. A lot of research has been done showing that the number one predictor of morbidity or death early death is not actually smoking or lack of exercise or deconditioning. It's actually social relationships that dictate lasting health, and so if we can, if we can be healthcare providers who help people with their social relationships, in feeling supported through this process, that's also treatment for somebody, along with pacing and energy conservation techniques, which we could go into as well, but I think a lot of these other things don't get brought up as much. That can be part of the healing process.

Jackie Baxter: 29:27

Yeah, that power of social connection, isn't it just so powerful and how wonderful that you were able to do that for them.

Jackie Baxter: 29:38

You can add marriage guidance counselling to your resume but, like I think, what a lot of people find very difficult is getting other people to understand. I mean, I found that, you know, my partner's been wonderful but he still didn't get it and I found it very difficult to explain to him what was going on in my own body and how some of the things that maybe he was doing was not helpful or how he could mitigate some of that or other things from other people. And it's very difficult to explain it to people even if they are willing to listen, and obviously many people are not willing to listen or not interested, and you know this is family and friends and employers as well. You know that's a whole different kind of thing, isn't it? And you know, I think you know it's maybe, yeah, you know that kind of education piece. It's educating patients about what's going on in their own bodies so they can start to understand and put together some plans and find some things that help them.

Jackie Baxter: 30:45

But, as you just said, you know, having people around you, that connection is so important and finding ways to communicate that information to the carers, to the friends, to the people that they interact with so they understand, so they don't judge the patient or think they're being lazy or you know, know, whatever the situation is, and that actually they can do the best they can to support that person as well. And you know what I think as well like care for the carers, because you know it cannot be easy to be a partner or a spouse or a carer for someone with one of these conditions. You, you know that must be a very tough thing to do. So having all that kind of support for them as well, I think, is also important.

Clayton Powers: 31:26

So true, yeah, and that's where a lot of the stuff the videos and educational content we've been trying to put out through Bateman Horn Center through YouTube videos and other things trying to put out through Bateman Horn Center through YouTube videos and other things One of the goals is to provide those simple education videos that can be used to help, so that people can get help from their health care providers or from their family members. I originally, when I wanted to film some of those, part of it was selfish in that I wanted to have some videos I could send to patients. And then they and I've received so many messages back from patients who have shared it with their family members and then said thank you, that helped my family to be more supportive as I'm going through this, and so it's like if we can at least change how people view what's going on and start to support their family member or friend better, that's going to help with the healing process, along with all the other things we offer in physical therapy. And so, yeah, this is that's part of why we put out a lot of these educational things and why I feel passionate about continuing to put out content like that, so that we can make it simple for people to understand. When it clicks it's really helpful.

Clayton Powers: 33:20

Like I had a. I was treating a physician. He had been a physician for years and years and he developed long COVID and ME-CFS and he was adamant that he had to keep pushing his body to get it better. And he was cycling every day trying to push himself. And yet he said I can hardly remember the four steps to making a bowl of cereal, but I've got to get my exercise in. And so he kept pushing himself and pushing himself.

Clayton Powers: 33:56

And when I shared some of the education content and went over it, it finally clicked and he said, oh, I need to stop. And he started to see improvement and then later said like that was what, when I started to really see my health improve. And I think so that's. My goal is really to add little short nuggets of truth or help people to see it so that healthcare changes for these individuals. Because usually people don't like if I speak with a doctor about a patient. They don't have time to go into all the research. But if you can find the one little thing you can say that triggers them to look at that patient differently and to try to be more supportive and curious, then that can really change healthcare for that individual.

Jackie Baxter: 34:49

Yeah, and I love the word curious because that literally describes me Like I wanna know everything, which is partly why I love doing this, because I get to grill all of these incredible people and put them through their paces, because I just wanna know. But I think that is so powerful, isn't it? Incredible people, and put them through their paces, cause I just want to know. But you know, I think that is so powerful, isn't it? It's that curiosity, you know, gentle curiosity, not like let's go find out if I go and try and like push myself, because you know we don't need to, don't need to explain what happens when you do that, but it's, you know, it's exploring what. You know, what would happen if I tried doing some breathing I mean, that's my wheelhouse or what about if I tried this? What about this strategy? You know, keeping that open mind, that curiosity about things that can be helpful. But you know also, you know, as you say, you know, I think probably most people have done the thing where they try to push themselves through it. Most people have done the thing where they try to push themselves through it. I certainly did, and it didn't go well and I kept trying because I'm very stubborn and guess what, it still didn't work.

Jackie Baxter: 35:57

You know, and it's when you start, you know it's coming back to that education, isn't it? You know, when you start to understand what's happening when you do that, you start to kind of understand why you shouldn't be, and actually that you know it's like taking one step back to take those other steps forward, kind of thing, isn't it? It's the opposite to what normally happens. Normally it's one step forward, two steps back, but here it's kind of the other way around, isn't it? It's one step back to then be able to take those steps forward, which is totally counter to what the world tells us. The world tells us to push on through, doesn't it? You know, in the UK we have tea towels that say keep calm, carry on. You know it's like no, you know, don't carry on, stop. If your body says stop, then you've got to stop. But you know, society, society doesn't tell us that, does it? And anyway, maybe society needs to change that.

Clayton Powers: 36:51

That is, um, really interesting that you brought that up, because that's when I initially started getting into this. I was learning about mecfs prior to covid, and then, when covid hit what was? I became really concerned that a lot of physical therapists would just start pushing patients to exercise more. And I did start seeing that. And so I started going around teaching groups of physical therapists about a post-exertional malaise and ME-CFS and trying to raise awareness about it, because I kept seeing individuals who they would be treating them for months and they weren't getting better. And then I would present to them and the therapists would go oh shoot, I need to send you a patient and I would look and they would be doing it for a year, trying to push a patient to get better over the course of a year. And I would tell that individual I'd say how has it been going? After they referred the patient to me and the patients would say, well, I just feel like I was getting sicker and sicker. And so I would say let's discontinue your exercise program. And I did get some backlash from some physical therapists and doctors saying that's so harmful that you're having them discontinue exercise. But it was more. We need to discontinue this now to give your body that chance for healing, that environment of healing, and so I would take them off their exercise program and they would slowly start to see improvement, that they weren't crashing as often and that was, and then teaching them more energy conservation or energy-saving strategies. Often people are resistant to some of these ideas, like using a scooter at the grocery store or sitting in the shower or using a wheelchair. People are often resistant to having to change and to lower the amount that they were already doing, and so that education also has to be almost like you're selling this new concept, that's, it's not. It's not. You have to view it differently and get people to see it differently so that they don't feel bad about themselves and they also don't feel like, oh, I need to keep up with what everybody thinks I should be doing, and that's hard with the societal and peer pressure and things.

Clayton Powers: 39:33

I know that a lot of people use the analogy of a cell phone battery. I'm sure you've heard that analogy of ME-CFS or long COVID being like your battery doesn't charge all the way. So when you sleep and try to recharge it, you wake up in the morning and it's only partially charged, let's say 30% charged and then you start to do activities and it just feels like your battery drains faster and you have to recharge it more often, and a lot of people resonate with that. And so one of the ways that I think therapists and healthcare providers can help individuals with ME, cfs and long COVID is to explain like we want to do all those activities that help you recharge faster. If you've ever you know like if you there are certain chargers, if you put your phone and you charge it, it says slow charging, um, and then if you get the right charger, it says fast charging and it's a lot faster. So I try to educate people on charging faster than just um, just laying down is kind of like that slow charging. It's you lay down and yeah, it's helping, but it's kind of a slow, slower recharging your body's energy.

Clayton Powers: 40:53

So a lot of the things that we've found helpful for helping people recharge faster are things like putting cold packs on the neck and face or other parts of the body to help cool the body and also to stimulate the vagus nerve. Also pneumatic compression devices like the inflatable leg devices that compress and go up the legs to kind of push blood back up to the head, have been helpful, and then some. This is more medical, but individuals who are in in a post-exertional malaise crash often do seem to get out of a crash a little bit faster when they get an IV, a saline IV infusion or supplemental oxygen for short periods of time. That can also be things that help people get out of those crashes. We want to avoid crashes, but they happen. It's hard to completely eliminate all episodes of post-exertional malaise, but if we can help people to recharge better and use assistive devices and other energy-saving strategies, that's part of what we want to offer in healthcare and especially physical therapists yeah, and you know what's like really I was gonna say funny.

Jackie Baxter: 42:18

It's not funny, haha, as in, you know, just really interesting to hear a physical therapist talking about doing less. And you know, this kind of comes back into the kind of like society thing we were just talking about, isn't it that? You know, exercise and movement is all about doing more and pushing and you know, feel the burn and all of that and like, don't get me wrong, I love it when my legs hurt after a really good weekend on the hills, like it's. It just feels like the best thing ever. Now I can do it again. Um, but you know, I think you know movement. I always use the word movement rather than exercise.

Jackie Baxter: 42:53

Now, I like that yeah you know exercise has these connotations, doesn't it? And you know, whether it should or not is probably another conversation. But you know, I think for most people, if you talk about exercise, they talk about cardio, and you know the sort of exercise where you feel really tired afterwards and you know that's just kind of doesn't really work in this cohort. So but, but, not to say that movement isn't important, because it absolutely is. It's just got to be done in that right way, and I was also very resistant to using any you know, sort of anyone helping me with anything.

Jackie Baxter: 43:33

You know I'm fiercely independent, always. Have you know I don't want people to help me, I don't want to feel helpless, and you know the idea of having someone have. You know I don't want people to help me, I don't want to feel helpless, and you know the idea of having someone. You know, looking after me was horrifying to me. So you know the idea of things like mobility aids and stuff. You know I was just like no, no, no, no, no, no, I will do this myself. And like how many times did I crash because of my stubbornness? Like so many times.

Jackie Baxter: 43:59

And I think, you know, looking back on it, you know I'm thinking I think I didn't want to give in, but it was almost like if I'd. You know, quote unquote given in it's not a forever thing. It might have been a bridge to kind of help me get things under control a little easier, and I don't know, I didn't. Maybe I should have that. That's not really relevant, but you know, I think it's a really interesting point. You know about that kind of, you know, people don't often want to do things like that, and accepting help, in whatever form that might be, can be really difficult for people. Um, so, yeah, I suppose it's it's changing that kind of, yeah, societal thing around that. Isn't it, um, about asking for help, accepting help, being vulnerable as well? That is, it's so difficult and I I find that difficult as well.

Clayton Powers: 44:57

You know, um, absolutely it's easier when you have crutches or you have a visible injury, because you people see and they actually offer to help. Um, you know, when somebody injures their knee, they tear their ACL or another injury, what happens is that they expect and they're given a timeline, an expectation of it's going to take this long until you can walk again, it's going to take this long until you can run again, until you can play sports, it's going to take this long and there's this timeline and it does change. People can become frustrated when they don't meet the traditional timeline or it takes longer than they expected. But usually we have this conversation with other types of injuries where, hey, you just had surgery, it's going to take this long and it's expected, and so it's easier to kind of accept and to accept help, to kind of accept and to accept help. But with injuries that are invisible, like long COVID, it's really hard to kind of see the timeline and also to see that nobody else can recognize what I'm going through and so people are judging me.

Clayton Powers: 46:16

I know one of my patients, for example, said I was using a motorized scooter at the grocery store and I get to my car and I have the strength that I actually lift the scooter into my car and I get looked at and judged because why do you need a scooter if you can lift it into your car? But she's like I can't walk five minutes but I can lift one time, you know. And so that's the hard thing is changing the perspective of individuals. But I think that over time, educating and as people are more aware of invisible illnesses, it will get better. It seems to already be improving somewhat when I speak to doctors and other healthcare providers and a lot of people now know somebody who has long COVID and so it's really opened up people's eyes. But it's slower than I'd like. I'm like we should have adopted this a while ago or people should be already compassionate and thinking and helping other people. But I think it's going to be slow over time, just like that healing process is slow.

Jackie Baxter: 47:34

Yeah, I think so, but you know it's such a valid point. I mean, you know, you, you see someone on crutches crossing the street and loads of people will run over and help that person across the street because they can see that they're struggling, whereas you know you sit. You see someone sitting on a bench, exhausted, and what do you do? You judge them for being drunk or something you know. You don't really think that maybe that person is as deserving of your help and your compassion than that person who's visibly unwell. Um, you know, it's, yeah, it's definitely something to think about, isn't it? There's kind of unconscious biases, I suppose. Um, but you know, I love what you said about the timeline as well, because it's so true. You know when.

Jackie Baxter: 48:17

When I got unwell, I was March 2020, so I was sort of right at the timeline as well, because it's so true. You know, when I got on, well, I was March 2020. So I was sort of right at the beginning of the long COVID. But obviously, you know, mecfs had been around for an awful long time before that. But you know, I was sort of told I'll give it a couple of weeks and then I'll give it a couple of months, or you know the sort of timeline kept expanding. And you know the sort of timeline kept expanding and you know it sort of started becoming unhelpful because you know that there was no clear timeline. It kept getting longer.

Jackie Baxter: 48:48

But you know what some people get is kind of the opposite. You know they'll go and see a doctor and the doctor will say, oh well, you're never going to recover. Recover this is for life. You know, and you know the harm in that is possibly much worse than that kind of expanding timeline that I had, which wasn't very comfortable. But I think, you know, I would have preferred that to the kind of this this is your life now, which is horrendous. Um, so it's that kind of balance, isn't it, between the acceptance of, okay, this is the now doesn't mean it's the always, but this is the now. But also, you know there is a lot that we can do and people are seeing improvement, people are recovering. Um, that you know it's a difficult balance, isn't it?

Clayton Powers: 49:30

um absolutely.

Jackie Baxter: 49:32

You know. Um, so you you mentioned before and we went and then we went off on a big tangent. Um, you were talking, you were talking about sort of management strategies and energy conservation and things, and I'd love to just know a little bit about sort of your approach here. What would you? You know and I know it's obviously very personal to each individual but what sort of things do you work on with people and where do you sort of see the biggest bang for your buck sort of thing with different strategies?

Clayton Powers: 50:02

yeah, initially, when I first started getting into learning about pacing and things, I used the heart rate pacing, giving people devices, and that can be really helpful initially if somebody uses if they already have an Apple Watch or Garmin or they get the visible armband or Lumia Health, the new device that tracks blood flow to the head those can be helpful and in helping people to start tracking their exertion, their heart rate. And so often that was the first step is giving people a tool that helps them recognize, because often when it's new and you're just learning about what's going on, it can be hard to recognize those signs and symptoms that you're overexerting, and so those can be helpful initially. Some people, after they start to better recognize when they're overexerting, then they stop needing it as much and they can kind of determine how much activity they can do in a week or a day. So some people have found it helpful to use a calendar and kind of track. Okay, I have this physical exertion um event that I on Tuesday from these hours, so I need to save some time to recover um afterwards and then um and always monitoring the next day and the next one to two days to see how they are responding to exertion. But using calendars, I mean most of the time I'm trying to help people with their health care. I would say that's the number one thing I spend a lot of effort is trying to get them to doctors. I spend a lot of effort is trying to get them to doctors who will give them medications that may help. Trying to communicate with their providers and then get them. If they need help with disability, trying to help them get disability topic and super challenging. And then actually, with this energy saving, it's cutting back if they're still having post-exertional malaise episodes, cause I have patients who when they first come in they they were referred to me. They don't really know much about what's going on with their body. They just know that they got COVID and now they're having trouble with exercise or work or whatever, and so it's the education piece on.

Clayton Powers: 52:42

We need to save as much energy as possible so that you can do the things that are most important. So if it's work or it's taking care of your kids or making a meal for yourself, we need to find ways to prioritize those activities and then any other activities that's just wasteful energy. We need to figure out ways to outsource those. Ask other people for help, say no to demands from others and just kind of cutting back, and it's an energy saving plan. I say it's kind of like energy poverty.

Clayton Powers: 53:22

All of a sudden you get a downgrade in your paycheck of energy for the day and so now everybody around you is making a lot of money energy money and your body is not, and so taking a shower. I explain it it's like if you stand in the shower, maybe it's a hundred dollar activity and if you sit in the shower, maybe it's a $40 activity. Or if you just do kind of a sponge bath or something, it may be a $20 activity, or maybe you it's not worth it that day to spend that energy and so having these conversations about how we can sitting uses less energy. Can you do some of your work laying down or can you split up some of the activities so you're not multitasking? For example, if you're eating a meal, sitting upright eating with other people is going to be costly while having conversation, so maybe meals need to be done, laying down, or conversation needs to happen, laying down and so isolating activities so you're not multitasking and and spending a lot of energy in one place.

Clayton Powers: 54:36

But but ultimately it's up to the individual how they want to spend that energy. So for one person, it may be worth the crash they may experience in order to attend their son's birthday party or to be there with family or to have a conversation. So it's really having those conversations of what's important to you. And then how can we make that happen and how can we save as much energy by not spending it on? Like, for example, now in Utah, physical therapists can actually sign off on individuals getting handicapped parking or disabled parking, and so that's another way to save energy.

Clayton Powers: 55:24

Often people feel embarrassed because they may get judged for using a sticker when people see them walking, and really it's about saving as much energy and helping that individual, each person, like you mentioned. It's about saving as much energy and helping that individual, each person. It's like you mentioned. It's it's unique to them and, as mentioned earlier, the sympathetic nervous system. When you're in that state of fight or flight, that's very energy expensive, it's metabolically costly, and so we want to. We teach people how to down regulate in those environments where their fight or flight system um may be more active, and I know you do a lot with that, with your breathing courses and things as well.

Jackie Baxter: 56:10

Right, yeah, it's all about that. Down regulating, um, yeah, I mean, and you know, know what you said about saying no to things and accepting help. Hey, that's a whole other podcast. We could do a whole hour on that. But you know, I think it's very difficult for a lot of people to do both of those things, and I think it's a skill for life. I say no to things now, and it is so liberating, but it's still very difficult, and I think it's a skill for life. I say no to things now and it is so liberating, but it's still very difficult. And I think you know what you said about each person.

Jackie Baxter: 56:45

What matters to each person is different and you know it's like how do we make this work for this person? Can they attend this party in some form? Can they do that job in some way? Can they? You know, whatever it is, can we make it work in some way? You know, whatever that thing is, whether it's socialising or family or work or I don't know you know everyone's different, aren't they? You know, someone may really really want to spend time with their kids, for example. Um, you know, and it's, what is it that makes that person light up? And how can we like, how can we do that for them in some way? Because, like, isn't that you know? It's, it's that you know what, what makes each person smile, because what's what's the point? Otherwise, you know, it's like you know you've got to have something in your life that gives you joy, I think you know, even if it's something really small yeah, and I have a.

Clayton Powers: 57:42

I have a patient who comes to mind with. She is a rock climber prior to getting COVID, and so for her, that's what brought her joy, and it was when she came in her. Her goal was I want to be able to rock climb still, and so we figured out ways where we could cut out other activities. It's like, can we get you help with your meals or cleaning or things in other areas of your life so that you can have enough energy to still rock climb? And so for her, her partner would take care of a lot of the other things and she would save up energy. And then they would still go to a rock climbing gym and she would have her heart rate monitor on and she would climb and do a little bit and then, right when she started to feel the symptoms or when her alert would go off, she would do her breathing and down regulate and had a place where it was quiet and could bring her body back down in a better state. But that allowed her to still participate in activities by offloading some of the other things that don't bring joy, like vacuuming, you know, or making a meal sometimes is not as fun and so she was able to cut out some of those activities so that she could still participate.

Clayton Powers: 59:07

And I've had another teenager comes to mind as well that I was treating, where his mom was saying I can help you, I can do your laundry, I can do these things, and he wanted to feel that independence of being able to do it himself and things, and I mean it's up to him. So I wasn't like no, you shouldn't, it was more like what's most important to you, does that really matter, or would you rather do something that's enjoyable with your energy, like um. And so he, he actually started to allow family members to take care of some of those other things so that he could just have some joy and do things that matter to him yeah and yeah isn't.

Jackie Baxter: 59:53

Isn't that just so important? So hard to say no to people and to accept that help, I think. But I think it's. Yeah, it's finding ways to do that, isn't it to to have some of that joy in your life, because that's just so important. Yeah, and isn't that maybe a beautiful place to stop? I feel like we could talk all night. Clayton, thank you so much for giving up your time and coming along and chatting to me. It's been an absolute pleasure and I've learned loads, and I'm sure other people have as well.

Clayton Powers: 1:00:28

So thank you oh, thank you and all your listeners and I'm happy to help. So it's just we're all in this together to try to make change yeah, absolutely.