#38. Pacing is Power - POTS, PEM, EDS & MCAS strategies

Clayton Powers (0:05): So many of these patients would say the same things to me that they weren't listened to by their other healthcare providers, that they were told they just have anxiety or depression, they just need to exercise or lose weight, and I could tell that that was really impacting patients negatively. The first step is I learned how to validate that. Yeah, that's not right. That's not how you should be treated in healthcare, and we should change that.

Emily Kate Stephens (0:35): Welcome to Make Visible, the podcast shining a light on complex chronic illness. I am your host, Emily Kate Stephens. Welcome back to another episode. Gez - very big welcome to you. How are you doing?

Gez Medinger (0:55): I'm surviving. I think that's what I say every week, but I think it's more or less true every week. So long may it continue as I continue to survive.

Emily Kate Stephens (1:02): Well, I and I hear from a lot of our audience are very very pleased that you are surviving, and everyone seems to really enjoy our conversation here, both when we talk about how we're doing, so that personal element, and also they're really enjoying hearing the breakdown of some of the more scientific elements. So, thanks for surviving and sticking with us.

Gez Medinger (1:27): Well, what's the alternative?

Emily Kate Stephens (1:30): There isn't.

Gez Medinger (1:31): No, there isn't one, is there? So, on we go.

Emily Kate Stephens (1:33): So, this week we bring you an interview with Dr. Clayton Powers, a physiotherapist and consultant at the Bateman Horne Center, who work extensively with people with complex chronic conditions. He works with patients who have ME/CFS, POTS, MCAS, Long Covid, EDS. But he almost wants to not ignore the diagnosis, the labels, but he digs into people's symptom set and how it is affecting people's lives, rather than necessarily specifically what their illness is. Now we have to separate that out because anything that does cause post-exertional malaise or have that post-exertional malaise element to it is treated differently in a physiotherapy and a physical space from other conditions, and that is what he really tries to tease out and tries to implement strategies to help people be able to live a fuller life. You initially trained as a physical therapist who, in the more traditional fashion, did orthopedic work, mobilizing people, and that sort of rehabilitation. But relatively quickly into your career, you found that there was this huge strand of people who were not necessarily being looked after in the same rehabilitative way, and I believe that you started researching into post-infectious and autonomic dysfunction conditions. Tell me a little of that process and how you found this group of patients that you felt needed help.

Clayton Powers (3:12): Yeah, like you mentioned originally, I trained more as an orthopedic physical therapist and spent a couple of years working in that setting, and I was also trained in vestibular therapy to help people with dizziness and concussions. So I was working with patients who had concussions, and then one day I had a patient who was referred to me, and the doctor said, "Do you treat POTS as well? And I thought for a moment. I didn't respond right away, and I researched as much as I could to understand what POTS was, and went down the rabbit hole of seeing all these things online about POTS. And then the next day was like, yes, I can treat that patient. And once that patient came to me, I spent time talking through the symptoms and kind of used the the approach that was there at the time, which was the Children's Hospital Philadelphia protocol, or CHOP, or Levine protocol, whatever you want to call it, a graded exercise program. And so I started with that patient, and then I started seeing other patients show up, and they had similar symptoms. And I thought, you sound like you may have pots. And I test them and realized this is way more common than I realized,

Emily Kate Stephens (4:24): And a lot of those people were not necessarily diagnosed with it. So -

Clayton Powers (4:27): No, they were being referred to me for neck pain or back pain or concussion or dizziness. And then as I would work with them, I'd recognize those patterns of maybe there's something else going on. It sounds like you might have POTS, and that's the extent of what I knew. And so one day I had a patient come in who said she came in in a wheelchair and she talked about how she has good days and bad days, and today was a bad day, and so she was in a wheelchair and she said, "I also have ME/CFS on top of POTS. And then she said, "Do you know much about ME/CFS, and at the time I was like, "Well, no, but if it's similar, I'm sure I can help, and we can figure this out together. So some of the things I may have suggested back then were not very helpful because she didn't come back, and I don't blame her because back then things I said were probably suggesting like gradually increase your activity; it'll just get better. But I, I didn't stop there, and I kept reading and looking into how physical therapists can help people with ME/CFS. And I came across the Work Well Foundation's content as well as Bateman Horne Center's content, and so I reached out to both of those groups: Todd Davenport at Work Well Foundation, and I reached out to Bateman Horne Center and started getting connected with these groups and learning as much as I could. And then one of the driving forces behind me wanting to help was that so many of these patients would say the same things to me, which was that they weren't listened to by their other healthcare providers. That they were told they just have anxiety or depression. They just need to exercise or lose weight, and I could tell that that was really impacting patients negatively. And so the first step is I learned how to validate that. Yeah, that's not right. That's not how you should be treated in healthcare, and we should change that. And so that's really what drove me to want to get involved? I don't have a family member or anyone with these conditions. It was more just seeing the need there that there's a lot of patients not receiving adequate care, and so that's where I first got involved. And then then COVID happened about a year after that point,

Emily Kate Stephens (6:37): Right.

Clayton Powers (6:38): And I started seeing this is going to go really bad quickly because so many physical therapists are trained to just start pushing people to exercise and being more physically active.

Emily Kate Stephens (6:50): And we're still receiving that directive at that point.

Clayton Powers (6:54): Yeah, and so I started seeing - it was interesting. There were times in the clinic where I would hear another physical therapists. I'm walking to go get lunch, and I hear a patient say, "Yeah, I just can't since COVID. I just can't tolerate things anymore. And I'd hear a therapist say, "Well, we'll just gradually get you exercising. It'll get better. And I'd have to stop and go over to actually let me talk to the patient, and I would assess if they had post-exertional malaise, and then try to redirect and give them other resources. And at one point, I decided this needs to get out there. So I went around Utah teaching at a lot of different PT clinics just to raise awareness about long COVID and post-exertional malaise, so that we wouldn't be the ones causing as much harm. Because at the time, our reputation was really taking a hit because patients were going in or being referred to PTs and then being made worse.

Emily Kate Stephens (7:49): Yeah, being made worse.

Clayton Powers (7:50): Yeah.

Emily Kate Stephens (7:51): One of the big pieces that you have just mentioned there, and I assume that this comes through your research into MECFS, is your understanding of PEM post-exertional malaise because that is really one of the key differentiations between POTS and the way that you were originally treating POTS, and then the post-viral bucket, if you like, that have this post-exertional malaise. Tell me about you beginning to understand that post-exertional malaise and how you then connected that at the beginning of COVID to realizing that this was a similar situation in terms of that energy deficit, that -

Clayton Powers (8:31): Production issues, yeah. So with post-exertional malaise, where I started recognizing that was I was early on using those same exercise protocols that are originally designed for people who are deconditioned. What's funny is, at the time, I didn't realize that as a PT you don't realize unless you follow up after the appointment how people are responding. So I remember I had two patients who both had POTS, and I was working with them, and they were doing the exercise protocol, the chop program. And as they were doing it, I was thinking they were getting better because the first time we started, they could only go around the bike for about a minute, minute and a half, and then were exhausted and we stopped. And then as they did that exercise over time, they were able to last longer, up to forty-five minutes. Wow! And so I thought, wow, this is improvement. But then, after learning about post-exertional malaise and ME, the patient kept having these flare-ups during the process. So we'd restart, and eventually, I went back and said, "I just learned about this condition, ME/CFS. Let me ask you: Is this exercise program changing your life in terms of what you can do in your life?" And she said, "But well, both of my patients said no. It's more like a pie. And if I exercise, it takes a piece of the pie, but it doesn't give me anything in return. If I exercise, then I can't make a meal for myself. Or if I exercise, then this happens." But we had bought into this idea that exercise was going to help, so they were trying it, and they were increasing their tolerance for biking or the treadmill, but not other activities in life. So then I said, actually, let's scrap that. Let's start over. Scrap the exercise, and actually, let's work on minimizing how much exertion you do. And then we followed up a couple months later. I was like, now I'm able to do more, and or I have less less symptoms as well. So that's taking it out.

Emily Kate Stephens (10:34): Yeah, it's like the complete reverse of what so many people are told to do. With Long Covid, I was told to start lifting weights because the person that I got sent to see didn't have any knowledge of the condition at all. In fact, he said to me, "I think you know more about Long Covid than I do", which is true because I was living with it. But this problem of the majority of healthcare practitioners not having - it's not simple understanding - that very clear understanding of the very clear difference between who is positively impacted by exercise and who is not is something that you have then spent so much time trying to educate the healthcare providers on. You are not in any way saying that exercise is not beneficial. Last year, you wrote a systematic review with two of the people that we've previously interviewed. That was with Dr. Tae Chung and Professor Todd Davenport, where you you do see that there is benefit of exercise in some cases of pots, but the finding from that was that there needs to be a lot more research into how you separate out the people who are going to benefit from those with the comorbidities. Talk to me about when people come in to see you. What's your process of determining that? How do you work that out?

Clayton Powers (11:52): Well, a lot of questions, and I try to minimize and try to be direct so that we don't spend a ton of time talking about that. I mean, I don't want to wear out the patient with all these questions, but some of the main questions I ask that originally came from Todd Davenport's the Work Well Foundation, and then I kind of adapted some of them based on what patients were frequently telling me. So I'll ask how long it takes to recover after a busy day or activity. Does it take more than 24 hours? And often, what I find is my patients who are more mild with POTS and do benefit from exercise, they may say one day that it might take a day if they get flared up. But patients with post-exertional malaise takes two to three days or longer. And then when I ask them what usually triggers their symptoms. It's any type of exertion-physical, sensory, cognitive, socializing. Versus some of my patients with POTS who don't have post-exertional malaise, it's more the upright positioning. At one point, I had someone who had POTS but not post-exertional malaise, and he said to me, "If I could live my life laying down, I could do everything. I could work. I could do all the activities. And I said, "And you wouldn't crash or have a couple days where you would feel exhausted. And he was like, "No, it's just the being upright that's a problem for me. And on the other hand, my patients with post-exertional malaise would tell me, "No, I could still crash by doing too much cognitive work. Even if I was laying down, relaxed, if I'm doing too much cognitive work or there's too much sensory stimuli, then that's going to cause me to have PEM. One of my patients went to a concert and was laying down most of the concert, and even had earplugs to kind of mute the noise and have sunglasses on. But the sensory overload of having all these people around and all that ended up putting her into a big crash. And so those are some of the questions I ask. I also ask things like, Have you tried exercise for your symptoms? And if so, did it seem to help your symptoms or make them worse? What type of exercise did you try? Because some people are like, Yeah, I tried exercise. I tried going walking, which for someone with orthostatic intolerance wouldn't help. And then we talk about: so, did you try aquatic exercise or exercise lying down, and how'd that make you feel? Another question I ask is: If you don't exercise regularly, do your symptoms worsen? And some of my patients with POTS say yes, I need to be exercising regularly, or my symptoms do worsen. On the other hand, other patients say no. I don't exercise regularly because if I did, I would be worse. And then one question that came up was a lot of patients would say, "I feel worse if I rest too much. So I started asking patients to differentiate between POTS that tolerates exercise and patients who have PEM or ME/CFS and don't tolerate exercise very well, I would ask, "Do your symptoms worsen with resting too much? And my patients with ME would say, "No, if I rest, I feel better. And some of them would even say, "If I rest for two days in bed doing nothing. My POTS gets better, and I can actually function then. So there's this disconnect. Some patients, their POTS actually improves by resting more, and some where it improves more by moving more in recumbent positions.

Emily Kate Stephens (15:16): So that's what I was going to say. One of the things that you just said that is, you ask your patients, did you try exercise, aquatic exercise? Did you try recumbent exercise? And I think that this whole area of the differences of exercise, exercise as one word, is actually a little bit ridiculous because we classify all of these things, even you know, just one lift of your arm as exercise. There is such a broad spectrum of what it means. Talk to me a little about those forms of exercise that you might be able to offer to patients who say, "I can't walk. I can't go for a long walk anymore. I can't even walk to the end of the road anymore. The types of things that you try with that that might enable them to move their bodies without exacerbating symptoms. What do you have in your toolbox?

Clayton Powers (16:04): Well, I love that you use the word toolbox because that's how I view our work as physical therapists. Is we have this big toolbox of strategies we can use to help people, and exercise is one tool in the toolbox. And then that tool has a lot of differences, like you mentioned. For some people, gardening is exercise. Or for another person, we may use the term breathing exercises or mindfulness exercises. So there's a whole host of different types of exercise. So when someone says exercise, it doesn't work for me. It may be that we're talking about the wrong. We're not connecting on what there's a huge variety of different ways we could use that. In general, when we're talking about exercise that makes things much worse, it's anything that pushes you into using a lot of energy that you don't have, pushing past that energy envelope. So aerobic exercise, especially endurance type activities without rest breaks can be taxing or tiring for those with post-exertional malaise or POTS. Either one, if it's too much, it can lead to increased fatigue and issues. So, for patients who are really low level, we may not work on exercises initially. Like more severe cases, we might work more on strategies for calming the nervous system, for increasing blood flow passively, and lymph - lymphatic drainage - so I'll teach family members how to do lymphatic drainage gently or help blood flow gently without stimulating the person too much. Then if somebody is starting to be able to tolerate things a little bit better, the the main thing I emphasize is I don't really have to tell you exactly what exercise to do. When people start feeling better, they start moving more and doing more naturally. They just want to do more. So, as patients, as I give them strategies and they start feeling better, often they're like, "Well, what exercise should I do? I'm like, "Well, are you able to now make a meal or take a shower or do the things that are important to you?" And if they're still struggling with those things, then I try to minimize how much extra I'm adding. I will say though, because I know the question you want to hear also is what kind of exercise might not crash someone as much, and so sometimes we'll do isometric, like just sending signals from your brain to your muscles to turn on. That's that's the start. If you're having weakness in your legs and you can't go up the stairs, maybe we just start working by turning on those muscles again, without doing a bunch of reps or fatiguing the person.

Emily Kate Stephens (18:45): It's interesting because it almost sounds like what you're doing with that kind of strategy, when you boil it down to a very simple signaling system, is you're actually doing something that's neurological rather than necessarily a physical thing, which ties into the whole fact that so many of these conditions have such nervous system component, and as you just mentioned, you've got a whole nervous system section of your toolbox. That's not something that I normally hear physical therapists talking about. Is that something that you employ directly with your patients, or is it something that you say you could try and go and look for something about breathing, something about regulating your nervous system.

Clayton Powers (19:26): I spend a lot of time talking about strategies for downregulating the nervous system, and I have to say though, everything I've learned has primarily come from patients. They're the ones after treating hundreds of people from varying backgrounds and conditions and different types of post-exertional malaise and pots and all these conditions. That's where I've learned the most is people saying this helps my symptoms. I found this really helpful, and then I go maybe someone else will benefit from that, and so I share that with someone else. And over time, I found strategies for the majority of patients, and then there are always some patients where no matter what we try, I'm having to really look in the toolbox. What else is there? What else can we try?

Emily Kate Stephens (20:12): Scrabbling around at the bottom of the toolbox.

Clayton Powers (20:15): Yeah, and usually we're able to find a few things that are helpful for managing the symptoms, but often the patients who it's really hard to detect anything that seems to make a difference have something going on that's underlying, like a cranial cervical instability, or one of my patients who I spent two years trying to figure out anything that would help, and it was like nothing was working. She had major mold exposure in the house that was keeping her sick, and then once they moved, her symptoms all started improving, and and they actually got it detected, tested, and it was also making other people in her family sick, and so that was one of those where I was looking my toolbox, going, "Why is nothing working? But it was actually because there was an underlying issue that wasn't being addressed.

Emily Kate Stephens (21:01): interesting because there are still a lot of unanswered questions in multiple of these conditions about whether the trigger or whatever caused the descent into a post-viral condition, or maybe sometimes it's not post-viral. It can be bacterial. We're talking about Lyme. We're talking about mold exposure. That idea of whether the trigger is still ongoing in your body. Do we have some kind of viral persistence? Do we still have something? And what you're suggesting there in the way that you approach patients is that for many people possibly suggests that that trigger has just caused this complete smash of the autonomic nervous system and a complete dysregulation of probably the endocrine system, immune system, but it's not necessarily still there and still active. And by bringing in some of these exercises, you are actually able to rebuild people to some semblance of health. Have I got that correct? That strategies can actually take people forward in their journey.

Clayton Powers (22:02): Yeah, and for a big portion of patients that I treat, some of the simple strategies are using a cold pack on the back of the neck. When somebody is starting to experience some symptoms of post-exertional malaise or other things, I'll have them lay down. I'll put a cold pack on the back of the neck or on the back of the spine, and often that downregulates things. But then I use other strategies, like for patients who have this one's not for everyone, but the majority of my patients, I have compression boots that are also circulate. They also circulate cold water during them, and I'll put them on the legs as the person's laying down, and ask them how are you feeling, and usually they most patients will say that they leave the appointment feeling better than they did when they came in. That they were dragging, they weren't feeling well, and then when by the end of the appointment, I say, do you feel like you have more energy or less energy and brain clarity than before you came in, and usually they leave saying they feel actually better, and then I follow up the next day or two and ask how did you do after? Is sometimes people crash, but for the most part, we're able to keep them from crashing from the activity by having them lay down, put a cold pack on the back of the neck, put compression boots that are cold to push blood flow back to the head. Sometimes I'll use a cold pack on the stomach as well or abdomen. And then for some patients, and I've gotten better at when I'm interviewing patients to know who's going to respond to which tool most likely. And sometimes you guess wrong, but so for example, I also have a very light vibration device that is set at the same frequency as a cat's purr, and I'll use that on the palms and on the pec or other areas. Or sometimes I'll just while I'm working on someone, I'll have them hold it on their chest or abdomen, and then that will downregulate. I'll see people where I'll put that on their hand, and their shoulders will relax, and they'll they'll release a lot of that guarding. And so, I use a lot of different tools to first get the nervous system to downregulate, and then we can work on getting blood flow, lymph drainage, and things that help down get things moving in the body.

Emily Kate Stephens (24:20): But that that in itself, I know that you have the belief that the mind, body, and soul are all connected. It is still quite a divisive topic in some circles. But your suggestion that putting a cold compression boot on can one downregulate the nervous system and to push blood flow back up. It just shows how this this is so layered that we can influence the different systems of our body and how they all are interplaying in that way. Because they're using a very physical things to downregulate the nervous system, but they're also having a very physiological effect on on people.

Clayton Powers (25:03): Yeah, and that's where I didn't learn these things from school. This was patients telling me I feel better when I put a cold pack on the back of my neck, and so I tried that with multiple patients, and now I have a better idea of what percentage of patients respond. So I'll say to patients, 95% of my patients respond to this, and then I'll get one that doesn't. So, for example, another thing that has been really helpful is for a lot of my patients who have Ehlers-Danlos and POTS. Have you ever seen those little oxygen cans? They seem like a gimmick. They're just a can with it says pure oxygen.

Emily Kate Stephens (25:36): I thought they were just a gimmick.

Clayton Powers (25:37): Yeah, for most people, if you breathe it, I don't notice a change at all. But when I had myself after a concussion, I had some of these symptoms of orthostatic intolerance for a little while, and I I had tried it with patients, and I tried it myself. And when I had those issues, I would notice a difference. My head would feel that I wouldn't feel as lightheaded after a couple puffs, and so I started using that with patients as well, and it's about I would say 50-50, because it's only one or two puffs. But there's a subset of my patients who I tell them about that, and they use it regularly before they go up the stairs. They'll take a couple puffs of the pure oxygen, and then they say they don't have as much tachycardia. They're not as exhausted by the time they get to the top of the stairs or before a shower. So there's a subset of patients who actually really benefit from supplemental oxygen, and -

Emily Kate Stephens (26:31): Is there a correlation between their oxygen saturation and the use of really?

Clayton Powers (26:36): Yeah, so a lot of them will be told it's placebo because their oxygen saturation's high, but they report that when they're in the shower, if they have oxygen on, like a nasal cannula, and they're breathing oxygen just for the shower, they can get through it without crashing as bad, and they don't have to take a nap or rest after. So that's some research we still need to figure out why. But I had one patient who was bed bound for years, and he even had his computer set up so that he could work while laying down.

Emily Kate Stephens (27:07): Wow!

Clayton Powers (27:07): We tried the can with him, and it was interesting because he was bald and he was very pale and looked like he wasn't getting enough oxygen. When he breathed out of the can, his blood vessels in his head started popping up, and so I wrote a letter to the neurologist. Neurologist tested it with supplemental oxygen and saw his blood vessels would all you could see them much easier. And then when when it wore off, you could see him become pale again. So they actually prescribed even though his oxygen saturation was normal, he went to a pulmonologist. They said things were normal, but something neurologically he benefited from having supplemental oxygen. So they actually prescribed it for him, and then he sent me information back saying, "Now I'm making meals for my family. Now I'm going on 20 minute walks." And so

Emily Kate Stephens (27:56): That's been completely horizontal?

Clayton Powers (27:58): For years. So I don't we don't understand all of these things yet, so I don't like to throw out the excuse like, "Well, it's probably placebo, because we're still learning a ton about how the brain and body operate with these conditions.

Emily Kate Stephens (28:13): Yeah, and how they interact as well, and things like that are presumably quite hard to actually do the research and dig into.

Clayton Powers (28:21): We're we're working on it.

Emily Kate Stephens (28:23): Are you?

Clayton Powers (28:23): We're we're gonna do some studies on that and some of the other things that we use to help people.

Emily Kate Stephens (28:28): Fabulous! You mentioned there that you treat patients with elastinus as well, treat people with long COVID. You also work with people who have MCAS.

Clayton Powers (28:39): Yes.

Emily Kate Stephens (28:40): These are all tied together as conditions a lot of the time. But how does a physical therapist assist people with mast cell activation?

Clayton Powers (28:48): I love that question because I initially, when I first started learning about mast cell activation and I was helping patients, there were other physical therapists saying, "Why are you doing that? That's not your job, but there's so much. My job as a physical therapist is to educate people to help them navigate all of this. Actually, in Utah, they just passed a law last year that makes physical therapists considered as primary care providers here.

Emily Kate Stephens (29:15): Great.

Clayton Powers (29:16): And so it doesn't change our scope of practice, but it changes how we view our role. Instead of what exercise do I give, it's how do I help this person navigate the healthcare system? How do I refer them for imaging or help? We can order things like X-ray and other imaging, and then we can refer to other providers. I spend a lot of time understanding what things that person reacts to. For example, I ask, "Do you have seasonal allergies, asthma, eczema, overreaction to bug bites? Do you react to adhesives and tapes on your skin? Because if we use tape, I don't want to cause a bunch of rashes and hives. I ask about dermatographism. If the person, if they scratch their skin, does it welt up and stay welted up? I ask about medication allergies, food triggers, chemical sensitivities to smells and fragrances, and that way I get a sense of is this person mildly reactive or more severely reactive to a lot of different things, and that helps direct the therapy because some patients, even vibration, will cause them to break out in hives. So I've had patients who I ask that because I've had patients in the past where even a little vibration they started getting really itchy, like they were getting burned by mosquitoes, or the cold or heat on them will trigger a reaction. And so then once I have a sense of how they respond to different stimuli, I'll ask them about: Do you track what foods bother you, like tomato products, fermented foods, and we get a good sense of what their diet looks like as well. So I try to be really comprehensive with all of this, and then I can provide education handouts, or there are supplements that some people benefit from, like quercetin. That's a mast cell stabilizer. Another thing that's interesting is so the chromoline cilium is a mast cell stabilizer, and some patients, if they are going to put tape on their skin, like KT tape or other things, yeah, find milk of magnesia or cromolyn sodium on the skin, and then they let it dry. Then they don't react to the tape. And so there's little tips and tricks

Clayton Powers (31:28): patient who she had some of the chromolyn and that help people. You don't tolerate tape on your skin. There's a there's a hack for that. asked me to apply it on her back so we could tape it, and we moved it along. I missed the spot, and that was the only spot where later the tape there was a red mark, and everywhere else was

Emily Kate Stephens (32:34): Great because that's the sort of test that was just your test area to make sure that you yeah it was working.

Clayton Powers (32:42): So there's these kind of tips and tricks that if somebody has these reactions, then I will talk to an allergist who understands these conditions and give the allergist a heads up. Here's what I found. Would you be able to support them in this? And then I'll also help them by referring the dietician who understands this, but that way I'm figuring out the whole view of maybe they don't tolerate exercise because exercise for some people can trigger anaphylaxis.

Emily Kate Stephens (33:13): Yeah, and is that also just to deal with that level of stress? If histamine is the stress response, that that mast cell activation comes from a point of stress because I think a lot of people with mast cell activation know if they are in a really relaxed state or maybe they're happy on holiday and they've not got to go to work every day. And for me, I don't react to tomatoes when I'm in that situation. If I'm getting up at six a.m. and taking my kids to school and going to work, and then I react to every single food stuff. So that score it suggests that if exercise is actually another stress on the body that adds to your load, adds to the things that are pulling on your energy and on your resources, then that is just going to push your histamine to explode.

Clayton Powers (34:01): Exactly. Yeah, and that's where we spend time talking about that and educating. We have a conversation with the patient about that and why sometimes they react and sometimes they don't, and figuring out I react in this situation, but I don't in this can be really helpful as a part of the program and pacing activities, and even foods. You mentioned tomato-based products and things. I don't have mast cell activation, but I have seasonal allergies. Like this time of year, we have a ton of pollen, and this time of year, I start getting some allergy symptoms. If it gets too bad, if I spend too much time outside. Some of that, as we get pollen in our face, it drains down. Then I start getting reflux, and then I, during only this time of year, if I eat pizza or things and it's too much, I'll start getting reflux because you're also getting all that pollen draining down, and so you're getting that activation, and so then I'll have some of the reflux and take antihistamines to manage it. And it's surprising how many patients, when you ask them, "Well, have you tried antihistamines?" They're like, "What is that? Or no, I haven't." And then I've had patients have drastic improvement who just asking them that, and then they go over the counter get some, and they come back saying, "Wow, my symptoms are a lot better." So, a lot of these conversations, I'm not saying, "Okay, I'm prescribing antihistamines for you" because I can't. But it's more as you have a conversation and teach people, they make those decisions, and -

Emily Kate Stephens (35:36): That there are things that they can go and do.

Clayton Powers (35:38): Yeah, and I give them the toolbox, so then they don't have to rely on me as much.

Emily Kate Stephens (35:42): But that's also that that idea of this kind of stresses on the body is possibly why so many people are told to or asked if they've tried doing yoga, which I know is a real annoyance for a lot of people in the community. But perhaps it's that idea that if you are going to do exercise that is calming for the body and nervous system, perhaps there is benefit rather than that exacerbation of stress by doing aerobic or that more cardiovascular exercise.

Clayton Powers (36:17): Yeah, I will say there was a survey put out of patients who have POTS and how they responded to exercise, and also what exercise that they felt was helpful. And I think the number one was yoga. It was at least at the top somewhere was yoga, and it makes sense because you can take rest breaks when you need to. It can be laying down. Often with my patients, even if they do feel like exercise is helpful and they want to do that, I will use cold packs on the neck or abdomen or the legs to try to keep the body temperature down. Because as we exercise, our body temperature goes up, and then that can also trigger mast cell release or can trigger increased symptoms of blood pooling. And so we spend a lot of time with cold packs. I've said this a lot to patients. I say, if I was going to open a pots gym, it would be in an industrial freezer and with supplemental oxygen if you need it. I have some patients who don't don't tolerate the cold, but yeah,

Emily Kate Stephens (37:14): I was going to say this, the autonomic dysfunction causes some people to be really hot.

Clayton Powers (37:19): Yeah, so I always am aware of that. Not everybody responds to everything. There's no one treatment, and so the most important thing we do is really get to know that person and don't assume, but ask and see how they respond. Versus everybody responds to this. That's why I don't love the exercise protocols that are kind of just given to somebody. Just do this because in the research you had mentioned that systematic review, we combed through all the current evidence of exercise for POTS, and one of the findings is a lot of those early exercise programs excluded people with Ehlers-Danlos, mast cell activation syndrome, and ME/CFS, so that's a problem if you're excluding a huge portion of the patients that don't that have exercise intolerance, and then giving that out as this is the solution for everyone.

Emily Kate Stephens (38:11): Yeah, exercise is a really good idea for all the people who don't have exercise intolerance already.

Clayton Powers (38:17): Yeah,

Emily Kate Stephens (38:18): you did just mention the P word pacing. How instrumental do you find pacing in the majority of your patients?

Clayton Powers (38:29): That is one of the largest and most important things we focus on early on, because it doesn't matter how many other things I'm giving. If somebody's just pushing through symptoms and crashing, their body's going to be more flared up, and so we spend a lot of time talking about how to adjust. And some people pacing is really hard, even for someone who's had ME/CFS or POTS for years. They say, "I'm just now starting to understand pacing". And the hardest is when it changes. Sometimes the baseline changes. Somebody gets on a medication like low dose naltrexone or a different one, and maybe their baseline goes up a little, and now they're having to navigate how much can I do before I crash, or if their baseline goes lower, it's like they have to readjust. So pacing is super difficult. I use. I've told a lot of patients about the Visible device and about other wearable devices as well to just help them navigate, especially early on if they they haven't recognized those signs that they're overdoing or that they need to stop and rest. I always mention this one because I think it's really interesting and I'd love to study this - is I have a lot of patients who will use Visible or other wearables, and they will find them helpful. But their service dog will pick up on their need to stop and rest before the devices will. So I've seen a lot of times patients will set the device to give them a heart rate alert.

Emily Kate Stephens (40:00): Okay,

Clayton Powers (40:00): I'm not just talking about Visible, but patients will have an Apple Watch and they will set a heart rate alert like 110 beats a minute, and they're sitting at rest talking to me. And then I may see flushing in the face all of a sudden, or I may see them drooping, and their service dog will get up and alert them that something on. And then a couple minutes later their heart rate alert goes off telling them so there's this delay. The service dogs my patients who have service dogs will swab their nose when they're going into a crash or flaring and then have the dog they'll train the dog to be able to pick up on that scent and then the dog's able to detect and they kind of push them to lay down and lay on top of their stomach and lay on top of their stomach. So I I would love to know what scent they're picking up on, and if we could detect that earlier or something, alert people earlier.

Emily Kate Stephens (40:53): Do you think that is there is a need to set the heart rate alert lower in that case, and is that a learning that your patients make from that situation? Because I think a lot of what we need to do with any of these devices is that fine tuning and understanding that we are all still different, and that you actually did a study, a feasibility assessment of wearables in I think it was specifically in POTS, wasn't it? But you agreed that wearable devices can enhance self-management, improve communication with healthcare providers. But the final thing that you found there, kind of top line, was empower patients to take a more proactive approach to their care. And I think that's one of the things that even with the devices, it's that proactivity and almost that it's prompting the thought, prompting patients to take care of themselves a little better. Yeah, maybe it's just that nudge.

Clayton Powers (41:50): Exactly. And one of the things that was interesting is I've seen patients where the heart rate alert goes off, or the dog alerts them, and they turn off the heart rate alert and push the dog aside and say ignore the signal.

Emily Kate Stephens (42:03): The sign.

Clayton Powers (42:04): where we and

Emily Kate Stephens (42:04): That's what we this is all the time with our bodies, isn't it? Yeah. Yeah. You just over try to override those signals, and that's when things can go downhill fast.

Clayton Powers (42:15): Yeah. And so we look at those signs of, and when you feel short of breath, that's a sign that you're doing too much. Or if you start to feel like this is starting to feel hard or difficult, then it's time to take a rest break. And so, even if you have great alert systems to tell you, but you turn them off and push them away, then you're not going to see improvement in symptoms if you keep pushing through it. So I try to recognize those in the clinic. I'll see as we are working together, and maybe even point out, "Hey, do you notice that you're starting to be more short of breath? Let's stop. Let's take a rest break." And giving permission to rest is something that most healthcare providers I don't see them doing that. Like during an appointment with a doctor. I don't know how often doctors are saying, "Hey, looks like we could take a rest break here. Let's have you lay down and like let's put your legs up for a little bit." That would be so helpful if that was how healthcare was.

Emily Kate Stephens (43:13): What about inpatients, though? I think that patients do not necessarily give themselves permission to take a rest break, particularly in that kind of situation. I guess because it's not viewed as something that's acceptable, especially if you've got one of those medical appointments where you've got a really, really finite amount of time and you have to get in there, get through your agenda, and try and get some kind of outcome within the space of maybe 30 minutes, 10 minutes.

Clayton Powers (43:41): Yeah, I wish there was a better place to rest in the waiting room because if someone's rushing to get to the appointment, they're stressed, they're trying to find parking, then they get in, they're full of adrenaline, and then they're waiting. They've already checked in, and then they get to the doctor. They are starting to have brain fog and difficulty, and so that agenda of what the appointment was for-it's hard to communicate it, and so it's unfortunate because that probably happens quite frequently. And when patients come into the appointment with me, one of the first things we do is dim the lights. We already have the lights dim. I spend most of the day in a dim lit room, but then and it's a quiet, private room with a bed. And the first thing I say is, "It's okay

Emily Kate Stephens (44:23): there? if you want to lay down". And a lot of times, people will say, "No, it's fine. I'm good". And I'll say, "No, really, let's have you lay down". And they're like, "Actually, that would be great." So it's that permission to lay down, that permission to rest during the appointment. You don't need to sit up and talk to me. You can lay down, and we can make this work. Or, or also giving the permission to say, "Hey, if you need to switch the appointment to telehealth, just message me, or have a family member message me, and it's not a problem. We can switch it. I don't want you to be stressed about getting here if you can't make it. So I agree that we need to give permission, and not just give permission, but sometimes insist. "No, let's have you lay down" because it's hard for us to take care of ourselves and to say, "yeah, I really could use that." It's uncomfortable to lay down when someone else is talking.

Clayton Powers (45:32): Yes, I often say hope is on the horizon. Things are getting better. I'm optimistic. Healthcare providers are reaching out and wanting to learn. They want resources. They often it's the systems that are in place that make it hard for them to provide the care that we think would be best. But there are more and more people interested in learning about these conditions. So at the National PT conference this last year, Todd Davenport and I and some other colleagues, including Ryan Bourdo, we spoke about ME/CFS and we said pacing, not pushing. Physical therapists guide the post-exertional malaise, and we did an in-person with a lot of physical therapists there. And then afterwards, we were one of the most watched videos for the on-demand session, so 300 views right after. So there were a lot of physical therapists who are wanting to learn about these conditions, and then on the talks about dysautonomia at the National PT Convention, those are often packed. One year when we talked about POTS and ME/CFS, it was a couple of years ago when me and some colleagues talked about POTS, ME/CFS, Long Covid, these conditions. We had over 450 physical therapists attend that session. So there's a lot of interest. Where we need more help is from primary care providers, and I think it's the hardest for primary care providers because their appointment times are so short. Physical therapists are stepping up as primary care providers in this space because we have a lot longer time with the patient. I get an hour with each patient, so we are able to devote that time to really understanding them, and so that's where we're filling that need, especially in Utah, as primary care providers, and then going back and telling their medical provider, "Here's what I found. This perhaps may be. What are your thoughts about that? And so I think that PTs are stepping up in that role, and I'm I'm optimistic. There's a lot of people in this space who are really working toward new research, and one of the exciting things we're working on at Bateman Horne Center soon is going to be figuring out more post-exertional malaise-busters or PEM-busters, things that help people get out of crashes faster and that make the crashes not as intense. And last thing I'll say about that is when I see patients, I say I'm not necessarily gonna give you a cure for this, but I can almost guarantee that we can shorten your crashes, that we can make your crashes less intense and less frequent, and then usually that's our goal. And then as the months go by, I see people about every two to three months, and they say, "Yeah, now I have the tools. My crashes aren't as bad. They're not as intense. They don't last as long.

Emily Kate Stephens (48:25): That is is kind of the holy grail for so many of us. For so many of you who suffer from these complex chronic conditions, to feel a little bit better, to feel that those really heavy dark times can be shortened. That is an amazingly encouraging situation. I think.

Clayton Powers (48:43): Yeah, that's where when you give the toolbox, we try to give them the tools to manage it. So patients tell me after I feel like I have more control over this, and that's the goal.

Emily Kate Stephens (48:54): Amazing! Thank you so much, Gez. Tell me your thoughts.

Gez Medinger (49:02): Well, first of all, he gets it, and what's particularly interesting is that he came from a place of not getting it to then being presented with all of the things that he thought were true and all the preconceived knowledge actually not being quite as correct as maybe convention would have dictated. He talks about even the things that may be outside of the remit of someone who does his job, whether that's histamine intolerance or mast cell activation syndrome, but to actually have the curiosity to want to go and learn about those and how they might affect the patient they're seeing, and actually what he can then do to help them, even though he's not prescribing things for them, but identifying issues they might have, helping them to go and find the right care for those issues. I thought that was that was amazing, really. If everyone had that degree of breadth of knowledge as well as depth of knowledge, I think patients would be getting much better care.

Emily Kate Stephens (49:51): Essentially, everyone with one of these conditions needs a Dr. Clayton Powers because it's that sort of insight and looking at all of the different factions of how this affecting you and affecting your living, and then applying such a multi-strand strategy. That's one of the things I find so fascinating about this. It's not about physical therapy, physiotherapy as we know it at all. It's a whole different system of trying to actually help someone to create a baseline for themselves from which to start building a little better help, and I thought the amount of focus that he seems to put on things like nervous system regulation and this umbrella of physical therapy was was huge for me because of how separate people think that is, but it's so physiological.

Gez Medinger (50:43): It absolutely is, and what was interesting is hearing how effective he said that the cold presses were for people. And I've got my habit of having my frozen peas once they've softened a little bit and they're malleable, especially in hot weather. Get yourself on the sofa and either behind the in the crook of your neck, behind your head, or from your upper chest. I mean, yeah, it's. I hadn't really considered their role beyond simply cooling, but the nervous system impact is significant too.

Emily Kate Stephens (51:09): Calming.

Gez Medinger (51:10): I think one of the really interesting things he was talking about was the role of service dogs, and I haven't really considered the idea or the role of service dogs in the world of complex chronic illness. But of course, they can help, right? It makes sense, even to the degree that they are beating, and in the same way that we have service dogs and trained dogs that can smell cancer and stuff. That's how acute their senses are, and so it makes sense that they'd be able to pick up on people who are about to experience the physiological events, because of course the body is going to be emitting different scents at that point, hormonally chemically. The fact that the dogs were better than the heart rate monitors at detecting people starting to overdo it was very interesting. Made me think that Visible need to branch out into service dogs, but perhaps something like K9 from Doctor Who, if you remember that, a little robot dog, basically attached via Bluetooth to your Visible strap, and K9 can go around as a support dog, and it had that same turbocharging of helping you pace. So I think that's that's a new business strand for visible, which I really look forward to.

Emily Kate Stephens (52:11): I think that's brilliant, but in that vein, not everyone would be able to get a service dog or be eligible for a service dog, and it does highlight also the way - okay, it might be slightly slower than a service dog - but the way that a Visible or a wearable can actually help guide you, help pacing, not pushing, and that idea that we can use these devices to actually try to get us to a place where we are crashing less

Gez Medinger (52:39): and crashing less hard when we do crash, and then crashing for less long when we do.

Emily Kate Stephens (52:43): Yeah, the reduction of the duration.

Gez Medinger (52:45): And I think a lot of people are reticent to see doctors and physiotherapists who are conversant in this subject because they well, what they're going to tell me to do? They're just going to tell me the pace better. They can't help my condition. They can't make my symptoms better. And it's very easy to come at it from that perspective. But actually, if the things that have the greatest impact on your life are the crashes and when they happen, if maybe some less frequent, less bad, and quicker to recover from, wouldn't you want to do that? Yeah, and there may be all sorts of tricks that can help you do that that maybe you haven't quite clocked yet, and having another pair of eyes on your set of symptoms with all of the experience that they have of seeing all of these other different people with similar slash different slash complex presentations. I think there's a lot that people could get out of those experiences without necessarily writing them off up front. Just thinking, well, what they in time to do apart from pace, and I already do that.

Emily Kate Stephens (53:34): Yeah, you know the way that we always talk about this downward spiral. You get into this crashing cycle, and it just perpetuates itself. He was almost talking about reversing that process and working with someone who can actually help you so that you're going in an upward cycle, so that each time you crash a little less and for a little less long. People will say off the back of this conversation, yeah, but what's the point in me knowing all of this? I don't know, Dr. Clayton Powers, and I think one of the important things to mention is that whilst it might not be faring out everywhere at the moment, the Bateman Horne Center is doing huge amounts to try and educate all different levels of clinicians in complex chronic illness, and physiotherapists, and occupational therapists and those very hands-on people are a big area that they try to target. Dr. Powers himself travels a lot and educates a lot of other healthcare providers to try and spread this knowledge. So yes, it might not be coming to you immediately, but there are resources, and he also has a lot of great resources online that I will link in the show notes that people can dig into to try and help take guidance directly from him for your condition.

Gez Medinger (54:50): One of the other things that I thought particularly interesting was about how he was saying how people respond to this idea of permission and how people are so caught in this habit of working hard to pretend to be -

Emily Kate Stephens (55:01): No, I'm fine.

Gez Medinger (55:02): Yeah, to present as a normal human being, like a lifetime of conditioning means that these are the cultural norms that I have to behave by even if that comes at a cost to my symptoms because actually I really do have to sit down or I have to lie down. But that would be weird socially in this environment, so I'm not going to do it. And so there's a resistance to actually looking after your body and what it needs, and not making your symptoms worse. And it takes two times of him saying, "No, really, you can lie down". Before they go, "Oh, really? God, thank you". Just as a reminder for all of us that we shouldn't always need permission to listen to our bodies, and actually, it's okay to not feel like you're trapped in necessarily all of those societal and cultural that you've spent your life around, and it's all right to make the decisions you need to to look after yourself without feeling pressured in whatever environment you are.

Emily Kate Stephens (55:47): Yeah, and he described one of his patients who had been to a concert and spent the concert lying down. Now that is one of those things that most people would be thinking, I can't do that. It didn't go that well for that patient of his in that instance, but if there are elements like that that you can bring in that enable you to, and you and I have been talking about this previously, just bring in some elements of joy to your life, or bring in some semblance of the things that you actually love and want to experience, but have to do things that would not be seen as conventional-you'd not normally go and lie down at a concert. You'd not normally go and lie down in the doctor's office. But yeah, that permission to do them is huge.

Gez Medinger (56:31): And even stuff like, do you wear earplugs if you're out in a noisy restaurant? Because people might say, "Well, why are you wearing those?" Or it looks weird. Or it's making yourself unusual and stand out, which I mean, certainly if you're British and growing up in a British environment, in the years when we probably did, the last thing you want to do is to make self stand out or be weird, right? And there are all sorts of things that you might need to do to look after yourself that would come across as weird or unusual.

Emily Kate Stephens (56:56): Or I wore sunglasses indoors even for years because of just sensory overload with the light,

Gez Medinger (57:04): Yeah.

Emily Kate Stephens (57:04): and I don't really care anymore what people think of me.

Gez Medinger (57:08): You do get to that point eventually, don't you? But there are still times, actually, where you'll find yourself thinking, "Oh, I can't possibly do that because it'll look silly. Well, better to look silly than feel terrible.

Emily Kate Stephens (57:17): But give yourself the permission to do what you need for your body, even if it's at the cost of esthetics or or how it's perceived by other people.

Gez Medinger (57:26): It's really tough. And I think all of us maybe have people who we are comfortable being around because they're okay with us being weird, and then people who we are less comfortable being around because we just feel like we can't actually do those things that we need to do for ourselves because they're going to judge us somehow, we have to present more normally, and it's this sort of ties into it

Emily Kate Stephens (57:45): because then it's all that element of masking and appearing fine with those people versus the people who are more filling your cup or actually soothing your nervous system because of the lack of expectation for you to conform or for you to be less weird. I quite enjoy being weird.

Gez Medinger (58:02): Bring it on. I've got to the point now where I have stopped caring as much as I used to, and there's a lot of power in that.

Emily Kate Stephens (58:08): There is a lot of power in that. Gez, thank you so much for taking the talk to me today. I hope that everyone can just go out there and be their own weird selves after this conversation.

Gez Medinger (58:20): And love it.

Emily Kate Stephens (58:20): Have a great week.

Gez Medinger (58:22): Thank you. You too.

Emily Kate Stephens (58:32): 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.