E215:Intensive Pain/Exercise Programs for POTS with Dr. Cathy Pederson

[00:00:00] Jill Brook: Hello, fellow POTS patients and beautiful people who care about POTS patients. I'm Jill Brook, and today we are back with the wonderful Dr. Cathy Pederson to learn about some important findings for any POTS patients out there considering trying a certain kind of intensive hospital based treatment program. You all know Dr. Pederson by now, our founder and president, and today she is presenting research that she did herself in her capacity as neurobiology professor. Dr. Pederson, thank you so much for being here. Dr. Cathy Pederson: It's great to be back, Jill. Thank you. Jill Brook: Okay, so let's dive in. This is important stuff. Now, in this project, you studied POTS patients experiences with a type of program that I think some of us have thought about, heard about, wondered about. You call it an intensive hospital based rehabilitation program. And maybe for starters, you can just tell us [00:01:00] more about these programs. What are we talking about here? Dr. Cathy Pederson: Right. I know we had a physician that was really pushing this for my daughter. I know a fair number of people with POTS have tried this or thought about it, but they're not for everyone. So the intensive program, the ones that I'm talking about are primarily the inpatient programs. They're exercise intensive. And often they're recommended for POTS patients who don't improve with our typical treatments. So the doctor has already been through some of the compression and salt and medications and that sort of thing and not seeing much improvement and a lot of times they are referring POTS patients to these programs. Jill Brook: Sorry, can I just ask a question quick? When you say intensive hospital based and Inpatient. Does that mean that the patients are sleeping there? Dr. Cathy Pederson: [00:02:00] exactly. So they're literally Yes, right, so they are living at the hospital for three weeks and a lot of times if it's a child, the family will come and they'll live nearby and the parents actually have a part of this that I'll talk about in a minute where they do some of their own training as well. But yes, this is not the same as going to physical therapy once a week. Highly recommended, that helped my daughter a lot actually. This is something completely different. These are truly impatient rehabilitation programs that are in a hospital. Jill Brook: Okay. So I think that's important to note that these are people living at the hospital 24 seven for about three weeks. Dr. Cathy Pederson: Correct. And while they're there, they're in a really intensive program. They are literally in some sort of therapy eight hours a day. Every day for those three weeks, and for [00:03:00] many of our listeners who have POTS, That sounds terrible. That's a lot more than what a lot of us do, right? So, let me talk about the three sort of tenets that they're working on in these programs. One is pain. They're really trying to prevent pain related behaviors and decrease the focus on the illness overall. And so they use what's called a biopsychosocial model of pain. A biopsychosocial model of pain that is really trying to think about the different parts of pain. So bio is talking about your biology, your genetic makeup your tissues, maybe if you've had tissue damage. The pain receptors are called nociceptors, the pain pathways in the brain so they're, they're considering that sort of thing. The second part of biopsychosocial [00:04:00] is psych. And so the psych part is your emotions, your mood. Are you depressed? Are you anxious? What's going on sort of that way? And then the third part is social. And so social, that could be family dynamics, could be friendships, we know a lot of those things change as chronic illness enters our lives, could be financial, there are lots of things that sort of go into this, and so in this biopsychosocial model of pain, what they're trying to do is take the focus off of the pain, And, put the pain in a box, if you will So that's part of what they're doing during that eight hour each day. But they're also in therapy. And I mean therapy like you're thinking therapy, cognitive behavioral therapy, that again helps them to think about their illness, to think about their pain, to think about what's [00:05:00] going on in their life, how to cope with maybe the loss of friends or family members who don't believe them or just dealing with not feeling good. Every day, you know, so cognitive behavioral therapy, and then another part of that therapy block is biofeedback, and I know a number of our listeners have tried biofeedback, we did it with my daughter. So if you're really prone to what they'll do is they'll put electrodes on your neck and your shoulders, and they try to help you to relax those. So if you're having these tension headaches, and you learn to relax these muscles that can decrease the headaches. So, all sorts of things there. Now, what they're most famous for, though, are not the first two parts, that pain part, that therapy part. What they're famous for in our community, I think, is the exercise component. And there is a really heavy exercise component in [00:06:00] these really intensive, inpatient, rehab These are done with a physical therapist or an occupational therapist, so we've got professionals there working with the patients, but the physical therapy might be things like Doing aerobics in a pool, so you've got that compression from the water, but you're moving that body, might be using a recumbent bicycle, there are lots of different things that they can do, a lot of us I think have been through some physical therapy. Occupational therapy, less people know about that, although frankly we've had some wonderful interviews on this show with occupational therapists. Occupational therapists, their job is to help you live your best life. It's the occupation of living. So if you're having trouble going grocery shopping, how can you adapt? If you're having trouble standing at the stove and cooking, how can you adapt? So [00:07:00] occupational therapy is trying to help patients figure out how to use their energy in the best way that they can, get the most out of it. Power for their punch sort of a thing. And then they also have recreational therapy. And that's what it sounds like. It might be out playing games, but they want people in these programs to be talking with other people. Again, thinking back to that bio psycho social model of pain, learning from each other, talking to each other, having a good time, and learning that they can do those things even though they are in pain or they are chronically ill. So they're doing all of those things every day, again for a total of about eight hours a day for the three weeks that they're there in the program. Jill Brook: Wow. Yeah. So I see where the word intense comes into the equation. I mean, I see the value of really [00:08:00] packing in all of this different kinds of therapy, try to address everything at once, but wow, that sounds like a lot. And I have to say that I'm thinking about how my brain, even after just a few hours of being social in a day, it almost feels like it overheats. And so I can see where this. This would be tough, but in theory, it sounds like, wow, it sounds like you're just throwing the kitchen sink at it. Dr. Cathy Pederson: Well, and the idea is to try to help them build stamina over time. To push through some of the pain, to push through some of the illness and move on with living their lives. That's the idea of the program, I think. Let me add something. If you're talking about a kid, Who might go into one of these programs, often the parents are required to come in for their own training for about 20 hours per week for those three weeks. And so the parents will learn again about that biopsychosocial model of pain so that they [00:09:00] can avoid making some mistakes at home. And they'll receive some of their own cognitive behavioral training. So let me give you an example. The first couple of years of my daughter's illness. I was scared to death. She was developing new symptoms every couple of weeks. The symptoms that she had were getting worse. There was a lot of focus on her pain. She had terrible pain. Talking about bombs going off in her legs is what it felt like to her. And so we had charts, we did all this stuff. There was a lot of focus on my daughter and her pain. I'm not sure that's the best thing to do. For And so part of what they're doing with parents is saying, okay, sure, you've got to be sure that they have proper medication and good nutrition and they're exercising the way that their doctor says that they should be doing, but don't focus every minute of the [00:10:00] day. On their pain or on their illness, really try to support other things. Can they make it to a dance? Again, that social part is, is really important. And so that's what they're doing with parents is trying to make them more aware of how they can support their child once they come back home and everyone's trying to adjust to a new reality. So I think what they're trying to do in these programs is really prevent the What they call pain related behaviors. So again, that idea of focus on the pain or no I can't do that because it'll hurt sort of a thing both from the parent's side as well as the patient's side. And then they're also trying to decrease the focus on their symptoms of their illness. Again, the idea that you're more than your illness, you know, you're your personality and your thoughts and your intellect and all of these things. [00:11:00] And I do think In my family, I know for a couple of years, we were very focused on the things that we probably shouldn't have been as much. We were very focused on her pain, her symptoms, and not allowing those to get to the back of anybody's mind. Now, let me tell you, these programs have been around for several decades. And as we mentioned, they're very physical, intensely physical, and the reason for that is especially back when these programs were being designed, there was research that showed that about 70 percent of pediatric POTS patients and 90% of adult POTS patients were deconditioned. Now we're not sure that that's the truth anymore. I'll go through that here in a second. But that was the idea at the time. And so if deconditioning is a problem, maybe exercise can fix it. Okay, so [00:12:00] how were they looking at deconditioning? Deconditioning in a POTS patient was looking at things that, again, many years ago were in the literature. They were talking about low stroke volume of the heart. So stroke volume is the amount of blood That you're pushing per stroke or per beat. So how much blood is literally leaving the ventricles with every heartbeat? And if you took a healthy, quote unquote healthy person, and you took a POTS patient, what you would typically see is that the stroke volume was lower in that POTS patient. So that's one piece of evidence. The other one was that there was a decreased muscle mass in the hearts of the POTS patients. I think there was a question on Jeopardy a while ago about Grinch syndrome. Jill Brook: Mm hmm. Dr. Cathy Pederson: Do you remember that? A lot of people were really upset about that. I was thrilled that POTS made Jeopardy [00:13:00] personally. But, but the Grinch syndrome came from this study that again is several decades old now, showing that the hearts of POTS patients, their heart muscle was smaller than again an age matched control. the idea is, if that's deconditioning, exercise should be able to help that. It should be able to increase our stroke volume. So if that person is not pumping enough blood out of their heart, if their heart mass is not enough, is not as large as you think it should be, then we can move the needle on that, by adding exercise, but some more recent data has shown that in POTS patients, maybe the problem is actually low ventricular filling pressure. And so this is a relatively recent find, that the pressures that, that allow us to fill the blood into our heart are not quite right in POTS patients. So not as much blood comes in, then not as much blood goes out, and that [00:14:00] causes that low stroke volume. And so that may indicate that it's not deconditioning at all that's responsible for the symptom load. It's something else that's going on there. Jill Brook: I think what you're saying is that it might not be that the heart is weak. It might be that there's so much blood pooling, maybe because the blood vessels are overly stretchy, or maybe MCAS has made them dilated and leaky, or maybe there's just not enough vasoconstriction, and if you can't get the blood into the heart, you can't squeeze it out of the heart. Is that what you're saying? Dr. Cathy Pederson: exactly right. So if we've got blood pooling in the abdomen and the legs, we don't have enough at the heart and the brain. That's exactly, exactly right. Let me say too, there was another study, again, more recent than the ones that these programs were maybe based on, that found no evidence at all of deconditioning in POTS patients that had [00:15:00] CFS, chronic fatigue syndrome, and myalgic encephalomyelitis. And what they were doing in this study is they put them onto a bike. And they were measuring their peak oxygen consumption, and they found that, again, it was not different from normal controls. What they found instead is, when they did that tilt table test, The blood flow to the brain during that head up tilt was significantly lower than in controls. And that decreased cerebral blood flow was much better linked to their symptoms than the oxygen consumption during exercise. And so again, the picture is complicated. There's still work to be done. But maybe the deconditioning idea of POTS has a few holes in it. Let's say that. Jill Brook: So that would imply that you can't necessarily just make somebody exercise a whole [00:16:00] lot and expect it to do a lot of good. Well, Dr. Cathy Pederson: Right. That may work for some people, but I don't think it's going to work for all POTS patients. That's exactly right. Jill Brook: So this is interesting on a couple levels. One is a good reminder that some of these programs get Um, but the other thing that makes me think of is I've only spoken to a few people who have done programs like this. And what's interesting to me is how wildly different their experiences were. Some felt like it worked miracles for them. In one case I spoke to a patient where it was, it was catastrophic for her physical and her mental health. And I guess. I see the value of what you did here, because what we really need to know is not just the endpoints, but what does that distribution in the middle look like? What is the experience that most people have most of the time with it? Dr. Cathy Pederson: Right. Well, and I think that it varies [00:17:00] depending on your individual makeup. And I don't want to get too far ahead of myself with what we actually found, but we did find that the comorbidities with POTS actually make a big difference. So let me tell you a little bit about my study and some of the pitfalls of the study. So many of our listeners have taken. Some of my surveys over time, I very much appreciate that. I do come on and talk about these studies. We do publish them, and so we had 1130 people who had physician diagnosed POTS fill out a survey that we had up on our website, and there are some pitfalls to this, so I want to be really clear on this. We were not interviewing patients who were in these programs. We were not there before they started the program to get a baseline of how well they were doing. We were not right there when [00:18:00] they finished the program to find out the endpoints and how well they were doing. Instead, this really is a survey look. It's a big view, generalized view of these programs. We also had people in a wide variety of different programs. And so, it's not one program or another program that we're talking about at all. In fact, we didn't even ask participants to tell us where they went for their for their rehabilitation programs. Out of the 1130 people that responded, only 146 reported starting a program like this, one of these intensive, hospital based programs. Rehabilitation programs. So that's 13 percent had started it. Only 80 of those who had started a program, a rehab program, finished it. So of that 13 percent who had started it, Only 54 [00:19:00] percent ended up finishing the three week program. Jill Brook: Wow, I think we need to just take a moment to Reflect on that for a minute, because these things are not free, right? They're not cheap. They're probably a commitment. My, my assumption would be that POTS patients do not join these things lightly. And if they fail to finish one of these programs, it's not just because they were flaky, that Dr. Cathy Pederson: Oh, Jill Brook: Probably a reason that they didn't finish. Dr. Cathy Pederson: Absolutely. Yeah. I think that's exactly right. So when people don't finish, it could be a variety of reasons, but this is a big financial commitment. A lot of times families travel to be near the center. It's often not close to someone's home. It's not your local hospital who's running a program like this. And so there may be hotel bills. There's the payment for the actual program itself, the food that you have. And so, yes, [00:20:00] and, and again, I'm going to show you this in a second, but it's the sickest of the sick POTS patients who end up trying this. It's the people who have tried everything else. Nothing is working. They're desperate. And so, yeah, flaky is not how I would describe these folks at all. I think they're really committed to doing this. just can't finish, end up leaving early. And so that was about 46%, half, didn't finish the program. Jill Brook: Okay, okay. So we can come back to that later when we're talking about results, but tell us more about the survey. Dr. Cathy Pederson: So we asked some questions about the Rehab programs that they were in, but then we had some validated instruments that looked at a variety of things. So one was on fatigue. It's called the FACIT scale. One was looking at the GI tract and how well things were going there. So that was the [00:21:00] gastrointestinal symptom rating scale. The Malmo POTS symptom score was on there as well, and so that's a new survey by Dr. Fedorowsky. It's a great tool. Great instrument. And then the last one I'd never used before, it's called the self management assessment scale. And it's looking at how well people are sort of running their own lives. And so we use those four instruments along with a few questions about these pain programs or exercise programs to try to figure out what was going on in the community. So again, folks, remember, this is broad. It's not targeting any single program. And we don't have baseline data. People could have finished a month before they took the survey. It could have been a year. It could have been 10 years. So I want to be sure that we're really clear on that. Jill Brook: And also it was only adults that answered this survey, right? Dr. Cathy Pederson: Yeah, these were folks that were 18 and above [00:22:00] for the survey. Right. All right. You ready to hear what we found? Jill Brook: Yes, what were the results? Dr. Cathy Pederson: So we're going to break this down and look at various demographic groups that completed the survey. So let me start first with people who enrolled in one of these intensive rehab programs versus the people who, who had not. So remember, we only had 146 out of 1130 that had enrolled. And so that's about 13 percent of the population that we surveyed. And what we found is that those POTS patients who enrolled in one of these programs were sicker than the people who didn't enroll. And again, I think that makes sense to all of us. So what we found statistically is that these folks had more total diagnoses. So that maybe they had POTS and myalgic encephalomyelitis and mast cell, [00:23:00] whatever combination of things that they had. They also had higher incidence of some of these that we talk about all the time. So they had a higher incidence of chronic fatigue syndrome, myalgic encephalomyelitis, if they enrolled in the program. They had a higher incidence as well of Ehlers Danlos syndrome and of mast cell activation syndrome. And finally. They actually also had higher scores on the Malmo POTS symptom survey and on the gastrointestinal survey that we gave. So by every way that we looked at them, the people that enrolled were sicker. They had more diagnoses. They had more of the comorbid chronic fatigue syndrome, EDS, MCAS. And they did worse, their scores were higher on some of these symptom scores. Jill Brook: So that makes sense because I think anyone with a choice who feels good enough, isn't going to go put themself in a hospital for three [00:24:00] weeks and do this. So yes, that makes perfect sense to me. Dr. Cathy Pederson: Absolutely right. And I think all of our listeners would say, duh, we probably could have told you that. But I have to do that. I have to do those stats to be sure that that's what's going on. Let's get into some more interesting stuff. Okay. So let's look at the people that enrolled and I'm going to divide them into two groups. So I'm going to have those that completed the three week program versus people who left early, okay? So again, we had 80 people who took our survey who had completed the entire three week program, and then we had 66 that left before that end point. And so when we compare these two groups, what we found was that the POTS patients who completed the rehab program had a significantly lower incidence of disability, [00:25:00] meaning that they're not on medical disability. And remember, we're comparing those that completed the program versus those that left early. So the ones that left early, they're sick, but they're just not flourishing in that program. They're not seeing improvement and likely we're getting worse. We don't know that for sure, but likely we're getting worse Jill Brook: So the question about the disability is what's the chicken and what's the egg? Dr. Cathy Pederson: actually. Exactly, so again, not a big surprise there, but it's interesting to think about. The other difference that we saw between those that completed the program and those that left early was that those that completed the program had a higher self management score for things like daily routine and emotional adjustment. a lot of what they do in these programs, remember, is try to get you into a very structured routine. Breakfast at this time, and then you do this, and then you do [00:26:00] that, and then lunch at this time. And so that's a good thing. People that completed were really much better about their daily routine, and also that emotional adjustment. Remember again, these programs have a lot of therapy. It's not just exercise. They do individual therapy, they do group therapy, really trying to help people deal with their pain. And deal with that chronic illness. So those are good things, right? That people who completed the program ended up doing better than those that left early. Jill Brook: Although again, I think you'd have to ask what's the chicken and what's the egg. It's possible that people who had better routines to start with did better in this program. But yeah, I get what you're saying. Yeah. Dr. Cathy Pederson: Right. And remember, we don't have that baseline data. So we're taking a global view of lots of people who have done lots of different programs. Right. So this is not a perfect study. I will be the first one to say this is not perfect, but I think [00:27:00] it's interesting. And I hope our listeners think it's interesting as well. Jill Brook: Boy, okay. Yes. So I guess, I guess first of all, can I just ask how did you have them assess their success or failure or results from the program? Was it on a rating scale of 1 to 10? How did it go? Was it I felt better, I felt worse, I felt the same? Or what kinds of ways did we hear from patients about their experience? Dr. Cathy Pederson: Right. So what we did was we asked people how they felt after the program. Were they feeling better or much better? Were they feeling about the same or were they worse or much worse? So we had five categories that they could report how they felt after completing the program. And so let's start with the group that completed the program. Those 80 that did the full three weeks, okay? From [00:28:00] those 80, 46 percent reported feeling better. Let me say that again. For the people that finished the entire three week program, 46 percent reported feeling better or much better, which means the 54 percent either felt the same or worse, right? Jill Brook: did that break down? Okay. Dr. Cathy Pederson: Yeah, okay, so 37. 5 stayed the same. They said they didn't really feel better, but they didn't feel worse either. They didn't feel like the program had a lot of impact on how they lived their daily life. Sixteen percent, sixteen percent though, felt worse or much worse. And the people who hung in there that entire time, that whole three weeks and sixteen percent felt worse or much worse. And so that's tough, Jill Brook: That is tough. And you know, I [00:29:00] could not help but wonder. So let's put that whole pie together because this was just among the people who completed the program. And so when I looked at the whole pie you had said 46 percent dropped out and I can't help but assume that they had to drop out because they were feeling worse before it was over. I don't know. Is that your, is that your assumption? Is there, is there a lot of other explanations? Dr. Cathy Pederson: I think it's pretty likely. We didn't ask questions about that, I wish we would have. But it seems to me like that would be the leading cause. So those that completed the program and those who didn't and what happened with their data. If we can hang on to that for just a minute. Okay. I want to stay with this 80 that finished the program. So we've got 46 that are better or much better, 37 percent that stayed the same and 16 percent that felt worse. [00:30:00] And so we looked at those outcomes, their perceptions, they're better, they're the same, they're worse. And when we compared the data that way, we found that the ANOVA was significant for total number of diagnoses. But when we looked at the individual parents, nothing fell out. Jill Brook: Can you explain that a little more? What do you mean when you say when you looked at the total number of diagnoses? Dr. Cathy Pederson: yeah, so when we looked at the total number of diagnoses for those that said that they felt better or much better, we put those together into one group versus those that stayed the same and those that felt worse or much worse, we put those together into one. Then we ran the stats on that and we wanted to see if there were any differences in the characteristics of the group based on their perceptions. Right, they're feeling better, they're feeling the same, they're feeling worse. the total number of diagnoses, there were [00:31:00] no significant differences in the group pairings that we did. But when we looked at the incidence of Ehlers Danlos syndrome, interestingly, that group that said I felt about the same. Before and after the program had a higher incidence of EDS than the group that reported feeling better. Let me say that again. So the group that reported that they felt about the same, they stayed the same before and after the program, had a higher incidence of EDS than people who reported feeling better or much better. Jill Brook: So Dr. Cathy Pederson: very interesting. Jill Brook: EDS was associated with a lower rate of feeling better afterwards? Dr. Cathy Pederson: That is exactly what I'm saying. And so right now, we're not looking at these comorbid diagnoses when we are referring POTS patients into these programs. And what this study, by the time we're done here, [00:32:00] what this study will show is I think we should be. I think we should be looking at some of these. Jill Brook: Okay, so that's interesting. So people who had more diagnoses, just a higher number of diagnoses, were no better or worse than people who had a lower number of diagnoses, but the EDS did stand out as making a difference, apparently. Dr. Cathy Pederson: That's right. And so those are, again, for those 80 participants who stayed the full three weeks and finished the whole program. Jill Brook: And do you recall, on average, how many diagnoses they had about? Dr. Cathy Pederson: I think the average was four Jill Brook: Mm hmm. Okay. Dr. Cathy Pederson: 7, something like that. Jill Brook: Okay. Well, to me, that's meaningful because, you know, there's those patients who maybe just only have POTS and nothing else. And then there's, you know, those that start down the line of finding out that they keep racking them up. So these were, were serious patients is what I'm hearing. Dr. Cathy Pederson: That's right. That's exactly right. Now we parsed this data a number of ways. [00:33:00] So can I shift gears a little bit? Jill Brook: Yeah, for sure. Dr. Cathy Pederson: So we were interested in the patients who didn't finish as well. And so what we wanted to do was lump them together. Okay. And so we ran the results. Again, not just on the 80 that completed, but also added in the 66 participants who did not complete the program. So we've got all 146 who had started one of these rehab programs. And what we found was that about 40% Of that group, felt better, or much better, okay, about 40%. So it was 46 percent that felt better after completing the entire program. It dropped to about 40 percent when we add in the people who had departed from the program early. We had about 60 percent then that felt the same or worse.[00:34:00] Okay. And so we're seeing the, the felt better number is dropping a little bit to stayed the same and the felt worse or much worse is going up a little bit as you would expect because the people that left the program earlier being added in here. And so when we ran the data on this group, looking at the perceived outcome. So again, feeling better, stayed the same or feeling worse. We also saw significant differences, and a few more actually. So the EDS that that we were just talking about, popped out here again. So there was a difference in the incidence of Ehlers Danlos syndrome, where again, that stayed the same group, had a higher incidence of Ehlers Danlos syndrome than the group that felt better. So that's the same thing that we just saw. But now that we're adding those who [00:35:00] departed early in here as well, now here comes mast cell activation syndrome. So when we ran these data, again, the overall ANOVA popped. Between the, the better, the stayed the same, felt worse. When we looked at the pairings after that, the group that said that they felt worse or much worse had a higher incidence of mast cell activation syndrome than the stayed the same group. Very interesting. Jill Brook: And do we know about how big the effect size was? Was it really extreme? Did it suggest that almost? Nobody who had MCAS felt better and almost everybody with MCAS felt worse or was it just a little bit of a difference between groups or was there any indication of that? Dr. Cathy Pederson: We're only looking at 146 people. A lot of times we're at P is equal to 0. 001. And these are not bad. When you [00:36:00] look at the effect size, they're low, the ANOVAs are coming in at about three or four. So no, I don't think it's quite as clear cut as that, but it is interesting. And again, I think what we're maybe learning from this is we ought to ask these questions before we enter one of these programs, or as a healthcare practitioner, we refer a patient. So again, that MCAS group seemed to have a higher prevalence, a higher incidence in the group that felt worse or much worse than in the state of the same group. The last thing that we found here was the FACIT score, which was a fatigue score. And that the better group, the people that felt better or much better, were less fatigued at the point of our survey than those who reported that [00:37:00] they stayed the same in these intensive rehabilitation programs. I think that's not a surprise probably either. Jill Brook: And I would assume also better than the did worse group. Was, was that just assumed or Dr. Cathy Pederson: Oh, it didn't pop. Yeah. So. Jill Brook: enough people in the worst group maybe? Dr. Cathy Pederson: Right. Well, and again, our N is pretty low. The survey results for some of those early demographics, we had 900 people versus 146. Now we're talking about 146 and we're dividing it into the feel better, stay the same, feel worse. So our n has really dropped here, but I still think it's interesting. And it's something that I haven't found in the literature before, and so I think it's worth talking about and worth thinking about. Jill Brook: Yeah, for sure. And, you know, I apologize. I didn't mean to imply that your one survey [00:38:00] should answer definitively all the questions about these programs, but it, it certainly does suggest that more research is needed. I mean, have previous studies been done? What, what have they said? Dr. Cathy Pederson: Well, this is really interesting. You know, I write a fair number of papers. And when you write the discussion section of a paper and the introduction of a paper, you do a massive literature search. And so that's what I did for this paper. I did a massive literature search, really looking for anything that's related to exercise programs, to pain programs, the inpatient programs like this that we're talking about. And do you know how many articles I found? Jill Brook: How many? Dr. Cathy Pederson: Two. Usually, usually, I come up with 20, 30, 40, and I choose the ones that are most relevant for my study. And I sort of give a synopsis of those, not this time. So there's very, very little out there and [00:39:00] the two that I found, I'll tell you about what the first one was a case study. And Jill, I know you know what a case study is. You had a case study written about you, right? But a case study is written about one person, one patient and how they responded to something. And our listeners might be thinking, why would you do that? But the reason is sometimes there's something that's medically interesting that ought to be studied, maybe there's a new avenue to think about, and you don't have a big group yet, so you just publish about that particular case. That's what they did in this case. So it was a teenage boy who did one of these rehab programs, and this was a better study in some ways because they had the baseline data. They knew exactly what they had done through the program, and then they had the endpoint data. And what they found was that there was a decrease in functional disability. This young [00:40:00] man was doing better at the end of those three weeks than he was doing at the beginning, and he had a significant decrease in psychological distress. So he was handling his pain and handling his disability. Illness better, but that's an N of one. That's one person that you've run through this intensive program. The second study was by the same author actually, and it was quite a large study. They looked at a thousand people, mainly young people that had gone through their clinic, their exercise clinic, pain clinic, this intensive rehab that we've been talking about. They had a thousand patients there. But only 20 percent of them met the clinical diagnosis for POTS. So it's a little harder to tease this out, but what they found was that these intensive programs caused a significant decrease in [00:41:00] depression, that's a good thing, in pain that means I'm afraid to go out because I might get into more pain, or if I exercise I might have pain, or the pain is going to stop me in some way, but really focusing on that pain. And then they also had functional improvement. So the two studies that are out there are very positive. That second study had a 96 percent completion rate. So remember our completion rate is in the 50s, 54%. Theirs was 96%. So interesting. But again, only 20 percent of those folks were POTS patients. I don't usually go very far when I'm writing a paper from what my topic is, but the thing that I felt like was, was closest the Levine protocol. And that's very exercise intensive. It's not so much the pain idea, it's not so much the [00:42:00] therapy idea, but the exercise component is more what they're doing there. Now in this particular study, only 41 percent completed the protocol. Again, showing that these exercise programs are not for everybody. But, of those who finished their three month at home protocol, 71 percent no longer met the criteria for POTS, again lending the idea that at least in some patients, Exercise can help. It can be a good thing and so I don't want anyone to write in and say, oh, you know, Cathy is going on and on about how horrible these are and it was the blessing of my life. I don't mean to say that. What I want us to be thinking about as a community and for our practitioners to be thinking about is that maybe we need to discriminate a little bit. Maybe we need to think about the phenotype of that POTS patient, [00:43:00] meaning, sorry meaning what comorbidities they have and whether they might be a good fit for an intensive program like this. Jill Brook: absolutely. And you know, and how much pain is the right amount of pain to push through? How much listening to your body is the right amount? It sounds like it's hard to know. And. Like in so many things in POTS, everybody's different. Dr. Cathy Pederson: Absolutely. That's exactly right. And I think my point here is just that not everyone responds the way that we wish they would Jill Brook: yeah, I guess I can't help but think about the, granted, only two anecdotes that I know of. Where one was a girl who was able to walk again thanks to one of these programs. And that sounds amazing. It sounds like getting a big piece of your life back. It sounds wonderful. It sounds like, you know, whatever she went through during [00:44:00] those three weeks, I'm I know she thinks it was worth it. On the other hand, the other person that I spoke to they unfortunately had a suicide attempt after completing one of these programs and the family largely attributes it to to the stress and the pressure put on them to finish this, the, you know, fact that they were made to feel like they needed to keep going through the pain and that they didn't want to let their family down and all of that. And so I just am reminded that the stakes are very, very high. When it comes to making a decision about whether to try one of these programs, whether to persevere and to push through the pain. And so I'm so grateful that you started getting more data on it, and it sounds like we need a whole lot more and I just hope that people will not enter into these things lightly. Dr. Cathy Pederson: Right. Well, and I started this actually as I was getting ready to launch the survey. You [00:45:00] said, Cathy, you ought to add some questions on this because you had just talked to that individual. And this was really weighing on you. And so I really did sort of throw these questions in at the last minute. And I'm so glad that I did because, again, this is not a perfect study. There are a lot of holes that you could poke in it, but I think it's food for thought. And I think it's, it's worth starting this conversation again and, and really thinking more critically about how helpful they are or are not. Jill Brook: Absolutely. It's so amazing how I feel like I love speaking to you about all topics, but it's amazing how often when we speak, it's about, okay, what's the latest thing that your daughter's trying? What's the latest thing I'm trying? And there absolutely is this desperation to feel better. And once you try all of the mainstream things and all the recommended things and [00:46:00] normal things, you, you know, get a little more desperate. And, I guess we're all looking for that thing that we can do, and I'm just highly conscious that, that it basically just stinks that we're all in this situation of having to try things out of desperation that don't have good data, that do have potential risks, and we all just have to make those decisions. Keep doing them in the hope that we find that thing that helps. And I'm grateful to the people that reach out to us and let them know, because until we do have more data, these these anecdotes are really valuable. So I guess I'd invite people to, you know, kind of share what they're trying and what's helping now. And I guess I just want to send My heart out to everybody out there who is thinking about putting a lot of time and money and effort into that next thing that they have high hopes for. I hope it works out for them. Dr. Cathy Pederson: Me too. Me too. And you're exactly right. I think, and I think our families are not unique in this. I think [00:47:00] living with this kind of illness over months and years and decades, You do keep trying, hoping for even a small betterment improvement, you know, even if it's 5%, I know you talk about this all the time on the show, even if it's 10%, that's a lot better than where you were, and, but I do think with these programs, we have to be a little bit careful about who we're recommending should, should go in. So I'd love to sort of wrap up here and repeat some of the big findings again, if that's okay with you, just to help our listener. I feel like if they could be watching a slideshow as we're talking, that would be so helpful, Jill Brook: Well, we'll link to your article where they can read the whole thing. Dr. Cathy Pederson: yes, absolutely, absolutely. Okay, so again, this is my survey. This is what we found. Thank you to all who took the survey, because I know it's some of our listeners out here who are [00:48:00] doing that for us. We found that in these really intensive hospital based rehabilitation programs, that only 54 percent of POTS patients completed them. So just a little bit over half completed the program. That was astonishing to me in the first place, okay? Of those who completed the entire three week program, 46 percent completed it. Felt better or much better. And this is the part that's really difficult, Jill, because what if you're in that 46%? Then you should go for this, right? That, that group had a lower incidence of EDS. So, if you have POTS and EDS, that doesn't mean that you won't respond well but it decreases the chances, based on what we found in this survey. . 5 percent stayed about the same. They didn't notice a marked improvement, but they also didn't [00:49:00] get a lot worse. But 16 percent felt worse or much worse. Again, these are the people that completed the entire program. And in that group, there was a higher incidence of MCAS than those who began the rehab. And so what we're finding is, unfortunately, 54 percent of those that enrolled in the program reported no benefit from these really expensive Intensive rehabilitation program. Again, and the way that we're saying no benefit, they stayed the same or they felt worse. That's how I categorized my no benefit, right? So a little bit more than half found no benefit from these programs. And so again, when we're thinking about these really intensive exercise programs, I think we've got to consider the comorbid conditions.[00:50:00] POTS and what else? And the ones that popped in our study We're EDS. So let's think about, if you don't mind, think about for a minute why that might make the person feel the same or worse, right? Having EDS. So we did not have anybody in our study that had EDS without POTS. My survey was a survey for POTS patients. So this is going back to the literature. Okay, so this is not my research now. But there are documented limitations in functional capacity, meaning the ability to do all the things that you want to do in daily life in people that have Ehlers Danlos syndrome. And especially, and this is really important in exercise, mechanical ventilatory constraints. That's a fancy way to say that taking a deep breath can [00:51:00] be limited in people with EDS when they're exercising. If you think about this, my daughter has EDS and she subluxed a rib. It's incredibly painful. I know of others that have done the same thing. Well, when you're breathing, you're moving that whole rib cage up and out, right? So that makes sense to me that when you're exercising, maybe you're not breathing as deeply because you're worried about that subluxation or you're subconsciously protecting yourself there. So that's interesting. Also, there was a different study that found that 75 percent of people that had POTS and hypermobile EDS, which are probably the folks that are in our study here, are exercise intolerant. So that means that they don't improve with exercise. That maybe they've tried, they've been on programs. My daughter is one of these. She's the exact opposite of you, Jill. I know you exercise all the time. You feel better when your [00:52:00] muscles are pumping, but it just drills my kid into the ground. And so she would fit into one of those 75 percent, right, that have POTS and hypermobile EDS. But exercise is not the answer. And then the third thing here is They've done stu there was one study. I almost said studies, right? There was one study I found looking at these rehab programs for people with hypermobile EDS without the POTS or anything. They found no scientific evidence that these rehab programs helped EDS. So Jill Brook: Wow. Okay. Dr. Cathy Pederson: what the literature sort of says about EDS and exercise, Jill Brook: Mm hmm. Dr. Cathy Pederson: and I think it makes sense then that people who have POTS and EDS Maybe you're not going to feel better or much better when they do one of these programs. Jill Brook: I would just add that maybe if people are not doing well with the kinds of [00:53:00] exercise that these programs offer, they could still try other kinds of exercise because you mentioned that I love exercise and I feel better when my muscles are pumping and that's absolutely true, but I could not even do 10 minutes of any of the normal exercises that they would have me do in these programs. I cannot do treadmill, elliptical. Recumbent bike, rowing machine, I could not do any of those and yet other things if I can stay cold, if I can keep my calf muscles pumping, I can cross country ski all day long in the cold. I can surf. I can do fun, wonderful things, but if I had gone to one of these programs, I would believe I was one of those people that got worse from exercise because all of those particular exercises. Definitely exacerbate my MCAS or make me pass out or things like that. And so I have become a big believer in really just following whatever your weird body needs. [00:54:00] And I probably have become a bit of a cynic because I almost at this point think that any program that Claims to help a whole group of people isn't going to be right for me because I know my body's going to have all these weird little quirks that need to be accommodated and I need to have the freedom to accommodate those quirks. But if I can, then I will find a way to make it work and it'll be great. And so sometimes I worry that the exercise gets blamed when maybe it was just that particular kind of exercise. Dr. Cathy Pederson: That's a great insight and I think that's a great encouragement to people to keep trying different things and to not say, Oh, I can't exercise at all. That maybe there are things like in your case, if you stay cold, that you're able to do things that are great and very athletic and, and on the move, being on the move all of the time. I think that's a great insight. And these programs can't accommodate those sorts of things, right? And they are [00:55:00] following, I think, best practices, or trying to follow best practices, but again, for people with EDS, that may not be right for them. Jill Brook: Mm Dr. Cathy Pederson: So there's a small literature on that. There was not a huge literature on that, let me tell you, but it was interesting to think about. The literature is even smaller when we get to MCAS. So you're a triple winner, as is my daughter, right, who has POTS and EDS and MCAS, right? Jill Brook: Well, EDS, but the, yeah, Dr. Cathy Pederson: Okay. And so, The MCAS part of this, remember we said that those were the folks that were ending up in the feeling worse or much worse group. That's the only time we saw them in the statistics. And so they were doing less well than other POTS patients. The question is why? And so, [00:56:00] there's very, very little out there. I found one study that said that exercise can trigger mast cell degranulation, which you were mentioning a minute ago, which can include the release of things like histamine and tryptase, but it could be a wide variety of other mast cell mediators, and when you get that degranulation of the mast cells from the exercise, that that can lead to blood pooling, And blood pooling leads to a whole bunch of other problems, including fainting. , but that's the only paper I found that talked about anything even closely related. So when you think about MCAS and exercise, that degranulation problem may outweigh the benefits of the actual exercise itself. Jill Brook: Yeah, absolutely. And I think that there's a lot of things about exercise that could trigger degranulation, whether it's the temperature or the [00:57:00] vibration or the pressure or other things. And I, again, come back to, if you shop around for different exercises, you might find something You can do, and I would just throw out, it sounds so bizarre, but one reason I can't, I cannot walk on pavement because it's too uniform. I have the pressure allergy and it's too much of the same pressure in the same places and I will get inflamed very quickly. But if I walk on uneven ground, I'm okay. And it took me a really long time to figure that out. But Figuring out what aspect of the exercise, is it really just all exercise makes your mast cells degranulate or is it some specific thing about that kind of exercise that you could work around that might, might open up some options. Dr. Cathy Pederson: right? These are very complicated issues. And vary so much from one person to the next, makes this much more difficult. Jill Brook: Right. Of course, a program that tries to meet the needs of [00:58:00] all these incredibly complex patients with not just POTS, but the comorbidities is, you know, maybe they're deserving of a lot of praise for even just trying and we can't expect them to be great for everyone. Well, is there anything else left to say about this topic? You've helped us so much to unpack this and like much good research, maybe it raises more questions than it answers, but. At least I know you're going to have everybody thinking carefully before they go jumping at me. It's something like this. Right. I think do your research is a good idea. And this paper, read the paper if you're thinking about one of these programs. But we're hoping that we're going to reach not only our listeners who have POTS, but also healthcare practitioners to start thinking about who might benefit the most. And some of those. Maybe pure POTS who don't have EDS, who don't have IV Mast cell, because not everybody does, might [00:59:00] benefit tremendously from a program like this. I also like your point, and I want to come back to the, the idea that I mentioned earlier. This is saying nothing about an hour at, at your local hospital or a regional hospital. That helped my daughter so much, so much. So we're talking about these eight hour a day sorts of programs, the three weeks. Inpatient programs is really what we're talking here. So I don't want anyone to think they shouldn't exercise. Just pace yourself, figure out, as Jill's been saying, what works best for you. What are the workarounds? Is there a better time of day? Does it matter if you're cold? Does the position matter? We've got things on our websites too, to really help people pace their exercise. Well thank you so much, Dr. Pederson I, I'm so grateful that we have you digging into these really complicated subjects and, you know, we get [01:00:00] so little research and we're so grateful that we have you and you're so efficient and you do so much for us, so thanks a million. Dr. Cathy Pederson: My pleasure. Thank you, Jill. Jill Brook: Okay listeners, that's all for today, we'll be back again next week, but in the meantime, thank you for listening, remember you're not alone, and please join us again soon.