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Jill Brook: Hello, fellow POTS patients and marvelous people who care about POTS patients. I'm Jill Brook, your horizontal host, and today my guest is Dr. Cathy Pederson, PhD, founder and president of Standing Up to POTS, tenured professor of biology at Wittenberg University, and ever since her own daughter was diagnosed with severe POTS, she has focused her own academic research on POTS.

Dr. Pederson has recently published a peer-reviewed article in the Journal of Health Science and Education about findings from a POTS patient survey asking about symptom severity, POTS triggers, and more, and she's going to tell us all about it today. Dr. Pederson, thank you so much for being here.

Dr. Cathy Pederson: Oh, I'm so glad to be here, Jill. Thank you for inviting me to, to share these findings, 'cause I think they're important for the community.

Jill Brook: Well, and we appreciate that you, you use your, your work as an opportunity to [00:01:00] just keep just finding more answers. So by way of introducing this research project, maybe you can describe what this project was about, what you hoped to learn, and all that good stuff as way of introduction.

Dr. Cathy Pederson: Absolutely. You know, there's so much that we don't know about POTS. Right? Our listeners know that too. It's really frustrating how little we know after all of this time about symptoms and how they develop and why they develop and all of that. And so in this particular study, what I was trying to understand a little better is does it matter what caused you to develop POTS?

So for example my daughter developed POTS after mono when she was 10, right? A lot of people have developed it after COVID or after the COVID vaccine. Some people develop it after a trauma like a [00:02:00] concussion and some people develop it with pregnancy, right? So there are all of these, that's what I'm talking about as initial environmental triggers.

There are all of these different things that seem to set off a cascade of events in that person's body that results in POTS. So that's, in broad strokes, that's what we were trying to understand in this paper.

Jill Brook: Exciting. Okay. And is there anything more to be said about sort of the definition of a POTS trigger? I guess one thing that comes to mind is I know that at least like for people like me, I can kinda guess what it was, but I don't really know. And so I guess some people, it's easier to know than others. And is there anything more to say about sort of the certainty of that?

Dr. Cathy Pederson: Yeah, I think that's true. I, I think it's all guess, right? But what, what I know in my case is my daughter got sick and she never got better. Like never got better. And so [00:03:00] that seems to indicate that that original illness, in her case mono, is what led her down this path. Now, she was probably genetically predisposed, right?

That, that, that particular illness, that virus really tipped her over the edge sort of a thing, right? But, and I agree that a lot of times it's not that obvious. In fact, we had four groups in this study, and what I'm gonna call other, I've got air quotes up here for other category, were lots of people that said, "I don't know what the trigger was."

Right? So let me tell you about the four groups that we had in this study, and then we'll tell you what we did. So, we were looking at women who had, you know, been diagnosed by a, a healthcare practitioner with POTS, and we asked them a bunch of questions, and one of the questions was, "What do you think triggered your [00:04:00] POTS initially?"

Right? What, what might have caused it? And so there was a pretty large cadre of women that said it was either infection or vaccine. And we actually tested that statistically and the, the groups looked identical. So we put them together, infection and vaccine, into a group that we called immune response, right?

Because both the vaccine and an infection really get your immune system up and going. The second group is a physical trauma group. And what's interesting about that physical trauma group is that it was really quite diverse. So we asked about women that thought maybe a, a car accident maybe was the trigger for their POTS.

It could be childhood abuse, it could be concussion, it could be domestic violence, and it could be surgery. This is interesting, right? The first cadre all maybe go together with concussion or [00:05:00] sub-concussion, but surgery is really different. So that's something I think that's very, very interesting for us to think about.

So we've got this immune response group, we've got the physical trauma group, and then we had what we called a hormonal shift group. And in women, there are three times in our life when we'll have a big hormone shift. One is at menarche, when you start getting your period, right, as a young woman. One is pregnancy, and then finally at menopause, where you sort of shut that hormone system down, okay?

So that's our third group, and then the fourth one is this catch-all, this other, for people who didn't know, or some people wrote in. They said, "I think it was a, a mold exposure," or something like that. And so there are a few where it just wasn't enough to make one big group out of it, and so those ended up in that other group as [00:06:00] well.

Jill Brook: This is interesting, and I know that you're kind of just setting up the whole thing, but I think you've already made some really interesting points. And I love that you tested the differences and/or similarities between some of these groups, 'cause what I'm hearing is that surgery can have the same effect as a physical abuse or a car accident, and that is pretty astounding to me.

'Cause we like to think that surgery is just, you know, the, a lot less pain, you're choosing to do it, but that doesn't necessarily protect you. The other one was that vaccine and infection seem to look the same. And then did you look at whether the various hormone shifts were any different.

You know, for example we certainly hear a lot of stories of, of people getting POTS after hitting menarche and maybe less so of people getting POTS after menopause. But maybe that's just 'cause nobody's looked and it would be, [00:07:00] it would be fun to look into that at some point.

Dr. Cathy Pederson: Yeah, we didn't have very many people in that group. We had 91 out of 979 women, and so it wasn't enough that we could really look. But the other thing is that the hormonal shift group didn't look different from the other groups, and so there wasn't really a reason to go digging in there, if that makes sense, as far as the data, I mean.

Jill Brook: Right. Right. Okay, fantastic. So you had these four groups, then what?

Dr. Cathy Pederson: Yes. So let me say thank you to everyone who took our survey. So a lot of times when surveys come out, not always of course, but a lot of times it's my own research, and we had almost 1,000 women take this survey. And let me tell you, Jill, it was long. It took 25 minutes or so to finish this whole thing. So thank you listeners for helping us with this, because it makes a [00:08:00] big difference.

So we had 979 women who answered our call, filled out the surveys, and this is all the women who completed the entire survey. Okay? And they reported also that they had been diagnosed by a physician with POTS. So we, you know, this is a survey, I can't independently tilt test everyone or things like that, so that's a drawback.

But then what we did is we gave them, again, a variety of tests, and the ones I'm gonna focus on today, there was a fatigue scale, and I'll give you the long name just once 'cause most people don't care. It was called the Functional Assessment of Chronic Illness Therapy Fatigue Scale. Its abbreviation is FACIT, right?

But I'll just call it the fatigue scale, okay? And then they took a gastrointestinal symptom rating scale. We know that GI problems are really common. Fatigue is really common in, in folks that have been diagnosed with [00:09:00] POTS. And then the last one that we're really looking at in this paper is the Malmo POTS Symptom Score. And our listeners might know Dr. Federowski out of Sweden, and he allowed us to actually publish this on our website so that it's free and available for lots of researchers around the world to use. And so we're using that as an approximation of overall POTS symptoms at the point that the women took the survey, okay? And then again, we had demographic kinds of questions, and the question that we're really interested in here is what do you think triggered your POTS in the first place?

And again, we had a list of all sorts of answers, and a spot where people could write in if they didn't see something that seemed like it fit, and that's where we're getting these groups. So women are self-identifying immune response, right? So infection or vaccine injury. [00:10:00] And so we had, for infection, it was over 300 women.

But for vaccine injury, and again, think about COVID vaccine, we had 67 women who said that. We had the physical trauma group. That's gonna be the group that I'm gonna talk the most about today. That turns out to be the big finding. It's not what I thought, I'll be honest with you. We had 131 women who said they thought that their initial environmental trigger was some sort of physical trauma, concussion, surgery, that sort of thing.

We had 91 in the hormonal shift group. And then the other group, right, was a big one, 381 women who just really didn't know, to your point earlier, right? And so we had a box that they could check that said, "I don't know." We had a lot of people who did that, as you might expect. All right. So then we started just looking in general at who [00:11:00] responded to our survey, you know?

And so what we found, and again, Jill, I don't think this will surprise you or our listeners, almost 99% of people who took this survey reported on the instrument that they had fatigue or severe fatigue. So this is something where you go through, it's a validated instrument. There are groupings, right? So it's not just me saying, "Oh, they're fatigued," right?

So 99% reported fatigue or severe fatigue. The second one, 88%, showed symptoms indicative of POTS on that Malmo POTS Symptom Score. And you might be thinking, "I thought they all had POTS. Their physician said they had POTS." Here's the thing, folks. We're looking at a broad swath of people, and some of them may be early in their journey and still very symptomatic.

Some of them may be farther along and not [00:12:00] have all the symptoms. We're not asking without medication. It's really in the last week or two, what did the symptoms look like? So I think actually the fact that 88% fell into the POTS group on this Malmo POTS Symptom Score is actually good news that treatment is working, to the point where 12 percent of those folks, right, are no longer qualifying on this written survey.

Okay? And then, and then third, 71% qualified for what was called indigestion syndrome. Again, we were using validated instruments here. And again, so many of our listeners have their own GI problems, and they answered for us, right? So 71%, that's a lot of folks that are having abdominal bloating, abdominal pain, diarrhea, constipation, right, any of that sort of thing where their, their [00:13:00] GI tract just isn't working in the way that they want it.

So that's sort of general what it looked like. And then we also, when we looked into each of the groups, right, those four groups that we had, there were no differences at all, no significant differences in the age. So it's not like one group was a lot older and another one was a lot younger. That's a good thing, folks because we don't want other confounds, right, other things that could explain why we're getting this particular set of results.

So it's good that the age is not different between these trigger groups. Also, there was no significant difference in the incidence of mast cell activation syndrome, so people saying, "Yes, I have that," right, between the groups, or for disability status. So people that are on medical disability, that number was statistically the same between those groups.[00:14:00]

Okay? So that's a good thing. Yeah. And again, we had a large N, 979 women. Again, thank you, listeners, for taking these surveys for us.

Jill Brook: I just wanted to point out that I just thought it was interesting. People might be wondering some of the actual numbers. Like, so what percent did have disability, for example, and it ranged between 14% to 23% in the various groups. What percent did have MCAS? That was between 17% and 25%. What percent had EDS? That was between 25 and 35%. ME/CFS, that was between 18% and 29%. So anyway, I just thought it was interesting basically to see how high those numbers were. They, they struck me as high, and I, I understand that when you do surveys online that probably the healthiest POTSies are maybe out living their [00:15:00] lives and they're not following the POTS groups, and so maybe they're not doing the surveys, and that these things are known for maybe getting patients who are a little bit more severe. But but those numbers just struck me.

Dr. Cathy Pederson: Yeah. And I think that's exactly right. And in fact, in our, we always have to say at the end of a paper, what are your limitations, and that's always one, that we're going through the groups, we're going through our social media, through our webpage to get people in, and those tend to be people that are sicker or actively looking for answers.

So I think that's exactly right. But, but the other thing is that, that I think those numbers reflect real life. We know that most people don't have only POTS. You know, there are so many of these comorbidities that go along with it. You could throw in fibromyalgia and you know, there are several others that we could add to that list as well.

And so I sorta like that, that it is representative of a lot of [00:16:00] the folks that we're talking to on this podcast.

Jill Brook: Right. Right. Okay, so fabulous. So that's what your group looked like in general. What next?

Dr. Cathy Pederson: Okay, so I wanna point out just a few other things where we had a couple of differences, so I just wanna point that out before I get to the major findings. But I also recognize, and folks that like to read this kind of thing, I'm skipping a lot of numbers 'cause I think it's hard to keep track of everything on a podcast.

So we can put the link to this paper in the show notes if people wanna look at the tables and read it themselves. But, but I just wanted to point out that when we looked at things like the age of onset, right? So again, my daughter now is almost 24, I can't believe that, almost 24, but she got sick when she was 10.

The age of onset is not the age she is now when she's taking the [00:17:00] survey, right? It's when she got sick. And what we saw for that one is that the physical trauma group, and again, folks, spoiler alert, they're gonna be the star of this show. They were a little older, or actually significantly older, than the folks in the other triggers group.

Okay, so I just wanna point that one out. And then I also wanna point out again with that chronic fatigue syndrome, myalgic encephalomyelitis, that that incidence, physical trauma, and the immune response group, so the people that had infection or vaccine as their trigger, those were higher than the other group as well.

Okay? So I wanna point that one out. And then I think it's interesting that there was no significant difference between the four trigger groups for EDS, which you pointed out just a minute ago, right? And also, no significant difference between those four groups [00:18:00] for total number of diagnoses. So again, I have POTS, I have fibromyalgia, I have mast cell.

We went through and counted all of those up, and when we did that, there was no difference between groups. It didn't matter whether it was physical trauma, immune response, hormonal shifts, or other, okay? So I just think that's, that's interesting. But I'd, I actually wanna sort of move past some of that demographic stuff, because again, I think it gets complicated.

I wanna focus more on what we actually saw as far as the symptoms. So I wanna focus on the actual symptom scales that our participants took, and I wanna start with that Malmo POTS symptom score, okay? So again, this is our friend Dr. Fedorowski. We really appreciate him. He has done a lot of good work for our community.

And it's a relatively short survey where they're asking about [00:19:00] chest pain, dizziness upon standing, heart palpitations, things like that, and you rate it from zero to 10, okay? And what we found was that there were significant differences between the groups. And, and so this I'm gonna call sort of overall POTS symptoms or that POTS burden, and we saw the physical trauma group actually had a significantly higher score on the Malmo POTS symptom score than the immune response or the other triggers.

So they scored higher, meaning that their symptom burden, their symptom severity in the physical trauma group was higher than the other groups. I didn't expect this, right? Very interesting. So we look at some of the other scales. We gave the one for the GI problems, right, the gastrointestinal problems, and again, this is another validated survey instrument that we give, and doggone it, guess who [00:20:00] popped up high?

The physical trauma group. Now let me say all of the groups were highly symptomatic, but statistically the physical trauma group had higher levels, more gastrointestinal distress than some of the other groups did.

And then the third test that we were looking at was that fatigue scale, right, the FACET with that really long name. And what was interesting about that one is this time physical trauma didn't pop up. There was a significant difference when you do the, the big ANOVA for the groups, but when we did the post hoc test, there was no significant difference between the groups.

So again, what this is saying is that physical trauma was higher, right? Their symptom load was higher for POTS and for gastrointestinal distress. So that was really, really interesting and [00:21:00] frankly unexpected. It's not what I thought we would see when I started this study, and that actually makes it really, really interesting, I think

Jill Brook: Do you wanna talk more about what you did expect?

Dr. Cathy Pederson: Yeah. You know what I, what I thought it would be, honestly, is that the immune response group would be the star of the show. So the people that got POTS, developed POTS after, infection or vaccine injury. And my reasoning for that is both of those are really gearing up the immune response. We know that in some cases at least, POTS can be autoimmune.

That's a major, major insult to your body. And so I really thought that was going to be it. I was really surprised that it was this physical trauma group, but it's fascinating, I think, and it really opens up a new avenue for practitioners who are also doing research to really [00:22:00] follow through with this. So can I, can I tell you my thinking on this physical trauma group?

Jill Brook: Yeah, please.

Dr. Cathy Pederson: Okay, so when you're doing research, one of the things you're always thinking about is confounds, and I know you know that, Jill. And, and a lot of our listeners have heard so many of these kinds of talks. But a confound is anything else that might be able to explain your findings, you know?

And so I'm surprised. I said that already, right? I'm surprised that this physical trauma group was the one with the highest symptom burden, the most severe, and I'm thinking why would that be? And so I'd come up with hypotheses, and then my partner who ran all the stats for me would run the tests, right?

So my first idea was concussion versus not concussion because do you remember in this physical [00:23:00] trauma group, a lot of them were car accident, straight up concussion, domestic violence, right? And then surgery. So a lot of those are sort of concussion-related, at least in my mind, or sub-concussive hits, right?

And surgery feels very different. So what we did is we took those 131 women that were in the physical trauma group, and we divided them into concussion and surgery, and we ran the stats again to see if there was a difference. And I'll be honest with you, I thought there would be a difference. There was not a difference, right?

So when we ran the stats comparing women in the physical trauma group who had concussion versus the ones that reported that their initial environmental trigger was surgery, there was no difference in the overall POTS symptoms on that Malmo score instrument, [00:24:00] and there was no difference in fatigue. Now, there was a difference on the GI, the gastrointestinal symptoms, and those that had concussion had more GI symptoms than those that had surgery. So that was the only thing, right?

So GI seems to be more concussive related. So that was interesting, but not satisfactory, okay? So concussion could be a confound. Seems like it's not, at least not the whole story. My next thought was age of onset. Now, everyone who took the survey had to be at least 18, but again, they could be like my daughter where it was 10 or 14 or 20 years ago that they actually developed POTS, right?

And so I thought, well, maybe the physical trauma group, this was a concussion that happened in high school, right, or in college. I'm [00:25:00] a college professor. I see so many students who develop concussion. And the reason that I'm interested in the age of onset is because your brain is not fully developed until you're 25 years old. And the part of your brain that, that's really slow to finish is called prefrontal cortex.

It's right behind your forehead. So it's the really front tip of your brain, but that's the part of the brain that makes you you. That's your judgment, that's your decision-making, that's your personality. A lot of that stuff is really there. So anyway, I wondered if age of onset in the physical trauma group made a difference.

Did we have a bunch of folks that were really young, that were teenagers when they had that environmental issue, right, that maybe led to concussion? Now, I should say, when you look at the entire study, all [00:26:00] 979 women, the average age of people was 35. When we looked at the age of onset, so when that trauma was, it was 26 and a half.

And so again, at 26 and a half, the brain is fully developed. It's, it's fully functioning, right? Even that prefrontal cortex is mature. So doggone it, doesn't seem like that's it. I thought maybe, right, when we looked at the differences in age, we would see something. Bigger symptoms there, something.

Nothing, okay? Doesn't seem to be the age of onset. My last great idea was what about EDS, Ehlers-Danlos syndrome, and here was my reasoning for this. So I'm not thinking so much about surgery, right? I'm really thinking about concussion here. And our [00:27:00] listeners may or may not be very familiar with what's going on and how our brain is sort of oriented, but our brain floats in a fluid called cerebrospinal fluid, and it sort of hangs by these little tendrils , right, that are in, it's called the meninges of the brain.

So we've got three of these layers of meninges. These are membranes around the outside of the brain. I don't wanna get too technical, but the idea is what if these little tendrils that the brain is supporting, being supported and sort of floating and moving relative to these tendrils, what if they're extra stretchy because that person has hypermobile EDS, right?

There's no proof that that's a thing, right? But this is me thinking, right, what could be a confound, what could be going on here? And do you know what happened, Jill? Doggone it. That'll tell you. There was no difference in POTS symptoms. So again, in this physical trauma group, [00:28:00] when we separated those who reported Ehlers-Danlos Syndrome and those who did not, there was no difference in overall POTS syndrome, no difference in fatigue, and no difference in the gastrointestinal symptoms. Can you believe that? And then I was out of ideas.

Jill Brook: Well, so that's pretty fascinating, but did you also intentionally or, or unintentionally show that the psychological trauma that might be heaped on to certain kinds of physical trauma was seemingly not making things worse compared to the people in the surgery who theoretically had less, you know, this is all theory, but, but you would think that surgery would bring less psychological trauma than some of the other involuntary physical traumas?

Dr. Cathy Pederson: Right, like a car accident or, you know, [00:29:00] domestic violence. Absolutely. Yeah, and of course we didn't have anything. We can't speak to that, but I think your observation is a good one. I didn't have any surveys that we could say anything specific about that. But yeah, it, it doesn't seem like it's a psychological issue, right?

It's super interesting. What this means though is that that physical trauma group, we don't know why. It seems to be a real finding because again, when we looked at concussion, it didn't explain it except maybe some GI symptoms, right, with concussion versus surgery. When we looked at age of onset and presence of Ehlers-Danlos syndrome, that didn't explain anything.

So it seems like a real finding that something about that physical trauma is really predisposing people to the POTS irrespective of these potential confounds, right, these other things that could [00:30:00] explain it. Very, very interesting, I think.

Jill Brook: And can you just say one more time that it's not as if you're saying that the other groups were low and this group was high? I think what you're saying is they were all pretty high, but this group was even higher.

Dr. Cathy Pederson: That's exactly what it is. That's exactly right. So everybody who took the survey is having quality of life issues. Most of them, remember 88%, are highly symptomatic, so on that overall POTS survey, right, they're coming in high on that. But exactly. The physical trauma group is coming in significantly higher than everybody else, which again, was really interesting.

I haven't seen anything in the literature that would really talk about this. There's only one other paper that I'm aware of that even looked at or entertained the idea of initial environmental trigger, and it was a much [00:31:00] smaller study. So I think this is something where we need to be doing more of that work. But again, we're very, very early. So for our listeners who don't know, Jill and I teamed up back in 2016, '17 when we were really starting the research. We had a huge finding, sort of in the same way, completely unexpected, which was related to suicidal ideation in POTS. And we found about half of POTS patients at least consider suicide, right?

That was not something we expected. That was not what we were building the survey to show, right? It was this unexpected finding, and I think that this physical trauma having higher symptom severity, higher symptom burden, is another finding like that. It's not what I went out looking for. It's very interesting, and it's gonna need some work.

It's gonna need some [00:32:00] fleshing out to really try to understand that. You know?

Jill Brook: Yeah, for sure. And in the meantime, what do you hope people kind of take home from this, especially maybe healthcare providers or people who are gonna be, you know, seeing some of these patients?

Dr. Cathy Pederson: I think there are a couple of things. So I do think there are some clinical implications that come out of this study, and again, it has limitations 'cause it was a survey, right? We're not going and talking to each of these people. But, but I think that perhaps practitioners ought to be looking at what that initial environmental trigger might have been. Because especially if it's a physical trauma, whether it's something related to concussion or to surgery, that we need to be really aggressive when we start treating those symptoms, especially if they start showing anything in the world of [00:33:00] orthostatic intolerance, where they're having more symptoms when they're upright, when they're standing up, than when they're sitting or laying down.

And so that might be that they put them on salt and increased fluids and compression, just like we do with many POTS patients who are relatively early on, right, in their symptoms to see if that helps. We ought to be doing that really, really early on here. They ought to be maybe assessing folks, especially if they go into a post-concussive sort of thing sort of syndrome.

They really ought to be looking to see if they have POTS, because the treatments can be different for those. And so again, the idea is maybe if we're looking for it in people whose trigger was was surgery or concussion, maybe we can nip it in the bud before whatever the mechanism is, and who knows what the mechanism is, really [00:34:00] takes hold in the body.

So what's really interesting, right, when we think about the, the clinical implications for concussion, I think those are, are pretty easy to think about. Can I switch to surgery and my take on that?

So, so when you look at people after surgery, right, if it's a major surgery, a major abdominal surgery or thoracic surgery, right, so a heart surgery or something they're going in for internal organs, about 60% of those folks will actually have orthostatic intolerance after their surgery.

They're dizzy or lightheaded when they stand up. They may vomit, right, when they're upright, that sort of thing. And the studies that look at this have noted that that's especially prominent in women with low body mass index. And while not [00:35:00] all POTS patients have low body mass index, a lot of them do.

So isn't that sort of an interesting tidbit? How does that fit in? I don't know. Okay. Here's another thought. General anesthesia. So if we're doing a major surgery where we're going in heart, lungs, GI tract, kidneys, right, liver, anything like that, we have that person under general anesthesia. And so that's slowing down your whole nervous system sort of by design.

But there's some work. There's not a lot of papers out in this area, I have to say, but there are one or two that are sort of saying, you know, that could lead to autonomic dysfunction, especially for a longer surgery where that person is under eight hours, 10 hours, 12 hours. It makes sense, right?

The other thing that they are hypothesizing is that the baroreflex, [00:36:00] so that's the blood pressure reflex, can also be thrown off kilter with general anesthesia. So again, when we're trying to think about, well, why would surgery lead to POTS, I'm just throwing ... I have no proof. I have nothing in my data that I could show you data on this, right?

So this is me reading the literature, trying to really think as deeply as I can about what might be going on there. And then another thought is blood loss. So sometimes there are complications in surgery. Some blood loss is really common, but sometimes it's a major bleed, right? So if you watch TV shows or movies and they're like, "Oh, my gosh, we need to hang more units," right, that sort of thing.

And we know that hypovolemia is one subtype of POTS. So maybe there's something going on there that starts that [00:37:00] orthostatic intolerance. Maybe getting that blood volume, making a priority to get that up quickly could be important, you know. It's really interesting to think about. So are we not having enough blood to the brain because we've had significant blood loss, so we're losing some of that cerebral blood flow?

You know, I don't know. It, it seems like there are a number of things that could be involved here.

Jill Brook: Mm-hmm.

Dr. Cathy Pederson: But again, I can't really speak to it. This is all me reading the literature and thinking about it. I don't have data to support any of that. But I think it's interesting anyway to think about.

Jill Brook: Yeah, I so appreciate that you are just kind of exploring what could be out there, and I would love to give a shout-out to a physician and researcher in Australia who is putting up some really fascinating data and hypotheses and using new testing and measurement techniques. His name is [00:38:00] Dr. Graham Exelby, and he has a wonderful website.

I'll put it in the show notes. But he has some hypotheses about how some of these events might be an initiating trigger that then just gets the ball rolling, and then it's a little bit too late after that. And and maybe we'll get him on to speak about it. But my point is just that I think that there's other great minds who are kind of thinking about this the same way.

And boy, you know, it's just a good reminder that surgery's not nothing, and I think sometimes we, we do get so used to the idea. And of course sometimes it's life-saving and essential.

Dr. Cathy Pederson: Absolutely. And I don't wanna scare people away from surgery, but it can be for some people an initial environmental trigger.

Jill Brook: Mm-hmm.

Dr. Cathy Pederson: And certainly most people who undergo surgery, me included, you know, don't have any of those [00:39:00] problems. So again, we're talking about a very, very small number of cases post-surgical that go on to develop POTS.

Jill Brook: Right. Really fascinating. Just for fun, I had peeked at a couple of other patient surveys about triggers, and the big POTS survey by Shaw et al. had had a few thousand patients talk about what they thought their triggers might be. And I think there was another paper out recently by Marie Claire Seeley.

And you know, they all have, you know, slightly different numbers, but it, in the ballpark when I eyeballed it, it all seemed to kind of look fairly similar in terms of the proportions that thought it was something related to either physical trauma or something related to hormones or something related to an immune escalation. I thought that was fairly interesting.

Dr. Cathy Pederson: Well, we use those, [00:40:00] those surveys, right? We use those papers to look at, okay, what are people reporting, and we use that to build our survey. And again, I'm sort of going, "Okay, well these things to me logically could be grouped together into physical trauma, and these things could be linked together into the immune response."

So absolutely there's work out there. What's different about this particular paper is that we're looking at symptom load based on that initial trigger. And the Seeley paper, there's one paper by Marie Claire Seeley that also looked at that. That was the small study that I said earlier where I think they had maybe 19 patients that had physical trauma in that one as well.

But that was the other group that was starting to look at does the trigger matter for POTS. So this, this line of thinking is sort of in its infancy at this point.

Jill Brook: Right. Right. Well, thank [00:41:00] you for taking the step, and thank you for, for starting this. And is there any final thoughts?

Dr. Cathy Pederson: You know, I think maybe this is a call to pay attention if your child or you are starting to get new symptoms. What else is going on around you? Maybe that initial trigger makes some difference, and if it could end up making a difference clinically, right, that, that would be the key. If we have healthcare practitioners who are looking at surgery and concussion and really paying attention about POTS, that would be a really great thing.

Jill Brook: Amen. Well, Dr. Pederson, as always, thank you so much for all you do for this community. I don't know anybody who's doing more, and so, we appreciate this, and we just recently had our meeting to fund more POTS research by other researchers, and you do so much, so thanks a million.

Dr. Cathy Pederson: All right, thanks [00:42:00] for having me. I enjoyed it.

Jill Brook: Okay, listeners, that's all for today. We'll be back again soon with another episode, but until then, thank you for listening, remember you're not alone, and please join us again soon.