47. Exploring the Link between Joint Hypermobility and Neurodivergency with Jessica Eccles, MRCPsych, PhD

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00:00
Jennifer Milner
Welcome back to Bendy Bodies with the Hypermobility MD, where we explore the intersection of health and hypermobility, focusing on dancers and other aesthetic athletes. This is co host Jennifer Milner, here with the founder of the Bendy Bodies podcast, dr. Linda Bluestein. 

00:15
Dr. Linda Bluestein
Our goal is to bring you up to date information to help you live your best life. Please remember to always consult with your own healthcare team before making any changes to your team. 

00:25
Jennifer Milner
Our guest today is Dr. Jessica Eccles, clinical Senior Lecturer and MQ versus Arthritis fellow with expertise in brain body interactions, joint hypermobility, liaison psychiatry, neurodevelopmental conditions and immunosychiatry. Dr. Eccles. Welcome back to bendy bodies. 

00:55
Jessica Eccles, PhD
Thank you so much. It's a real pleasure to be back. 

00:59
Dr. Linda Bluestein
We're thrilled to have you. 

01:00
Jessica Eccles, PhD
Thank you. 

01:01
Jennifer Milner
Yes, we are excited to have you back. As a second conversation, our first conversation, we talked about neurodivergency and the connection between neurodivergency and hypermobility. Today we're going to dive a little bit deeper into that, but before we get started, can you just tell us a little bit about yourself? 

01:18
Jessica Eccles, PhD
Okay, so I am something called a clinical academic. That means I divide my time between clinical practice and research practice broadly under the auspices of being what in the UK is called a liaison psychiatrist. So I'm based in Brighton, at Brighton and Sussex Medical School in the UK. I think in America this is called a consultation. Lia Gun Psychiatrist so I'm interested in brain body interactions and my research really has been, over the years has been unified by brain body interactions, but particularly as they relate to hypermobility. So I've been working on hypermobility for a number of years, really since my first brain imaging study of hypermobility, which with colleagues, we showed differences in part of the brain involved in fear and emotion processing the amygdala. So the work I've been doing since then has broadly been related to hypermobility. So hypermobility and anxiety, chronic pain and fatigue. 

02:29
Jessica Eccles, PhD
And the motivation for getting into work on chronic pain and fatigue was really that there were reports of overrepresentation of hypermobile, people in chronic pain and chronic fatigue populations. And I was interested in understanding more about the biological mechanisms of chronic pain and fatigue that might relate to inflammation in the body and also differences in the autonomic nervous system, so the involuntary nervous system. So I've spent since 2016, we've been working on a big project about pain and fatigue, also interested in other brain body interactions in hypermobility. So have been working in the field of researching autism, ADHD, Tourette syndrome, and that complements nicely my clinical practice, which is in adults with ADHD, autistic adults and adults with Tourette's syndrome. So my clinical practice in Sussex, in the NHS is in the neurodevelopmental service. I also have other research interests. We're interested in creativity and we're just getting into a few projects about that. 

03:56
Jessica Eccles, PhD
And as you can see from my background, I like to take photos. 

04:01
Jennifer Milner
I do see that. And I do love the photos back there. I think that we actually said this the last time we interviewed you, but there are so many different things that we could talk to you about because you have gone down so many really interesting research rabbit holes connecting a lot of different things that are at the forefront of the minds of many of our listeners. Your research areas are listed as neuroscience, psychiatric and neurodevelopmental features of connective tissue disorders and mechanisms of chronic pain and fatigue. I mean, there's so much for us to choose from. Before we go too deeply into this conversation, though, can you describe what is meant by neurodevelopmental conditions? 

04:42
Jessica Eccles, PhD
So, neurodevelopmental conditions are conditions that typically start in childhood in which there is some variation in what we think of as brain processing. And neurodevelopmental conditions include a variety of things such as autism, ADHD, Tourette's syndrome, but also other things like Dyslexia, Dyspraxia, dyscalculia, which is Dyslexia but for numbers. So the key feature is presence in childhood that then carries on throughout life. I mean, philosophically and medically, there is quite a lot of debate about exactly what is a neurodevelopmental condition, and I think the definitions are changing all of the time. It's a very medical model and word, and I think that over recent years, things are changing in terms of how we frame these conditions and sort of exploring the differences in people and their strengths as well as the difficulties that they face. 

06:10
Jennifer Milner
That is really interesting. I know this is the time for a lot of growth in looking at neurodevelopmental conditions. And as you said, the definition of a neurodevelopmental condition is changing all the time and is something that is hard to pin down. You listed several different ones. You listed ADHD tourette's. You listed Dyspraxia. Can you elaborate a little bit more on what Dyspraxia is? 

06:35
Jessica Eccles, PhD
So, Dyspraxia is also known as developmental coordination disorder and is a difference in movement. So typically we think of people with Dyspraxia or developmental coordination disorder as being clumsy or they might have difficulties, say, when they're growing up with things like tying your shoelaces or holding a knife and fork. But the presentation of Dyspraxia, it doesn't mean to say that you can't catch a ball or write. Every individual is different and will have strengths and differences. And what's also interesting is Dyspraxia, like Dyslexia is often associated with kind of outside of the box thinking, creativity, and other interesting attributes. But we know that it often also co occurs with ADHD. 

07:49
Jennifer Milner
Interesting. And do you see any relationship between the Dyspraxia and proprioceptive issues? Are they inextricably linked? Are they just sort of causationally linked? What do you see? 

08:01
Jessica Eccles, PhD
I'm not sure about the causation, but yes, there's definitely Dyspraxia is related to this sense of where we are in space. And some of the I alluded to an earlier hypermobility imaging study that we did. And hypermobility is people who are dyspraxic often are hypermobile. And when we did the hypermobility imaging study, we found that a part of the brain that's involved in proprioception actually seemed a bit smaller in hypermobile people than the non hypermobile people. And that might be one kind of factor in thinking about the brain processes that concern proprioception. But proprioception is obviously a really important sense and often overlooked. And it may be that when we're thinking about strategies and interventions to help people in the future, that actually proprioceptive work might beneficial for a whole variety of things and not just movement. This is conjecture on my part, but by increasing the stability of where you think you are in space, this may help with your brain processing uncertainty and that may actually improve things overall. 

09:43
Jessica Eccles, PhD
And we know that hypermobile people often have quite weak core stability and that by improving core stability you can improve pain in other parts of the body by strengthening the core. So proprioception is actually probably quite ripe for investigating further as a potential intervention for improving quality of life in hypermobile people. And it's something that I would be really interested to study more in the future. 

10:27
Jennifer Milner
Well, we would love for you to do that. 

10:29
Dr. Linda Bluestein
We would love to do that with you. 

10:32
Jennifer Milner
Absolutely. I think we both see in our own practices proprioceptive issues across the board with most of the hypermobile people that we work with and the teasing that they get. Oh my gosh, you're a high end athlete. Oh my gosh, you're an Olympic skater, you're an amazing dancer, but you trip over your own feet or you stumble falling. And so people always wonder how those two things can be linked. So thank you for digging into that and sort of explaining that. Are there other reasons that the neurodevelopmental conditions, the neurodivergencies might be important in regards to connective tissue disorders? 

11:15
Jessica Eccles, PhD
Well, this is the million dollar question in terms of they both seem to often go together. They don't always go together at all. So there are neurodivergent people who are not hypermobile and there are hypermobile people who are not neurodivergent. It's probably a very complicated process and that's why we're really only just beginning to understand. But maybe factors that are influencing the development of connective tissue are also influencing neural development and maybe they are interacting with inflammatory processes and autonomic processes and that they're developing at the same time together. And in fact, I think excitingly. I have a student next year who's really going to focus on looking at something called gene expression, but trying to look at neurodevelopmental gene expression in hypermobility to see if there are any particular links using a technique called transcriptomics. 

12:30
Dr. Linda Bluestein
Wow, that's exciting. 

12:32
Jessica Eccles, PhD
We've done some initial work in people with chronic pain and fatigue that showed some inflammatory differences. But what we would like to do now is characterize that further in terms of specifically looking to see if we can see any genes involved in not genes, gene expression involved in neurodevelopment to see if we can piece that together a little better. 

13:01
Dr. Linda Bluestein
And every time I hear the word inflammation, I get excited, because that's the approach that I take with a large percentage of my patients. That even though hypermobility or hypermobile Eds or hypermobility spectrum disorder, they're not defined as inflammatory disorders. But it seems that the neuroinflammation that some people may be experiencing or inflammation due to mass cell activation and that kind of thing, it seems like that approach has been working quite well with. 

13:32
Dr. Linda Bluestein
A lot of people. 

13:33
Dr. Linda Bluestein
And so I would love to have more scientific information about why that might be the case because most of the time, if you check cytokines or CRP or whatever, they're not going to be elevated in most people. So your work is super fascinating. 

13:54
Jessica Eccles, PhD
That's something that we're analyzing some data on at the moment about kind of low level CRP increases and things and published some abstracts on that. So that's hopefully research that should be coming out soon. And we also hope to do more research into small fiber neuropathy and the difficulties that people have, and that may be an autoimmune inflammatory process. 

14:28
Dr. Linda Bluestein
Oh, my gosh, I hope everyone just heard that because small fibro neuropathy is definitely something that I get asked about a lot, definitely a lot of my patients experience. And if we can be moving forward with knowing more about it and having better treatment strategies going forward, that's really going to help a lot of people. So in February of 2022, you published a peer reviewed journal article titled Joint Hypermobility Links neurodivergence to Dysautonomia and Pain. And the results of that were really fascinating. Can you explain what the results were of this study and what the significance was? 

15:05
Jessica Eccles, PhD
Of course. So this is work motivated by what Jennifer was talking about in terms of what is the relationship between hypermobility and neurodivergence in that? When we started this work, which we actually started quite a while ago, it was part of my PhD in the kind of mid 2010s. We had read several kind of case reports and a few studies in children that suggested there was a relationship between hypermobility, autism, ADHD. There was this kind of intrigue in. Can we look at this a little bit further? These were relatively small studies, often case reports, and case reports are descriptions of single families or a single individual. And so we planned in our neurodevelopmental service in Sussex to do a research project whereby we systematically looked at all of the patients to see if they were hypermobile and also knowing that hypermobility was associated with differences in the autonomic nervous system, particularly the problems that people can get from going from lying to standing orthostatic intolerance. 

16:42
Jessica Eccles, PhD
So we thought, let's look at autonomic symptoms broadly in this group and see how they compare to non neurodivergent people. We set up this study so it didn't involve a full hypermobility assessment. It just involved consideration of what's called generalized joint hypermobility. Now, when we started the study before 2017. So at that point, joint hypermobility syndrome was synonymous with hypermobile, not hypermobile Eds, the one before Edsht, which was also known as Eds Three. So a little history of the diagnostic classification. And at that point, people were widely considering a byton score of four or more as indicative of generalized joint hypermobility. So we had trained clinicians who measured and recorded the bite and scale. The patients completed an autonomic symptoms questionnaire. And we recorded because they were in a clinic where people were being diagnosed and assessed for autism, ADHD and Tourette syndrome, we noted down their diagnoses. 

18:16
Jessica Eccles, PhD
Interestingly, this was back before, well, the transition of DSM Four to DSM Five, which for people who are not familiar with, is the American Manual for Diagnosing, Mental Health and Neurodevelopmental Conditions. And in DSM Four, you tended to only be diagnosed with one condition rather than co occurring conditions. So you would typically have an ADHD diagnosis or an autism diagnosis. And so most of the patients in the clinic who took part in this study only had one diagnosis. We know now with the SM Five and how things are evolving that actually that probably means we missed some co occurrences. So some people who were diagnosed as autistic may actually also have had ADHD and vice versa. But were using the information that we had at the time. We had 109 patients with neurodevelopmental conditions. In the paper, we explain why we're using the word neurodivergence and that is because we wanted to take a non deficit based approach. 

19:41
Jessica Eccles, PhD
We want to recognize that these conditions have strengths as well as difficulties. And were also keen to follow the lead of a paper that was published, I think in well, last year, maybe the year before, about using non ableist language in scientific literature. So that means often people talk about healthy controls. What is healthy in first place? What is healthy? Almost everyone. I'm sure it would be very unusual to find someone who did not have a condition of some description, but you could have several conditions and still feel in good health. And so it's a bit of a misnomer, a healthy control. And also, how do you know if you haven't systematically tested with all of the diagnostic criteria that someone who tells you, I have no mental health or neurological conditions or other conditions, they just might not know that they may be autistic or have ADHD. 

21:01
Jessica Eccles, PhD
So instead of using the word control, we use the word comparison group. So they are a group that have not been systematically evaluated. So we don't know whether they're neurodivergent or not. Some of them within that group may be neurodivergent. In line with the non ableist language, we're thinking about things like how we describe these things in the scientific literature so we had the comparison group and we also harking back to what I was talking about, this idea of the bite and score of four or more being used to be indicative of generalized joint hypermobility. We have a really good database. Well, there is a good database in the UK of all of the children who were born in a part of the UK called Bristol and Avon in 1992 and they had been tested using that metric at various points during adolescence. So we are quite confident that in the UK about 20% of the population have a bite and score of four or more. 

22:23
Jessica Eccles, PhD
And we know as well that from a wide population survey that used the self report questionnaire, there's a five part self report questionnaire in a wide range of adults from 18 to over 100 that also consistently found that 20% of them scored more than two on the five point questionnaire indicating that they were hypermobile. So what we did is we compared our neurodivergent individuals to the general population figure of 20% statistically and found that if we look at all genders, that half of the neurodivergent people scored four or more and only 20% of the comparison group and the general population around 20% scored four or more. And that difference wow, mathematically was statistically significant. So it was unlikely to be due to chance. And if you interpret the numbers, the ODS, so the likelihood of being hypermobile if you were in the neurodivergent group compared to the comparison group was four. 

23:58
Jessica Eccles, PhD
So neurodivergent people were four times more likely to have a byton score of four or more than the general population. So that's interesting, but we know that there are lots of problems with the byton score and that there are hypermobile joints that it misses. It was quite a crude indicator, but there is obviously a difference. We also then, because we had the data, the 2017 HEDS criteria, they use a slightly different way of conceptualizing generalized joint hypermobility. So I think for pre puberty children and adolescents it's six, then it's five and four, depending on your age. So we used the age specific cut off and we still found that you were more than twice as likely to be hypermobile according to that stricter criteria if you were neurodivergent than if you were in the comparison group. And that's actually a really interesting piece of research in and of itself. 

25:29
Jessica Eccles, PhD
Sorry, I'm probably talking too much, but there are very few studies that have simultaneously reported both metrics, if you see what I mean. We really don't know because there haven't been large studies like the birth cohort studies that I was talking about earlier, that actually tell us how many people have generalized joint hypermobility as defined in the 2017 HEDS criteria. So being able to compare the two, that was actually quite neat, really. So that was one part of the study. Is there an overrepresentation of hypermobility in the neurodivergent group and that was the case. And the 50%, as I said, that was across the genders. If we looked at females, the prevalence of hypermobility was much higher with sort of between 60 and 80% depending on the particular neurodivergence. But what we chose to do was to look at all of the neurodivergences together but the ones that we studied because we didn't look at Dyslexia, Dyscapular and Dyspraxia because they're not typically seen under sort of mental health neuropsychiatry services often assessed in educational settings. 

27:10
Jessica Eccles, PhD
So it was the first time to actually consider the different diagnoses together. And that's because I suspect that there's a lot more co occurrence than we think. So if you look at a paper that says this is a study of autism, there may be lots of people who also have ADHD, but they might not have been diagnosed and vice versa. That's why we chose to put them all together. And also it was the first time, but we report the individual differences as well. It was also the first time that anyone had ever looked at, as far as I'm aware, at Tourette's syndrome and hypermobility. And we found the same pattern there. So then that's one part of the study. So there's a physical characteristic difference in some of the neurodivergent individuals compared to the comparison group. We know and colleagues have been doing work that suggests that neurodivergent people experience a variety of physical health issues. 

28:22
Jessica Eccles, PhD
So things like gut disturbance, what I was talking about before, the difficulties on standing orthostatic intolerance allergies and also experience. My colleague Sebastian Shaw and his collaborators Mary Doherty and others just produced a paper that suggested that autistic people experience significant barriers to accessing health care. And it's really important for us to understand more about the brain body connections so that people can get the support that they need. So what we found, perhaps unsurprisingly, was that the neurodivergent group had higher levels of musculoskeletal symptoms and symptoms of orthostatic intolerance than the comparison group. And that relationship that the greater the number of hypermobile joints, the more the symptoms. So we thought, oh, what's going on here? So the neurodivergent group are having more symptoms, the neurodivergent group are more likely to be hypermobile. We know that hypermobile people are more likely to experience problems like orthostatic intolerance and pain. 

30:03
Jessica Eccles, PhD
Is hypermobility a potential reason for why neurodivergent people are experiencing increased number of physical health symptoms? So that was our second question, and we addressed that through something called a mediation analysis, which is where you have a number of different variables that are all related, and you want to see if the relationship between two things so that was neurodivergence and physical health symptoms is, in fact, being exerted that relationship by a different variable. And so we had hypermobility as the mediator variable. So there are things called mediators and these are potential mechanisms to explain a relationship. And then there are things called moderators, which are things that alter the strength or the direction of the relationship. So we did a mediation analysis and it looks like hypermobility is somehow implicated in this relationship between neurodivergence and physical health symptoms that we described, which were the orthostatic intolerance and musculoskeletal symptoms. 

31:22
Jessica Eccles, PhD
So it was a relatively small sample in that we had 109 neurodivergent individuals. I think the hypermobility data is pretty robust in comparing it to the 6000 adolescents in the general population. But other people need to repeat these studies. And it would be fantastic if a bit like we later did in our Mechanisms of Chronic Pain and Fatigue study, that in that we did the Biton scale, we did the JHS diagnostic criteria, the Brighton criteria and the HEDS 2017 criteria. No doubt by the time someone does that project, the HCDS criteria may have changed again. But characterizing having a more in depth characterization of hypermobility in this group would be really important because it would be interesting to know, really, wouldn't it? Is it the hypermobility, the joint hypermobility that seems to be prominent? Or is it other features like skin features? Because I'm becoming increasingly, and perhaps I should have mentioned this earlier, increasingly convinced that hypermobility is just a marker of whole body differences that are related to connective tissue rather than the thing itself. 

32:52
Jessica Eccles, PhD
So we talk about joint hypermobility, but actually this is a difference in how the body is built and connected. It's a difference in the connective tissue, but then it can get confusing because you think connective tissue disorders is this lupus, is this scleroderma? Whereas so I'm thinking of the hereditary disorders of connective tissue. But yes, it would be really lovely in a much larger sample to characterize the connective tissue features of neurodivergent people. Also it would be interesting and we do have some work that we are kind of analyzing and preparing for publication about this. But to look at a large number of hypermobile people and to see how many of them are neurodivergent because we don't know that from this study we couldn't say at all because we've only looked at the relationship in one direction. So why I've spent quite a bit of time talking about the processes and the findings. 

34:06
Jessica Eccles, PhD
But why is this important? It's really important, I think for a number of reasons. One is raising the profile, recognition and awareness of all three things. So hypermobility, which is often overlooked or poorly understood, neurodivergence, which is often overlooked and poorly understood, especially in non male presentations. And also the importance and this is where I obviously really feel strongly as a liaison psychiatrist of when you are thinking about someone's brain, about thinking about their body, and when you're thinking about someone's body, about thinking about their brain at the same time. And the reason why we really want to improve all of those things is so that people can recognize what's going on and get access to the support that they need. But I suppose what we're also realizing, and I alluded to that with the paper that I was talking about that a BSMS colleague had published, is that maybe our services and spaces are not necessarily accessible in the right way. 

35:25
Jessica Eccles, PhD
So maybe if you are hypermobile on a pain management program, perhaps there could be adjustments and accommodations made in case you were neurodivergent as well. If you are neurodivergent, maybe you could be hypermobile. And again, things may need to be more accessible. So there's a lot of things that we should be thinking about when we think about this relationship. So kind of increased recognition, screening, accessibility and really education amongst doctors, healthcare professionals, a variety of healthcare professionals, and also patients themselves. Patients are often really curious and know so much more than their doctors. So just trying to raise awareness. And what I actually found quite interesting was when some of the feedback that I got when the paper was published was kind of like, oh, we've known this for years and years. Why isn't anyone doing anything about it? Which is absolutely true, but the fact is we haven't actually known it for years and years. 

36:51
Jessica Eccles, PhD
It's been suspected, the patients have known it for years, but the scientific world has. There are not a huge number of studies. Whilst were doing this study, the big study in Sweden, the population birth cohort, not the birth cohort, the population study suggested that you were more likely to be autistic or have ADHD if you had a diagnosis of JHS or Eds. But it was a big study in a whole population, but we need more work to confirm it. 

37:30
Jennifer Milner
Yeah, so much of that I'm thinking about and processing and as you said, there are so many overlaps between the two populations and the issues that they deal with. And one of the things we hear a lot from the hypermobile population is people think I'm crazy, or people tell me there's nothing wrong or that I'm imagining this, and they can't understand why everybody else can do these things and they can't without hurting themselves or getting out of breath or whatever the case may be. And so it's really hard to get a diagnosis, and I see that as well. I have family members with autism, and they're very passionate about digging into the research as well. And you see so many people who are diagnosed later in life as adults and going, oh my gosh, now it makes so much sense. Now I understand why people told me it was all in my head. 

38:21
Jennifer Milner
I was just being sensitive or whatever. So just that emotional overlap of having something that's going on that doctors don't recognize and having them confirmed and going, I'm not crazy, I am hypermobile. I'm not crazy, I'm autistic. And getting that reassurance with that diagnosis of here's an explanation why. So drawing that connection between the two groups I think is a really important one. So I really appreciate the work that you have done with this. Thank you. 

38:49
Jessica Eccles, PhD
No, thank you. But I think it is also important to say that we can't over generalize and this is an interesting connection and I think I find it a very interesting connection, but not all neurodivergent people are hypermobile and vice versa. 

39:07
Jennifer Milner
Absolutely. 

39:08
Dr. Linda Bluestein
I wanted to just go back to one specific thing because it was so fascinating to me. So are you saying that if somebody had one hypermobile joint and then somebody else had four hypermobile joints or I should say four versus six because then they would actually score on the hypermobile category? Right. That the people who had a higher bite and score a higher number of hypermobile joints they generally had more symptoms than the people who had fewer. 

39:34
Jessica Eccles, PhD
Yes. This is regardless of whether where you draw the cut off in terms of what we call hypermobility. So if you look at the comparison group and the neurodivergent group together, or all people, and then you plot the bite and score one axis and the number of symptoms, there is a significant relationship between the number of hypermobile, the bite and score, which is not the number of hypermobile joints. 

40:08
Dr. Linda Bluestein
Thank you for that, clarification. Yes, absolutely correct. 

40:11
Jessica Eccles, PhD
Yeah, but it's just simpler to say that. But yes, and I brought up so, yes, that was what we found. And that's actually consistent with another paper that we published in December in the American Journal of Medical Genetics about multimorbidity at the interface of physical and psychological health was this was in a sample of patients with psychiatric issues. So using mental health services that the hypermobile patients had more autonomic symptoms so that they're all mental health patients and then the hypermobile ones have more autonomic symptoms than the non hypermobile ones. And again, there are those relationships that's so interesting. 

41:09
Jennifer Milner
We just need to keep doing more research, right? We need to keep drilling down on. 

41:16
Dr. Linda Bluestein
People like Dr. Eccles who are really I love how you describe things, I love how you think and the quality of research that you're doing because and I know that's what you mean, Jen. Right, of course that's what you mean. But we need more people who are really asking the right questions that really are going to help people. So I think it's just super great the work that you're doing, but it. 

41:41
Jessica Eccles, PhD
Is actually quite a small field in terms of professional researchers in hypermobility. It's not like some of the other conditions, but hopefully I'm going to be presenting at the Eds conference in September. It will be really fantastic to meet up with other hypermobility researchers from across the world. 

42:12
Jennifer Milner
Absolutely. Moving from this or continuing on with this, what have you seen about how anxiety is linked to joint hypermobility, neurodivergency and autonomic nervous system dysfunction? 

42:27
Jessica Eccles, PhD
Well, this is interesting and we could have a whole. Class on hypermobility and anxiety. That was the original work that I was doing was motivated by this relationship that has been systematically shown study after study that suggests us there is a relationship between hypermobility and anxiety. I think that relationship is driven by well, and we have data to show that's driven by an overactive autonomic nervous system, which is, I think, related to the way the body is built and how the vasculature and the cardiovascular system work. And also maybe like Linda was saying, there might be autoimmune and inflammatory processes that also contribute to reasons why the involuntary nervous system is more finely tuned in hypermobile people. I'm not saying that autonomic dysfunction is anxiety or that if you have a diagnosis of Pots, you must be anxious. But I have a video that I prepared for the Eds Society a couple of years ago that sort of goes through the different autonomic function tests that we did in people who are hypermobile and anxious and people who are hypermobile and not anxious, not hypermobile, not hypermobile. 

44:15
Jessica Eccles, PhD
Do you see the iterations? So I think there is this relationship between joint hypermobility and autonomic dysfunction. We know for a long time that autistic people and people with ADHD seem to be more likely to experience anxiety, and that may be generalized anxiety, social anxiety, panic disorder, panic attacks, that type of thing. A whole lot of different types of anxiety. And there's an emerging body of work that also suggests, and the work that we've just been doing suggests this, that in neurodivergent conditions there are also abnormalities of the flight fright nervous system, the autonomic nervous system. So we haven't sort of explicitly joined all of the dots together, but there are associations between the three. So we think hypermobility is related to neurodivergence, hypermobility related to autonomic dysfunction, neurodivergence related to autonomic dysfunction and neurodivergence related to anxiety. So if we did a study and we had all that data, we could do some nice modeling to look to see at the links. 

45:39
Jessica Eccles, PhD
But what's really interesting is there are sort of hypotheses and qualitative work, I think, out there, rather than quantitative work that suggests that stimming behaviors or self soothing behaviors in neurodivergence may well be actually an attempt to downregulate an overactive autonomic nervous system. And that by engaging in repetitive behaviors or stimming that actually helps regulate the autonomic nervous system. And that may be a purpose of kind of an unconscious thing that people. 

46:34
Jennifer Milner
Are doing that's so interesting. And so we're so close, but have not yet connected all the dots of one thing to the other, to the other. But we can see one connects to two connects to four connects to two. We just haven't connected all of them together yet, which we appreciate the work that you were doing in this. You mentioned the Adapt program during your really excellent interview with jeannie Debone on her podcast Finding Your Range, which we highly recommend. Listeners checking out. What can you tell us about this program? 

47:06
Jessica Eccles, PhD
So this arose from work that is being done at Brighton Medical School, really inspired by my mentor, Professor Hugo Critchley and my colleague who is now at UCL, Professor Sarah Garfinkel, who are interested in this concept of something called interoception. Interoception is an unusual word and people are like is it interception? Interoception? But no. Interception is the internal sense of what is happening in your body as opposed to extroception, which is what's happening outside your body. Sound that type of and the very first paper that I published about hypermobility with the brain imaging we noticed some interceptive differences in the hypermobile group compared to the non hypermobile group. And alongside this, Hugo and Sarah noticed a relationship between being sensitive to your internal bodily sensations and anxiety and they developed a paradigm which aims through feedback biofeedback of what is happening in your body. This is, for example, using your heart rate as an interceptive measure, an interceptive training paradigm to reduce anxiety. 

48:56
Jessica Eccles, PhD
And my colleagues have demonstrated that this interceptive training paradigm is effective at reducing anxiety in autistic individuals. They finished a big randomized control study just before COVID and that was published last year. So we know that body focused therapies may actually be helpful in reducing anxiety. So I thought, well, the hypermobile people have interceptive differences too. Why not adapt the biofeedback therapy, the interceptive training therapy to incorporate some kind of psychological support for anxiety as well that focuses on how we interpret and think about bodily sensations. So a combined approach and we developed this therapy and we called it Adapt Therapy which stands for Altering Dynamics of Autonomic Processing Therapy. And we had started doing a randomized well, we piloted it and it was possible to do and seemed to be going well. We were just about to start the full randomized control trial when COVID hit and we had to think very creatively about how are we going to do this biofeedback therapy that requires people to be connected to something that measures their heart rate. 

50:50
Jessica Eccles, PhD
So a pulse oximeter, which we normally did in the lab at the university. And so during COVID we worked with a software company and we developed a way of delivering the interceptive training part of this therapy on tablet in people's homes. So were able to do the randomized control trial of adapt during COVID And our postdoc sam presented the results to our department yesterday, which is very exciting, we hope to publish soon and we found that it was helpful in improving anxiety. But we also found that lots of hypermobile people and people may have experienced this themselves in their homes, have difficulties with the pulse oximeters because probably of circulation difficulties, reynold syndrome. So this is something that we are thinking about how can we take these things forward if people are having circulation issues and this would probably apply because it's to do with how light passes through your finger. 

52:26
Jessica Eccles, PhD
It would probably apply to people trying to use mobile phones and other technologies to measure their heart rate as well. So we're working on developing this to make it more accessible because that's important and we are also working on trying to get further funding to show how this therapy would work compared to standard therapies in the NHS or other healthcare services. So Adapt is a promising potential intervention for hypermobility and anxiety but it's not available commercially or in clinical practice. It was a research trial. What was good though was that during COVID people were really struggling to access mental health support. So the participants, the overwhelming majority of them, were very pleased and happy to have taken part because there wasn't much else going on. And also to take part in a therapy where people understood what hypermobility is. And I think that made a big difference and could have been something that you have to kind of figure is that part of the effect? 

53:54
Jessica Eccles, PhD
Having someone who understands what your experience is? Does that actually help therapeutic relationship? And that's definitely something to think about and is there value in having and I don't know, there might be different people practicing throughout the world in having therapists, talking therapists who are specialized in hypermobility and all the different things that can go with that. 

54:29
Dr. Linda Bluestein
That's a really interesting point. It makes me think that it would be fascinating to have a comparison group that has they're not doing the Adapt program specifically but working with somebody who is knowledgeable and that kind of thing to try to remove any kind of like placebo type ish no exactly. 

54:51
Jessica Eccles, PhD
And I think that is really important and in fact, I published a study of last year, maybe the year before time has kind of merged into one where when I was working as a consultation liaison psychiatrist in a general hospital were giving psychological support to patients with something called inflammatory bowel disease. So that's Crohn's and ulcerative colitis and we found that by providing psychological support in a pilot that not only improved anxiety and depression symptoms but it also improved bowel symptoms as well. So really showing the advantages and brain body but it was having I'm sure having a therapist who was interested and invested in the experiences of people with inflammatory bowel disease would have made a huge difference to therapeutic rapport. That is really interesting. But I think as people get more interested in hypermobility, this will hopefully naturally evolve in terms of a specialism and. 

56:13
Dr. Linda Bluestein
One idea that I had as anesthesiologist and struggling at times to find a digit where you could get the pulse oximeter to work in the cold operating room and people are vasoconstricted. So you're moving it around. And we also had ear probes though. 

56:28
Jessica Eccles, PhD
Oh yes, we had them we had those too. 

56:30
Dr. Linda Bluestein
Okay, you did. 

56:32
Jessica Eccles, PhD
And our research assistant, Georgia, was over zoom, trying to get people to put kind of ear senses on their toes as well. 

56:42
Dr. Linda Bluestein
Very hard on their nose, on their narratives. 

56:45
Jessica Eccles, PhD
They were having going off and warming up their hands. And really, we tried all sorts of things. All sorts of things. 

56:57
Dr. Linda Bluestein
Darn it, I thought I had an idea. 

57:03
Jessica Eccles, PhD
You see it sometimes how people's ears go white in the cold as well. So I think the ear any extremity can experience circulatory difficulties, I think, right? 

57:14
Dr. Linda Bluestein
Definitely. 

57:15
Jessica Eccles, PhD
Yeah. We mainly went with ear sensors in general because we sort of anticipated that this could be a problem, but it was still an issue. 

57:26
Dr. Linda Bluestein
Interesting. I love that you are researching interoception. I find it such a fascinating topic as I talk to patients and they tell me the different sensations that they're having in their bodies, and then I have other people that I know who literally get no information from their body whatsoever. They have no clue what's going on until there's a major problem. But it's like they have a switch on a wall rather than a dial. They go from nothing to everything, and they don't feel the little things in between. And it is hard. I think a lot of people really think that they must be, quote unquote, crazy when they get these different sensations because they've never I mean, I get this question all the time. Have you ever heard this before? Has anyone else ever told you this before? Because they think I'm weird because I'm experiencing this thing that I don't hear about. 

58:22
Dr. Linda Bluestein
So your work has the potential to help so many people. So it's wonderful. And you've done so much fantastic work already. And I know you already have lots of research projects in the works. What research are you most excited about in the future? 

58:41
Jessica Eccles, PhD
Well, at the moment, I am working on a couple of ideas, and I'm really excited about a proposal we're trying to put forward about understanding the mechanisms, potentially, of low dose naltrexone as a treatment in chronic pain to try and work out, because we know there's a few small clinical trials here and there, and a lot of I imagine, that I think there's a lot of patients who are accessing low dose naltrexone. But what we are really interested to work out is what is happening in the brain and the body that could be contributing to its effect. Because I think that's a really interesting thing about medicine is that there are lots of drugs that are already in existence for certain conditions that could perhaps be reused in other conditions. And you can imagine there's slightly less interest in trying to do research in things that you can't market because they're already there. 

59:57
Jessica Eccles, PhD
They're already there. And maybe quite like I was working when I worked in the Immunosychiatry service that my colleagues at BSMS set up. We were using in patients who had a mildly raised CRP, which is a level of inflammation in the blood. We were using different type of antidepressant, so were using the SNRIs rather than the SSRIs, because there's evidence to suggest that if you're inflamed, you may benefit more from an SNRI than an SSRI. But also, some anti inflammatory medicines are also useful for mood problems. So we know it isn't one of my main areas of expertise, but we know that there is this big relationship between inflammation and mood and feeling states, and they influence each other. So if we can identify some of the mechanisms that are going on, whether they're autonomic or inflammatory or allergic or what have you, then maybe there are simple medicines that we can use that might help people. 

01:01:33
Dr. Linda Bluestein
I prescribe low dose Naltrexone all the time and have a lot of people yeah, I do, and have a lot of people that really feel it's beneficial. But I've read the research, and I would love to see much more research done on this, and especially with regards to dosing and everything like that. Because, of course, part of the challenge is they're getting it from a compounding pharmacy, so it often costs them more than getting a medication through their insurance company. And so, although you could do more fine tapering of the medication, that also is very costly for the patient. So it's kind of trying to balance all of those different aspects. So that's really fascinating and great that you're studying that. 

01:02:23
Jessica Eccles, PhD
That's exciting. And also we're trying to take the adapt work forward and other work about the complexity between mental and physical health. 

01:02:37
Dr. Linda Bluestein
And for people who want to read more of your papers and learn more about the incredible work that you're doing, where can they read more about you? I don't know if you're taking patients in the UK or what all should. 

01:02:52
Jessica Eccles, PhD
People I i work, as I said, in a neurodevelopmental service, which is in our National Health Service. So I don't have a private practice. I see patients who live in Sussex, which is where Brighton is, in the UK, who are looking for an ADHD or autism or Tourette's syndrome diagnosis. That's my clinical if you just Google jessica recalls BSMS, which is where I work, BSMS. My staff profile will come up, and there's lots of links to articles and current projects because I forgot to know new projects I'm funded to do a really exciting project in Brain Fog that has been stalled because of COVID and some technical issues. But we're really hoping to start that soon. So that's brain fog in postural Tachycardia syndrome. Anyway, yeah, there's the website, and then you can follow me on Twitter. I'm bendy brain and then I am just starting out on instagram. 

01:04:00
Jessica Eccles, PhD
And I'm Dr. Bendy brain on instagram. But, yeah, there's lots of information on my staff profile and a link to all of the publications and where possible, we have really endeavored to publish open access. So the articles that I've been talking about today, the neurodivergent one, the one about the autonomic symptoms in mental health patients and the brain imaging one, they are all open access, so anyone can read them. 

01:04:43
Dr. Linda Bluestein
That's wonderful. Yeah. 

01:04:46
Jennifer Milner
And I know I've found several interviews with you or lectures that you've done that I can find on YouTube and watch with you, presenting to a variety of different places, and those are always excellent. So if people are looking to hear more from you, that's another great source to hear some of your words of wisdom. So we appreciate all that you are doing in this field and for spending your time with us today. You have been listening to bendy bodies with the hypermobility MD. Today we've been speaking with Dr. Jessica Eccles, clinical Senior Lecturer and MQ versus Arthritis fellow with expertise in brain body interactions, joint hypermobility liaison, psychiatry, neurodevelopmental conditions, and immunosychiatry. Dr. Eccles, your research is incredibly valuable. And I think one of the things that we both agree is so wonderful about what you do is that you have an eye on the practical application of it, too. 

01:05:43
Jennifer Milner
That you have these real world issues that you are trying to solve, helping open up access to people who are neurodivergent or hypermobile, helping the medical community to be able to see people more clearly. You have such a clear eye on trying to have that real world application in the research that you do, and we are so grateful for it. Thank you so much for sharing your expertise with us today. 

01:06:06
Jessica Eccles, PhD
Thank you so much for having me. 

01:06:08
Dr. Linda Bluestein
I learned so much, as always, every single time I listen to you speak, I learned so much. So we're both so grateful. 

01:06:18
Jennifer Milner
Thank you. Bye. 

01:06:20
Jessica Eccles, PhD
Bye. Bye. 

01:06:21
Dr. Linda Bluestein
Thank you for joining us for this episode of Bendy Bodies with the Hypermobility MD, where we explore the intersection of health and hypermobility for dancers and other aesthetic athletes. If you found this information valuable, please share it with a colleague or friend and leave us a review on your favorite podcast player. Remember to subscribe so you won't miss future episodes. If you want to follow us on Instagram, it's at bendy underscore Bodies, and our website is WW bendybodies.org. If you want to follow Bendy Bodies founder and co host Dr. Bluestein on Instagram, it's at hypermobilitymd all one word, and her website is WW hypermobilitymd.com. If you want to follow co host Jennifer Milner on Instagram, it's at jennifer. Periodmillner milner and her website is WW. Jennifer Milner.com thank you for helping us spread the word about hypermobility and associated conditions. We want to hear from you. 

01:07:26
Dr. Linda Bluestein
Please email us at info@bendibodies.org to share feedback. The thoughts and opinions expressed on this podcast are solely of the cohost and their guests. They do not necessarily represent the views and opinions of any organization. The thoughts and opinions do not constitute medical advice and should not be used in any legal capacity whatsoever. This information is not intended to diagnose, treat, cure or prevent any disease, as this information is for educational purposes only and is not a substitute for medical advice, diagnosis, or treatment, please refer to your local qualified health practitioner for all medical concerns. We'll catch you next time on The Bendy Bodies podcast.