Interviewer (2:58)

Your specialist area is hypermobility.

Dr. Jessica Echols (3:01)

Yes.

Interviewer (3:01)

And It's a word that I've heard, a phrase that I've heard a lot recently. But could you explain what exactly is hypermobility and how does that differ from standard mobility?

Dr. Jessica Echols (3:12)

Well, hypermobility is a term used to describe having joints that have an unusual range of motion. And we can kind of probably talk a little bit more about that in a bit. So. But essentially, it's at the end of the spectrum of how far joints can move. And hypermobility is a bit of a clunky term. It doesn't roll off the tongue. And it's actually. I consider it to be a massive red herring. So hypermobile people have flexible joints, but what they actually have is a difference in how their body is built. So something called the connective tissue, which is like a cling film wrapping around, you know, muscles and organs and joints, is different. It's sort of stretchier than other people's. And because the this and this is often things like collagen, because this is different, this explains a number of physical and mental health challenges and strengths that hypermobile, neurodivergent people have.

Interviewer (4:31)

So interesting. And if we were to sort of focus on the consequential strengths and challenges, what might some of those strengths look like?

Dr. Jessica Echols (4:39)

Well, so hypermobility is associated with kind of exceptional performance in certain things. So there are piano pieces, piano pieces, and guitar pieces that only people with hypermobile fingers can play. Most gymnasts, ballet dancers, and athletes are, in fact, hypermobile. And good examples of that is Simone Biles, who is in an absolute class of her own in terms of her Olympic power. However, if you are hypermobile, or Simone Biles also has adhd. Of course, if you are hypermobile, your joints move in ways that perhaps they shouldn't. You might have weaker core stability, you're more prone to injury, you're more prone to joints coming out of socket, and you're prone to a large number of medical problems like gastro issues. So if we're thinking back to this cling film, if that's lining the gut, you can see that it could make the gut move faster and slower and be stretchier or stiffer than it should be. But if you put a camera down there, you aren't going to see that in the same way. So lots and lots of hypermobile people have medical issues like gastro issues, asthma, sensitivities, allergies. And then, you know, this real interest in this activation of the flight or fight nervous system that called dysautonomia, this thing called postural tachycardia syndrome, where people's heart rate goes up when they stand up or eat a large meal or have a hot shower. I mean, some people have the experience that they have to lie down after they have a bath. And that is probably because if you have this floppy connective tissue, the cling film is stretchy. It means that you can't get blood back to the heart as easily. And so in order to keep your brain functioning and your heart pumping, you have to raise your heart rate. And this causes this whole activation of the involuntary nervous system, the fight and flight response. And that can look like anxiety. And some people get diagnosed with anxiety. And I think the work that we've been doing shows that it's all connected. Hypermobility, anxiety, and this particularly sensitive nervous system, which may be in part due to the way the body is built.

Interviewer (7:46)

So interesting. I was doing the research for this episode and completely ignorant when I started and I just thought hypermobility meant well. That means you've got bendy wrists. That's where my base level started. But clearly there's so much more to it.

Dr. Jessica Echols (7:59)

No? Yeah, exactly. So there's lots of physical health problems and there are, there are also some mental health problems. And I think, I think this is often underappreciated, but it means particularly physical health problems in young people may well be to do with hypermobility. So I am hypermobile, which I discovered at medical school when I was doing orthopedics. And a doctor came up to me and said, you have sway back knees. So sway back knees are sort of where your knees seem to bend backwards. And he said, you know, come and come and see me in clinic. And I did. And I was in a lot of pain because I had at the time early onset arthritis from a condition called developmental dysplasia of the hip. People won't have necessarily heard of that, but people know that when babies are born, there is this hip checking test. And that's what the developmental dysplasia of the hip is. And clicky hips is associated with it. And turns out that most people with developmental dysplasia of the hip have hypermobility.

Interviewer (9:20)

So if people are listening and they're relating to some of this, or they're just finding out, discovering about hypermobility today. What's a way a test they could do that might indicate that they have hypermobility?

Dr. Jessica Echols (9:34)

Well, there is a self report questionnaire which you could do yourself. And there are also physical examinations which might give you some clues to ask a doctor to complete. So the Self report questions. I might not have got them in the right order. Can you now or have you ever been able to put your hands flat on the floor without bending your knees? Can you now or could you ever bend your thumb back to touch your wrist? Also the other thing is, a soft sign of hypermobility is having flat feet when you stand up. So you might not have flat feet when you are sitting down, but when you stand, you'll notice that your arches fall. The other questions about hypermobility are can you now or could you, did you ever amuse your friends by contorting your body into strange shapes or could you do the splits? And then as a child or teenager, did your shoulder or kneecap dislocate on more than one occasion? And then finally, do you consider yourself double jointed? So of those five questions, the hands flat on the hands flat on the floor without bending your knees, thumb back on the wrist, dislocations, party tricks and double jointed. If you score two or more, there is a very strong possibility that you are hypermobile. The interesting thing is that it, if you don't score two or more, it doesn't mean you're not. And if you, if you went to a doctor or a physio, they would do an examination. So they would, they would look to see if you could bend your little finger about 90 degrees. They would look to see if you're on both sides. They'd look to see if your elbows, a bit like the knees that we were talking about, whether your elbows bent slightly backwards. They would also do the thumb on the wrist thing and the hands flat on the flaw. But there are lots of other soft signs. So things like easy bruising, thin, papery scarring. I don't know if, you know, listeners or viewers have any scarring, but scars that look like they're a bit scrunched up and thin. And also ankle sprains, tennis elbow, housemaid's knee, all of those things, varicose veins, hernias. And sometimes I think that these signs don't really pick up men. Well, men don't often seem to be able to do all of the finger manoeuvres, but they often have particularly long, thin fingers which are associated with hypermobility.

Interviewer (12:44)

What's the difference? Why would a man not relate or be able to do the flexibility issues?

Dr. Jessica Echols (12:49)

Well, there are lots of hormonal influences on the connective tissue. So we know that for you kind of hypermobile, neurodivergent women, because, you know, my thing is the link between hypermobility and neurodivergence that both their mental and physical symptoms. So things like gastro issues, dizziness, lightheadedness, emotional regulation problems, allergy problems, they can all fluctuate according to the menstrual cycle, typically worse just before a period. What we know about hypermobility is that hormones like progesterone, which is a female hormone, makes connective tissue more lax. So some pregnant women get this thing called pubic symphysis dysfunction. That's, that's a feature of having a lot of progesterone. So it's possible that testosterone and lack of progesterone and estrogen have meant that some men appear stiffer in those joints.

Interviewer (14:00)

Tying this all back to adhd. Does everyone with ADHD have hypermobility?

Dr. Jessica Echols (14:07)

Well, that is really interesting. So hypermobility, and I've just talked about it as hypermobility, is actually defined in lots of different ways. And the diagnostic criteria for the different ways in which it's defined have changed quite a lot over the years. So there isn't consistency in the research in terms of the terminology. So, for example, we wrote this quite seminal paper where we looked at people with autism, ADHD and hypermobility. Oh no, sorry. Autism, ADHD and Tourette syndrome. We compared them to a group without adhd, autism or Tourette syndrome and we looked to see if they had physical health problems. So problems with dizziness on standing and lightheadedness and also pain and whether they were hypermobile. And we used a particular definition of hypermobility which was just limited to the joint. And we found that you were four times more likely to be hypermobile if you were in the neurodivergent group than if you were in the comparison group. And that you had more physical health symptoms. And the relationship between neurodivergence and physical health problems to do with dizziness and pain was explained mathematically by hypermobility. But we used this particular definition and using that particular definition, which was a score of 4 or more on this physical examination, we found that about 50% of the neurodivergent men scored 4 or more on that, on that metric, and nearly 80% of the neurodivergent women scored 4 or more on that metric. But what we don't know is it had we used a different way of defining hypermobility, whether the figures would be different. So it is difficult. And people also talk and, you know, listeners and viewers may be wondering what is the difference between hypermobility and EDS, for example? So EDS is the Ellis Danlos syndromes of which there are 13 or 14, most of them are incredibly rare and have a single genetic causes. Hypermobile EDS is not that rare and there is no single genetic cause. So all people who have EDS have some form of hypermobility, but not all hypermobile people have Ehlers Danlos syndrome eds. So if you looked at my our paper and said, oh, 50% of the men of got joint hypermobility, 50% of them wouldn't have EDS, but it is quite likely that they have hypermobility spectrum disorder, which has got an entirely different classification system. And I think this is the problem with recognizing and understanding hypermobility is that the systems used to describe it and define it are just far too confusing. But in my clinical experience, so I work in a, in a NHS service seeing adults with autism, ADHD and Tourette syndrome, I have very rarely seen anyone who doesn't have some form of symptomatic hypermobility, male or female.

Interviewer (17:56)

So what causes the connection between the traits that would give someone a diagnosis of a neurodivergent condition and a diagnosis of hypermobility? What's the sort of commonalities there?

Dr. Jessica Echols (18:07)

Well, there's. There's two or three things that are going on. So in, in, as I said, you know, hypermobility, there's very rarely a single genetic cause. We know that in ADHD and autism there's very rarely a single genetic cause. There's the odd genetic syndrome in which neurodivergence is a feature and often hypermobility a feature too. So things like Fragile X. We do know though, that it really runs in families. So adhd, autism, Tourette's, they run in families. Hypermobility runs in families. I think that they are basically inherited and that the processes that are affecting the development of this cling film in the body, the connective tissue, are affecting the development of the nervous system. And that that is why they go together, is because they are not necessarily genetically associated, but they are inherited together. But we have been doing some work and this is under review at the moment. So this means it's being considered by a journal that shows that if you have the more bodily, so not joint bodily features of hypermobility, you have the higher your score on an ADHD screening questionnaire or on an autism screening questionnaire, and particularly when you dive in, and this was in a group of 110 people who all had hypermobility and when you dive into it, there seems to be a really close relationship between hypermobility and the sensory system. So, for example, there's lots of collagen in the skin, important in touch, there's lots of collagen in the ear, important in sound. And I would hypothesize that the relationship between neurodivergence and hypermobility is not only genetic, but it is to do with the integrity modulation and regulation of the sensory system. And we know, like for instance, so we know ADHD and autism associated with hypermobility. Hypermobility is also associated with proprioceptive difficulties. So proprioception is a sense of where you are in space. Which brings us back to the ADHD walk. That is a walk with difficulties with proprioception. And there are many. And this is one of the wonderful paradoxes about hypermobility and neurodivergence is sort of the idea of ballet dancers who bump into doors. So you can have some amazing fine tuned motor skills, but you can almost fall over yourself or spill coffee all over yourself constantly. And we know that adhd, autism, joint hypermobility, they are all linked to dyspraxia, which is now called developmental coordination disorder. And we did years ago a study where we looked at hypermobile brains and we compared them to brains that weren't hypermobile. And we found differences in a part of the brain responsible for fear, the amygdala. But we also found that the more hypermobile you were, the smaller a part of the brain about where you are in space is. And we put all of this together. So hypermobile people and neurodivergent people are known to have emotion regulation difficulties, a huge feature of adhd. In fact, for adults with adhd, most of them say that although the attention problems and differences are a big struggle, it's the emotional regulation difficulties, that idea of kind of going from zero to 60 in seconds, of being up and down in the course of a day, the rejection sensitivity, this very overactive kind of rejection sensitivity, and you know, everything being very intense. So yeah, we know that neurodivergence is associated with these emotion problems. So we did a study where we looked to see this was not in people with diagnoses, particularly whether their ADHD and autism characteristics predicted their emotional difficulties, which they did. This is in 200 people, it's published and you can find it on my link tree bendy brain. So there's this link between neurodivergent characteristics and emotion regulation problems. And that relationship is explained by a sense of uncertainty about where you are in space, which seems pretty wild. But then that relationship is twice as strong if you are hypermobile compared to if you're not hypermobile. So I am quite excited about this because it brings the brain and the body together, but it also suggests. And, I mean, I know there are a lot of sort of gimmicks and people are trying to sell people things for ADHD all of the time, but we might be able to improve emotion regulation in neurodivergent people, not with drugs or brain stuff or psychotherapy, but by helping them improve where they think they are in space.

Interviewer (24:15)

How do you do that?

Dr. Jessica Echols (24:17)

Well, you. I think you would. You would need, like, physiotherapists and occupational therapists who are far more expert in these matters than I. But it's a question, isn't it, of feedback and resistance and those kind of funny things that physiotherapists give you. You know, the colored bands. Sorry, that would help you. I think what we need to do is design a program to do that also. The other thing is balance boards, you know, those wobbly things and, you know, core stability training, there's all sorts of things. But it sounds a bit strange, but there is this big thing in neuroscience about this idea of uncertainty. So our brains are, you know, if I was to take on everything in this room in my head, as it actually is, my brain would probably blow up. There's too much information to process. There's literally too much information to process. So my brain makes a shortcut whereby it predicts some of these things, it sort of samples some of them, fills in the dots, and that works quite well. But occasionally what you've predicted isn't what's actually there. And that difference, that mismatch, we call a prediction error, now, you can have them something like, you know, going up the stairs, if there isn't a stair where you thought there was going to be a stair, you get a physical jolt. You. You kind of feel it in your body, but you also feel it in your brain, you feel it in your thoughts. And so what we think, and some of my colleagues at Brighton Sussex Medical School, Professor Hugo Critchley, have shown, and Professor Sarah Garfinkle at UCL have shown that this mismatch, this uncertainty about what you are experiencing inside your body actually leads to anxiety. And I think a lot of neurodivergent experiences and neurodivergent people are often sort of on the edges of experiences, are to do with this mismatch and imprecision and uncertainty. And tolerating uncertainty, as we all know, is really, really hard. And so if we can work through. So, you know, I was telling you about the postural tachycardia syndrome, where people feel weird when they stand up or eat a large meal. And this is often thought to be like a panic attack or anxiety. You can imagine if this. If this is happening to you on a regular basis and you don't know why, you have no idea that it's because you stood up or because you just had a hot meal. You're thinking, am I going to die? Am I going to have a panic attack? What is going on? But if you have education about that, and we developed a type of therapy for that, interoceptive training called adapt. And you basically reassured. Actually, no, I am not going to have a panic attack or die. Nothing serious is happening to my body. My body is just really variable and reactive. And it's just doing its variable and reactive, hypermobile, neurodivergent thing. I think people feel much more at ease than having this sort of seemingly random thing. But it's not random if you know how to look for it. But you need someone to explain that to you.

Interviewer (27:59)

Who's the most hypermobile person you've ever met? In other words, how far can the condition stretch?

Dr. Jessica Echols (28:07)

Oh, well, yeah. And I was actually talking to a colleague last night and she said hypermobility is not bendiness, its stretchiness, which is. Which is a good one, I think. I have been invited a couple of times to some really interesting events. So I have given talks to circus performers and also to aerial artists. Now, I don't really understand quite what the aerial artists are doing, but apparently it's quite big in musical shows, you know, using silks and sort of balancing in the air. And it is. Those are pretty extreme, particularly the circus performers. But it is so important to realize that you do not need to be a circus performer or to be able to do party tricks to be hypermobile. I have so many people say, oh, I'm not hypermobile. I'm the stiffest person I know. And then you. You test them and you're like completely hypermobile. But because they only know people who are more hypermobile, they have. They have discounted it.

Interviewer (29:25)

And I suppose following on from that, does hypermobility change as you age?

Dr. Jessica Echols (29:30)

Well, this is a really interesting thing. So you know how years ago, well, people thought that you grew out of adhd, you grew out of autism. That we know that joints do stiffen as a consequence of age. And I don't know if you remember, but there was once a Britney Spears album which had Britney Spears as an adult sitting in the W position. So you know legs like this, I don't remember but I'll cut off so there's this idea of the W position and some children sit in the in the W position and it is sort of a soft sign of hypermobility. My mother is going to be 76 in April and I was speaking to her about the W position and she insisted on getting this is on the telephone, getting on the floor, getting into the W position and getting my father to take a photograph so the and she could do that at 76, with nearly 76. So I don't think it necessarily declines with age and I don't think that even if people have become slightly less stiff so score less highly on a joint scoring questionnaire that means that they have any less problems.

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Interviewer (32:52)

Someone like yourself, Dr. Jessica, who's clearly on the cutting edge of research into the world of hypermobility. What did the scientific community know ten years ago on this topic compared to what it knows now? And what would you like to see new knowledge come out over the next five years? Say?

Dr. Jessica Echols (33:12)

Really interesting question, Alex. So I started researching hypermobility when I first came to Brighton Sussex medical school in 2009 when. And 10 years ago it was 2015 when I was in the middle of almost end of my PhD. So at that time in, when I was kind of thinking up ideas for my PhD and working with Hugo Critchley in that area, what we mainly knew about hypermobility was we knew about some of the physical health problems and we knew a little bit about possible links with neurodivergence. Of course, we weren't calling it neurodivergence then. There was one or two case studies, well, maybe a few more of children with what was then called Asperger syndrome, having Marfan syndrome or having lax joints. There was also a small literature, I think, two studies about ADHD in children and them being more likely to be hypermobile. But it wasn't really until, you know, the late 2010s and the early 2020s that we really solidified our knowledge on ADHD, autism and hypermobility. And also the work that we did then further linking that to some of these physical, physical issues. So when I started, the interest was all in anxiety and we actually had another anxiety paper published a couple of weeks ago and a few observant people on social media did say to me, but don't you think that these people might have been autistic or adhd? Don't you know hypermobility is associated with autism and adhd? And I had to write back and say, of course, you're absolutely right. But when I designed that study, we didn't really. And although we were interested in it, we didn't, we didn't necessarily control for it or look for it. But what we did find in this study that we did then that we just had published this functional imaging study, we found that there was overactivity in a part of the brain that is to do with fear processing and emotion processing, the amygdala. This is a hypermobility and anxiety study. But we also found that the part of the brain that is responsible for regulating yourself, the frontal cortex, was underactive and there was also some interesting differences in insula. And what's fascinating is, although it's an entirely different study, different pictures that they're looking at in the brain scanner, this is classic what ADHD brain imaging looks like. So when they were doing the ADHD brain imaging that, you know, showed that, were they really taking into account the role of hypermobility and anxiety? When we were doing this imaging, were we really taking into account things like adhd? They might all be actually sort of the same or very similar. And this reminds me of something. So when I first started, there was quite a bit of interest in hypermobility and anxiety. There's a group in Spain that had been working pretty hard in that area and they published a lot about hypermobility and anxiety. And I remember finding about 10 years ago, I can't remember the exact year it was published, but I think it was about 2013, 2014. A brilliant paper. Some people would think it was comical, but about how hypermobility was associated with increased chocolate consumption, increased tobacco consumption and increased alcohol consumption. And the. I can't remember whether it was the chocolate consumption or the tobacco consumption. I think it was the chocolate consumption correlated with a fear sensitivity index. So these authors, quite rightly at the time said to themselves, are these. And I think this was more common in women, are these hypermobile, anxious people regulating their anxiety with chocolate, tobacco, alcohol? And that seemed plausible, and I'm sure it is plausible. But now as a neurodevelopmental clinician, and obviously there's so many differences in terms of how we think about and understand ADHD and autism compared to 10 years ago. I mean, that's. Well, nearly 10 years ago. We didn't even. You couldn't be diagnosed with both. The DSM wouldn't allow. Was only until DSM 5 in 2014 that that. But now I think to myself, that study, that amusing study, because I sometimes include it in slides is, you know, were these people actually regulating. Were they trying to maintain attention? Were they regulating adhd? Because so many people with ADHD use stimulants of all sorts, you know, prescribed and unprescribed, often smoke. And we think of people sometimes regulating with sugar, you know, especially once ADHD medicine is worn off, you know, kind of midnight Haribo or what have you. And so it seems that that actually could be telling the same story in different ways.

Interviewer (39:37)

I laughed when you said sugar and chocolate because of the person that I referenced earlier with the inverted knees, similar to yourself, eats a lot of chocolate in the evenings and they will be listening to this very with great interest.

Dr. Jessica Echols (39:51)

Yeah.

Interviewer (39:52)

Where does pain come into all of this? When I was researching this episode, I read a study that said 75% of women suffer from chronic pain.

Dr. Jessica Echols (40:03)

You have ADHD?

Interviewer (40:04)

Yes. Yeah. Is that correct? And is there a link between that and the hypermobility?

Dr. Jessica Echols (40:12)

So in my clinical experience, almost all because I am lucky enough to have founded with Hugo Critchley and Rebecca Dew at the neurodivergent Brain Body Clinic in Sussex Partnership Trust, which NHS Trust where we look at patients, kind of physical and mental health concerns, adhd, autism and Tourette's. Pain is such a common problem, hugely common problem. I mean, almost all of my patients are in some way pained and fatigued and fatigue is another big thing. And actually pain and fatigue often come together. So we did a study and a few years ago where we looked at people with a diagnosis of fibromyalgia, which is a chronic pain condition, and people with a diagnosis of ME cfs, a chronic fatigue syndrome. And we were trying to work out sort of biological mechanisms. You know, I talked about how if you, you know, some people have this business where they feel dizzy and light headed when they stand. We wanted to see if pain and fatigue were in some ways related, particularly mental fatigue, related to those abnormality abnormalities in the involuntary nervous system. We also wanted to know whether they were related to problems with the inflammatory system. So we had this quite neat set of experiments and so grateful to the participants who took part. And what we found was of the patients who had fibromyalgia and ME CFS, nearly 4/5 of them. No, exactly. 4/5 of them met diagnostic criteria for symptomatic hypermobility. 4/5. But only one fifth of them even knew they were hypermobile, let alone had a diagnosis. And so we've taken that work a bit further. We also found that the hypermobility, historical hypermobility predicted all the pain and fatigue levels and brain fog levels. And we found that we found a lot of differences in kind of inflammation. And so we found, you know, these, these differences in pain and fatigue were related to hypermobility and hypermobility's influence on the autonomic nervous system and on brain structure, brain function. We also found interestingly that the inflammatory reactivity in response to an inflammatory challenge in these patients was much more powerful in people who had long thin fingers, which is a hypermobility feature. We then took this work a bit further in that I presented it at a long Covid conference because ME CFS and FIBROMYALGIA are quite similar to Long Covid and formed a collaboration with Professor Claire Steves, who had been setting up and using the Zoe app. Before it was a diet app, it was a Covid app. I think it was intended to be a diet app. And then Covid happened and then all of that. But anyway, we, we formed a research collaboration and we studied 3,000 people who had had Covid and we found that if you were hypermobile, you were thinking 30% more likely to have not recovered from COVID So I have Long Covid and I know we've also. Myself and my colleague Lisa Quatt have replicated that in a different sample that's got less women and is more ethnically diverse. So we know that there is this relationship between hypermobility and Long Covid. And it is really interesting to see how neurodivergence will fit into that. We don't have that data, but I would suspect that ADHD autism are factors in Long Covid, not just because of the effect on thinking and brain fog, but also because of having a hypermobile body and maybe being more sensitive to inflammation, more, you know, the involuntary nervous system being more sensitive. And there's some initial studies that show some ADHD medicine, a slightly unusual one. So guanfacine, which reduces blood pressure, is actually a promising treatment for Long Covid.

Interviewer (45:08)

If someone's listening and they have hypermobility and they have ADHD and they are experiencing a lot of the negatives, how can someone like that help themselves?

Dr. Jessica Echols (45:20)

Well, I think it's a tricky medical landscape. ADHD is not always well understood. And also, I mean, it's actually, you know, it's people in the minority who've been diagnosed. There are so much, many more people who are undiagnosed than are diagnosed. And the state of affairs with the waiting list is. With the waiting list is really, is really terrible. So. And also hypermobility. Not everyone is aware of it. Not everyone's aware of its significance. Lots of people just think, oh, this is party tricks, or it's not. It's not medically important. I would say I'm a patron of a, of a charity called Seds Connective. I'm also a patron of a charity called adhd, Aware that you look into the resources that these charities offer and you try and have a conversation with your doctor. Now there is actually on. So we talked about hypermobility in this condition called Ehlers Danlos Syndrome. There is something called the Ehlers Danlos Society. And you, you don't need to have eds, it just. You need to be hypermobile to find it relevant. There is a GP toolkit that they have produced that helps doctors manage some of the common medical problems in hypermobility. I would say look at my linktree, which is linktree Bendy Brain, and just print out some of the papers and take them to your GP or your physiotherapist. But I think it's so important to realize that you are not alone and that you are not, you know, making it up or that it's not just anxiety, that there are very many reasons why you might not be feeling your best.

Interviewer (47:27)

Super useful. Thank you so much, Dr. Jessica. Just before we finish, I want to draw attention back to the table where your ADHD item has been patiently waiting.

Dr. Jessica Echols (47:39)

Oh, yes.

Interviewer (47:39)

For its reveal. Every week I ask my guests to tell me an item that most represents ADHD in their life or in their mind. And I'm going to reveal yours now.

Dr. Jessica Echols (47:52)

Ah, thank you.

Interviewer (47:56)

Right.

Dr. Jessica Echols (47:57)

Oh, wow.

Interviewer (47:57)

I'm going to lift that up. Right, that is a bit book. A dance book, yes. So why does a dance book or just dancing represent ADHD for you?

Dr. Jessica Echols (48:08)

Well, it's an interesting one. So I have ADHD, I'm ADHD and I can't dance. But we know that lots of hypermobile people can or that really it's. It's pretty much a prerequisite for. For dancing. And I think the closest I get to dancing is in relation to ADHD in terms of. I mean, I've talked to you about lots of connections and things between things, and we've probably gone off on a couple of tangents. I think that's a type of. Type of dancing, but I really don't believe that, you know, in the ADHD superpower tragedy narrative, I think that it's got strengths and challenges, so it might be great to dance. And when I was young, I was quite fond of this film, Flash Dance, which came out, I can't remember, but when I was, when I was. When I was young. And in flash Dance, the main character is this sort of gritty, determined welder who wants to go. A female welder who wants to go to ballet school and dance. And so, and there's this. There's this song about, you know, you know, kind of where the dancer becomes the dance. And there is an idea for me where putting all of these ideas together and then seeing them through in terms of maths and it sounds quite boring to get excited about a computer screen that's spitting out statistics at you, but I really. I really like playing with. With all of that, but it is sometimes, sometimes you have to take a step back. And ballet dancers who are mainly hypermobile, they. They are giving you this fantastic, creative, wonderful display. And we are. We're doing some research right now about creativity and hypermobility and neurodivergence because there seems to be a of. Lot, lot of it about. I was inspired by a film director collaborator, Nigel Cole, about whether maybe there is lots of hypermobility and neurodiversity in the performance industry. But. So you have this wonderful performance and in some ways, adhd, you can look at me and say, oh, you know, she's written all these papers and it's all. It's all wonderful. Those ballet dancers have probably lost most of their toenails. They will be in agony. And it highlights to me the strengths and the challenges, but that the world is better for ballet dancers, I'm sure. And as someone who has some of the physical problems associated with hypermobility doesn't dance. This is my way of dancing.

Interviewer (51:25)

That's really amazing. I've never thought of it like that before. I'm also terrible at dancing. You didn't say terrible.

Dr. Jessica Echols (51:32)

No, no. I mean, I physically, I've just, you know, what with the arthritis, but I am so clumsy, I would. I would trip over my own toes.

Interviewer (51:42)

Yeah. Having mental, like psych. Mental dancing. I mean, it's such an amazing way to think of it. Once you get the orchestra in place, then the magic can happen. Right.

Dr. Jessica Echols (51:53)

And I think that's also one of the great things. I mean, there's lots of memes about this, but about kind of conversations between neurodivergent people, you know, people thinking, oh, dear, ADHD people are constantly interrupting and butting in, or autistic people can't communicate. But there is a real neurodivergent on neurodivergent conversation style when it works. Well, that is its own form of dancing.

Interviewer (52:20)

It can be quite frustrating if you've got that dance going on in your mind and you're talking to a slow talker and the rhythm of their dance isn't quite at the pace of yours.

Dr. Jessica Echols (52:30)

No. And that kind of sense of frustration when you know the answer but you can't say it, or you're also worried you have this amazing thought as tangent led to a brilliant, brilliant thought, but then by the time you've waited to say it, it's gone.

Interviewer (52:49)

It's gone. Yeah. I want to do the washing machine of words, Jessica. Which is the ADHD agony art section.

Dr. Jessica Echols (52:56)

You know, I think I became a psychiatrist because I sort of wanted to be an agony aunt. When I was younger I loved reading magazines about real life stories and the agony aunt sections.

Interviewer (53:10)

Well, this should be a perfect segment segment for you.

Dr. Jessica Echols (53:14)

Well, it might be. I might not know the answer.

Interviewer (53:16)

It's called the Washing Machine of Woes. This section because my ADHD item is a washing machine because I always leave my laundry in the machine and I ask everyone, do you relate to that?

Dr. Jessica Echols (53:29)

Oh God, sometimes I've had to put washing on maybe three or four times to you get this. The energy is there to bundle it into the washing machine but somehow to take it out. Very hard to find.

Alex (53:49)

I have been using the Teemo app.

Interviewer (53:50)

Though, Jessica, which is helping me get through this a little bit better.

Dr. Jessica Echols (53:54)

Yes.

Interviewer (53:54)

In the Washing Machine of Woes someone has written in and said I suffer.

Alex (54:00)

From chronic fatigue which was always deemed as me by doctors. A lot of people think I'm just lazy. Is there any chance this could be.

Interviewer (54:08)

Connected to my ADHD and hypermobility and.

Alex (54:11)

Could I do something to test this?

Dr. Jessica Echols (54:14)

I think that's a really interesting question and I think that me has, which is also called chronic fatigue syndrome is woefully misunderstood and we are veering a little bit closer. But I and colleagues, we've been trying to put together a funding proposal to trial an experimental drug called low dose naltrexone which is the low dose of a drug that was used in addiction as a possible treatment for me, CFS and fibromyalgia. We have not got very far and I think we need so much more research and resources into MECFs. But in answer to the viewer's question, yes, wait a couple of months and you'll be able to read the paper. But to paraphrase, we found a link between neurodivergence and chronic pain and fatigue that was explained by hypermobility and that was in adults. We also had published so you can find this on our link tree on my linktree. A really interesting study. So people often say to you, you know, is it correlation or causation, you know, or correlation is not causation. How can you know what you know from this study? And this is a big problem with one off time point studies. People are always saying to me, what does it mean that your hypermobile people have bigger amygdala? I'm like, I have no idea. We would have had to have studied them from, from the very beginning and see what happens. But there are a couple of times where you get to do that. And these are called birth cohorts. So in the alspat birth cohort, which is all of the children born in Bristol and Avon in 1992, they were all. Well, not all then, not all of them remained in the cohort, but a large number, I can't remember precisely, but maybe about 7,000 of them. At the ages of 7 or 9, their parents filled out some screening tools for ADHD and autism. So that means we weren't relying on a diagnosis because back in the 90s, how many people actually had a diagnosis? But we had that information on all of those 7 and 9 year olds and we then had information at 18 whether they had chronic disabling fatigue, which is precursor to me. And lo and behold, if you had ADHD characteristics above a recognized threshold as a young child, twice as likely to have chronic disabling fatigue at 18, same with autistic characteristics. But really, really interesting. You know, I've talked about these kind of mathematical explanations for why things are linked was that the relationship between neurodivergence 7 and 9 and chronic fatigue at 18 seemed to be explained by high levels of inflammation age 9 that were associated with autism and ADHD. So this is another example, a bit like the one I was talking about, the proprioceptive surprise and the emotion regulation, the neurodivergence and the hypermobility of how the whole brain body experience is connected. Because you can imagine how chronic fatigue syndrome is a bit like brain fog that you get in adhd, that it could be a sort of all or nothing experience that you get in ADHD and autism. And I think that. But what we know is that the. If you think about what we said at the very beginning, or what I said at the very beginning about the embodied experience of adhd, if we know that you are more likely to be in this stretchy body that is more sensitive to inflammation and autonomic variations, the involuntary nervous system. It all seems to make sense about how you can combine some of the thinking styles and the physical differences suddenly merge, perhaps because of a stressor like catching COVID or you know, transition at work and then you are really struggling with fatigue. And I think it's also important if you're in that position to make sure that you're treating, you know that you, if you've got any dizziness or lightheadedness when you stand up. So POTS symptoms that you know that you get them managed, there's a really good POTS UK website for simple things you can do at home to boost that. We've got a brain imaging study at the moment that should hopefully show whether that autonomic challenge leads to changes of blood flow in the brain. So that's important to do. It's also important we don't talk enough about this in adhd, but about energy accounting. I mean, that's partly because of ADHD is often being all or nothing and really struggling with the idea of pacing. But I think we only have finite resources. You don't want to get into burnout or burn up. You want to try and. Try and use the spoons that you have in a sensible way.

Interviewer (60:10)

Burn up.

Dr. Jessica Echols (60:10)

What's that burn up? Burn up is where you become all fizzy. So burn out you become. I mean, it's my own term, burnout or burn up. Burnout is. Burnout is where it's all got, it's all got overwhelming and you've almost become, you know, not quite catatonic, but you're, you're, you're, you're lacking any energy. Burn up is where you've got over stimulated and possibly overwhelmed, but you've basically got lots of energy. And I think they're the flip side of the same coin. And you asked me what we might understand better in five years, and I forgot to answer. I think we will understand better in five years how ADHD and autism actually relate to the common diagnostic constructs in psychiatry that we already have. So what I'm just talking about is a potential explanation for mood disorder. And that is another problem. I think that people and some of my colleagues and it's kind of understandable, you know, they sort of think that ADHD or autism is something on the side. And that's why a lot of people struggle with person first language, because they don't like the idea of it being on the side. But I don't think you kind of, you know, could. It's, it's part of the whole experience, the physical and mental experience of what I said at the beginning. And it is central to that. So central to how you experience anxiety, to how you experience depression or other mood problems. It is, it isn't, it isn't that you can just leave ADHD in a bag in this studio and it not be part of the very core of your being.

Interviewer (62:16)

This has been truly fascinating. Jessica, thank you for your time. I know how busy you are. There's one more thing that we do at the very end of this show, and that is to deliver you a letter that has been written by the previous guest. And they wrote down their three rules to Live by.

Dr. Jessica Echols (62:32)

Okay.

Interviewer (62:33)

And they posted it in that post office. And through the magic of time travel. I'm going to deliver the letter to you now.

Dr. Jessica Echols (62:39)

Thank you.

Interviewer (62:39)

And if you could kindly read it out.

Dr. Jessica Echols (62:42)

Okay. Three rules to live by. Embrace your whole self, even the opposing side. Well, I think that's wonderful. And that's a bit like the, the, you know, the beauty and the torment.

Interviewer (62:51)

Of dancing your whole stretch yourself.

Dr. Jessica Echols (62:53)

Yeah, we're stretching, that is. There was a book Isabel Knight wrote many years ago when I was first, first getting into researching hypermobility, a book about hypermobility called Bending without Breaking. And if that could be, maybe this will go in my next rules. If you could, if you could bend. If you can learn to bend without breaking. I think that's so important for this whole hypermobile, neurodivergent experience. Wake up to who you are and radically accept yourself. Be self compassionate, but also your own fan. I think they're so important to embrace the whole of yourself, even the bits that you don't necessarily want other people to see or know about. And I was having a conversation with a friend the other day about how, and I think this is maybe more true for women, but I'm sure can be true for men, that by growing up with adhd you, you sort of shave off all the hard edges of yourself to try and make yourself more acceptable to other people. Yes. People pleasing. And that actually learning to accept those difficult edges is really, really important. Self compassion is easier said than done, but it is very, very important. Thank you, Alex.

Interviewer (64:36)

Dr. Jessica Echols, thank you so, so much. As I said, I came into this with very little understanding of what hypermobility actually meant. But now I feel like I'm walking away with a considerable understanding. So thank you so much.

Dr. Jessica Echols (64:49)

No, thank you. It's really lovely to speak to everyone and if you want to follow me, please look at my link tree. Linktree, Bendy brain.

Interviewer (64:58)

I'll put all of those links in the description underneath this episode. Dr. Jessica, thank you so much.

Dr. Jessica Echols (65:02)

Thank you.