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The Breakthrough Science That Proves Link Between ADHD and Hypermobility | Dr. Jessica Eccles PhD

Dr Jessica Eccles trained in medicine at University of Cambridge and University of Oxford and undertook combined clinical academic training in Psychiatry.

Dr. Jessica EcclesguestAlex Partridgehost
Mar 11, 20251h 5mWatch on YouTube

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Transcript

  1. 0:00 – 1:12

    Trailer

    1. JE

      We looked at people with autism, ADHD, and hypermobility, 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.

    2. AP

      Dr. Jessica Eccles

    3. JE

      is a hypermobility expert specializing in its hidden link to ADHD

    4. AP

      Oxford and Cambridge graduate in medicine She's now on the forefront of cutting-edge research proving the connection between ADHD and hypermobility.

    5. JE

      Hypermobility is a term used to describe having joints that have an unusual range of motion.

    6. AP

      What's a way, a test they could do that might indicate that they have hypermobility?

    7. JE

      Can you now, or have you ever been able to put your hands flat on the floor without bending your knees? Could you ever bend your thumb back to touch your wrist? Did you ever amuse your friends by contorting your body into strange shapes? Did your shoulder or kneecap dislocate on more than one occasion? And then finally, do you consider yourself double-jointed? If you scored two or more, there is a very strong possibility that you are hypermobile.

    8. AP

      Does everyone with ADHD have hypermobility?

    9. JE

      Well, that is really interesting. So-

    10. AP

      Really?

  2. 1:12 – 1:33

    Dedication

    1. AP

      This episode is dedicated to anyone who can bend their thumb back so it's touching their arm and really wants to understand why. [upbeat music] Dr. Jessica Eccles, what a pleasure to have you in the studio.

    2. JE

      Thank you, Alex. It's a real pleasure to be here.

    3. AP

      I suppose quite a direct question to start, and that

  3. 1:33 – 3:05

    What will the audience learn in this episode

    1. AP

      is why should someone stick around for the next hour? In other words, what do you think you can teach them?

    2. JE

      Ah, well, um, hopefully a few things. I think there is a myth and a stereotype, uh, that ADHD is a brain condition, that it is a neurotype. Some people even talk about neurotribes, uh, that it is to do with, um, uh, tension and hyperfocus. And that is all, all, all true, and we've come so far in busting some ADHD, uh, myths, you know, about women and non-stereotypical presentations. But what I would like, uh, viewers and listeners to really understand is that ADHD is an entire body condition, that it is, um, it is an embodied experience that isn't just in the mind. And one of the things is is, um, you know, social media often says, "Oh, you can't tell that I'm autistic," or that, "You can't tell that I have ADHD." But the same social media is full of, um, the ADHD walk. And so I am going to, um, hopefully be able to talk to you a bit about why that might be.

    3. AP

      Your specialist area is hypermobility.

    4. JE

      Yes.

    5. AP

      And it's a word that I've heard, a phrase that I've heard a lot recently. Um,

  4. 3:05 – 4:29

    What exactly is hyper-mobility and how does it compare to just plain mobility?

    1. AP

      but could you explain what, what exactly is hypermobility, and how does that differ from standard mobility?

    2. JE

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

  5. 4:29 – 9:26

    Positives and negatives of being hyper mobile

    1. AP

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

    2. JE

      Well, so, uh, 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. Um, most gymnasts and ballet dancers, um, and athletes are in fact hypermobile. And good examples of that is, uh, Simone Biles, who, uh, is, um, in an absolute class of her own in terms of her, um, Olympic power. However, um, if you are hypermobile, uh, Simone Biles also has ADHD, of course. Um, if you are hypermobile, your joints, um, m-move in ways that perhaps they shouldn't. You might have weaker, um, core stability. You're more prone to injury. You're more prone to, um, joints coming out of socket, and you're prone to a h- a large number of, uh, medical problems like, um, gastro issues. So if we're thinking back to this cling film, if that's lining the gut, you can see that it's could make the gut move faster and slower and be stretchier or stiffer, uh, than it should be. But if you put a camera down there Uh, you aren't going to see that in the same way. Uh, so lots and lots of, um, hypermobile people have medical issues like, um, gastro issues, asthma, sensitivities, allergies, um, and then, you know, this real interest in this, uh, um, activation of the flight or fight nervous system-

    3. AP

      Hmm

    4. JE

      ... um, that, called d- dysautonomia, this thing called postural tachycardia syndrome, where people's heart rate goes up when they stand up or eat a large meal or, um, have a hot shower. I mean, some people have the experience that they have to lie down after they have a bath.

    5. AP

      Hmm.

    6. JE

      And that is probably because, um, uh, 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.

    7. AP

      Hmm.

    8. JE

      Um, and I think the work that we've been doing shows that it's all connected, uh, hypermobility, anxiety, and this, uh, particularly sensitive nervous system, which may be in part due to the way the body is built.

    9. AP

      Hmm. 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 got bendy wrists.

    10. JE

      Yes.

    11. AP

      That was where my base level started, but clearly there's so much more to it.

    12. JE

      No. Yeah, exactly. So there's lots of physical health problems, um, and, uh, there are, um, there are also some mental health problems, and I think, uh, I think this is often underappreciated, but it means particularly physical health problems in young people, um, may well be to do with hypermobility. So I am hypermobile, uh, which I discovered at medical school when I, um, um, 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.

    13. AP

      Hmm.

    14. JE

      And he said, uh, you know, "Come and, uh, come and see me in clinic," and I did, and, um, I was in a lot of pain, uh, because, uh, I had at the time early onset arthritis from a, um, 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, uh, most people with developmental dysplasia of the hip have, um, hypermobility.

    15. AP

      So if people are listening and, and they're, they're relating to some of this, or they're just finding out, discovering about hypermobility today,

  6. 9:26 – 12:48

    How can a person test to see if they are hyper-mobile?

    1. AP

      what's a way, a test they could do that, that might indicate that they have hypermobility?

    2. JE

      Well, there is a self-report questionnaire which you could, um, do yourself, and there are also, uh, physical examinations which might give you some clues to ask a, uh, doctor to complete. So the self-report, uh, questions are... I might not have got them in the right order. Uh, can you now or have you ever been able to, uh, put your hands flat on the floor without bending your knees? Um, can you now or could you ever bend your thumb back to touch your wrist? And also, the other thing is, is a soft sign of hypermobility is having flat feet when you stand up. So you might not have flat feet, uh, when you are sitting down, but when you stand, you'll notice that, uh, your arches fall.

    3. AP

      Hmm.

    4. JE

      The other questions about hypermobility are, um: Can you now or, uh, could you, um, did you ever, um, amuse your, uh, friends by contorting your body into strange shapes, or could you do the splits? Um, and then, uh, 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 f- the hands flat on the, the hands flat on the floor without bending your knees, thumb back on the wrist, dislocations, party tricks, and double jointed-

    5. AP

      Hmm

    6. JE

      ... if you score two or more, um, 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, uh, if you, um, if you went to a doctor or a physio, uh, they would do an examination. So they would, they would look to see if you could bend your little finger about 90 degrees. Um, they would look to see if your, um, on both sides.

    7. AP

      Hmm.

    8. JE

      They'd look to see if your elbows, a bit like the knees that we were talking about, whether your elbows bent slightly backwards.

    9. AP

      Hmm.

    10. JE

      Uh, they would also do the thumb on the wrist thing and the hands flat on the floor.

    11. AP

      Hmm.

    12. JE

      But, uh, there are lots of other soft signs, so, uh, things like easy bruising, um, thin, papery scarring. I don't know if, um, you know, l- uh, listeners or viewers have any scarring, but, um, scars that, um, look like they're a bit scrunched up and thin. Um, and also ankle sprains, uh, tennis elbow-

    13. AP

      Hmm

    14. JE

      ... housemaid's knee, uh, all of those things. Varicose veins.

    15. AP

      Hmm.

    16. JE

      Uh, hernias Um, and, uh, um, we, uh... Sometimes I think that these signs don't really pick up men well. Men don't often, um, uh, seem to be able to do all of the finger maneuvers. Um, but they often have, uh, particularly long, thin fingers, which are associated with hypermobility.

    17. AP

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

  7. 12:48 – 14:02

    How hormones and the menstrual cycle affects hyper-mobility

    1. JE

      Well, there are lots of hormonal influences on the connective tissue. So we know that, uh, for your 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, um, things like gastro issues, dizziness, uh, lightheadedness, emotional, um, uh, regulation problems, allergy problems, they can all fluctuate according to the menstrual cycle. Typically, um, uh, worse, uh, just before a period. Um, what we know about, uh, hypermobility is that hormones like, uh, progesterone, which is a female hormone, makes connective tissue more lax. So, um, some pregnant women get, uh, get this thing called a pubic symphysis dysfunction. That's a, um, a feature of having a lot of progesterone. So it's possible that, um, testosterone, um, and lack of progesterone, estrogen have, um, meant that some men appear stiffer-

    2. AP

      Mm.

    3. JE

      -uh, in, uh, in those joints.

    4. AP

      Tying this all back to ADHD-

    5. JE

      Yes.

    6. AP

      Does,

  8. 14:02 – 17:55

    Does everyone with ADHD have Hypermobility?

    1. AP

      does everyone with ADHD have hypermobility?

    2. JE

      Well, that is really interesting. So hypermobility, and I've just talked about it as hypermobility, is actually defined in lots of different ways. Um, 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, um, consistency in the research in terms of the terminology. So, for example, um, we wrote, uh, this quite, uh, seminal paper where we looked at people with autism, ADHD, and hypermobility. No, 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, uh, problems with dizziness on standing and lightheadedness and also pain, and whether w- they were hypermobile. And, uh, we used a particular definition of hypermobility, which was just limited to the joints. And we found that, um, you were four times more likely to be hypermobile if you were in the neurodivergent group than, um, if you were in the comparison group, and that you had more physical health symptoms, and that the relationship between, um, 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 four or more on this physical examination, we found that about 50% of the neurodivergent men scored four or more on that, um, on that metric, and nearly 80% of the neurodivergent women scored four or more on that metric. But what we don't know is that had we used a different way of defining hypermobility, whether the figures would be different. So, um, it is, uh, it is difficult. And people also talk and, um, you know, listeners and viewers may be wondering what is the difference between hypermobility and EDS, for example. So EDS is the Ehlers-Danlos syndromes, of which there are 13 or 14. Most of them are incredibly rare and have, uh, 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 have got, um, uh, joint hypermobility," 50% of them wouldn't have EDS. Um, but it is quite likely that they have hypermobility spectrum disorder, which has got an entirely different classification system.

    3. AP

      Mm.

    4. JE

      Um, 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.

    5. AP

      Mm.

    6. JE

      But in my clinical experience, so I work in a, um, in a s- NHS service, uh, seeing adults with, um, autism, ADHD, and Tourette syndrome. I have very rarely seen anyone who doesn't have some form of symptomatic hypermobility, male or female.

    7. AP

      So

  9. 17:55 – 27:58

    The scientific link between Neurodiversity and hyper-mobility

    1. AP

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

    2. JE

      Well, there's, there's two or three things that are going on. Um, so, uh, in, in, um... 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. I mean, there's the odd genetic syndrome in which neurodivergence is a feature, um, and often hypermobility a feature too, so things like fragile X. But, um, uh- We do know, though, that it really runs in families.

    3. AP

      Mm.

    4. JE

      So, um, uh, ADHD, autism, Tourette's, they run in families. Hypermobility runs in families. I think that, um, they are, um, uh, basically, uh, inherited and that the processes that are affecting the development of this clingfilm in the body, the connective tissue, are affecting the development of, uh, the, of the nervous system, and, uh, that that is, uh, why they go together-

    5. AP

      Mm

    6. JE

      ... is because they are, um, 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, um, that shows that if you have, um, uh, 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... Uh, and this was in a group of 110 people who all had hypermobility. And, uh, 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, uh, the skin, important in touch.

    7. AP

      Mm.

    8. JE

      There's lots of collagen in the ear, important in, uh, uh, sound. And I would hypothesize that the relationship between neurodivergence and hypermobility is not only genetic, but it is to do with the, uh, integrity, modulation, and regulation of the sensory system. Um, and we know... Like for instance, so we know ADHD and, um, autism associated with hypermobility. Hypermobility is also associated with, um, proprioceptive difficulties. So proprioception is a sense of where you are in space, which brings us back to the ADHD walk.

    9. AP

      Mm.

    10. JE

      That is a, uh, a walk with, um, difficulties with proprioception. And there are many, um... 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, um, motor skills, but you can almost fall over yourself-

    11. AP

      Mm

    12. JE

      ... uh, or spill coffee [laughs] all over yourself, um, constantly. And we know that, um, ADHD, autism, joint hypermobility, they're all linked to, um, dyspraxia and 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, uh, fear, the amygdala. But we also found that the more hypermobile you were, um, 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, um, are a big struggle, it's the emotional regulation difficulties, that idea of kind of, um, going from nought to 60 in, um, uh, in seconds, uh, of being up and down in the course of a day.

    13. AP

      Mm.

    14. JE

      The rejection sensitivity, you know, this, this, you know, very, um, you know, f- um, overactive kind of rejection sensitivity and, um, um, you know, everything being very intense. Uh, we... So yeah, we know that, um, neurodivergence is associated with these emotion problems. So we, we did a study where we looked to see, uh, 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 LinkTree, Bendy Brain. Um, uh, so, so there's this link between neurodivergent characteristics and emotion regulation problems, and that relationship is explained, um, by a sense of uncertainty about where you are in space, which seems pretty wild. Uh, 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. Um, but, uh, we might be able to improve emotion regulation in neurodivergent people, not with drugs or brain stuff, uh, or psychotherapy-

    15. AP

      Mm

    16. JE

      ... but by helping them improve where they think they are in space.

    17. AP

      How do you do that?

    18. JE

      Well, you, um, I think you would, you would need like physiotherapists and occupational therapists who are far more expert in these matters than I. Uh, but it's a question, isn't it, of feedback-

    19. AP

      Mm

    20. JE

      ... and resistance and those kind of funny things that physiotherapists give you, you know, the colored bands. Sorry, that, that would help you, um, uh... I think what we need to do is design a program to do that. Al- also, the other thing is balance boards, you know, those wobbly things. Um, and you know, core stability training. There's all sorts of things. But, uh, it sounds a bit strange, uh, but there is this big thing in neuroscience about, uh, this idea of uncertainty. So, uh, our brains are, um... 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.

    21. AP

      [laughs]

    22. JE

      There's too much information-

    23. AP

      Mm

    24. JE

      ... 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, uh, that works quite well. But occasionally, what you've predicted isn't what's actually there, and that difference, that mismatch, um, we call a prediction error. Now, you can have them w- something like, you know, going up the, uh, stairs. If there isn't a stair where you thought there was gonna 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.

    25. AP

      Mm.

    26. JE

      And so what we think, and, and some of my colleagues at, um, Brighton and Sussex Medical School, um, Professor Hugo Critchley, have shown, and Professor Sarah Garfinkel at UCL, have shown that this mismatch, this uncertainty about what you are experiencing inside your body actually leads to anxiety. Um, and I think a lot of, uh, neurodivergent experiences, and neurodivergent people are often sort of on the edges of experiences, are to do with this, uh, mismatch and imprecision and uncertainty. And tolerating uncertainty, as we all know, is, um, 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-

    27. AP

      Mm-hmm

    28. JE

      ... a large meal. Um, and this is often thought to be like a panic attack or anxiety. You can imagine if this, if this is happening to you, um, 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 gonna die? Am I gonna have a panic attack? Uh, what is going on?" But if you have education about that, and we developed a type of, uh, therapy for that, a, an interoceptive training called Adapt, um, and you're basically reassured, "Actually, no, I am not, uh, going to have a panic attack or die. Nothing serious is happening to my body. My body is just really variable and reactive, and, uh, it's just doing its variable and reactive-

    29. AP

      Mm

    30. JE

      ... hypermobile neurodivergent thing," uh, I think people, um, feel, uh, much more at ease than having this sort of seemingly random-

  10. 27:58 – 29:24

    Who’s the most "hypermobile" person you've ever met?

    1. AP

      Who's the most hypermobile person you've ever met?

    2. JE

      [laughs]

    3. AP

      In other words, how far can the condition stretch?

    4. JE

      Oh, well, uh, yeah. And I was actually talking to a colleague last night, and she said, "Hypermobility is not bendiness, it's stretchiness," which is, uh, which is a good one. Um, I think I have been invited a f- couple of times to some really interesting events. So I have, uh, 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, uh, musical shows, you know, using silks-

    5. AP

      Mm

    6. JE

      ... and, uh, sort of, um, uh, balancing in the air. And, uh, it is... Th- those are pretty extreme, um, uh, particularly the circus performers. But it is so important to realize that, um, 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, uh, then you, um, you test me. You're like, "You're completely hypermobile."

    7. AP

      [laughs]

    8. JE

      But they, because they only know people who are more hypermobile-

    9. AP

      Mm

    10. JE

      ... uh, they have, um, they have discounted it.

  11. 29:24 – 30:50

    Does hyper-mobility change with age?

    1. AP

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

    2. JE

      Well, this is a really interesting thing. So you know how years ago, well, uh, people thought [laughs] that you grew out of ADHD-

    3. AP

      Mm

    4. JE

      ... or that you grew out of autism? [laughs]

    5. AP

      Yes.

    6. JE

      Um, uh, that, um, uh, 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.

    7. AP

      I, I don't remember, but I'll-

    8. JE

      Yeah, there was-

    9. AP

      ... I'll have to look that up afterwards.

    10. JE

      There was the... So there is this idea of the W position.

    11. AP

      Mm.

    12. JE

      And some children sit in the, in the W position, and it i- is a 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, uh, insisted on getting, um, this is on the telephone, getting on the floor, getting into the W position, and, uh, getting my father to take a photograph. So the, um... 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, uh-

  12. 30:50 – 32:57

    Tiimo advert

    1. JE

      Problems

    2. AP

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  13. 32:57 – 39:51

    What did we know about the hyper-mobility/neurodiversity link 10 years ago?

    1. AP

      what did the scientific community know 10 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?

    2. JE

      Really interesting question, Alex. So I started researching hypermobility when I first came to Brighton Sussex Medical School in 2009. When, uh, and 10 years ago, it was 2015, when I was in the middle of almost end of my PhD. So at that time, in, um, uh, when I was kind of thinking up ideas for my PhD and, uh, working with, um, Hugo Critchley in that area, what we mainly knew about hypermobility was we knew about some of the physical health problems, um, and we knew a little bit about possible links with neurodivergence. Of course, we weren't calling it neurodivergence then.

    3. AP

      Mm.

    4. JE

      Um, uh, there was one or two, um, case studies, well, maybe a f- a little... a few more, uh, of, um, children with what was then called Asperger syndrome having, uh, Marfan syndrome or having lax joints. There was also, um, a, a small literature, I think two studies, um, about ADHD in children and them being more likely to be hypermobile. But it wasn't really, um, until, you know, the late, uh, 2010s and the early 2020s that we really solidified our knowledge on, um, ADHD, autism, uh, 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 I... we actually had a, um, another anxiety paper published a couple of weeks ago. And a few observant people on, uh, social media did say to me, "But don't you think, uh, that these, um, people might have been autistic or ADHD? Don't you know hypermobility is associated with, uh, autism and ADHD?" And I had to write back and say, "Of course you are. You're absolutely right." But when I designed that study, um, we didn't really, and although we were interested in it, we, um, we didn't, um, uh, we didn't necessarily control for it or look for it. Uh, but what we did, um, what we did find in this study that we did then that we just had published, this functional imaging study, uh, uh, we, we found that there was overactivity in a part of the brain that is to do, uh, with fear processing and emotion processing, the amygdala. Uh, this is a hypermobility and anxiety study. Uh, but we also found that the part of the brain that is responsible for regulating yourself, the frontal cortex, was underactive. And, uh, there was also some interesting differences in the insula. And what's fascinating is, although it's an entirely different study, different pictures that they're looking at in the brain scanner, uh, this is classic, um, what ADHD brain imaging-

    5. AP

      Mm

    6. JE

      ... looks like. So, um, 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, uh, were we really taking into account things like ADHD? They might all be actually sort of the same or, or very similar. And this reminds me of something... So when I- First started, there was, uh, quite a bit of interest in hypermobility and anxiety. There's a group in Spain that had been working pretty hard in, uh, that area, and they had published f- um, 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-

    7. AP

      [chuckles]

    8. JE

      ... increased tobacco consumption-

    9. AP

      Mm

    10. JE

      ... and increased alcohol consumption. And the, um, um... 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, uh, quite rightly at the time said to themselves, "Uh, are these..." And I think this was more common in women. "Uh, are these, uh, hypermobile anxious people regulating their anxiety with, um, chocolate, um, uh, tobacco, and alcohol?" And that, that, that, that seemed plausible. Uh, but... And I'm sure it is plausible, but now, uh, as a neurodevelopmental clinician, um... And obviously there's so many differences in terms of, um, how we think about and understand ADHD and autism compared to 10 years ago. I mean, that, that's... Well, nearly 10 years ago, we, we didn't even-- You couldn't be diagnosed with both. The DSM wouldn't allow it. Um, it was only until DSM 5 in 2014 that that was possible. But now I think to myself, that study, that amusing study, 'cause I sometimes include it in slides as, you know, were these people actually regulating, uh... Were they trying to maintain attention? Were they regulating ADHD?

    11. AP

      Hmm.

    12. JE

      Uh, because so many people with ADHD, uh, use stimulants of all sorts, you know, um, uh, p- prescribed and unprescribed, um, often, uh, smoke, um, and, uh, we think of people sometimes regulating with sugar, you know, especially once, uh, ADHD medicine has worn off, you know, kind of midnight, uh, Haribo or [laughs] what have you. And so the... It seems that that, that actually could be telling the same story in different ways.

    13. AP

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

    14. JE

      Yeah.

  14. 39:51 – 45:07

    75% of women with ADHD suffer from chronic pain, is this connected to hypermobility?

    1. AP

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

    2. JE

      Who have ADHD?

    3. AP

      Yes. Yeah.

    4. JE

      Yeah.

    5. AP

      Is that correct? And i- is there a link between that and the hypermobility?

    6. JE

      Um, so in my clinical experience, um, th- almost all... 'Cause I am lucky enough to have founded with, um, Hugo Critchley and Rebecca Dew, um, uh, the Neurodivergent Brain Body Clinic in Sussex Partnership Trust, um, which is an NHS, uh, trust, where we look at patients' kind of physical and, um, mental health concerns, um, ADHD, autism, and Tourette's. Um, pain is such a common problem. Hugely common problem. I mean, almost all of my patients are in some way pained and fatigued. Uh, and fatigue is a, is another big thing, and actually pain and fatigue often come together. So we did a study and, um, a few years ago, where we looked at people, uh, with a diagnosis of fibromyalgia, which is a chronic pain condition, and, um, people with a diagnosis of ME/CFS, so chronic fatigue syndrome. And, uh, we were trying to work out sort of biological mechanisms. You know, I talked about, um, how if you, um, you know, some people have this business where they feel dizzy and lightheaded when they stand. Uh, we wanted to see if, uh, 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. Uh, s- so we, we had this quite neat set of, um, experiments, and we're so grateful to the participants who took part. And what we found was of the patients who had, uh, fibromyalgia and, um, ME/CFS, nearly four-fifths of them, no, exactly four-fifths of them, uh, met diagnostic criteria for symptomatic hypermobility. Four-fifths. 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 fur- We also found that the hypermobility, historical hypermobility, predicted all the pain and fatigue, uh, levels and brain fog levels, and, um, we found that, um, yeah, we f- we, we, we found a lot of differences in, in, you know, kinda inflammation. And so we found, you know, these, um, these differences in pain and fatigue were related to hypermobility and hypermobility's influence on the autonomic nervous system and on, um, brain, um, uh, structure, uh, brain function. W- we also found, uh, interestingly, that the inflammatory reactivity in response to an inflammatory challenge in these patients, uh, was much more powerful in people who had long, thin fingers, uh, which is a hypermobility feature. We, um, we then took this work a bit further in that I presented it at a, at a Long COVID conference, because ME/CFS and fibromyalgia are quite similar to, um, to Long COVID, and formed a collaboration with Professor Claire Steves, who, um, had been, um, 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, 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 30% more likely to have not recovered from COVID, so i.e. have Long COVID. And I know, uh, we've also, um, myself and my colleague, uh, Lisa Quadt, have replicated that in a different sample that's got less women, uh, and is more ethnically diverse. So we know that there is this relationship between hypermobility and, and, and Long COVID, and it is really interesting to see how neurodivergence will fit into that.

    7. AP

      Mm-hmm.

    8. JE

      We don't have that data, but I would suspect that ADHD, um, 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, uh, 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, um, is actually a promising treatment for Long COVID.

    9. AP

      Hmm.

  15. 45:07 – 47:26

    How can someone with ADHD and hypermobility help themselves to relieve the negative symptoms?

    1. AP

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

    2. JE

      Well, I think it's a tricky medical landscape. Uh, 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, uh, waiting list is, uh, with the waiting lists is, is really, um, is really terrible. So, um, and also hypermobility, not everyone is aware of it. Not everyone's aware of its significance. Uh, lots of people just think, "Oh, this is party tricks," or, um, uh, it's not, it's, it's not medically important. I would say, I'm a patron of a, of a charity, uh, called SEDs Connective. I'm also a patron of a charity called ADHD Aware, um, that you, uh, look into the resources that these charities offer, and you, um, try and have a conversation with your doctor. Now, there is actually on... So we talked about hypermobility and this condition called Ehlers-Danlos syndrome. Uh, there is something called the Ehlers-Danlos Society, um, 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, um, that helps doctors manage some of the common medical problems-

    3. AP

      Hmm

    4. JE

      ... in, um, in, uh, in hypermobility. I would say look at my Linktree, which is Linktree bendybrain, and, uh, just print out some of the papers and take them to your, um, take them to your GP or your, your physiotherapist. But I think it's so important to realize that you are not alone and, um, that you are not, you know, making it up or that it's not just anxiety, that there are very, um, many reasons why you might not be feeling your best.

  16. 47:26 – 52:49

    The ADHD item segment

    1. AP

      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-

    2. JE

      Oh, yes

    3. AP

      ... for its reveal. [laughs] Every week I ask my guests to, to tell me an item that most represents ADHD in their life or in their mind, and I'm gonna reveal yours now.

    4. JE

      Ah, thank you.

    5. AP

      Whoa. Right.

    6. JE

      Oh, wow.

    7. AP

      I'm gonna lift that up. Right, that is a book, a dance book.

    8. JE

      Yes.

    9. AP

      So why does a dance book or just dancing represent ADHD for you?

    10. JE

      Well, it's an interesting one. So, um, I have ADHD. Um, I'm AuDHD, and I can't dance. Uh, my, uh... But we know that lots of hypermobile people can, uh, or that really it's, it's pretty much a prerequisite, uh, for, uh, for dancing. And I think the closest I get to dancing is in relation to ADHD, in terms of, I mean, I've talked, uh, to you about, um, lots of, you know, connections and things between things, and we've probably gone off on a couple of tangents. I think that's a, a type of, a type of dancing. Uh, but I really don't believe that, you know, in the ADHD, um, superpower tragedy narrative, I think that, uh, it's got strengths and challenges. So it might be great to dance, and, uh, when I was young, I was quite fond of, uh, this film Flashdance, which came out, I can't remember, but when I was, when I was, when I was young. And in Flashdance, the main character is this sort of, um, gritty, um, determined welder who wants to go, a female welder who wants to go to ballet school-

    11. AP

      Mm

    12. JE

      ... and, and dance. And so, and there's this, there's this song about, you know, how, you know, where, kind of where the dancer becomes the dance. And there is an idea for me where, um, 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-

    13. AP

      [laughs]

    14. JE

      ... that's spitting out, uh, uh, s- statistics at you, but I really, I really like playing with, with all of that. But it is sometimes, um, 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, um, we are, we're doing some research right now, um, about, um, creativity and hypermobility and neurodivergence 'cause there, there seems to be a lot of it about. I was inspired by, um, a film director collaborator, Nigel Cole, about whether maybe there is lots of, um, hypermobility and neurodiversity in the performance industry. But so you have this wonderful, um, performance, and in some ways, ADHD, you could look at me and say, "Oh, you know, she's written all these papers, and it's all, um, um, it's all wonderful." Those ballet dancers have probably lost most of their toenails.

    15. AP

      [laughs]

    16. JE

      Uh, they, uh, will, uh, be in agony, and, um, it r- it highlights to me the, um, yeah, the strengths and the, and the challenges.

    17. AP

      Mm.

    18. JE

      But that the world is better, uh, for ballet dancers, um, I'm sure. And as someone who has some of the physical problems associated with hypermobility doesn't dance, um, uh, this is my way of dancing.

    19. AP

      That's really amazing. I've never thought of it like that before. I'm also terrible at dancing. Well, you didn't say terrible, but I am terrible. [laughs]

    20. JE

      No, no, I, I, I feel, I feel... I mean, I physically, I've just, you know, um, what with the arthritis, but I am so clumsy.

    21. AP

      Mm.

    22. JE

      I would, I would trip over my own toes.

    23. AP

      Yeah. Having mental, like 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?

    24. JE

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

    25. AP

      Mm

    26. JE

      ... that is its own form of dancing.

    27. AP

      It can be quite frustrating if you've got that dance going on in your mind and you're talking to a slow talker.

    28. JE

      Mm.

    29. AP

      And their, their, the rhythm of their dance isn't quite at the pace of yours.

    30. JE

      No. And, uh, and that, that kind of sense of frustration when you, when you know the answer but you can't say it.

  17. 52:49 – 1:02:20

    The ADHD agony aunt segment

    1. JE

      Um-

    2. AP

      I wanna do the Washing Machine of Woes, Jessica-

    3. JE

      Of course. Yeah, yeah

    4. AP

      ... which is the ADHD agony aunt section. Um, and it's-

    5. JE

      Do you know, I think I became a psychiatrist 'cause I sort of wanted to be an agony aunt. When I was younger-

    6. AP

      Yeah

    7. JE

      ... I loved reading, um, uh, um, m- magazines about real life stories and the agony aunt sections.

    8. AP

      Well, this should be a perfect segment-

    9. JE

      Well, we'll, we'll see. We'll see

    10. AP

      ... a perfect segment for you.

    11. JE

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

    12. AP

      [laughs] 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?

    13. JE

      Oh, God. Sometimes, well, I've had to put washing on-

    14. AP

      [laughs]

    15. JE

      ... maybe three or four times, uh, to, um-

    16. AP

      Mm

    17. JE

      ... um, it's, or you get this, uh, uh, the energy is there to, um, to, to bundle it-

    18. AP

      Mm

    19. JE

      ... into the washing machine, but somehow to take it out, very hard to find.

    20. AP

      I have been using the Tiimo app, though, Jessica, which is helping me, uh, get through this a little bit better.

    21. JE

      Yes.

    22. AP

      In the Washing Machine of Woes, someone has written in and said, "I suffer 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 connected to my ADHD and hypermobility, and could I do something to test this?"

    23. JE

      I think that's a really interesting question, and, um, I think that ME has, which is also called chronic fatigue syndrome, is woefully misunderstood, and we are, we are, we are veering a little bit closer. Um, but I and colleagues, we've been trying to, to, um, put together a funding proposal to trial a, um, uh, an experimental drug called low-dose naltrexone, which is the low dose of a, um, drug that was used in addiction, uh, as a possible, uh, treatment for ME/CFS and fibromyalgia. We have not got very far, um, and I think we need so much more research and resources into ME/CFS. But in answer to the viewer's question, yes Uh, wait a couple of months and you'll be able to read the paper. Uh, but to, to paraphrase, we found a link between neurodivergence and, um, chronic pain and fatigue that was explained by hypermobility.

    24. AP

      Hmm.

    25. JE

      And that was in adults. We also had published, so you can find this on our LinkTree, on my LinkTree, uh, 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've had to have studied them from, uh, 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, uh, birth cohorts.

    26. AP

      Hmm.

    27. JE

      So in the ALSPAC birth cohort, which is all of the children born in Bristol and Avon in 1992, they were all, um... Well, not all, 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 seven or nine, 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? Um, it was, uh, but we had that information on all of those seven and nine-year-olds, and we then had information at 18 on whether they had chronic disabling fatigue, which is a precursor to, uh, ME. And lo and behold, if you had ADHD characteristics above a, you know, recognized threshold, uh, as a young child, twice as likely to have chronic disabling fatigue at 18. Same with autistic characteristics. But really, really interesting is, you know I've talked about these kind of mathematical explanations for why things are linked, was that the, um, the relationship between neurodivergence at seven and nine, and chronic fatigue at 18 seemed to be explained by high levels of inflammation age nine 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. 'Cause you can imagine how chronic fatigue syndrome is a bit like brain fog that you get in ADHD, uh, that it could be a sort of all or nothing experience that you get in ADHD and autism. Um, and I think that... But what we know is that the, if you think about the, the, 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're more likely to be in this stretchy body that is more sensitive to inflammation and, um, 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, a transition at work, and then you are really struggling, uh, with, um, with, uh, with fatigue. And I think it's also important if you're in that position to make sure that you're treating, or you know, that you're, um, if you've got any dizziness or lightheadedness when you stand up, so POTS, um, symptoms that you, you know, that you get them m-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, uh, that, um, autonomic challenge leads to changes of blood flow in the brain. So that's important, uh, 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. Um, uh, but I think we only have finite resources. You don't want to get into burnout or burn up. Uh, you want to, um, uh, try and, try and, um, use the, uh, spoons that you have in a sensible way.

    28. AP

      Burn up, what's that?

    29. JE

      Burn up. Burn up is where you become all fizzy. So burn out you become, uh... I mean, that's my own term.

    30. AP

      Hmm.

  18. 1:02:20 – 1:05:05

    A letter from the previous guest

    1. AP

      There's one more thing that we do at the very end of this show, and that is to deliver you a letter-

    2. JE

      Uh-huh

    3. AP

      ... that has been written by the previous guest, and they wrote down their three rules to live by.

    4. JE

      Okay.

    5. AP

      And they posted it in that post office.

    6. JE

      Yes.

    7. AP

      And through the magic of time travel, I'm gonna deliver the letter to you now.

    8. JE

      Thank you.

    9. AP

      And if you could kindly read it out.

    10. JE

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

    11. AP

      Your whole stretchy self. [laughs]

    12. JE

      Yeah, we're stretching. That is... There was a book Isabel Knight wrote many years ago when I was first, um, 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. Uh, 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, [sighs] 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, um, or, um, or know about. And I was having a conversation, uh, with a friend the other day and about how... And I think this is maybe more true for women, but I'm sure it can be true for men, that by growing up with ADHD, um, you, you sort of, um, shave off all the hard edges of yourself to try and make yourself more acceptable to other people. You know, sort of this people pleasing, and that actually learning to accept those difficult edges is really, really important. Self-compassion is easier said than done.

    13. AP

      Mm.

    14. JE

      Uh, um, but, uh, it is, it is very, very important. Thank you, Alex.

    15. AP

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

    16. JE

      No, thank you. It's really lovely, uh, to speak to everyone, and if you want to follow me, please, um, look at my LinkTree, uh, LinkTree bendybrain.

    17. AP

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

    18. JE

      Thank you. [outro music]

Episode duration: 1:05:05

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