Welcome to the ADHD Women's Wellbeing Podcast.

I'm Kate Moore Youssef and I'm a wellbeing and lifestyle coach, EFT practitioner, mum to four kids and passionate about helping more women to understand and accept their amazing ADHD brains.

After speaking to many women just like me and probably you, I know there is a need for more health and lifestyle support for women newly diagnosed with adhd.

In these conversations, you'll learn from insightful guests, hear new findings, and discover powerful perspectives and lifestyle tools to enable you to live your most fulfilled, calm and purposeful life wherever you are on your ADHD journey.

Here's today's episode.

I'm so happy to welcome back Dr.

Jessica Eccles.

And Jessica is a reader in Brain Body Medicine, and that's at Brighton and Sussex medical school.

And Dr.

Eccles is also a consultant neurodevelopmental psychiatrist.

So I'm just so happy to welcome you back.

And we'll just start from where we left off from our last conversation because I think it was so well received and people were so grateful to have your insights and to hear what's been going on with all your research.

So perhaps you can give us a little bit of an insight as to what's been going on since we last spoke.

So my research is mainly looking at brain body connections, and I've spent really since 2009 looking at how this difference in how the body is built called joint hypermobility, which is a difference in connective tissue about how it affects all sorts of things.

So we started off looking at the relationship with anxiety.

We got into the relationship with pain and fatigue and also neurodivergence.

So autism, ADHD and tics.

So things like Tourette syndrome.

We've looked at Long Covid, we're looking at all sorts of things.

So I think probably since the last podcast, we've managed to publish a few things that are basically showing even more of these links and how strongly everything is connected.

So in March, we published a study about Long Covid.

During the COVID period.

I became interested in Long Covid because we've previously been doing experimental work about fibromyalgia and ME cfs.

They are conditions that a lot of my neurodivergent patients have been diagnosed with.

And our earlier work suggests that there's a really tight link between fibromyalgia, ME CFS and hypermobility.

So I gave a talk during COVID to a Long Covid masterclass and I met this wonderful woman called Professor Claire Steeves.

Who was running something called the COVID Symptom survey Biobank.

So it was the Zoe app.

If people remember, before the Zoe app became a diet app, it was a Covid symptom tracking app.

And it was actually because of that that they introduced things like change in sense of smell and taste into the national guidelines.

So we met and we collaborated, and she included a joint hypermobility questionnaire in one of their data tools.

And what we found was that in nearly 3,000 people, some of whom had Covid.

No, 3,000 people had had Covid.

Some of them recovered from COVID and some of them hadn't, so basically had long Covid.

We found that if you were hypermobile, you were 30% less likely to have recovered from COVID So we weren't able in that study to explicitly look at ADHD and autism and other neurodivergent conditions.

But it seems from the patient communities and from some emerging evidence that probably neurodivergent people are disproportionately affected by long Covid.

And I would hypothesize that that is because of the presence of joint hypermobility and the effect that.

So a lot of people, maybe 3/4 of people with long Covid develop something called postural tachycardia syndrome.

So we've already shown in our 2022 paper that in neurodivergent people, you're more likely to experience symptoms of abnormalities of the autonomic nervous system, which, which lead to things like postural tachycardia syndrome and pain if you are neurodivergent because of hypermobility.

And 75% of people with long Covid actually develop postural tachycardia syndrome, which is one of these difficulties with the autonomic nervous system.

So I think they're all interlinked neurodivergence, pain, fatigue, difficulties with the autonomic nervous system.

Some people call that dysautonomia.

So that was a really important piece of work.

And we've actually gone and replicated that work in a different kind of broader sample because our research, the Zoe app, was mainly women and mainly white women.

So we've actually gone for a more diverse sample and we've found the same results, and we're waiting for that to be published.

So that was very exciting.

The other exciting things that we've done are really in two areas.

The first is we published a paper that explored the experiences of people, mainly women, who had previously been diagnosed with emotionally unstable personality disorder or borderline personality disorder.

And we know that There is definite overlaps under diagnosis misdiagnosis with ADHD and autism.

And so with colleagues Bruce Tamilson and Sebastian Shaw, we published a paper exploring the experiences of people who had previously been diagnosed with a personality disorder but had subsequently been confirmed as autistic.

So that was interesting because personality disorder is a label that is typically applied to women more than men.

It is really.

It's an interesting space that was interesting.

And then there were two other things that we've done that I think were pretty, pretty exciting.

One is, I don't know if readers are familiar, not readers, listeners are familiar with proprioception, but proprioception is the sense of where you are in space.

So proprioception is about, it's one of the senses, it's an external sense.

And what we showed in nearly 200 people was if you had neurodivergent characteristics, we didn't specifically sample people in order to have neurodivergent characteristics, but if you had neurodivergent characteristics, you were more likely to have emotion regulation problems specifically related to dissociation.

And what we found is that was because of an uncertainty about where you were in space, a proprioceptive problem.

And that was further influenced by the presence of joint hypermobility.

So interesting.

So would you say that would apply to someone who relates to dyspraxia or has been.

Proprioception is a key problem in, in dyspraxia, but it's also really common for hypermobile people, ADHD people, autistic people, across the board, there are often senses of difficulty about where you are in space.

So I mean, it's quite popular, isn't it, on Instagram and no doubt TikTok, there's all these things about the ADHD walk, aren't there?

You know, people kind of, you know, veering into the pavement, veering into their friends.

That's proprioception.

So the reason why I'm so excited about that paper is not only is it a really nice integration of brain and body, is it means that in the future we could potentially target proprioception as a means of helping improve emotion regulation.

And we know for autistic and ADHD people, emotion regulation difficulties are inflamed fact, even though they don't feature in the diagnostic criteria, some of the features that have the most substantial impact on day to day life.

You know, people talk about rejection sensitivity.

We have a paper that we're just submitting for publication about rejection sensitivity.

So that is all.

I think that that is really promising in terms of future Research.

We also, we had a paper published.

We looked at, I think it was about 8,000 children born in Bristol in the 1990s.

And we looked at them when they were 7 and 9 and we saw whether they had ADHD or autistic features.

And they were followed up until they were 18.

And we looked to see whether they experienced disabling fatigue at 18.

And we found there was a link between having childhood neurodivergent traits and experiencing fatigue at 18.

And what was really interesting was that link was explained by the presence of inflammation in the child, age 9.

So it suggests that neurodivergent children, for a number of reasons, may be naturally more vulnerable to inflammation, perhaps because of hypermobility or stress from being neurodivergent or being traumatized or experiencing trauma causing changes in the body in terms of inflammation.

And these all link together to mean that you may be more fatigued in later, in later life.

So, I mean, obviously it's a very sad outcome for the, for the neurodivergent children.

It means that we could hopefully, by recognizing neurodivergence better and supporting neurodivergence better, you know, when people are young, we might be able to mitigate against people experiencing things like chronic pain and fatigue.

It's fascinating because I've got a nine year old daughter and she's in year five and I know she is neurodivergent.

I know that we're waiting for her to be assessed and she suffers with, I know, also hypermobility, pain.

She plays a lot of sports and often comes back and I have to massage her legs and I have to, you know, put magnesium salts in her bath.

And um.

And year five in England is a year where they are prepping for grammar schools, high schools, exams, whatever that is.

The jump from year four to year five academically is actually huge.

Yeah.

And also from a maturity perspective, especially with the girls that I'm noticing that she's my fourth child that's gone through, through all this, is that the cliqueness, the bullying, however you want to look at it, sort of just the way the sort of playground antics suddenly gets a little bit meaner and a bit nastier and the RSD starts coming out.

So I'm noticing all of this right now, the sensitivity that she's experiencing alongside the pain that she's experiencing in her body.

But also I'm noticing that she is questioning her ability from an academic perspective with her maths and the fact that she's being challenged and she's not being understood why she wants, you know, she's been given extra help at school and obviously she knows what I do for a living and so I talk about this all the time, but still, you know that when you say that, it cuts deep because I can see, I can see where this is all manifesting from this age.

So this is, it's validating, I think.

I know it's, it's hard as a.

Parent to hear this, obviously very hard, but I think it helps join the dots and also it helps us think that we must support neurodivergent people, children, adults in a much better way to ensure that we have good outcomes.

Because for every child that is struggling at school or experiencing physical or mental health difficulties as a teenager, this is a real tragedy and especially if it could be potentially preventable or they could be better supported.

So I just want to say that if anyone is interested in finding out more about those studies or the other work that we've been doing or the work that we've done in the past, they should check out my linktree.

My link tree name is Bendy Brain.

So if you just, if you just search linktree Bendy Brain, it will come up with links to all these papers and they're all free and open access so they're all available for everyone to read.

I think it's so important that people have this research and this evidence to hand to advocate for their children, for themselves.

They can go to the doctors and it's not, oh, I've just seen something on social media or I've just read, you know, an article in the Daily Mail or whatever, they can see there's like strong evidence based research going on and it's really, really powerful because going back to this age that you've kind of, you've seen this age around age 9 where the inflammation kind of kicks in, the neurodivergence is more prominent and maybe more disabling that if teachers are aware of this, if they can start from the age of eight or nine being like, right, we really need to look out for the neurodivergent children and there's special plans in place and there's, there's more awareness and parents can have this awareness, then like you say, we can start putting things in place to support them and change the direction of potentially, we don't want them at the age of 18 to be suffering with fatigue.

We want them to be supported way earlier so they can help themselves.

And the amount of times I've spoken to different physios about hypermobility in children and it's been dismissed and disregarded or not even kind of considered?

No, it's a real problem.

What can we do now?

We've got more information.

And why is that still not filtering through?

I mean, I think there's a couple of things.

So people often contact me and say, oh, why doesn't my doctor know about this?

Why doesn't my physio know about this?

I think there's a real problem in terms of how long it takes for scientific knowledge to get embedded in the medical and education community.

And I think they say, on average, you know, takes about eight to 10 years for a paper to, like, get into practice at least.

But what I would say is for people who want more support or resources for their neurodivergent or hypermobile children, I would really recommend that they link up with a charity organization.

They're based in Sussex, but they're international, called SEDS Connective.

SEDS Connective.

And SEDS Connective is specifically for supporting hypermobile neurodivergent people.

The chair of the charity, Jane Green, I'm the patron of the charity, contributed to the eds.

So the Ehlers Danlos Society in the UK have produced something called a school toolkit.

So if people just Google EDS School Toolkit, that should be helpful.

And then obviously for adults and children, if you are affected by hypermobility, you're wondering about whether you have postural tachycardia syndrome or mast cell activation, there is a good resource for your gp, also from the uk, Ellis Danlos Society, called the EDS GP Toolkit.

So the EDS Society in the uk, or it's called ehlerstanos Support uk.

The Elastanos Society is an American organization.

So EDS UK GP Toolkit and EDS UK School Toolkit and SEDS Connect, if I think are really invaluable resources.

Yeah, that's so, so helpful because it is about advocating, isn't it, for ourselves?

Like you say, if it's not filtering through, we have to be proactive.

And I know we're all tired.

I know as neurodivergent people we've had to wait so long to get answers and support.

And then if we're supporting children as well, you know, it just always, it feels like we're pushing, pushing against the tide.

And it's amazing when you get a teacher who's, you know, knowledgeable or a doctor who's knowledgeable, but they are few and far between.

I've got an amazing woman in my community who is a head teacher and she always Messages me after podcast.

And she brings all the information that she's learning from the podcast into her practical, you know, day to day work with the kids.

And she brings people in to talk about it.

And I just think that's just her attitude is so expansive and she just wants to kind of, whatever she's learning, she wants to filter out to the kids, to the parents, to the teachers.

And so I would say to anyone that's listening right now that if they've got access to filtering this information out, please do.

Because what you've just said then with the toolkit, the school and the GP toolkit, how amazing would it be if every GP could, could have that and to start and, and I wondered if you could maybe speak to people who are kind of going, I, I'm maybe I'm curious about hypermobility and perhaps how that shows up not just from a physical but from an emotional perspective.

What would you say those key signs are that we need to be looking out for?

Well, so I mean hyperbarinity is interesting because it's a bit of a red herring.

The thing that you is trained to spot and that makes people think they're hypermobile is the presence of flexible joints.

So it's things like being able to bend your little finger back 90 degrees, you know, your elbows going backwards, knees going backwards, being able to put your hands flat on the floor and also being able to put your thumb back on your wrist.

But there are, that's one of the scales used to do it.

And then there is this really good self report questionnaire.

So 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 have you ever been able to touch your thumb back, bend your thumb back to touch your forearm?

As a child or teenager, did, did you have any dislocations on more than one occasion?

Did you, as a child or teenager, did you amuse your friends by contorting your body into strange shapes or could you do the splits?

Do you consider yourself double jointed?

So there's five questions.

If you score two or more on those questions, there's a very high probability that you're hypermobile.

If you don't score two or more, that doesn't mean to say you're not hypermobile.

It's a bit like the COVID test and the lateral flows.

Just because it's not positive doesn't mean you don't have Covid.

Do you see what I mean?

So there are other things that can make you Think that you might be hypermobile.

So that's like having soft, stretchy skin that bruises easily.

Recurrent ankle spots, brains, those.

Those sort of things.

A long, thin face, narrow wrists, long arms.

All of these things can make you think about hypermobility.

And the thing about hypermobility is because it's a difference in how the body is built.

Connective tissue, the kind of cling film that's everywhere in the body, that means it affects everything.

You might be more likely to experience asthma, you might be more likely to experience gastro problems.

Um, and you can see that's because of the way the gut moves.

And maybe there's a slightly different gut barrier, which means maybe you're more likely.

You know, the.

The microbiome.

There's all sorts of things that are going on.

You're more likely to experience problems with dizziness on standing or after a large meal or after a hot shower.

These are all the umbrella things for postural tachycardia.

You might be more likely to experience things like Raynaud syndrome, which is where you get circulatory difficulties.

It's associated with so many things and pain and fatigue and emotional problems, a whole host of psychiatric things.

So we're doing work about how it's related to psychosis, how it's related to bipolar disorder, how it's related to eating disorder, how it's related to anxiety and depression.

So there are all of those things together.

And we also know it's related to neurodivergence, ADHD and autism and pain and fatigue.

But what is also interesting is hypermobility in and of itself is not necessarily a problem.

So you can have flexible joints and not have problems.

So it's only really a problem when you actually have medical issues that go alongside it.

Lots of hypermobile people often find that they have pain and that they may.

Their joints may be unstable.

They might something called sublux, which is like nearly come out of socket or actually come out of socket, which is dislocation.

So there are all of these things to watch out for.

But I think what is really interesting is that, like neurodivergence, there are strengths associated with hypermobility as well.

So being hypermobile is pretty essential to being a sports person, musician, dancer.

And we are doing some work looking at the relationship between hypermobility, neurodivergence, and creativity.

And that is.

We're just preparing that for publication.

So that's really exciting.

And we know.

What are you noticing there, then?

Well, I can say, yeah, that we've done three different studies These are inspired by meeting a film director who was curious about the relationship between hypermobility and creativity, Nigel Cole.

We did a survey where we looked at people in the general population to see if they were creative or not.

And we also measured whether they were hypermobile or neurodivergent.

And they all seem to be interlinked.

I can't give precise details because we haven't published the paper yet, but we have another paper under review, which means it's going through the publication process where we interviewed neurodivergent creative people and we found how important, you know, how creativity was really important to neurodivergent people as a means of expression and as a means of.

I don't like the word resilience, but kind of as a.

As a way of.

Of helping build resilience and as a means of channeling hyper focus.

So that will hopefully come out soon.

And we also know.

So, I mean, people will have been watching the Olympics over the summer.

Someone like Simone Biles, she's hypermobile and adhd.

She struggled with her mental and physical health, but she's amazing.

There's no one in the world who can do what Simone Biles does.

And that's probably partly because of her being hypermobile and neurodivergent.

Yeah, it's so brilliant to be able to have this kind of like, yes, we do need to hear the challenges.

We need to be able to connect those dots, look back over the genetics, the generations, how it's all presented.

But to also know that with this awareness and this information and this empowerment, we can sort of take the good and the bad.

And like you say, with neurodivergence, it's, you know, as soon as people say, oh, it's a superpower, we all know that if we're neurodivergent ourselves, there are many other struggles.

And you may see all the creativity and the energy and the enthusiasm, but behind the.

Behind the doors at such a cost?

No.

And I think that's one thing.

We're just putting together a group of researchers to try and apply for some money, really to try and disrupt the sort of superhero tragedy narrative, because neither is really helpful at all.

And you have to have a much better holistic sort of sense that someone can be challenged in one environment but really successful in another.

And that this sort of sense of disability is dynamic and it changes on in the context across the lifespan and in terms of the support that people are given.

And we obviously can't speak for all neurodivergent people.

But the, in the same person you can have tremendous strengths but also a number of challenges.

And you are more than just either a challenge or a strength.

And that's where the sort of spiky, spiky profile comes in.

Yeah.

And it's also recognizing where we thrive in environments and where we are totally depleted in other environments.

And using this data, I mean the data that we experience as ourselves and.

But also what you're providing through your research and trying to kind of filter out what, what works for us and what doesn't work for us and create like almost curate this, this new being.

Absolutely.

And I think what's really important as people sometimes think that, you know, to get reasonable adjustments or support in work or education, that you technically need a diagnosis either of say hypermobility or neurodivergence.

But the Equality act is quite clear that you don't.

If you suspect and you've been impacted for over a year, then you should be entitled to adjustments at work and in education settings.

So if anyone is struggling with their work or education, they should reach out and ask for reasonable adjustments.

And if you're a student at university, to reach out for disabled student allowance.

And if you're working, if your company has occupational health, to get occupational health involved.

But even if you're self employed or employed to try and get support from this government scheme called Axis Access to Work, which helps you know whether you're employed or not, if you're self employed, it works for them too to get, you know, you could get access to neurodivergence coaching, you might be able to get access to a pa, you might be able to get technological solutions that will help you.

There are, there are lots of, lots of things.

But start a conversation with your, with your education provider, with your employer, with yourself, if you're self employed, about what, what reasonable adjustments could be made to mean that strengths are enhanced and challenges are mitigated.

Yeah.

And I think what's important to state is that a lot of people think they need a diagnosis.

And like what you just said, then if you're able to self identify and, and use that as a way to help, because I think so many of us are waiting and then we go, well, I can't get any help.

And then they're stuck in this sort of like holding bay of waiting for the diagnosis to ask for any help or these reasonable adjustments or even access to work.

And I'd like to just, I think access to work is fantastic, but I'd like to remove the gloss over this because it is so challenging to deal with.

Oh yeah, someone that's had to deal with it myself, but from what I hear from a lot of other people as well, I feel, I feel like that system is great when it works, but when it's not working, it's a very, very tricky, you know, I mean.

You, you, if it is incredibly challenging, access to, I mean it isn't in the to apply, it's very straightforward.

You just go to just Google access to work, press apply.

But then the paperwork afterwards is, is, is, is complicated.

I think it's worth reaching out to, to your community and other organizations to see people who have managed to navigate the system.

I do think that it is, even though it has its challenges and there is a long wait, it's a different end of the DWP say compared to pip Personal Independence Payments.

They really struggle.

You tend to need a natural diagnosis for that and I think it's a step in the right direction.

But yeah, you're absolutely right.

If you have a disability or you are challenged, access to work is challenging and it's a sort of a vicious circle.

If only I was less disabled, I'd be able to get the support that I need to help me with my disability.

Yeah, it is, it is, it is a strange circle but I think because it's, there's growing awareness of this scheme.

I think that there are structures in place to, you know, kind of support groups and things for people to try and find out more.

Obviously very difficult if you're self employed.

But because more and more people are using access to work, there should be someone within the HR department of your organization who is familiar with the processes and should be able to support with the processes as well.

Yeah, absolutely.

And if you work for yourself, I would say definitely find somebody who enjoys the task of filling in forms and waiting on the phone for 45 minutes because you might need that support.

I just wanted to close with, you know, you're an expert in brain body medicine and what you do with neurodevelopmental psychiatry and these, this amazing emerging new way of looking at the body, you know, the connection between the brain and body.

And it's not just, I mean, if we specifically talk about adhd, it's not just this anymore, it's not this very sort of binary way we're looking at it.

Do you think that the future, with all the research that you're doing and understanding all the many connections throughout our body, from the gut to our skin to our tissue to pain, to emotional regulation, all of that, are we going to see a movement into being able to recognize neurodivergence as not just adhd, autism, and be able to have, I don't know, more of an understanding of what it really looks like is our doctors and the way doctors are trained begin to start being able to understand brain body medicine in a much more complex way.

I really hope so.

I think we're sort of at the very early days of a movement that may end up being a paradigm shift in terms of how people think.

I genuinely do think that we are just kind of, you know, we haven't even got anywhere near the crest of the wave, if you see what I mean.

I think there will be a genuine change in understanding.

I think people will realize that neurodevelopmental conditions commonly co occur and that co occurrence with physical health issues is the norm rather than the exception.

I also think because we talk about neurodevelopmental conditions, we talk about neurodivergence, we talk about neurotribes, neurotypes, I think we have to get our head around the fact that being neurodivergent is a brain body experience.

We mustn't forget about the body.

And you know, people say, oh, well, you don't look autistic, you don't have, you don't look as though you have adhd.

But we know like from the memes that I was telling you about in terms of the walking, you can.

We're doing a study at the moment about gait in ADHD and autism and hypermobility.

It is a physical experience.

It is an embodied experience.

Oh my goodness.

I 100% can see the gates of someone who's neurodivergent for sure.

It's also fascinating.

The last question I want to ask you is the proprioception and with regards to emotion, emotional regulation, is that with regards to finding ways to calm.

What's the part of the brain that, that it's related to with like balance?

Well, there is a part of the brain, there are bits of the brain that specifically look at, represent where we are in space.

And one of our early brain imaging studies where we showed that the brains of hypermobile people were different in areas involved in emotion and fear processing.

We also showed that they were different in where you represent yourself in space.

I think what it is, is it suggests that there is a whole avenue and potential for research and clinical work that we could improve emotion regulation in neurodivergent or hypermobile people through sensory regulation, be that proprioception or Our tastes in general, you know, our senses, taste, touch, sound, all of those things.

So it's really harnessing the body and learning to find the just right sensory state in order to help with pain, fatigue, emotional regulation.

That would be my.

You know, that is something that we're trying to get funding to look into because we know that conventional psychotherapy and antidepressants and pain management strategies, they really don't work for everybody.

And I think this whole thing is inviting a new way of thinking and that way of thinking will be partly using sensory regulation and bodily targets to help with all of these things.

Yeah, I think 100% where I see how everything manifests, that it's a somatic experience in our body as well and not just to go for the therapy, which sometimes can be very helpful.

But if we're understanding that this is a brain body condition, we have to be able to be working with the body from a somatic perspective as well, which is, you know, five years ago when I was trained to do eft, I was recognizing straight away that my ADHD symptoms were being lessened.

And that was because I was literally just tapping and calming and regulating and I couldn't work out why nothing else had worked as well as EFT had for calming and regulating my adhd.

So the whole thing is fascinating and I love everything that you're doing with all the research and I will definitely make sure that everyone gets your link.

Tree on the show notes.

They can really do that research.

We know that a lot of people with ADHD love a bit of research and going down lots of rabbit holes.

They really do.

So link tree, bendy brain.

And I'd also like say a huge thanks.

You know, I'm here talking to you, but this represents a huge piece of work that has involved lots and lots of people and some very dear colleagues.

So I must say a big thank you to Hugo Critchley and Lisa Quat, who have been instrumental in what Hugo.

In starting on this path of research and in terms of driving it forward.

Amazing.

Thank you.

And I'm going to ask a question because I'm sure I will get some emails.

Would people be able to contact either you or Hugo or was it Lisa that you said?

Well, no.

So I think there's all sorts of ways.

So I think the best thing is if you email me.

I can't reply to every email.

I have an out of office though, that has lots of links.

And the best thing really is to follow me.

I'm on X at Bendy Brain.

I'm on Instagram @Doctor Bendy Brain.

I'm also on LinkedIn.

So those are, those are really good ways to do it.

And if you email me, I mean, I'm always interested to hear people's experiences but I can't, I can't reply to everybody's email.

Yeah, totally.

Well, Dr.

Jessica, say that again.

Dr.

Jessica Echols, thank you so much for everything you're doing.

I'm really looking forward to sharing this and hopefully we'll speak very soon.

Thank you.

Kate.

I really hope, hope you enjoyed this week's episode.

If you did and it resonated with you, I would absolutely love it if you could share on your platforms or maybe leave a review and a rating wherever you listen to your podcasts.

And please do check out my website, ADHD womenswellbeing.co.uk for lots of free resources and paid for workshops.

I'm uploading new things all the time and I would absolutely love to see you there.

Take care and see for the next episode.