Welcome back to a Wisdom episode.

I'm here bringing you clips from really interesting conversations that I've had over the past couple of years or maybe last year, really with some guests that I know have so much wisdom and insights to share with you about adhd, women's well being.

And I want to bring you more of the sort of niche conversations.

And so Today I have Dr. Jessica Eccles, who is a clinical senior lecturer at Brighton and Sussex Medical School.

She specializes in neurodivergent brain body work and she leads a brain body clinic.

So she really is at the forefront.

And what Jessica does a lot of is research and really spearheads the medical community into understanding about how ADHD can show up not only in a psychiatric condition, but across the board throughout our body in all the different ways it can manifest.

And so we'll talk about this.

And we talk about things like pain and inflammation and fatigue, the different links between adhd, autism and joint hypermobility, and how proprioception impacts our emotional regulation and most importantly, how we advocate for ourselves for our neurodivergent children as well.

So she's going to be sharing about a recent study looking at pain and neurodivergence and all these different co occurring symptoms.

And so it's really important that we get this information reinforced.

So here is this conversation with Dr. Jessica Echols.

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 experience symptoms of abnormalities of the autonomic nervous system 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 was mainly women and mainly white women.

So we've actually gone for a more diverse sample and we have 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 have previously been diagnosed with personality disorder but had subsequently been confirmed as autistic.

So that was.

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, 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 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, in 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 seven and nine and we saw whether they had ADHD or autistic features and they were followed up until they were 18.

And, 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, maybe 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 life.

So I mean, obviously it's a very sad outcome 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 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 clique in us, 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 is 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 Link tree.

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, 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, 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?

Like, we, 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 Ehlers Danlos Support uk, the Ehlers Danlos 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, we're all tired.

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

So I hope you enjoyed listening to this shorter episode of the ADHD Women's Wellbeing podcast.

I've called it the ADHD Women's well Being Wisdom because I believe there's so much wisdom in the guests that I have on and their insights.

So sometimes we just, just need that little bit of a reminder.

And I hope that has helped you today and look forward to seeing you back on the brand new episode on Thursday.

Have a good rest of your week.