Voices in Health and Wellness

AI, EDS, and the Decade-Long Diagnostic Gap with Dr Dacre Knight

Dr Andrew Greenland Season 1 Episode 121

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A decade of chronic pain and chronic fatigue with “normal” results is not just a medical problem, it is a systems problem. I’m joined by Dr Dacon Knight, Associate Professor of Medicine at the University of Virginia, to unpack why hypermobile Ehlers-Danlos syndrome (hEDS) and related connective tissue disorders still slip through the cracks, even when the signs have been there for years.

We explore what clinicians should look for beyond a single aching joint: instability, subluxations, dislocations, fatigue, and the way connective tissue can affect multiple organ systems from gut to lungs to nerves. We also get honest about the diagnostic odyssey, why imaging can mislead, and how the lack of a definitive genetic test for hEDS forces diagnosis to depend on clinical pattern recognition and experience. That gap in training is where many patients lose time, confidence, and trust.

From there, we move into what good care can look like when it is genuinely multidisciplinary: physical therapy, occupational therapy, specialist collaboration, and mental health support that recognises the stress and harm caused by years of dismissal. Dr Knight then shares how his team is using AI in healthcare research and clinical decision support, including work on large patient datasets, the possibility of voice signatures as biomarkers, and digital twin models for education and safer experimentation.

If you care about earlier diagnosis, better chronic illness care, and practical uses of machine learning that improve real lives, subscribe, share this with a colleague, and leave a review with the one change you want to see in how we handle chronic pain.

Guest Biography

Dr Dacre Knight is Associate Professor of Medicine at the University of Virginia and Medical Director of the UVA Health Ehlers-Danlos Syndrome Center. His work focuses on complex chronic illness, connective tissue disorders, multidisciplinary care, and the use of emerging technologies including artificial intelligence to improve diagnosis, research, and patient outcomes. 

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About Dr Andrew Greenland

Dr Andrew Greenland is a UK-based medical doctor and founder of Greenland Medical, specialising in Integrative and Functional Medicine. With dual training in conventional and root-cause approaches, he helps individuals optimise health, performance, and longevity — with a focus on cognitive resilience and healthy ageing.

Voices in Health and Wellness features meaningful conversations at the intersection of medicine, lifestyle, and human potential — with clinicians, scientists, and thinkers shaping the future of care.

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Welcome And Guest Introduction

Dr Andrew Greenland

Welcome to the Voices in Health and Movements podcast, where we explore the people and ideas shaping the future of care. Today I'm joined by Dr. Dacon Knight, Associate Professor of Medicine at the University of Virginia and Medical Director of the UVA Health and Lodge Indian Centre. Dacon has been at the forefront of caring for patients with complex connective tissue disorders, having previously founded the EDS Clinic at the Maya Clinic, and now leading one of the most innovative programs in this space. His work combines clinical care, research, and emerging technologies, including artificial intelligence, to take one of the biggest challenges in medicine, diagnosing and managing complex chronic illness. So with that, Dako, I'd love to welcome you to the show. Thank you so much for joining us today.

How EDS Became The Focus

Dr Dacre Knight

Thank you, my pleasure to be here.

Dr Andrew Greenland

So perhaps we could um start from the top. Could you talk a little bit about your journey into EDS and complex chronic illness?

Dr Dacre Knight

Yeah, absolutely. It's quite a journey. There's there's probably got to be a story for everyone who gets into this field because as we kind of joke about, you don't really find it, it finds you. And that's that's what happened to me. I had joined Mayo Clinic after military service, actually, it was four years in the Air Force as an internist. And uh yeah, I had um had joined kind of with this fresh-spirited mind of of filling any gaps or or voids that were needed. And just coincidentally, at that time, there was a geneticist who was seeing patients with Ellers Stanlow syndrome who'd left Mayo Clinic and created this void, and they needed someone to step up. And I volunteered, thinking that it would be a good niche to grow into and and start a career at Mayo Clinic with and doing research and all the rest. And it's certainly been bad. It's been very rewarding. It's been a very upward climb of having to really learn a lot of things that we don't learn in medical school. And um it's it has been very rewarding because I am thrilled by all the things that I can learn from patients and and the research that we can do and and the further gaps that we identify that we can fill in the future. Thank you. And obviously, this is quite a narrow specialism.

Dr Andrew Greenland

Um is there anything in particular that drew you to that and hypermobility disorder?

Dr Dacre Knight

Well, you know, as an internal medicine physician, we're kind of trained in general practice, really knowing about all the different systems and organs and dysfunction and diseases and things. And and we know that I mean that there is a need for specialization and hyper-specialization in today's medicine because we've our our knowledge has just advanced that far, but we still have a need for GPs and primary care doctors and and those with a broad level of understanding to link these organ systems and these functions together because sometimes they do overlap. And and what I've learned in in my foray into chronic illness is that there's a often very big missing piece uh between someone connecting one organ dysfunction to another organ system, between specialties that that may not be speaking to each other, they may have some of this silo effect. And so I've I have I found that you know, even as a general practicing internal medicine doctor to be really in evolving my understanding of how you know we can collaborate and coordinate care, but also what that does to serve the benefit of the patient of linking these things together that may not be previously understood.

Dr Andrew Greenland

Got it. Thank you. That always helpful to have that kind of context. So you've built programs at both Mayo Clinic and now UVA. How has your approach to this evolved over time?

Dr Dacre Knight

Well, it's with just that in mind, of sort of thinking outside the box and knowing that if we kind of focus on one disorder, so let's take Ellers Danlow syndromes for as an example, as a connective tissue disorder, we're talking about you know, the sort of scaffolding of the body, the structural, the connective tissue parts, the ligaments, the muscles, the tendons. So taking that and taking what we know about the genetics behind it, but then crossing that over into understanding that this can affect the gastrointestinal system, this can affect pulmonary, neurologic, uh, immune systems, and things like that. So, so my experience has been that you know, I have to keep an open mind that the more we learn about one of these areas or one of these conditions, that it certainly does transcend into other organ dysfunction. And so I have found the greatest benefit to my practice is actually having close connections with friends and specialists in other areas that we can cross ideas over and understand, you know, every different patient and what their needs may be, but also how can we use the tools and expertise of different specialists that you know we may not think about initially. So that's that has been my approach, is you know, often trying to keep an as open-minded as possible and out about every individual case that I may see.

Dr Andrew Greenland

Thank you. Um so for those less familiar, can you just tell us a little bit more about EDS? Um, just to kind of give clinicians who this is something brand new, what exactly it looks like and why it's such a challenging condition to diagnose and manage. I know you've alluded to a little bit of that already, but just to give us a better picture.

Dr Dacre Knight

Yeah, as I mentioned, so we're talking about connective tissue disorders, so the inherited type. And there's hundreds of these, uh, of course, but the the most common type are the hypermobile types, and we're recognizing those more often now uh to be more common than previously thought. These are these are not rare conditions. There are some rare types of connective tissue disorders, of course. There are some subtypes of Ellers Damlo syndrome, of which there are 13 subtypes total, and some of them are quite rare and quite severe. The hypermobile type is the most common type of inherited connective tissue disorder, and we recognize that more commonly now. And so what we understand about that is that one, we have connective tissue from our head to our toe, and as I was alluding to earlier, yes, many organ systems can be involved. Uh, but uh it usually presents with hypermobility, you know, hence the name. Uh but uh this can come in the form of dislocations, subluxations, joint instability. Patients often describe chronic pain or joint pain as the most common presenting complaint. But then by subsequent dysfunction, there can be fatigue and deconditioning and all those things that happen with it. So usually chronic pain, chronic fatigue are top of the list, and then patients sort of navigate their way through rheumatology who are specialists in seeing chronic joint pain and sometimes geneticists who you know deal with inherited conditions. Um, but it's really a matter of the clinician and their experience of seeing these things and and knowing that there is a pattern in front of them to recognize and make the diagnosis. Often patients go a long time before a diagnosis is accurately made.

Dr Andrew Greenland

I was going to ask you, so how long does it typically take for someone to get a diagnosis in 2026? And how has that picture kind of changed over your um clinical experience?

Dr Dacre Knight

Yeah, well, it is improving, I'm glad to say, and and I am holding optimism for the future that it will continue to improve, but still by 2026, we're we've we've got a a long path to tread. It's it's roughly at least a decade or more uh until a patient is is receiving a diagnosis. And and that was it was first looked at in some survey studies in uh the earlier part of the 2000s, and it was around 14 years at that at that point. Uh, then some of our colleagues at Indiana University had had looked at some of their survey studies, and it was still over a decade and in just the past few years. Uh some other sites have done some other similar surveys and and see that we're you know really not better than a decade out. And um, and you know, I I am hopeful for the future, but it's still it we still have a large, long path to walk.

Dr Andrew Greenland

Where where do you see patients typically falling through the cracks, whether it be sort of from a diagnostic angle that you've kind of alluded to, or whether it's aspects of treatment outside of your institutions?

Dr Dacre Knight

Yeah, well, so related to that long diagnostic odyssey, it usually comes because chronic pain and chronic fatigue are very difficult conditions uh to address. I mean, this there can be so many things that lead into chronic fatigue, right? So it usually starts with a very casting a very wide net, and that takes time in itself. I mean, we're talking about so many different disease systems and possible uh disorders that could be causing it. So that does take time. When we get a little bit more narrowed down to connective tissue disorders and hypermobility itself, that does help um elucidate a little bit of the of the diagnosis. Uh, but the problem herein is, as I mentioned, it takes really an experienced and trained eye and someone with, you know, um also who's thinking outside the box rather than just you know typical diagnosis of you know chronic fatigue syndrome or fibromyalgia or something like that, that they notice some other specific patterns and it could be hypermobility. The problem with the hypermobile type of Ellers Danlow syndrome, though, is that we don't know the genetic cause. We don't have a specific genetic test. And often, as we know for chronic pain and chronic joint pain, is that imaging can still be normal despite pain being present. Um, uh, or even imaging can be misleading. We we know if you know we do an MRI of someone's spine with chronic back pain over you know, a high, high percentage of patients, we're going to find something abnormal. Whether that's something we act on surgically or not is a question. So there's a lot of misleading steps uh uh along that along that path to making a diagnosis. Uh, but you know, certainly uh the testing coming back normal, I would say, is probably the biggest hindrance to patients getting a quicker diagnosis, because as I said, that you know, these tests, imaging, genetic testing, and so forth can look normal and deceptively so. So it takes a kind of a second order of thinking to make the diagnosis then thereafter.

Dr Andrew Greenland

So, in terms of in terms of your mission, how how are you trying to improve awareness and to reduce that kind of diagnostic window that you talked about earlier? What's your kind of tenets of your mission?

Dr Dacre Knight

Well, yeah, well, we we do uh collaborate with the Ellers Damlows Society, who's doing a lot of fantastic work and getting voice out there uh amongst the communities and amongst the medical practices and and other research organizations, and and that's that's critical. Also doing the research itself uh to find um, you know, not only you know portray this long diagnostic odyssey and and understand how how patients are really being affected by it, but also finding answers of why these things even happen in the first place, which is the first step that we get towards if we ever want to think about coming up with cures or better treatments. We we do have treatments, uh, but you know, it it is um quite involved. It does require multiple disciplines. So I think really as far as the future goes, getting a more robust medical education into these disorders through medical schools and and training programs is going to be the real key for success in the future. So that's part of the work we're doing here at University of Virginia and with other institutions too, across the United States.

Dr Andrew Greenland

Thank you. Now I guess I know every patient is very complex and unique in their way, but what might uh might a typical treatment journey look for someone with this condition at your institution? What are the kind of the essential components of your approach?

Dr Dacre Knight

Yeah, so uh usually it it like I said, it starts with an initial um complaint of chronic pain or chronic fatigue. Those are two of the most common uh situations. And a patient might start with their primary care doctor and and report on this. And and you know, there may be some initial imaging and things like that, x-rays taken, some kind of guidance on some conservative measures for pain relief and you know um uh topical medications or things like that, or um uh you know, just kind of uh home remedies, if you will, over-the-counter medications and so forth. The problem is that we know that these are, if it is a structural and inherited condition, that this is something that doesn't go away with taking Tylenol for a few weeks. Um, and it can wax and wane on depending on someone's activity level. And and actually, if the activity level decreases because of the symptoms, then we know that it's actually it's a kind of a spiral effect, and it will actually make the symptoms worse with the deconditioning becomes worse, the joint instability becomes worse, and then the pain becomes worse. So that's it's kind of an initial intake process. Now, if the clinician who's doing the evaluation is astute enough to you know ask about other questions and characteristics of features of the pain, like you know, did it come with actually any accidents or injuries? Um, are there you know specific joint features that we're looking for? Is there swelling? Is there tenderness? And and and no, not really, not often is that the case in the hypermobility disorders. But as I mentioned, that there can be some joint instabilities, so it could be subluxations or dislocations and so forth. And so if that clinician is making those observations, then they would refer them to our center. And um, and we do take referrals from uh outside institutions as well. So uh uh and we welcome those as many as we can. We we do have a growing waiting list. Um, so you know, my hope for the future is that any academic medical institution is going to have a program for Ellers Danlow syndrome that is helpful for patients with these chronic illnesses. Uh, but that's generally how it goes at our institution. We do an initial clinical evaluation for every patient in person, and then every person can be different. So tailoring their treatment needs can come next, whether it's physical therapy, occupational therapy being the most common, and then getting them connected to some of our other specialists who help patients with these disorders.

Dr Andrew Greenland

And in terms of there any sort of um typical psychological um signatures to this condition, or do the mere act of having this condition affects psychology in a certain way? And that's something that you and your teams or your multidisciplinary approaches help with?

Dr Dacre Knight

Yeah, absolutely. So as you can imagine, uh let's just take, for example, we described that long diagnostic odyssey. Someone's going 10 years with unresolved symptoms. I mean, you know, think about any other medical condition being undiagnosed for you know several years, much less 10 years or more. So it's obviously it's going to be it's going to be a huge strain on someone mentally. Um, and then you know, all the stressors that are added to that of you know trying to conduct the their work and you know taking care of families and so forth. So the anxiety just grows. And then it can grow further potentially too, if uh, you know, in best case scenario, they just get misdirection in a clinical visit. At worst case scenario, they're they're suffering from you know clinician-induced trauma by you know the constant gaslighting and and often being told uh that um the condition or symptoms are are just in your head. Um so that's that's anxiety-provoking itself, right? And it really just it's a kind of a snowball effect. So that by the time the patients reach that 10-year mark or more, I mean, we certainly have patients who've gone more many more than 10 years before a diagnosis is made, that that snowball effect has just grown and grown and grown. So there's so it's it's just even more convoluted problem at that time when it comes to our uh on our doorstep. So yeah, I mentioned multidisciplinary approach because there's you know kind of nutritional needs that need to be balanced into this. But as you're alluding to, too, there's certainly mental health support that needs to be added to this because we're now starting to peel back the layers of all the damage that's been done over the preceding years. And so we do work with pain psychologists, we do uh institute all the things that we can apply that help patients kind of you know get back on their feet and you know slowly return to achieving full function.

Dr Andrew Greenland

Thank you. So I know you're doing some really exciting work with AI. Can you want to tell us a little bit about your foray into this field and how you're using it in your work?

Dr Dacre Knight

Yeah, well, you know, we're looking really for any resource for improvement as we can. I think I've painted the picture that there is a big problem at our hands if there are so many patients out there, these are not actually rare diagnoses, and yet patients are still going decades or more without receiving a diagnosis, then what can we possibly do to improve on this, right? Any any resource that we can find is is going to be helpful. So, yes, the research I'm I mentioned is very useful, understanding the science behind it. But what are the kind of the tools that we can equip other clinicians with and even ourselves with to better understand the conditions? So pattern recognition is one. Um understanding the the presentation, the clinical presentation uh is difficult. And this is not something that's solved just by AI alone. Um, but there are uh clinical support tools that can be used for making a diagnosis. And and what we know about this is that you know a physician, you know, has all their wealth of wisdom and and and all the things that they've learned and seen in the years and what they've been studying in medical school and so forth. But if they've simply never seen patients with these conditions, then they don't really know what to look for. We you know, we learn about what we can learn about diseases in medical school reading our textbooks, but seeing it in clinical practice is uh is how it's finally grounded in our minds and and that heuristic that we are able to turn to to um identify the conditions. Uh but if there is a clinical decision support tool that you know, you know, even if a clinician has not seen these cases, can pick up on some of the clues. So pattern recognition is one in the clinic. Now, as far as research goes, uh yes, there are there are other specific things that we want to use this for. So analyzing some of the clinical or what we would call phenotypic data on our patients, so characteristic features on physical exam, uh patient-reported symptoms and co-occurring conditions, and how that may relate to their genetic makeup, their genotype. Um, and so those are large data sets, which uh as we know, AI is very good at doing. So the larger the data, the better. And we have been uh accruing the data since we established our clinic at Mayo Clinic in in 2019, and we have thousands of patients' uh samples and uh reported information on their condition. Um so we're still growing that, but we've already started developing some of the AI models that we can use to sort of elucidate the signals that we want to correlate between uh the molecular and the biochemical composition of someone uh compared to their physical um presentation. So that's that's really a um a great prospect of how we can use AI in improving on this condition.

Dr Andrew Greenland

Very exciting. And I think you also mentioned when we chatted before about voice signatures and how you're using AI for that. Could you maybe walk us through a little bit about how that even works?

Dr Dacre Knight

Yeah, well, uh yeah, we could we can talk about the potential of AI in this field all day because there's really so many gaps still. Um, and and there's a lot of potential with these tools, uh, I believe. And there is, yes, so there is a need for improving the diagnosis. So we mentioned clinical decision support, um, diagnostic tools and pattern recognition. Uh but as I mentioned earlier, too, we don't have a genetic test for the hypermobile type, the most common type of Ellers Damino syndrome. Um, so when it comes to biomarkers and things that we could do, for example, from like a blood sample, we can draw and we can say, oh, your cholesterol is high, right? We've got some pretty good tools for some diseases uh for as far as biomarkers go. For the hypermobile type of EDS, we really have next to nothing. Um, so again, we're looking at really any resource we can find. Um, we have collaborated with a a research group in Toronto who has done some really fantastic work on um understanding signatures of of diabetes. Um this is with a my colleague Jan Fawcett at Click Labs, but uh their work has uh really is uh you know moved the understanding of potential uh tools of like machine learning and and these you know biomarkers and anything that we can use for for diagnostic understanding. And what they did is they essentially used a voice signature model uh to identify diabetes. Now that that sounds like perplexing, and you know, it's it's more more involved than the time we have for today, but it's essentially looking at patients who've been affected by high blood sugar, right? And and as we know, high blood sugar over an extended period of time can affect the small nerves in our body, the small blood vessels, and affect our kidneys, our eyes, and and so forth. Um but lo and behold, it can also affect voice. Um and we wouldn't have known that until we had until Jan and his team had tried that that study. Uh but what we think about then relating to that type of you know technological advancement is that there may be a potential role for the same thing for understanding patterns and voice signatures. Uh using large amount of data and some machine learning tools, can we identify a signal in patients who have connective tissue disorder versus someone who doesn't? There's a I think there's a real biological basis for this. We're just starting that study uh at Mayo Clinic, but um, if you think about you know how the tissue is is formed in our body and how there is hypermobility, there's issues with scarring, there's issues with uh wound healing and things like that, there may very well be some of these differences in vocal signatures too. So that's what we're hoping for. So more to come on that in the future.

Dr Andrew Greenland

Exciting. Lots of excitement. And also um, I think you mentioned about digital twins. I don't know if that's something you can speak to as well in a clinical research setting.

Dr Dacre Knight

Yeah, absolutely. So I have a colleague here at the University of Virginia who's done some really exciting work on digital creating digital twin models uh for education in emergency room. Uh there's you know multiple ways that digital twins can be brought into the field of medicine. And um, you know, certainly education is a key part of that, and also um also for research. Um, so if we don't want to put human subjects at risk of um you know outcomes of research or or trials and things like that, then creating a digital model of a person with a in a specific condition is really the next best thing. It's obviously imperfect, it's not as good as the real thing, uh, but the safety measures are are quite clear that we're talking about a digital personification of a medical condition rather than a person itself. What they've done in the in the emergency room tools is to use the same thing, use these as clinical training for uh uh for ER doctors and and students of emergency medicine uh so that you can you know see what a patient presents like and you know sort of practice your skills um in real time. And that's difficult because you know getting practice in medicine is you know, it comes with some inherent danger. We always um you know want to have it done in a supervised capacity that you know it it limits the harms and things like that. But um there is there is no doubt that the more trained that someone is, the more experienced they are, the the safer um they will be. So getting as much training as possible uh before you know being in a real life scenario in the emergency ward or or wherever is is going to be to the benefit of that clinician and to that patient, of course.

Dr Andrew Greenland

And seeing how quickly things develop in the AI space, I mean, how close do you think we are to these tools actually being used in day-to-day care?

Dr Dacre Knight

Yeah, so it's it's always a little bit tricky to uh you know to predict technological advancements, right? I mean, we have self-driving cars, we have, you know, all of these things that just kind of come up all of a sudden, you know, it's kind of like a uh uh slow and then suddenly. Um but and I and I think honestly, that I think that's the way it's going to be uh observed in medicine is that we're gonna kind of be you know working along, uh going about our business, you know, doing typical training methods and and clinical care. And then and then we're gonna realize that there is this tool that's sitting right in front of us, and like, oh shoot, why not? Let's do it. It's better, it's safer. Um so it's a little bit difficult to say exactly how soon, uh, but I think it's just a matter of a few years that you know we're going to see real change in the clinical practice of day-to-day care. And and I think that is for the better, because I mean, if we're talking about 2026 and we still have conditions going at more than a decade uh before being diagnosed, then there's a huge, huge space for improvement.

Dr Andrew Greenland

Thank you. So now thinking about your work um from a business operational systems perspective, what's I'm going particularly well for you? What are you most proud of in everything that you do?

Dr Dacre Knight

Well, uh reaching the patients who are in need. And uh, you know, as as active as we we were at Mayo Clinic and seeing a huge influx of patients, uh, when I had um relocated to the University of Virginia, I realized that we had hardly even scratched the surface. I mean, at Mayo Clinic, we were taking patients from all over the country. We were taking patients internationally as well. Uh, but you know, setting up shop here in Virginia, we had already had a patient's and uh waiting list in the hundreds, and that's just continued to grow. And so this kind of relates to my vision of hoping that every academic medical institution in the future will have a center for Eller Standler syndromes and connective tissue disorders care specifically. And and so that but that has been rewarding to me is to to meet this huge need. There's a huge unmet need for these conditions. And uh, you know, again, I feel like I'm just barely scratching the surface, but um, you know, constantly I have patients being so grateful, so thankful that that we've come here to do this. So we're kind of just reaching our way up the East Coast, um, but there's there's still a lot more work to be done.

Dr Andrew Greenland

And on the other side of the coin, what are the challenges or bottlenecks that are most impactful to you and your work right now?

Dr Dacre Knight

Well, you know, getting the understanding out there, like I said, um, you know, patients really wouldn't be in these terrible predicaments if if there was a diagnosis that was made sooner, if the if the patterns were recognized earlier on and the care was provided earlier on, even even in childhood potentially, right? So recognizing these conditions that may be affecting children and just kind of teaching them the safe things to do um in in life, avoid injuries and things like that. Now, it doesn't mean avoid sports or athletics or exercise. Those are all very good things to do if they are done carefully and and and seeing to it that someone is not doing the wrong type or you know, having repeated injuries. Um, but you know, getting that in place early on, that is, that is a bit of a bottleneck. And so I find it is a little bit more reasonable to try to educate the incoming classes of medical students uh you know from the bottom up rather than trying to re-educate clinicians from the top down. I mean, yes, we're we're constantly doing continuing education as as clinicians and we're constantly learning. Um, you know, but you know, the longer the years of practice someone has been practicing, the stronger those biases get in place. And there's a lot of biases in in patients with chronic illness. Um, you know, like I mentioned earlier, it's you know, they're often told it's all on their head or your testing is normal, you know, just kind of exercise and it will go away, right? Or just work your way through it. So we need to kind of reframe that thinking. And it is difficult the the longer that someone's been practicing.

Dr Andrew Greenland

So with such a specialized population, what tends to break first when demand increases? Now I know you've been quite proud of the fact you've been able to meet demand, but I guess in other institutions or elsewhere in the country it doesn't. So what tends to fall apart?

Dr Dacre Knight

Well, yeah, and we're doing the best we can to meet the demand. We're certainly uh, I mean, our wait list is growing as fast as we can schedule patients in. So we're trying to grow ourselves or ourselves and we're hiring staff as quickly as we can. Uh, but you know, I I don't think that there's a a major breakdown. I I think that really what it requires is it is just require, I mean, it, you know, I hate to use the cliche, but it's really it requires a team effort, not only that does put multiple disciplines involved, but it requires multiple individuals to be on the same page to understand that you know what we're doing is serving a purpose of a greater good rather than just you know stroking our own egos or just satisfying our own research goals. Uh there is a mission to serve a large number of patients who have previously been underserved. And you know, having multiple people on that same same page on that same playing field is a little bit tricky because you know, if if anyone is kind of you know draws doubt or you know concern about you know the um the whole process and the whole mission of it, then then it can falter pretty easily.

Dr Andrew Greenland

And actually, on the subject of teams, I wanted to ask you so what's been your approach to building a team that can actually support this level of complexity?

Dr Dacre Knight

Well, you know, that that's a great question because uh as I mentioned, we are uh we are actively hiring, and so we're interviewing uh specialists uh almost weekly now for different positions and and and many of them at many different levels of specialty. Um but seeing as these conditions are not very well taught in in medical school, I mean, yes, we get some understanding about you know pain pathology and and um you know mechanisms of pain and things like that, and some autoimmune disease and uh study, but but there's not a a lot, and and a lot of it comes by experience. And so, you know, people get wrapped up in this idea that um you know learning something new is scary or or is is above their ability. And so what we look for are those that are not like you know, so polyannish or so uh overly confident, but we want to find those people that are motivated and interested in learning. And you know, there's some people that are just more curious than others, right? And so we want to find those people that are curious because we don't expect everyone to have great expertise in these conditions. I I was new to it too myself just uh some years ago. And so um I know that it's it is possible to learn and and relearn at any stage of life. And so that's what we're looking for is those that are willing to learn and and and motivated to do that.

Dr Andrew Greenland

Do you think there's a role for um things like group programs, digital tools, or education extending beyond one-to-one consults in this world?

Dr Dacre Knight

Absolutely. Another excellent question because that's something that we were actively working on as well. And that's that is something we did have some success with at Mayo Clinic. And and I'll tell you why. The the issue at hand is that there is such a huge demand. There is a high volume of patients, and there is a in relation to that, a smaller number of healthcare professionals to provide the services needed. Eventually, again, I keep sounding like a broken record on my hope and vision that one day every academic institution will have a place for these patients to go. But in seeing as that there is nothing like that currently at every institution, uh then we need to do what we can to adapt to the needs of the patients as best as we can. So, yes, group programming is is kind of the temporary solution for now. I mean, we want to provide as much one-to-one care as we know. We know you know educational systems are better provided if they're more focused and individualized. And part of the treatment is education. Um and that's the the big first step in treatment is education and and letting patients know about what the condition is and how it affects their body, and ultimately how they can become empowered to manage the conditions themselves. So, in in a in the case where we have difficulty reaching every single patient individually, we can collectively reach a larger number in a group setting. And so uh that's that's the solution that we are we're embarking on for now.

Dr Andrew Greenland

If I was to give you a magic wand, then you could fix one thing in the world in which you work tomorrow. What would that be?

Dr Dacre Knight

Well, you know, I I'm I've got my own biases because I see these conditions so much and so often. So I would say, you know, let's let's magically implant these these the idea of these things being possible in patients with chronic pain and chronic fatigue in every every medical learner and and aspiring doctor. And so right out of the gates that they come prepared to uh meet any patient who comes to them with chronic pain or joint issues with awareness that these may be present. Now, uh having said that, I I know that's a big ass. So I would I would say at the very least, you know, um let's just let's keep our medical students and even and even experienced clinicians motivated to learn and continue to think outside the box, apply the best uses of our technological advances to serve the greater good of our patients, and especially those patients who have gone so long without being diagnosed.

Dr Andrew Greenland

And thinking Bruce had to perhaps the next year or so. Where would you like you, your work, your institutions to be in the next six to 12 months? Anything on the cards, anything you're looking forward to?

Dr Dacre Knight

Yeah, so uh we'll continue to grow our program and we'll continue to develop and apply the AI models and tools that we can uh to serve our patients and to serve the research that's going to benefit patients in the future. And I mean, ultimately we know that you know AI should help us do what all all good clinicians have always tried to do, to listen carefully, uh connect the dots of what they see in their clinic, recognize the pattern, and help the patient move forward and function and hope. And I think we're on the path for that. And I, like I said earlier, I am optimistic about it. We just need to continue on that path.

Dr Andrew Greenland

Thank you. With that, Dako, I'd love to thank you so much for joining us today. It's been a really interesting conversation. Thank you for educating us more on EDS and connective tissue disorders and for giving us your valuable insights and also a sneak preview into the world of AI and how that's going to be impacting things. So thank you so much for joining us. It's been amazing.

Dr Dacre Knight

Yeah, my pleasure as well. Thank you so much for allowing me to be here today.