Autoimmunity and biohacking a path toward health | Mette Dyhrberg on Big Bold Immunity #33

Mette Dyhrberg and Jeffrey Bland discuss autoimmunity and personalized health solutions through MyMe, a company focused on managing autoimmune diseases. They explore how lifestyle and behavioral changes can regulate the immune system and address the challenges of autoimmune disease management.
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A lot of the learnings initially really came from this notion that autoimmunity at the time was seen as these, you know, 80 to 100 different autoimmune diseases based on where the body was being attacked. We were fundamentally asking a different question, which is why.
So welcome to this episode of the Big Bold Immunity podcast. And I'm so excited that this episode is going to be focused on a topic that is, for all of us, right at the forefront of our concern. It has to do with immunity and autoimmune disorders, where the body starts actually being an unfriend to itself and the immune system starts being hostile to our own body. And there is no one better that could speak to this than the founder of a new and extraordinary company called MyMe that's dealing with this problem of autoimmunity and behavioral modifications of people who suffer from that problem. And that's Meta Diaberg. And I'm really excited to have the chance to sit down with her and really talk about her innovation in this important space. So stay tuned. Meta Dieberg and my me. Well, with that introduction, I think now the key is to bring our personality and introduce you to Meta Dienberg, who I think you'll see why she's a remarkable person and why she is quintessential for the kinds of things that we're trying to do with the big Bold Health Personalizing Immunity podcast. So, Meta, thanks so much for joining us. And maybe you can just, as a start, tell us how you got into this interesting transition in your life, in your career, in your focus, because I think it's a wonderful story beyond that of your focus on immunity. So how did you get here?
Yeah, so what now is an interesting story. Felt like a personal nightmare for a long time. I got my first autoimmune condition at 14, spent the first half of my 20s in and out of the ER, in and out of hospitals, and the second half of my 20s, I collected disease labels. So by 30, I had six autoimmune conditions, was, you know, seen numerous doctors, was heavily medicated, but nothing really helped me. And so I was really setting out to be a chronic patient when in my mid-30s, one of my many doctors told me that they had, quote, unquote, great news, and then proceeded to tell me that I wasn't going to die in the, quote, unquote, immediate future. And I remember that moment in time as if it was sort of like everything stood still because I had called my mom in the car on the way there, told her that, you know, Stay tuned. There's going to be good news waiting. And that was actually the hardest part, is like, how do you call your mom and tell her that that's the great news? And so at the time, I asked one question, which was, what are we going to do about my process? And my doctor barely flinched. He looked me straight in the eye and he said, we're happy with your numbers. And I'm an economist by training, and to this day, I'm forever grateful that that's what he answered, because I knew at that moment that he did not know how to help me. And so I walked out of the hospital and called my parents and said, I'm not going back. And clearly today it seems like that was the right move. But at the time, it was disempowered as a patient, but in a way empowered as a human, because I knew I had to get some sort of control. And so, needless to say, I had no idea that I was actually going to be able to find a way out of my situation. But I at least knew that I needed a different way. And so I started with the only thing I knew, which was numbers. And so I started charting everything, journaling. And being an economist, we love Excel spreadsheets, so the first thing you do is you translate them over and then you start, you know, noticing patterns. And I also started seeing that, hey, I needed the metadata, I needed the timestamps. So instead I started texting myself. And then I started adding geolocation so I could see if I was feeling different in the different locations that I spent most of my time. And over a period of five months, I was able to identify and back ravel my cardiac issues. And I had done weekly EKGs, blood thinners, cholesterol lowers. If it was meant for my grandmother, I had done it since I was 24. And so I thought to myself, wow, so many times when they told me about a new autoimmune development, it was because of your cardiac issues. But if I didn't have them underlying, maybe I could just get rid of all of it. And so, to my sort of luck, I didn't know much about health care. Like, actually, I knew nothing of health care. And so I didn't have any of those mechanisms that says this not possible or there is all of these obstacles in your way. I basically just naively applied process optimization to my own body. And by looking at my body as a close circuit computer system, I identified processes that needed to be tweaked, whether that was by identifying triggers that needed to be removed or beneficiary interventions that were to be added. It was really sort of an AB testing process. And 16 months to the date from when I started, I had normalized my blood work, reversed all my disease symptoms and I've been drug and symptom free next month for 10 years. So yeah, that was sort of my entrance point into health care. And needless to say, as an entrepreneur, you fix problems, that's what you do. So when I felt better and I really couldn't wait to just move on, I just started another company. And that was really what I wanted to do. I never intended to go into health care, but I just wanted somebody to see that it was possible. So I showed up with my little computer and said to my doctor's team, look at this. First of all, they weren't really that interested in looking at the data, but they then came to the conclusion that I most likely had not been sick in the first place. And to me that was like the biggest insult of all because I 20 years at the time and with declining health over the entire period. And so at the, you know, I guess as an entrepreneur you make quick decisions. So in my head I thought, I'm a foreigner with a lot of pre existing conditions, my premium is through the roof. So I took out my hand and I said, I'll take that deal. And my doctor goes, what deal? And I said, you just told me it was all in my head, which means that it would go off the ehr, right? And he goes, oh no, no, no, because of your. I had a nonalcoholic fatty liver, I had organ involvement, all sorts of things. He's like, there's no way we can take it off the hr. And I remember thinking, but that's like just. You just shook me. What? And it's the first time I've ever used this expression but like a shit sandwich, like there was absolutely no win for me in this. And so I started thinking about this day and night. And then a couple of months later, Kevin Kelly, who at the time was senior editor at Wired magazine, started something called quantified self, which really was self knowledge through numbers. And so spoke at the very first one in New York and it became family. It was bunch of biohackers that were obsessed about their bodies and about how we could intervene through these, you know, essentially biological experiments on yourself. But there was a fundamental difference in the sense that a lot of them loved data. They were obsessed with this idea of more data. I was obsessed with the idea of asking the right questions and to the outsider, that might be two sides of the same thing. But I think getting more data, if you don't gain more insight is invaluable. And for an autoimmune patient, life is like that rope in gym class. Like, you put it into motion and even when you let go, it just keeps sort of going, and your life will always feel like it's out of your hands. I gave a speech once around how I was a professional boxer because I feel like I'm shadow boxing 24 hours of my life. Nobody tells me when the match is on. But there's definitely going to be a match and you have to be ready for it. But that powerlessness of being a patient is really one of the hardest things to grasp. And your immune system, unfortunately, not always gives you warnings that we as humans know how to read. We have now worked with people for the better part of a decade, and we now can say things like, that little scratch on your throat, that's a 13 hour notification that you're going to go into ketosis, or that little whatever it is, that's actually the sign that you haven't gotten your sleep or you've done a little bit too much of this or that. But getting people that blueprint that allows them to reclaim their health because now they know exactly what works and doesn't work for them, is sort of what we set out to do. And in many ways, you know, autoimmunity, as you know, there's no one size fits all. There's definitely not. Like, if you're a lupus patient, take this little booklet and, you know, follow steps one to 10 and then you'll be fine. It's more sort of a crash course in how do we best read you and what goes into the formation of this disease for you particularly. And it's been a fascinating journey, but it's also been fascinating to see that what I considered within the realm of my control versus what was sort of happening to me in that line has completely moved. Because I know today that whether it's my mood, my intelligence, my gumption, my intuition or intellect, depending on how you look at, actually all comes down to things that I can control. But I just never knew how to read my body that way prior to all of this sort of coming together.
You know, there's so many things that you've touched on that are extraordinarily insightful and important. I want to take a little time to unpack some of these ideas because I think there's a lot of density, in your words, in terms of information that individuals can value from. So the first thing that hits me obviously is you are the quintessential citizen scientist. And, and you know, we have a move that's occurring in the country right now of people partly as a consequence, maybe of the open nature of information shared on the Internet. Now people are taking looks at themselves using a different lens than they used to and less accepting what people tell them and more interested in finding out for themselves that citizen scientist concept. And you know, this biohacker movement and the quantified self movement that you, you talked about, Michael Schneider at Stanford, who is one of the leaders in the medical world on this. These are places where people can self recruit. It takes a certain type of courage to do that though, and it takes a certain type of motivation. But not everybody that has an autoimmune disease maybe is motivated. So I think when you put Miami together as a company, that allows your motivation then to be spread over others who may be not quite able to manifest the same degree of vigilance and initiative you did, it sets the opportunity then for the group process to share this quantified self principle across many, many others. And I think what you're starting to see with my ME is making this more accessible, your learning curve, which not everybody can probably incorporate within their lives. You've made it. You kind of pioneered the way to make it more easy to be implemented for others in the MI me. So you might tell us how then your experience then transitioned into formation of Miami as a way to generalize this for other individuals.
Yeah, so I think a lot of the learnings initially really came from this notion that autoimmunity at the time was seen as these 80 to 100 different autoimmune diseases based on where the body was being attacked. We were fundamentally asking a different question, which was why? And so as we were starting to unravel sort of the underlying issues for why people's systems were overreacting and attacking themselves, we started seeing patterns that were more to the fact that just because you have a complicated problem, it doesn't necessarily mean you need a complicated solution. So we really started simplifying things and continuously honing in on what would be sort of the lowest hanging fruit. What is that little thing that you can do that might do a little bit of a difference, but for somebody who hasn't felt like themselves for decades, in some cases, anything that can bring them just a tad bit closer to who they used to be, they'll trust. So from our Perspective. It came down to understanding how can we make somebody feel a benefit in their life. And when I say benefit, I don't mean something that gets measured in blood work or something that they can see next month on their lab report, but really a benefit. You can go and pick up your kids from school, you can cook dinner. You would not believe how many women are lying around in bed dreaming of cleaning their house. You'd think people had different aspirations. But I think we all want to be useful. We want to play a role in our family's life. And so what we understood very early on was we needed to make it super easy. And so we needed to make it matter. And in order for something to matter, it has to be something that you can deeply relate to. So one of the things that early on was a big item in sort of like the self tracking movement was how depressed are you from one to five? And if you're depressed all the time, you're actually just getting more depressed. And so we were very early, very aware that we needed to find ways to help people that didn't actually focus on their shortcomings, but really focus on their wins. And to this day, every coach call that is internally happening at Miami, start with client wins, because that's what we fuel ourselves with. And that would refuel the clients with is actually understanding how can we make you win this game of you because you can feel like yourself again. And so that was really the most important part. And some of the technology that we've implemented today is patents around translational. So we don't use medical language, we translate it into your language. And we did a study with Cornell and chronic pain recently, and I think it's such a good example because they wanted mild, moderate, severe pain. And some people had been in car crashes and some people had ra and you're like, okay, this is apples and pears. But when you actually spend a little bit of time with the individual, the person with RA will say, achy joints, mobility issues, I can't get out of bed. And to that individual, I've never met anyone who didn't know when they could get out of bed. So it's very precise. But it also means that you can take out your phone, press a topic, and you're done. So it only takes a couple of minutes a day to use Miami, which is really the equivalent of what it takes to use an electric toothbrush. And we see ourselves a little bit like that, that we are an adjunct therapy. So for a rheumatologist or gastroenterologist we are what the electric toothbrush is to the dentist. We are sort of that intervention that can help people provide some self care that they might have dreamed of, but they couldn't pinpoint exactly what that looked like for them.
Yeah. See what you're saying there is a brilliant. And this is where the genius of people's creativity starts to demonstrate itself. What you're saying is you can help a person become their own citizen scientist about their own body through very small iterative steps that have to do with taking information in and being conscious about how you're recording your daily experience. And that journaling, that kind of acknowledging how your day is going and how it connects to things around you is such a powerful concept, but it needs to be made very simple and kind of effortless. Like maybe your analogy with the electric toothbrush to make proper oral hygiene more practical. And I think that this construct that you've developed, it reminds me of an experience that I had that was actually a frame shifting experience when I was running the Function Medicine Clinical Research center in, in Gig Harbor, Washington. And one day one of our physicians came into my office in the morning and he was quite upset, Dr. Jack Kornberg. And he dropped the local newspaper on my desk and he said, I am really disgusted. Look at this article in the newspaper. It was on the COVID of the second section in the newspaper and it was a photograph of a pair of hands, and in the hands were a whole series of pills. And the story was about a woman who had this unique autoimmune condition, erythromyalgia, in which she was being treated at a local medical school hospital by top rheumatologists. And she was still at a fairly young age, mother of four children, pretty much incapacitated. And she was saying that, you know, this was very discouraging for her, that she was taking all these medications that were managing her symptoms, but her symptoms were still very, very severe and she was pretty much disabled. And so Dr. Kornberg said to me, says, you know, Jeff, we can help this woman. And I said, well, Jack, you know, what do we know about this specific form of autoimmune disease, erythromylgia? It's not that common. And he said, well, I don't think we know, we're not a specialist in that condition, but we know a lot about what it is that people have happen in their lives that creates a disturbance in their immune system that translates into these diseases. Just like you were saying, Mehta, it's not disease centric. It's environment centric and how that person's genes connect to their lifestyle and their environment. And he said, I think we can help this woman. And I said, well, what would you propose? He said, I would propose it that I call her up and say if she would like to come in to be one of our research subjects, you know, she would still see her traditional physician at the medical school and so forth, but we might be able to provide adjunctive help. So that started this relationship with her. Anita, I'll call her. And I recall the first time that she came in with her husband and parked in our parking lot, because the parking lot was right in front of my office. I could see her coming in, very labored, walking with him, helping her into our office. And the bottom line, I'll just cut through the story. A year later, after being involved in management by our clinical team, including Dr. Deanna Minick and Dr. Jack Kornberg and Barb Shiltz and others in our clinic. Clinic. This same woman who had three wishes when she came to us. Wish number one is that she could stand at her kitchen counter and produce a meal for her children, which she couldn't do because she couldn't stand long enough to do that. Number two, that she could go out in the spring and plant her garden. She hadn't been able to go outside successfully for some time. And number three, that she could go to the mall and walk the mall with her kids and get some new shoes. Those were her three wishes that seemed pretty simple, but for her, they were probably very, very challenging.
Blue sky is very different depending on where you're looking at the sky from.
That's exactly right. And so what happened was a little over a year later, actually it was about a year, about 15 months later. Not only had she by that time succeeded in achieving those three wishes, we called them her magic wand wishes. But actually the most remarkable thing was that she came in with her husband. This would have been June, so the starting of the summer season. And now she's walking briskly, not needing assistance, and she has something in her hands, in her arms, that she has wrapped up. It's a gift she wants to give Dr. Kornberg and Dr. Minick. And when it's opened up, it's a large framed photograph of her at the top of Mount Si, which is a fairly significant sized mountain outside of Seattle, Washington. There is a trail that goes to the top. It's pretty steep. And here she is at the top of Mount Si, having gone up there with her family by her, you know, on her own power, holding up a sign saying, thank you, Dr. Jack, Indiana. And you know, it brought tears to the whole clinical staff, all of us. But it was an example of exactly what you're saying. And by that time she had pretty much discontinued all of these medications that she was holding in her hands at the beginning of this whole thing. She was, I think, almost completely pharmacy free by that time and in self regulated. So that made me an absolute believer of what you're saying. And it was all part of her engaging in her own ownership of her health and learning the tools that were required, the things that you're talking about that you have so personally successfully implemented but now have generalized that and making accessible so many others. So I just want to say, say we champion what you've done. And it is, to me, it will not take away every case of autoimmune in the country. Autoimmune disease in the country. But this concept that you're pioneering can significantly help restore people's immune ownership, ownership of their immune system, and start to tame that immune system that's kind of gone rogue and fighting back.
No. And I also think like to your point, people come in and they have these seemingly small dreams, whether it's cooking or cleaning or other things. Once they come out on the other side, nobody talks about their health anymore. So 4 out of 10 people on long term disability go back to work after Miami. And so one of the things that we get is these letters from women saying, thank you so much, I can now buy new sneakers for my teenage sons or because health is something we take for granted unless we don't have it right. So I think to a large extent what is interesting here is that autoimmunity has been seen as this very fragmented thing, but we've actually today been able to reverse disease symptoms for 67 of the 88 different autoimmune diseases. So there is more to when you sort of think of healthcare generally, you have like the median, and this is how we like it, one solution. And then you take the outliers away because they sort of mark the picture up. But imagine that you saw a thousand outliers. They're going to look a lot more alike than different. And so at some point you start being able to use that n of 1 when you have enough of them placed next to each other, you start getting insights that allow for you to get there faster. And so for us, that means that we can now in medical literature, read certain things. But when I look at the data, we're getting out of the patients, we get insights that we can't even find anywhere on the Internet or elsewhere. And that's what's fascinating to me because I think that we've gotten an enormous amount of the way with sort of the traditional metrics of health. But when you go to your doctor, it's sort of a snapshot in time, whether it's lab work or otherwise. But we live our lives between those doctors visits and that's actually when the roller coaster is happening. And so for us initially, it really comes down to being able to help people understand what goes into these things. You know, we have so many people that go on these 60 milligram prednisone stints every four to eight weeks. And as you can imagine, back to sort of that rope that you get into motion, that means your body is never in your control. It's always sort of going like that and getting that sense of control where you are actually the one who's able to be in the driver's seat of your own life. That's what we want to do.
Yeah, I think that that is so powerful. And this concept of can we own our immune system? And we say, well that's a, you know, come on. I mean it's our immune system, of course we own it. But I'm talking about our self regulation of our immune system. Not allowing the immune system to kind of run wild, but to say let us be friends with our immune system and create the environment that that immune system needs to be harnessed in a way that produces outcome called good immune defense without injury or I guess a collateral damage to our own body, which is what we see with an immune system that's over responding or hyper responding to its environment. And so it's making our immune system into our friend basically. And you do that so beautifully.
And I think that's actually maybe I should even explain what it consists of because the Miami program is a clinically validated protocol that has been proven to reduce disease symptoms in more than 90% of our members. But when it really comes down to is a very basic approach that consists of three key elements. First, this easy to use mobile app with this snap to track feature. So whether you take a picture of what you eat or it's a runny nose or joint pain, it's tailored to you. So you tap and that's it. But then we take your body signaling and we turn that noise into understanding by pinpointing the causality between what you do and how it affects your symptoms using Proprietary technology. And to your point, earlier studies have shown that 80% of the immune system comes down to determined by lifestyle and environment. Right. So last but not least, we take certified health coaches are the ones leading the process and they've all reversed their own autoimmune disease so they truly know what it means to walk in your shoes. And they can translate these machine insights into a personalized plan. So through these weekly one on one sessions, they will help you avoid triggers, but through these small, doable changes that are made over time. So Miami's technology can identify triggers in as little as eight weeks, whereas the traditional approach can take years. And I think that's the key, is that we're able to actually, through these very small things, be able to make a big ding in people's lives.
Yeah, I know that you are. I've seen the results with people that your program has delivered. It's absolutely spectacular. And in fact, you might want to even mention you've got some colleagues now in your medical side of your consulting and work who have leadership in their own respects, who have had their own personal experience that, as you said, there's nothing like personal experience to make you a believer and to make you a good coach and guide. And I'm thinking of two of your colleagues who are just remarkable leaders in their field, whose own experience they brought in and are making them even better teachers within your program.
Yeah, no, it's true. I'm also thinking about Dr. Nicole Bundy, who went through your Functionality Institute of Medicine. Because when, when I originally I got introduced to her through Nate at Cleveland Clinic. And I had been looking for a chief medical officer for a while at the time, and nobody really fit the bill. And Nate called me, he goes, I just met someone, I think, I think it's the right person. And within 45 minutes of talking to Nikki, I was like, wow, she has exactly that combination that we need because she's a traditionally trained Yale rheumatologist. But she had encountered her own autoimmune journey and realized that what she was offering for her clients wouldn't help her. And so went down sort of the path of exploration, went through the Institute of Functional Medicine, really went through a lot of sort of the work that needs to be done to really understand what it takes. And when she came into Miami, I think we all forgot how much we actually knew at the time because I think she came in thinking that, oh, this was going to be sort of a continuation of what she already knew. And it took a while to sort of Wrap your head around a completely different world. But oh my, has she. And it's been also fascinating to see how even her, with all of the knowledge that she's had in her personal journey that she's been able to, through the use of having somebody else sort of pinpoint your blind spots, could get to that equilibrium where your disease is non existing in your day to day. Does that mean we don't have our diagnosis labels? No, but there's a big difference between being symptom free versus managed. Because I think that's where a lot of us felt like it didn't really do what we were hoping to.
Yeah, I think that that's really, really an important differentiation. Manage means, maybe support symptoms while the condition is still moving forward versus the upstream kind of intervention that's really treating the downstream signals without having to block the signals. You're just influencing the system in such a way that the immune system is at rest. And I think that that is really a very big payoff. And Dr. Bundy, by the way, Nicole Bundy, is just a remarkable example of a high level professional at the seat of high academic medicine at Yale and a board certified rheumatologist who through personal experience and an open mind, and I think that's another thing. You have to have an open mind, open spirit to look at what alternatives might actually be accessible to you and be willing to accept those and not push them away just because your training might have said something else. And to watch her take her extraordinary training and background and expertise and then convert it into this model and bridge the gap between these two worlds very successfully is I think exemplary as well as kind of a great role model for all of us. And I actually think of another person you're familiar with that has done this and is a pioneer in our field, Dr. Terry Wahls. And I can remember when Dr. Wahls, I think first came to a seminar I was, was giving many years ago on autoimmunity. And I believe at that point she was in a wheelchair. And you know, we look at where she is now at this very high performing leader in our field with this whole concept of how to manage Ms. And other neuromuscular autoimmune conditions. We know it works, we can see it in her, we can see it in the impact that she's had on the field. So there is some truth in all of this that for some reason hasn't yet been projected into the body politic of traditional interventional medicine. And I don't know exactly why that is, but I really celebrate people like yourself who are proving that this model is more than just talk. It really delivers value to people. Why do you think there's been a resistance in the traditional medicine, medical world to accept some of these concepts as being real?
It's too good to be true. The reality is when you are sick, you get into a smaller and smaller world and you're told that this is the only thing we can do for you. And then you get like a prescription or something. And for every single. I always talk about the hope bank. When you start out with a big fat hope bank and for everything that you try that doesn't work, your world sort of shrinks. And at the end, very few people actually believe that anything will work. And so when you tell them that simple things they do on an everyday basis could be the reason, there's two things in play. One, it can't be that simple. And for many also, they can't live with the fact they did it to themselves. And if you think about that, it makes complete sense at a human behavior level. But it doesn't really explain why we're so resistant to new. I don't know if we would call them new, what the word is for what we do actually. But the reality is that I think that we are seeing a tremendous shift with COVID and with the world sort of being in a very different place today than it has ever been. People are more aware of their sort of silent body state, needing to be stronger than ever before. And having worked a lot with the COVID long haulers in this past year, for many it's an acceleration of a pre autoimmune condition that was dormant. And it's been fascinating for us, obviously, from a research perspective, sometimes you're almost sad to say, but some of these things can be extremely helpful, right, because we staged autoimmunity early on. So similar to cancer from 0 to 4, where a positive ANA, but still asymptomatic is state 0, then you become symptomatic, but you're pre clinical, you're stage one. And then once you get your first clinical diagnosis, your stage two multifactorial, you're stage three. And once you have organ involvement or failure, then you're in stage four. But it allowed for us to say, somebody walking in with 30% kidney function at stage four, we could pull back to stage two. And it allows for us from a research perspective to be really clear in our communication around where people were and where they landed. But to be fair, people don't sign up for things like Miami, unless they're in that stage two to four. So we had a very good foundational piece in sort of the latter part of, but we didn't have a lot in the pre autoimmune. And so with COVID when Mount Sinai reached out to us in May of last year, we really got that front end of our autoimmune spectrum. And so for us now we know exactly that the order of events is exactly as we had predicted, but we didn't have enough bodies through before to prove it. So Covid has really helped a lot of the autoimmune patients that we see get to a faster result because we now know the stacking order.
Yeah, I think that this long haul Covid is a transforming event in our culture right now. And I just read this New England Journal of Medicine kind of review about really the impact that this is going to have on the whole healthcare system as we move forward. Forward was something like maybe 15 million people having different degrees of frequency, duration and intensity of long Covid symptoms. And if you think of that, those people entering into our healthcare system in which there is really no good way with traditional drug based pharmacotherapy to manage the complexity of these conditions that are varied in their presentation, it's going to require an entirely different model. And this model that you developed and are pioneering is a model that can deal with the complexity of how these immune dysfunctions, I call them immune scars, that come as a result of a SARS CoV2 infection, how they can be healed. And I think that your model is a model that's more focused on the, what I call the upstream caused in the downstream symptoms. Because if you're trying to chase the elusive symptoms with drugs to treat each symptom, you're never going to be successful in managing the complexity of the long haul Covid symptoms. So I think you've really got your arms around something that is at the right time, the right place and the right need.
No, there's no doubt that when we're looking at the world through this lens of simplicity, then all of a sudden a lot of things are possible that weren't possible before. And I think one of the things that I sometimes think about is when we're thinking about this sort of digital evolution, traditionally it was diabetes, right? It made sense because you go to hospital, diabetes didn't really belong anywhere. It was in every department they were seeing diabetes. And there's a known causality. BMI, insulin, A1C. So it made for the perfect first sort of Technology endeavor you could translate into technology, prove out results because there's clear causalities and the noise was easy to read with all the dexcoms and whatever was available. But what we're doing is really sort of a new frontier in health where you take a disease space where there's no known causality and then you apply technology to understand what is it actually that's going on here. And you know, having had years of experience in doing that with autoimmunity was really what allowed for us to so fast get results with the COVID long haulers. And I think that's to your point around what is the challenges we're going to be seeing in the healthcare system? It's not necessarily going to be more, you know, medicine or other. There's probably lots of great things that can be developed over the years. What I see as our biggest challenge is that behavioral health has not been something that we've ever really trained doctors in doing. And so how do we bridge that gap? Because people are being sick from things they do between doctor's visits and it's hard to manage that expectation in short visits.
Yeah, I really want to again just admire and acknowledge what you're saying. I think it is so powerful that often we try to seek out a simple answer to complex questions and we then reduce that question down to a point where the answer is simple but not right. And you know, this pharmacotherapy model that we've had, which is one drug for one disease, that's kind of the way that modern pharmacology emerged out of the age of antibiotics. We have a specific bug that we're infected with for which there is a specific molecule that will prevent it from growing without killing any other cells of the host that is us. So that was the model that started this whole pharmacotherapy approach towards treatment, treatment of disease. When we get the complexity of these immunological problems in which we don't even actually know how that disease was caused. It may or may not have something to do with an organism, but it's probably not just one causal factor. It's not genetic. And in fact there are very low linkages of our genes to autoimmune disease. So it's a low penetrance of genetic risk. So then it's a kind of a mystery of what its source is. It shows multiple symptoms on its outcome. It's not like a single symptom. And then we're trying to treat it with one drug. Well, you know, that just is not working. That model Just does not work. And in fact, I think the pharmaceutical industry is starting to recognize it in some complex disorders. Like look at what's happened with the treatment of hepatitis. Now it wasn't one drug, one molecule that treated, now it's a combination of molecules. Similarly with hiv, aids, it's a multiple portfolio of drugs. And it's not just one drug. So we're starting to recognize these complex conditions require complex intervention. And there's nothing more complex than lifestyle. You call it behavioral medicine or behavioral health. And how do we adjust then that individual's own decisions as to how they live, where they live, and with whom they live in such a way that it will give their immune system the optimal opportunity to speak friendly to them and not be in a state of alarm, which is what we call autoimmunity. So I think that what you're birthing here is conceptually a very, very different model than the one drug, one disease model that many of us grew up in, in our education.
No, that's spot on. Thank you. Yeah, I think it's from my perspective, as we are sort of taking this journey, I think we from the very beginning looked at this space thinking it's 80% women, it's women of color, it's women of low wealth. It needs to be that we create something that's affordable and scalable so that a rheumatoid doctor sitting somewhere can actually recommend it. And so from our perspective right now, most of our clients are self paying, which is obviously not where we would love to land. But when it comes to the payers, we can actually now see that out of the clients coming through Miami, 33% stopped taking specialty pharma medication. And initially we were getting some pushback around like, what are you doing? And we were like, we're not a physician practice. We do not touch medication. If anyone talks about medication, they refer to their physicians. It is not our space, but it makes sense because even after you're diagnosed, medication fails three out of four. So if you're taking medication and have no other alternative, you're probably going to continue taking it. But if at some point you feel better, your blood work normalizes, your symptoms go away, of course your doctor is going to take you off something that doesn't work. The reality is that today we are basically throwing these blanket solutions onto a problem because it's all we have. And so I think what, what becomes interesting in the future is when we start actually acknowledging that we can't afford to look at the world through that lens anymore. We had one in our parents. Generation one in 400 was impacted by this condition. In ours, it's one in five. And if we just like pause there, like, there's something completely wrong in one generation going from that magnitude to 1 in 5. And that's before we start counting the spike that will be coming as a result of COVID Right. We all know that viruses and infections have been the largest trigger of autoimmunity, but we've never had a situation where it was 100 million Americans that got infected. So simultaneously. And as much as it sort of informs the geek in us for research purposes, it's a human tragedy and we need to have a lot of compassion for those that are impacted. It's terrifying to be in a position where you wake up one day and then the world as you know it is no longer standing. And when we started working with COVID it was actually an interesting little anecdote. But we always draw baseline, of course, and when you look at the baseline symptomology of an autoimmune patient and then a Covid long hauler, it's almost 100% overlap in symptomology. But the severity of a covert long hauler was like triple. And we were a little bit cautious and, oh, are we getting into something that might be out of our hands here? But what very quickly realized was that the autoimmune patients had been slow boiling. It's sort of like that frog analogy where you get thrown into cold water versus hot water. But they had been slow boiling for a couple of decades, so they had gotten used to it. Whereas the COVID long hauler had gotten all of the symptoms literally overnight. And so they couldn't manage their disease. They were still so overwhelmed by every single symptom. But as you actually sort of calm that response down, they were exactly the same. It was just the perceived feeling of where they were that was so different. And it really is. One of the things that I think is most fascinating about healthcare in the years to come is we very poor reporting, like, poor reporting. To your point, around the woman who wanted to cook and so on. We had a client once that she was on 27 drugs. She could work four hours at a time at Walmart, only a couple of shifts a week. She was the breadwinner of her family. You know, her life was really not ideal in any way, form or shape. She ended up after this, I think she was only 12 weeks in when she got a full time job. So now she could provide for her family. She was able to pick up her kids, which she had never been able to do despite them actually having a progressed age, completely had a turnaround, do her laundry, go down the street and do her girlfriend's laundry. And I thought, this is going to be the best test case ever. And she had a 38% increase in physical activity. And I saw that number and I just got so angry. And my medical team was like, meta, this is an amazing improvement. I'm like, are you kidding me? She had like 220% improvement in her quality. The way that these metrics are is if you've been sick for 10 years, you're never going to tick that box of never because just three months ago you remember it. Still, I think that where technology becomes the most interesting across all of healthcare is when we can start getting a much more nuanced picture for our perspective. One of the biggest things that I'm still horrified at today is we used to have a patient population we called non compliant. Today we compassionately call them brain fog. We didn't even think about the fact the reason they couldn't do what they were supposed to do was because they didn't even know how to name their husband. Right.
Yeah.
What doing was analyzing text patterns so that we can see is this someone who's struggling at that level where we can't ask them to do the basics and then you can pare it back and get them to a place where you can sort of overcome that hurdle before you get into the next portion. But I think that's where we really need. I know we all talk about these digital biomarkers, but I think those biomarkers is going to be what's going to be game changing more than anything else we're going to do in the coming years.
I think you just so beautifully articulated your genius and how that has guided and informed the development of Miami. That was absolutely brilliant what you just said. And as you're speaking, I'm reminded of the alternative approach, the pharmaceutical approach to autoimmune disease, in which the drugs that are used generally to treat these diseases are immunosuppressive drugs. What they do is they put a blanket over the immune system and there are places obviously where the symptoms will be significantly improved. But it also opens up the risk that your immune system is now so suppressed that you are now susceptible to things that normally your immune system would fight off. And so now you see black box warnings on these drugs, like you might get TB or you might get get lymphoma, even as a consequence of your immune system being suppressed. And then I asked the question, okay, what do we know about the clinical outcome of these drugs that are used to manage these complex autoimmune disease? And the way that we study outcome is we say, what's the intent to treat how many people? What is the number that you need to treat to get a really positive outcome? And when I started looking at that, I was actually very disillusioned because it turns out that the number to treat, to get a positive outcome in these highly expensive, sometimes these biologics for the treatment of autoimmune disease are tens of thousands of dollars of treatment cost. And if you look at the number of patients you have to treat to get a really positive outcome, it could be as many as 15 patients, 15 people with, with that diagnosis to get one really positive outcome. Now, how do you know if you're one of the people that got a positive outcome or not? And whether that money is well spent for your treatment versus something that might be able to be much less expensive, would actually get you engaged in your own healing of your immune system and would not suppress your immune system and lead you to a positive outcome? And then, and that's what you're really speaking to is this different model that you've incorporated within my me. So I just want to applaud and thank you for your pioneering work and your colleagues and how this is opening up a thought process, not just only an approach, but a thought process about how we manage these complex conditions that are associated with a changing environment. We're now living in a changing social structure and how we're going to deal with those without just finding the drug of the week to try to treat the symptoms. But look at the upstream ways that we can manage a person's life to become a friend with their own immune system. And I think that's what you're pioneering and I have a great amount of respect for what you've done. So on behalf of all of our Big bowl health podcast viewers and the many, many thousands of people that you're positive impacting their quality of life, thanks so much for sharing this extraordinary story with us today.
Thank you so much, Jeff. Always a pleasure.
You be well.
Thank you.
Talk to you soon. Bye bye.
Sam.










