Dr. Jeff Bland:
Well, here I am again, in this extraordinarily exciting opportunity to talk with one of the true thought leaders in our field around this whole topic of immunity. And one has asked me the question, with a podcast, what are the criteria used to select these extraordinary personalities that you interview? And I’d have to say the criteria is to find the most remarkable people who are pace-setters, that see the world in unique ways, that I know, and try to allow them to tell their story. Because there are just amazing people out in this world whose voices and whose insights can transform the health and wellbeing of, literally, millions of people. And I’m fortunate that one of those individuals in that portfolio of criteria is our interviewee of today, and that’s Mette Dyhrberg. So let me just say a couple of words about this extraordinary woman. She is multi-talented, and she has a very strong background in economics and a very strong background in high-level business planning, and then she encountered her own life experience. As they say, life is what happens in between our plans.
And her life experience, that she will tell you about, transformed a lot of her thinking about where she wanted to put her energy and her creativity and her insight, which might be a very, very different place than you would see on her biography, as it relates to her academic background or her resume. But because talented people have multiple ways that they can express their talents, so it was with Mette Dyhrberg and the development of this company, Mymee. M-Y-M-E-E. Which she will tell you about, which I think is a really amazing pace-leading company in the field of immunity and this concept of how immunity transitions itself in the public ID, how it actually can become part of what we all think, act, and do to improve our immune system function, I think is the challenge of the 21st century. And Mymee and its leadership, through Mette Dyhrberg, is advancing this question, this challenge, this opportunity in a very unique way.
Well with that introduction, I think now the key is to bring our personality and introduce you to Mette Dyhrberg 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 Big Bold Health Personalized Immunity Podcast. So Mette, 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, 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 and 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 seeing 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 “great news” and then proceeded to tell me that I wasn’t going to die in the “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 stay tuned, there’s going to be good news waiting.
And that was actually the hardest part is 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 finished. 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 noticing patterns. And I also started seeing that, hey, I needed the meta data, 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 to my grandmother, I had done it since I was 24. And so I thought to myself wow, it’s 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 healthcare. Actually I knew nothing of healthcare. And so I didn’t have any of those mechanisms that says this is 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 opposed to like a 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 A/B 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, 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. And 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’m home there for 20 years at the time and with declining health over the entire period. And so at the… I guess as an entrepreneur, you make quick decisions. So in my head I thought I’m a foreigner with a lot of preexisting conditions. My premium is through the roof. So I took out my hand and I said I’ll take that deal. And the 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 non-alcoholic fatty liver, I had organ involvement, all sorts of things. He’s like there’s no way we can take it off the EHR. And I remember thinking that’s like just the… You just showed me what? And it’s the first time I’ve ever used this expression, but like a shit sandwich. 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 I spoke at the very first one in New York and it became family. It was a bunch of biohackers that were obsessed about their bodies and about how we could intervene through these in essentially biological experiments on yourself. But there was some fundamental different 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 outside of 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. 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, working with people for the better part of a decade, and we now can say things like that little scratch on his 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 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, autoimmunity as you know, there’s no one size fits all. It’s definitely not like if you’re a lupus patient, take this little booklet and 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 it, it actually always come down to things that I can control, but I just never, never knew how to read my body that way prior to all of this sort of coming together.
Dr. Jeff Bland:
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 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 this biohacker movement and the quantified-self movement that you talked about, Michael Snyder 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 auto-immune disease maybe is motivated. So I think when you put my need 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 Mymee 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 Mymee. So you might tell us how then your experience then transitioned into formation of Mymee 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 is 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 to tap it 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 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 from their lab report, but really a benefit. You can go and pick up your kids from school, you can cook dinner, and you would not believe how many women are lying around in bed dreaming of cleaning the house. You think people have 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’ve 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 the self-tracking movement was how depressed are you from one to five? And if you’re like depressed all the time, you’re actually just getting more depressed. And so we were very early, very sort of 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 Mymee start with client wins because that’s what we fuel ourselves with and that’s what we fuel the clients 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 have 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 Mymee, 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, so gastroenterologist, we are what the electric tooth toothbrush is to the dentist. We are sort of that intervention that can help people provide some self care that they might have dreamed off, but they couldn’t pinpoint exactly what that looked like for them.
Dr. Jeff Bland:
Yeah. I see it. What you’re saying there is 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 a 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 frameshifting experience when I was running the Functional Medicine Clinical Research Center 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 said I’m really disgusted. Look at this article in the newspaper. It was on the cover 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, erythromelalgia, in which she was being treated at a local medical school hospital by top rheumatologists. And she was still at a fairly young age, a mother of four children, pretty much incapacitated. And she was saying that this was a 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, he says, Jeff, we can help this woman. And I said well, Jack what do we know about this specific form of autoimmune disease, erythromelalgia? 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, that 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, what would you propose? He said I would propose it that I call her up and see if she would like to come in to be one of our research subjects. 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 that 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 Minich and Dr. Jack Kornberg and Barb Schiltz and others in our 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. It 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.
Dr. Jeff Bland:
That’s exactly right. And so what happened was a little over a year later… Oh, actually it was 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 and her arms that she has and wrapped up. It’s a gift she wants to give Dr. Kornberg and Dr. Minich. 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 on her own power, holding up a sign saying thank you Dr. Jack and Deanna.
And 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 self-regulated. So that made me an absolute believer of what you’re saying. And it was all part of her engaging in 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 it accessible to so many others. So I just want to 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 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 the health anymore. So four out of 10 people on long-term disability go back to work after Mymee. 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. 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.
When you sort of think of health care, 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, but imagine that you saw 1,000 outliers. They’re going to look lot more alike than different. And so at some point, you start being able to use that N-of-one, 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 that 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, the 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 doctor’s visits. And that’s actually when the rollercoaster is happening. And so for us initially, it really comes down to being able to help people understand what goes into these things. 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.
Dr. Jeff Bland:
Yeah. I think that that is so powerful and this concept of can we own our immune system? And we say, well, that’s… 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 your 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 Mymee program, it’s a clinically validated protocol that has been proven to reduce the disease symptoms in more than 90% of our members. But what it really comes down to is a very basic approach that consists of three key elements. First, this easy-to-use mobile app with the 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 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 been 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 Mymee’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 thing in people’s lives. And, yeah.
Dr. Jeff Bland:
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, some 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 Functional Institute of Medicine, because 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 and he goes I just met someone. 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 in…
And when she came into Mymee, I think we all forgot how much we actually knew at the time, because I think she came in thinking that oh, this is 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.
Dr. Jeff Bland:
Yeah. I think that that’s really, really of an important differentiation. Manage means maybe suppressing 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 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 giving many years ago on autoimmunity, and I believe at that point she was in a wheelchair. And we look at where she is now as 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 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 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 are told that this is the only thing we can do for you and then you get 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 will 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 are so resistant to new and, I don’t know if we would call the 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 dorment, and it’s been fascinating for us, obviously from 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 zero to four, where a positive A&A but still asymptomatic is a state zero. Then you become symptomatic, but you’re preclinical in stage one.
And then once you get your first clinical diagnosis, you’re stage two. Multifactorial, 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, stage four, we could pull back to a 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 Mymee 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, 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.
Dr. Jeff Bland:
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 with 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. They 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-CoV-2 infection, how they can be healed.
And I think that your model is a model that’s more focused in on the, what I call the upstream cause and 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 are looking at the world for 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 are 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 it into technology, prove out results because there’s clear casualties and the noise was easy to read with all the death comes and whatever was available.
But what we are 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 having had years of experience in doing that with all the immunity was really what allowed for us to so first get results with the COVID long hauls. And I think that’s, to your point around what is the challenges we’ve going to be seeing in the healthcare system. It’s not necessarily going to be more medicine or other or all by there’s probably lots of great things that can be developed over the years. What I see as our biggest challenge is that behavior 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 doctors’ visits and it’s hard to manage that expectation in short visits.
Dr. Jeff Bland:
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 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 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 a single symptom. And then we’re trying to treat it with one drug. Well, 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 where complex intervention. And there’s nothing more complex than lifestyle. We 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, and 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 paid, 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 Mymee, 33% stop to taking specialty pharma medication.
And initially, we were getting some pushback around like what are you doing? And we were like we are not a physician practice. We do not touch medication. If anyone talks about medication, they’re referred 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 are 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’s 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 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 by this condition. In ours, it’s one in five. And if you just pause there, there’s something completely wrong in one generation going from that magnitude to one in five. And that’s before we start counting the spike that will be coming as a result of COVID life. 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 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 so 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 COVID 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 we very quickly realized was that the autoimmune patients had been slow boiling, 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 so, so overwhelmed by every single symptom.
But as you actually sort of calmed 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 faked very poor reporting. 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. 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. She 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 Mette, this is an amazing improvement. I’m like are you kidding me? She had had like 220% improvement in her quality of life, but 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. So I think that where technology becomes the most interesting across all of health care 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.
Dr. Jeff Bland:
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.
Dr. Jeff Bland:
So 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 pair 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 and 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 are going to do in the coming years.
Dr. Jeff Bland:
I think you just so beautifully articulated your genius and how that has guided and informed the development of Mymee. That was absolutely brilliant, what you just said. And I’m, 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 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 lymphoma even as a consequence of your immune system being suppressed.
And then I ask the question, okay, what do we know about the clinical outcome of these drugs that are used to manage these complex autoimmune? 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. Fifteen people 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 system and lead you to a positive outcome? And that’s what you’re really speaking to is this different model that you’ve incorporated within Mymee. 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 met 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 Bold Health podcast viewers and the many, many thousands of people that you’re positive;y impacting their quality of life, thanks so much for sharing this extraordinary story with us today.
Thank you so much, Jeff. Always a pleasure.
Dr. Jeff Bland:
You be well.