Over 41 million Americans struggle with autoimmune disease, which means they deal with pain, fatigue, skin problems, headaches, weight fluctuation, and digestive issues. If this is you, or someone , keep reading. The founder of Mymee, Mette Dyhrberg, talks about how her tool is able to help those struggling, and so far she's been able to show results such as a 10-fold decrease in fatigue, a 3.5-fold decrease in pain, and a threefold increase in physical health.
Summary
Mette Dyhrberg, the CEO and Founder of Mymee, is an economist turned diagnostician, who took matters into her own hands, hacked her own health and soon began helping others do the same. Mymee developed a digital approach to managing autoimmune diseases, like Lupus, Rheumatoid Arthritis or Crohn’s, that will transform the way autoimmunity is treated.
In this episode, Mette covers:
How Mymee helps those with autoimmune disease
Examples, including her own story, of how Mymee relieves the symptoms associated with autoimmune disease
Why those who go through the Mymee program have an over 95% completion rate
Transcript
We begin with her personal story.
Mette Dyhrberg: I am the traditional autoimmune patient who goes on a journey that lasts decades. I got my first autoimmune condition when I was 14. I woke up with psoriasis head to toe, and as a 14 year old girl, that was probably the nightmare of all nightmares. Little did I know that that was just sort of the first in a long string of dots to be connected later in my life.
The first half of my 20s, I was in and out of the ER, having weird symptoms. I would lose my eyesight or my thyroid would overreact. I was often told it was all in my head and no longer trusted my intuition.
In my mid 30s, I became a cardiac patient and the weekly EKGs, blood thinners, and cholesterol levels set off a cascade of events. By 30, I had collected an additional six autoimmune conditions. I was giving myself Humira injections on a weekly basis and setting out for life as a chronic patient.
At the time, my mental model was to get the best doctors, and that would equal the best health. This is not to say that having the right doctor is not an important part of the journey, but for me, I had become too reliant on outside help because I didn't trust my body. I didn't trust my own judgment.
In my mid 30s, one of my doctor's team told me that they had “great news,” and then proceeded to tell me I wasn't going to die in the immediate future. I was actually so naive that I said, "That's okay. What's the great news?" And it got exceedingly awkward because they had actually seen this as great news. And I remember asking, "But what are we going to do about my process, thinking there must be something that we're going to do. She just looked me straight in the eye and said, "Well, we are happy with your numbers." As an economist, that was completely unacceptable. I walked out of UCLA that day, and I called my mom and I said, "I'm not going back."
The reality is that elimination diets fit very well into the healthcare system that we've built, where there's a median and a standardized approach. However, what works for most people doesn't necessarily work for the individual.
Georgie Kovacs: Tell us how this experience led you to helping yourself and ultimately starting Mymee.
Mette Dyhrberg: First, I’m not a superhero who got sick and then she just changed everything. I spent 20 years in the system, and only because it was very clear to me that if they didn't know how to help me, I had to help myself. Due to a lot of luck and coincidence, I found a solution.
I applied the only thing I knew, which was process optimization, to my own body. I started to quickly see that there were certain things that made me feel better, and certain things that didn't really help me. Through journaling and transferring everything into Excel spreadsheets, I realized that I needed metadata.
I started testing myself and building a couple of algorithms to look at the causality between what I was doing and how I was feeling. I tapered my way out of my cardiac issues first and after five months, proved that I didn't actually have a cardiac problem. I had a very different issue. Then, 16 months later, I was in a place where I normalized my blood work, I had reversed all my disease symptoms, and I've been drug and symptom free for nine years now.
Georgie Kovacs: How did your doctors react when you were able to heal yourself through the algorithms?
Mette Dyhrberg: My doctors didn't really want to see my data. They had the nerve to tell me that I hadn't been sick in the first place. All I could think of was, I was a foreigner with a lot of pre-existing conditions and an insurance premium through the roof. So I put out my hand, and I said, "I'll take that deal." And my doctor goes, "What deal?" I said, "You just told me that it was psychological, and it was all in my head, right?" And I said, "If that's the case, it goes off the EHR." And he goes, "Oh, no, no, no. Your liver issues and your organs and your blood work is all over the map. So we were definitely not taking off the EHR."
I remember getting angry, like really angry at that moment, because I felt like I've been here for 20 years, in and out of doctors offices, in and out of places where I was being told what I should feel and how I should think. Now I have found the solution, and your rhetoric is, "Oh, you couldn't have been sick in the first place." It was very clear that either I had been sick and reversed it in the Excel spreadsheet or there's the alternative, but you can't have a mixed model.
It ignited something in me, and over the next four to five years, I’d seen 33 people that have been referred from friends or through the quantified self-movement or somewhere. In 2015, I thought, if we can reverse disease on a wide spectrum of people with very different diagnoses, I think we can build a methodology and scale this.
We've built a company today that is a majority of people like myself, who reverse their own autoimmune disease.
And one of the things that I often sort of try to draw parallels between is how we think of health as these compartmentalize things. You know, I would go to the doctor for a stomach issue. I had, you know, rectal bleeding for two years, I had brain fog, I had joint pain, I had, you know, all these different things. And the system really just sent you in different directions, because it doesn't actually know how to think about the processes. And because your body is a beautiful machine, once you actually start optimizing the processes and get the machine running again, a lot of things fall into place. And I actually regained my fertility at 40, after having been in infertile since my PCOS diagnosis at 23.
Georgie Kovacs: Tell us how Mymee works.
Mette Dyhrberg: Our approach really to autoimmunity is unique in the way that we're really trying to identify triggers. When we think about autoimmunity, traditionally, it's over 100 different diseases based on where the body is getting attacked, with fundamentally asking a different question, which is "why," and that's addressing the underlying mechanism or body immunity.
Let's say you had breast cancer and I had prostate cancer, nobody would doubt that the mechanism of action was cancer. But with autoimmunity, we've actually looked at how complex this is, how different these are, because it's different parts of the body. But we've never really understood what was the underlying driver for why the immune system gets "confused" and attacks itself.
Mymee identifies triggers, which means that we take the body's signaling - so it could be a runny nose after breakfast, it could be joint pain, it could be gastrointestinal, it could be whatever the symptoms are for the individual, and we turn that noise into understanding. It's an iterative process over time.
We just did a chronic pain study with Cornell, where the clinical language was mild, moderate, severe pain. But whether you've been in a car crash, or whether you have RA, that's very different, right? So we actually then figure out that for the RA patient, it means achy joints, mobility issues, I can't get out of bed. And by doing that, you make two things happen. One, people identify with the symptoms. But you also make it discreet enough that there's no doubt people know exactly when they can't get out of bed. So you get a very good signal to set up against what people have been doing.
Then we use technology to find the causality and patterns to understand that 3 hours and 10 minutes after Diet Coke is when you have an upset GI or 68 hours after dairy, you don't have any bowel movements, or whatever the implication is. We then take all of these machine insights and have health coaches who have all reversed their own autoimmune disease, and translate those insights into behavior change.
In autoimmunity, there's no one size fits all. Let's say you have 20 different autoimmune diseases, or you have 20 people with the same autoimmune disease, they still don't have the same triggers. And they definitely do not have the same behaviors.
Georgie Kovacs: What are some of the results you have seen in patients who have used Mymee?
Mette Dyhrberg: Most are quite surprised by what ends up being the culprits. You'd imagine that most people had sort of an inkling of what it was, and a lot of the testimonials we get include:
“I've been sick for decades, I thought gluten was an issue, and I've cut it completely out. Coming into Mymee, we found out that actually, it's not gluten that's the problem. It's corn. And by cutting out gluten, I actually ate more corn and that was why I was sick.”
It's your journey, but we provide the map. We've been able to treat over 60 different autoimmune diseases by using the same protocol.
Georgie Kovacs: Is this all food related or are there other things that can cause symptoms related to autoimmune disease?
Mette Dyhrberg: So it's never just food but lifestyle and environment makes up for more than 80% of the immune system. In our data, 82% of the triggers are dietary. On top of that, we then call out the environmental factors. That could be UV light or mold. There's so many different ways and stressors in people's lives, a bad marriage or loneliness can be worse for somebody than any other trigger. So it's definitely a varied sort of spectrum.
Georgie Kovacs: How does Mymee differ from elimination diets?
Mette Dyhrberg: The reality is that elimination diets fit very well into the healthcare system that we've built, where there's a median and a standardized approach. However, what works for most people doesn't necessarily work for the individual. We're seeing that more people who’ve used Mymee react to kale and broccoli more than hamburgers. Also, if you're histamine intolerant, it's salmon; it's avocado, it's spinach. It's something that we consider to be super healthy.
We can actually see that when we eliminate the actual trigger for somebody, people can start eating peanut butter again, even though they've been highly allergic since childhood. And so there's something in the way that the body is communicating that we just don't understand yet. From the Mymee perspective, we don't care. This is actually something that probably upsets more people than it should. But the reality is, we were built as a digital care program to optimize people's health, between doctor's visits. We are the equivalent of the electric toothbrush to the dentist. We essentially are not necessarily going to have all the answers, but we're going to be able to help you navigate and optimize your well-being and your quality of life.
Georgie Kovacs: While Mymee is about optimizing for the individual, have you found any trigger trends for specific autoimmune conditions? What might those be?
Mette Dyhrberg: I now know that if I have a lupus patient coming through the door, my first question is, "Do you have any pancreatic cancer in the family?" It’s because there's certain implications that will put you in a different bucket. It's not a small implication, but a rather large one. We've sort of built a whole set of questions and ways to look at each individual walking through the door.
Georgie Kovacs: How has the healthcare system and medical community reacted to Mymee’s efforts?
Mette Dyhrberg: First, I realized that, as an economist, I didn't speak the language at all. So it took some time to get bilingual in being an economist and speaking “medicine,” so that I could actually talk to doctors.
Then there was a lot of skepticism around self reporting and assuming people will lie. We explained that Mymee users take pictures of what they're eating as they're going through the day, or they're reporting how they're feeling. If they lie, it's garbage in, garbage out, and they're not going to get any better. Yet today, we have a 97% completion rate with the program because we make a sustainable change that impacts your day-to-day.
We've changed quite dramatically as a society. Food as medicine is no longer something that one person in the corner of the party heard of. It's becoming much more nutrition based and holistic in the way that we look at healthcare. Patient autonomy has forced healthcare to look a little bit different at how things are done.
Dermatologists, rheumatologists, gastroenterologists that are referring to us, they all say the same thing. It's not that they didn't understand the problem - triggers and a dietary component - but instead, there's too many variables for doctors to be able to actually pinpoint and figure it out.
So we are seeing more acceptance, even the NIH recently reached out to Mymee.
Georgie Kovacs: Are there areas Mymee is beginning to expand into?
Mette Dyhrberg: One area where we ventured out this past year is COVID long haulers. Mount Sinai reached out to us in May of last year and said they were starting to see this patient population walk through the door, and it was quite confusing. We built out a COVID protocol, and because of the way we stage autoimmune patients, we very soon saw that this was really an acceleration, a pre-autoimmunity. To date, when we look at the COVID long haul population and the autoimmune population, it's striking how disproportionate this is to women. We've added to the protocol for the COVID law haulers, but otherwise, we're essentially taking you through sort of our core protocol.
Georgie Kovacs: Does going through the Mymee program eliminate the need for medication?
Mette Dyhrberg: We eat two kilos of food a day, and we believe that the small pill that's two milligrams has a huge impact. That being said, we're actually not a company that really has anything to do with the medication portion. We know from payer studies that between 25 and 33%, get off specialty pharma medication. But again, that has nothing to do with us. That's somebody going through Mymee, having their blood work improve to an extent where their doctor decides to change their medicine regimen.
We've made a very clear distinction early on that we want patients to never feel alone, we want to empower them. We don't want them to feel like they have to choose one or the other. We have people come through the program, where they completely optimize their health, they go off their medications, and then they come back and say, "My life is less fun. I want to be able to drink beer. And if being on Stelara can allow me to drink alcohol, I have the best of both worlds. Mymee made me symptom free. And the drugs allow me to drink alcohol."
Everybody has to be able to live the fullest life for them. From my perspective, I just want people to have the map because the worst part about autoimmunity is not knowing.
Georgie Kovacs: Tell us about one of your most interesting cases.
Mette Dyhrberg: I had a client who had been diagnosed as a Parkinson's patient. When I looked at her symptomatology, I was very confused. I couldn’t understand her being a Parkinson's patient. She mentioned seeing one of the most famous doctors who diagnosed her father-in-law and then her. I said, "Well, sometimes the problem can be that it's just too obvious of a solution. In your case, I feel pretty sure if we got that scan, that you wouldn't actually qualify as a Parkinson's patient." A month later, because of their hurdle with insurance companies of getting that scan, which is a requirement in Europe for the diagnosis, it became clear that she wasn't a Parkinson's patient. Yes, she had all the immune issues, but she wasn't a Parkinson's patient. She started crying and not like the happy, relieved, crying. I asked her, "What's going through your head?" And she goes, "Does this mean I'm crazy again?"
That is why we do what we do. If we start judging people, if we start having opinions about drugs, if we start being all of that, we can't be what we've decided we want to be, which is a place where we listen to you and your body, and we take that and make it into actionable recovery.
Georgie Kovacs: Have you, from your dataset, been able to uncover why we might be seeing such a significant rise in autoimmune disease?
Mette Dyhrberg: I do believe that we've gotten to a place where if I go to a dinner party, and people figure out what I do, which I try to hide, for the most part, I will be talking about poop for the rest of the night because everybody is sort of having issues. And I think it's predominantly because of the environmental issues.
And we've completely destroyed our food chain, all of the GMO stuff that we have done that we thought we got away with. When I grew up, people had seasonal allergies and there was an odd person who had a peanut allergy. Today, you can't even bring peanuts to kindergarten because it's like the majority have issues. When you look around at the amount of people today who are popping pills for lactose intolerance or gluten digest or whatever it is that people are eating, that's not a coincidence.
Autoimmunity takes a long time to produce. When I see women in their 40s with Lupus, I can typically find a point when they are around eight to 12 where we can see that this was the first time if you had water retention around your pelvis at nine years old, whatever you were eating at nine, is still causing you the issues now, but it's just a slow build.
What we're doing as a society right now, is we're building an enormous problem. The hospitals in New York, for example, they've actually stopped doing the ANA test, not the COVID antibody testing, but the traditional antibody testing. You can only get done now if you're showing all of the physical manifestations of the disease. In the past, if you came in, and you had all this weirdness, they would draw your blood to see if you have elevated autoantibodies to do further testing. Today, more people test positive than negative to this test, and the hospitals cannot afford to do the additional testing. So we've just decided to not test.
If you put all of these pieces together, unfortunately, I think the problem is much worse and across a much broader population than we even can imagine at this point.
Georgie Kovacs: Give us a quick snapshot of what happens when someone comes into Mymee?
Mette Dyhrberg: You’re first given access to an app, and for three days, you snap a picture of everything you eat. It's not because that's the end all, be all. It's because we actually need you to learn how to log and it's a new behavior, and most people eat every day.
Then you have your first intake call with a health coach. We have an enormous amount of data that has allowed us to build a process optimization qualifier. For us, it's important to know if you're breaking down in sleep, in bowel movements, in hormones, in sugars, or if it's only one or two areas, but now we have enough data that we can break down ways that actually that we need to start.
And to be fair, that's still one of our biggest issues - some of it is quite counterintuitive. For example, if you come in with myositis gravis, you want me to look at your eyes, you do not want me to look at your acid reflux. But we've figured how to stack the issues in a way where you get the most bang for your buck. In the first weeks, we're really trying process optimization. If you've been constipated since 82, it doesn't matter whether I figure out what your triggers are, because your system is not responding.
We start out by optimizing some of the low hanging fruit. And while we're doing that, we're gathering intelligence, which then allows us by about week four, to say, “This is most likely the trigger.” We then go in and eliminate that one or two things. Whether that pans out is generally the direction for whether the client then hits “next”
In some cases, there will be an iterative process, or we'll need to eliminate one or two additional things. Let's say it's gluten. In most cases, when you eliminate gluten, you actually figure out that there's something else like buckwheat or something else, that's even worse, but only because you took out gluten did you actually start replacing all of your dietary things with this other thing. And so in some cases, easy, you take broccoli out, no reaction. And in other cases, you take something out, but whatever you're placing ends up being the real culprit. And so that's sort of an iterative loop, where you're sort of like figuring out your one or multiple triggers.
Soon, you start to see your inflammation go down or have a reduced need for medication or dose of medication, including prednisone.
Towards the end of the program, where the total core program is 16 weeks, we generally reintroduce your triggers - we actually make people sick on purpose. We don't do it to be mean, but we do it because we've seen over years of doing this, that with the way the brain works, it forgets very easily how it used to be - the joint pain, migraines, inability to sleep. With reintroduction, you make it very clear that you can eat your way into this and you can eat your way out.
Georgie Kovacs: Is Mymee covered by insurance?
Mette Dyhrberg Yes, if you are a client with Oscar Health or Humana or a couple of others, it is covered.
Georgie Kovacs: What is your greatest hope for women's health?
Mette Dyhrberg: My greatest hope for women's health is that there will never ever be anyone again being told it's all in their head when somebody actually seeks medical care because there's something wrong. And whether we understand what that is or not, is irrelevant. But we actually have to be able to trust the individual walking through the door.
Resources
How Healing Works by Dr Wayne Jonas
The Autoimmune Epidemic by Donna Jackson Nakazawa
Check out all of Fempower Health’s resources on Autoimmune and Chronic Disease.
Stay in Touch with Fempower Health
Subscribe to the Fempower Health Podcast on Apple Podcast, Spotify, or anywhere else you may listen to podcasts.
Stay in touch with Fempower Health by signing up for the newsletter.
About Mette Dyhrberg and Mymee
Mette Dyhrberg, the CEO and Founder of Mymee, is an economist turned diagnostician, who took matters into her own hands, hacked her own health and soon began helping others do the same. Mymee developed a digital approach to managing autoimmune diseases, like Lupus, Rheumatoid Arthritis or Crohn’s, that will transform the way autoimmunity is treated.
About Fempower Health and the Founder
Georgie Kovacs, is the founder of Fempower Health, the go-to resource for all things women health serving women, their providers, and companies looking to build/improve on products for women. She also hosts the Fempower Health Podcast, where she interviews experts to help women better understand how to navigate their health both day-to-day and in partnership with their providers. Her mission is to minimize the years many take to seek proper diagnosis and treatment.
Georgie founded Fempower Health after her first-hand experience with infertility and endometriosis. Leveraging this experience along with her 20+ year tenure in the biopharmaceutical industry and consulting, she leads this movement to empower women. With limited research dollars and women’s “training” to grin and bear it, both women and doctors are in the impossible position to diagnose and treat conditions with little information. Women deserve more and better information, insight and innovative health solutions.
**The information shared by Fempower Health is not medical advice but for information purposes to enable you to have more effective conversations with your doctor. Always talk to your doctor before making health-related decisions.
May contain affiliate links