Self-Advocacy Platform Allows Patients with Autoimmune Diseases to Discover Triggers, Improve Disease Management

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Mymee, a self-advocacy platform, utilizes technological innovation, such as self-tracking, data analytics, and expert health coaching, to improve access and offer hope to these patients by uncovering their unique triggers, managing disease flares, and improving quality of life.

Mette Dyhrberg, a diagnostician and digital health innovator, was inspired to create Mymee from her personal lifelong health journey living with 6 simultaneous autoimmune diagnoses. Dyhrberg understands the struggle of those living with autoimmune disease and how treatments often fail to help patients living with these conditions. Mymee, a self-advocacy platform, utilizes technological innovation, such as self-tracking, data analytics, and expert health coaching, to improve access and offer hope to these patients by uncovering their unique triggers, managing disease flares, and improving quality of life. Data regarding the Mymee platform was presented at the American College of Rheumatology (ACR) Convergence 2022.

Rheumatology Network: What was your personal autoimmune journey and what inspired you to eventually create Mymee?

Mette Dyhrberg: As an autoimmune patient myself, I know about the daily struggle so many patients face in coping with uncontrolled symptoms because I’ve been there. I was Mymee’s patient 0, struggling with multiple diagnoses including psoriatic arthritis and Sjögren’s before finally gaining control of my symptoms after years of trying different medications and diets that didn’t help me. Mymee was born out of this experience.

I received my first autoimmune diagnosis at 14 and from there went from being an active healthy person with top grades to fatigued, emotionally labile, and unable to concentrate enough to read a book. I struggled with metabolic syndrome including insulin resistance, hypertension, cholesterol abnormalities, alongside the autoimmune diseases hyperthyroidism and psoriasis. The number of medications prescribed kept increasing. By my twenties I was already medicated like an elderly person. I realized that the solution had to be found in my body’s complex immune system. After having consulted doctors and endocrinologists, as well as following strict diets prescribed by dieticians, I finally took matters into my own hands. As an economist by training, I was naturally drawn to what the numbers can show me. The concept of self-tracking with technology was gaining momentum around this time, and more and more people were developing tools that could provide “self-knowledge through numbers.”

This is precisely what I was hoping to accomplish by turning to data to pinpoint my autoimmune triggers. Using an Excel spreadsheet, I began systematically tracking my symptoms, diet, habits, sleep, stress levels, and other daily data points for any hidden patterns I could find. After about 16 months of this, I was able to correlate my triggers and symptoms and basically crack my own case. What followed was a decade-long journey of building a clinically validated solution focused on people who struggle with uncontrolled autoimmune symptoms, despite immunosuppressants and standard diet or nutrition protocols.

Finally finding my unique triggers by analyzing my personal data was a revelation. I became determined to help others do what I had been able to do for myself, only more quickly and efficiently. For a long time, my life felt like I was running a marathon with a heavy backpack and the fact that I found a way to leave that behind is the accomplishment with the single biggest impact in my life. I hope to help others who struggle with debilitating rheumatic autoimmune symptoms despite everything else they might have tried, to experience this same kind of relief.

RN: How does this platform provide specialized care and support for patients with autoimmune diseases?

MD: Mymee serves people with highly variable long COVID or rheumatic autoimmune diseases like lupus or rheumatoid arthritis who struggle with daily symptoms that require personal trial and error to resolve. Over the past decade we have treated 67 autoimmune diseases, and rheumatic autoimmune symptoms is where Mymee has the biggest impact as well as now, the most data. Since 2020, millions more are now estimated to have Long COVID with rheumatic autoimmune disease biomarkers.

A specific subset of this population has tried immunosuppressants, functional medicine, and diet or nutrition protocols to address symptoms like fatigue, joint or muscle pain, brain fog, headache, and anxiety with no success. High sensitivities to hidden triggers in their food or environment mean that any number of factors can be a trigger. A ton of research is still on-going to understand the relationships between diet and other environmental influences and autoimmune disease but what we know from published research so far is that every patient’s combination of triggers and cross reactions is unique. Importantly, the ACR just released guidelines that definitively acknowledge the role of diet and integrative care to help patients. However, we know that special diets, over-the-counter products, pain medications, vitamins, and supplements may hurt or help, depending on the individual. For patients seeking relief for their symptoms, blindly going through trial-and-error on their own can be a painful and costly process, and even dangerous.

Mymee’s specialized tools and services consist of a proprietary data platform and the support of specialized coaches who handhold clients through the process of finding and navigating their unique triggers, based on their personal data. It is designed to remove the uncertainty of going through trial and error completely blindfolded to the risks associated with their specific sensitivities. The program provides a personalized solution for helping people discover their unique triggers by generating and analyzing their own evidence, what we call self-evidence. Having access to their own data enables patients to correlate their symptoms to atypical or different combinations of triggers. On top of uncovering hidden triggers, the program is built to help patients identify the time delay between exposures and symptoms and the cross reactivity and dosing tolerance between different sensitivities. It’s an ongoing process that enables clients, with the help of their coach and continuous self-tracking, to expand their personal “experiments” as they adapt to more real-world scenarios.

This fall we completed a multi-year study that demonstrated how Mymee’s self-evidence-based approach can help people with complex cases of long COVID and rheumatic autoimmune disease to improve their quality of life. Within an average of 17 weeks and with an average 756 observations recorded per patient during the program, Mymee provided clinically significant health-related quality-of-life improvements in 10 domains, including fatigue, cognitive function, pain interference, and symptom management. This included mild, moderate, and severe symptoms, although patients who reported severe symptoms at baseline saw the greatest average improvement at the program's endpoint. Patients were evaluated at the beginning and at program endpoint using the National Institutes of Health’s (NIH) clinically validated Patient-Reported Outcomes Measurement Information System (PROMIS) scores.

I am very proud to know that Mymee’s specialized care and support is making such a significant positive difference for people who have been struggling with these “invisible” diseases for years. The vast majority are women who have grown accustomed to juggling uncontrolled symptoms alongside their jobs, families, and households. By focusing on an individual’s personal, real-time data, Mymee uncovers and addresses the hidden triggers driving their disease flares. They then receive continuous, personalized nutritional support, and other integrative interventions best suited for them based on their own evidence, not that from a random control group.

RN: What do patients need to know about Mymee?

MD: Immunosuppressants are a partial solution not a cure. 70-75% patients in randomly controlled trials do not reach remission, and 85% of those that do are not in remission in Year 2. Patients should understand that these FDA-approved medications are based on pivotal trials that demonstrated efficacy in a subset of the population that met very specific inclusion criteria. They don’t necessarily reflect the population at large nor does this mean their own situation is hopeless. By harnessing self-evidence to find their precise trigger-symptom correlations, patients can take a critically important first step to finding the best evidence-based solution for them, when the evidence of others fails them. Mymee was designed to help. For people with Celiac disease, managing their symptoms by avoiding gluten can be challenging enough. Imagine how much more challenging it can be without any information at all. This is the power of self-evidence and why Mymee leverages data to help patients who continue to struggle with uncontrolled symptoms despite their best effort. Tonya’s own story is a wonderful example of how empowering it can be when you uncover your triggers to take control of your health.

RN: Is there anything else you’d like to add?

MD: Mymee’s specific focus is patients who do not benefit from immunosuppressants and are unable to successfully correlate their symptoms and triggers in order to manage frequent disease flares. As we saw in our study, the vast majority (about 80%) are women.

I hear so often: “You just need to change your behaviors, or you too can gain control of your symptoms - with motivational and behavioral health tools anyone can learn to eat healthy, or have you followed the Mediterranean Diet, or have you tried not eating gluten?” While this is helpful for some, many people with rheumatic autoimmune disease have spent years changing to try to be healthy and the reality is they have a unique case that cannot be solved without harnessing their own data. When you cannot draw direct correlations between your symptoms and hidden sensitivities in your food and environment, hearing over and over again “try this, try that” is exhausting. I want women to know that it is not their fault. It is nearly impossible to identify and manage sensitivities on your own.

All Mymee’s real world data reinforces that women with fatigue, joint pain, muscle pain, limitations of movement, and other completely unpredictable health issues feel more empowered when they can draw direct correlations to manage their flares. It helps explain why in our study, we saw that a significant improvement in managing symptoms, correlated to a significant reduction in anxiety.

Women deserve to feel empowered in their care; having their own evidence is akin to becoming their own Sherlock Holmes on the path to a better quality of life. Managing personal triggers across ever-changing, real-world scenarios can be like looking for needles in a haystack. For decades, rheumatologists have stressed that patients with significant disease activity need to be careful with fasting and elimination diets, and they’re right: the more sensitive a patient is to their food and environment, the greater their symptoms, and the more a precision approach based on their own evidence becomes necessary.