Figuring Out What Treatments Work Best For "Your Condition" Using AI and Crowdsourcing

Welcome to the Lyme Voice Network. We are chronic illness warriors, caretakers, and advocates who are overcoming illness in all of its many forms. We created this show to inspire, educate, and encourage you on your path to wellness. We're here to help you put the puzzle pieces of healing into place. Join us and our network of Lyme warriors as we discuss how fighting is a mindset, healing consists of choices, and living is the outcome.

Welcome to Lyme Voice Radio, where we talk about all things chronic illness.

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Welcome, welcome, welcome to another episode of Lyme Voice. I am your host, Sarah Slickdy Sanchez, and with me today is Yael Elish. Did I get it a little bit close?

That's perfect. Yael, yes.

Yael, and coming to us from Tel Aviv. Thank you so much for being here with us today.

It's a pleasure to be here. Thank you for inviting us.

So tell us, you are the founder of stuffthatworks.com, and that is a crowd AI-based crowdsourcing platform for people with all types of chronic illnesses. Tell us a little bit about your background and what led you to do this.

Sure. I'll just say in a few words a little bit more about Stuff That Works. In essence, Stuff That Works addresses the problem of people that are already diagnosed with a chronic condition. Once you are diagnosed, Very frequently you're getting treatments and the treatments are not necessarily optimal and you're switching from one treatment to the other. Many treatments, in a sense about, we see from the data about 300 to 400 unique treatments for almost every chronic condition, but the effectiveness is not really compared because it's very costly to conduct clinical trials. Clinical trials are usually done by pharmaceutical companies on the products that they're selling and the overall effectiveness of compared to other products is seldom compared, let alone how they perform in the real world, let alone that the fact that people are very different. So you need too many people to conduct the trial of which treatments really work for who. Okay, so it's not really done. In essence, we are kind of being treated on a trial and error basis. Based on the guidelines. So the reality for people with chronic conditions is that many times they're just switching from one treatment to the other, hoping that they'll find a better treatment. And often that's not the case. So what Stuff That Works does is using crowdsourcing, we're empowering people from every chronic condition to share information about their experience, about themselves, about how they experience the condition, about the treatments that they've tried, about the treatments that worked better in an organized way, which becomes a database that's then automatically analyzed by machine learning algorithms to figure out which treatments work best and for who. And when you have a large enough number, you can predict, you know, even at the subgroup or individual level, which treatments should work better for who. So this is what Stuff That Works does. Anyone can start a condition on Stuff That Works. We have about 350 conditions that were started. By the way, there are about 10,000 chronic conditions. 7,000 of them are rare. By now, about 600,000 people have contributed structured, organized information for different— all these different conditions. And many conditions have reached a level where effectiveness is already— the comparative effectiveness of treatments is already available. Wow.

So before the interview, several weeks ago actually, I went on and logged in and registered as a participant. And it's been neat to see. I've been in the Facebook groups for years now as far as hearing stories. You guys are collect— I've been collecting stories, you guys are collecting data, and it's really neat to see on the platform how that is playing out. Because I went in, answered, you know, all the questions and stuff, but I've already gotten messages from participants saying, especially in the Lyme community, because that's the niche, hey, what treatments did you use? Like, so I've already been dialoguing just like I do within the Facebook groups with people on Stuff That Works.

So yes, in addition to all the information that's being shared by, on a survey that consists of about 60 different questions about, you know, who you are, how you're experiencing the condition, what are the early symptoms, the symptoms, the comorbidities, and so on as participants. All this data becomes data about symptoms, triggers, comorbidity, and so on. So descriptive information about the condition collected by thousands. So basically an aggregation of thousands of people that becomes data from the real world of how the condition, how people experience the condition. And in addition to that, it's also a community where you can discuss and talk with the people that are participating and contributing the data. People also contribute and research questions that become part of this collected data that everybody else answers. Someone has thoughts about something that's smart enough question to ask that everyone can answer and that will become part of the database that will be later analyzed to figure out important things about the condition, then that's done. So you post your question, the question is being sent to everyone. And the answers come in a structured way that becomes basically data. So the big difference here is that if you're on a Facebook group, for example, which is great and very supportive, the information that is being shared and all the important data that is being shared, the important information doesn't become data that you can, you know, that can be actionable and that can help understand at a deep level who are the people, What are their characteristics? What are the treatments? And so on. It cannot be analyzed. And with Stuff That Works, the difference is that for the first time, information that is shared, what's called real-world information, by the way, that's like a very big trend in the medical world, is becoming data. Real-world information actually, and this trend is a very interesting thing, I think, very much in favor of like a trend that's extremely in favor of you know, what patients, what people really need.

That's interesting. I haven't heard that term, real-world information, specific to the medical community.

Yes, definitely. It's like a very, very big buzzword in the medical community where the medical community, including pharmaceuticals, including doctors, everyone is realizing that clinical trials is important information, but it's extremely limited in the fact that it's conducted on a small number of people and in a very controlled environment where the real world is very different because life is different than a controlled trial environment and people are very different. Real life is very different than a controlled trial environment. And a lot of feedback, important feedback, can also come from there. The big problem is that until now, there hasn't been really a way to collect all this information coming from what they call real world. Yeah. So the alternative that is being— billions are being spent on is trying to get to this real world information by analyzing medical records and digital claims. That's basically the alternative to what Stuff That Works is doing. Okay, so let's take, you know, data coming from payers and insurers, and let's try to figure out what happened with patients there. Okay, what was the, the outcome? So that's kind of a— if you can't do it directly, try to do it indirectly by analyzing the data on stuff that works. It's being done in a very organized way where the intent is very clear in the sense that people are being asked questions and they are providing very clear answers, as opposed to trying to figure out the notes of your doctor and so on.

Yeah, well, it's encouraging to me to hear that the medical community, which kind of functions. Takes a long time for the medical community to catch up with real-life patient experiences because we'll get into this, but when you are a patient and you have symptoms that are outside the box of what your doctor understands, right? You said there's 10,000 chronic conditions. Okay, your doctor— it took me a long time to realize that even if my doctors figured out what was going on, they didn't know how to help me heal. And real-world information, which I would refer to as patient experiences, is often discredited for a variety of reasons. And I get coaching people that I coach through this process. I get text messages from them on a regular basis, like leaving infectious disease and being heartbroken because they were told Lyme disease does not exist. And they're like, okay, well, what do I do? Like, I've been sick for 6 years now. How do I move forward? And if you, we, our medical system here in the United States looks at each individual body part and you go to doctor after doctor and you're dismissed, it's, oh, if you have a heart issue, go there. If you have muscle fatigue, go here. And meanwhile, the whole person, the real-life patient experience is not being addressed. So real, the fact that the medical community is saying, hey, we're gonna start listening to these millions of people who are suffering around the world, that's huge because that only empowers patients.

Yeah, the interesting thing, you know, when I started this company and maybe I'll talk a little bit later about how I started it and why and the Waze experience and everything and the experience with my daughter that led me to starting this. But I thought that there would be skepticism from the medical community about collecting information from patients and if it's my background or whatever, but I was greeted with exactly the opposite. There is huge acceptance, you know, and respect for whatever is data, big data and AI, because you cannot really argue with that. A large number of, a large body of people provides information that becomes data and the data is analyzed in very credible tools. There is, you cannot really argue with that. To the point that when something surfaces, when information surfaces that they're not aware of, then they're paying attention to it. And by the way, we've done a lot of work in analyzing our data and its quality and sharing it back with the medical community. Basically what we showed is that the data that is collected from the Stuff That Works patients is completely in line with the medical— with guidelines. So treatment guidelines. I don't know if you know what the consensus documents and guidelines are. Those are basically the recommendations compiled by the medical community about each and every condition. What are the treatments that should be— what are the best, better treatments? They basically then, if the medical community actually acts according to those guidelines, then what people report as what they've tried should reflect the guidelines. And this is what we did basically, and we reproduced the guidelines and, um, and consensus documents for all the conditions that we've tried. So what people actually report is very representative of what's happening in terms of the treatments that they've been prescribed. And you cannot argue with symptoms, comorbidities, triggers, and so on, because those are subjective.

By nature. Tell us what led you to start this company.

So now one of my dogs is suffocating. Sorry, this is terrible. I'm sorry about that.

I did not know what that sound was. I was like, what is that? Sounds kind of like a tractor maybe, or— That's all right.

So my background is, is an entrepreneur. I've been doing that in, uh, consumer digital space for years, a gazillion years, I'd say. I started a couple of companies on my own, and then I joined Waze, part of the founding team very early on, and I led the product and marketing. And so I was very much into crowdsourcing and seeing what crowdsourced— like how powerful crowdsourcing can be when people decide to participate, right? When people— when there's a buy-in, for the vision by people in large numbers, it's just incredible. You can reach things that are just amazing and you really need a buy-in, by the way, from people. So people need to see that as a significant problem and they need to like the solution and they need to want to take part. Only then you can really make crowdsourcing at large scale work. So it's challenging, by the way. This is why I guess you don't have many Wikipedias in ways like not many problems of the kind that people feel that they need to be a solution and that the solution makes sense to them, right?

And that they can be a part, an active part of it.

And that they can be a part of it, yeah. So I'm glad, you know, I was glad was one of those things. And what happened was that I have 3 daughters, one of them when she was younger, so it was during the time that I was working at Waze, she developed a condition and not a life-threatening condition or anything of that sort, you know, the ones that we're all familiar with, But just like all chronic conditions, it takes a very heavy toll on the person, you know, on her as a child and on the family. And it was just getting worse. And we were just trying different things, different doctors, different specialists, and it was still getting just worse and worse. And I was kind of somehow— it was, I guess, 15 years ago at least. And I was kind of researching relentlessly online, kind of intuitively knowing that there has to be something out there. And there wasn't Facebook groups at the time. And it took me about 2 years that I landed on a blog of a, I guess, a teenager that maybe was a celeb or something because there was, there were many, many comments to his blog post and seemed like the treatment that he was talking about works because of all the different comments of the people. I went back and tried to look for, you know, doctors that specialize or aware of this. A method and I ended up finding one. And then it took about 3 weeks from the moment we started, she got on this treatment to complete clearance. So just, you know, went away, complete remission.

Wow.

New kid, new life, complete change. And then again with her, again, something else different came up and then I was more confident then and I did a lot of research and I ended up finding a clinic right nearby that was taking, that was specializing in that, but the doctors that were, that took care of her were not aware of it. And it was like one place that from around the country people came, but this doctor was still not aware of this place. And again, it cleared very quickly once she got on the right treatment. So, and the more you start talking about these things, and by the way, once this happens to you, really want to tell people, you really want to help.

Such a common thread in this community is the suffering is so immense that when you do suffer or your family is impacted, you want to be at a place where you're like, how do we stop the suffering? How do we not let this happen to someone else?

And if you do find something, you really want people to know about. And do. Yeah.

Well, and what are the statistics? Um, like in America, chronic illness impacts about 60% of people. What are the statistics in Tel Aviv? Are you guys similar?

Oh yeah, we're a Western country. It should be, it should definitely be the same. And chronic from all types, orthopedic, mental, diabetes, pretty much everything. Yes. And it's just, it's a world pandemic, obviously. It's 6.5 billion people worldwide. It's becoming more and more people have them and more than one condition. And then the age of onset is just dropping dropping dramatically. So, you know, you have kids today suffer from conditions that were adult-only conditions at the time, which, by the way, suggests stuff about the origin of chronic conditions, which now that we have so much data, we are in a position to research exactly that. So once you build such a huge database, and the database that was created already now is one of 30 million data points And there's something very interesting actually about how we collect the data and why it's really optimized for research, and I'll talk to that in a minute. But so it's now a database of 600,000 people growing at about 2,000 new contributors every day and about one new condition that is being added. So the numbers are growing very, very fast. So the data— so that's like a huge amount of data. And what's interesting about it is that The data is collected in— so the exact items are collected across all conditions. So the same questions are being asked across, you know, hundreds of the—

Fascinating. Yeah.

Now you have like a perspective and a way to compare between all conditions. So the data is optimized for comparing like kind of a bird's eye view on all conditions. So it means that if you're looking at it from even a diagnosis point of view, a symptom can be very common for a condition, but it's common in many other conditions as well, okay, or a trigger. But when you have this data that's kind of consistent across so many conditions, you can look, you can analyze it and say, okay, but now I can tell where it's more indicative, which symptom is more indicative to a specific condition.. So this is what also, not just the symptoms, what are the symptoms, triggers, comorbidities, age sets, every aspect of the data that's collected, you can be much smarter about it because it's consistent across all conditions. So diagnosis, for example, becomes much better because it's collected in the same way, same questions, it's normalized, it's in the database in the same way. So it can be also researched in a kind of very consistent, very consistent data across all conditions. So it's like basically data optimized for research about real world, about very easily you can add a question. Let's say if you want to, for example, ask about something about pregnancy and the effect during pregnancy, for example, you add a question, you can add it to one condition or you can add it to all conditions at the same time. And then you will, within days, you'll receive hundreds of thousands of responses and you can compare how it's, you know, the response across all conditions and run correlations and very interesting statistics. So it gives you this like broad perspective of the same question being asked across all conditions, which is like unprecedented. Yeah. And it happens within days.

Welcome to the Lyme Voice Network. We are chronic illness warriors, caretakers, and advocates who are overcoming illness in all of its many forms. We created this show to inspire, educate, and encourage you on your path to wellness. We're here to help you put the puzzle pieces of healing into place. Join us and our network of Lyme Warriors as we discuss how fighting is a mindset, healing consists of choices, and living is the outcome.

I've been so intrigued by the memes and emails and stuff that I've gotten because you guys are showing mathematically what people are dealing with. So yes, you may have Lyme, but there's also— you're Usually people with a chronic illness don't have just one chronic illness, or they're not just fighting a bacterial infection, they're also fighting a viral infection. And so those symptoms across are just showing in ways that I haven't seen, just, oh, okay, here's what's really going on. And there are— maybe my doctor doesn't even understand these 15 symptoms, but there's hundreds of thousands of people out there who do and are experiencing the same thing. It's validating and it's intriguing because, like you said, in the Facebook groups, that information, you're just like, you're digging, you are scratching for information. And I know for myself, I have found highly valuable information within that Facebook group. Life-changing, form a new direction, see a new practitioner. But you have to dig through so much negativity and toxicity and people who are hurting and people who are confused or blaming someone, or it's very, very confusing. And so I think the way you guys are doing it mathematically is just really powerful.

Yes, I really think that this is where the power of people coming together is really forming something that could never otherwise have happened before. There's like no way to organize something like that. Too costly. No one would organize anything like that. And you get to the point where, you know, millions of people across different continents can share information and information becomes something that you can do something with, meaning you are— this lack of validation is going to end. Wow. So I think that this is one of the very frustrating, the most difficult things to deal with is when you're in pain and there is lack of validation for what you're experiencing. I know many conditions that kind of almost feel, you know, gaslighted by— for sure, a terrible experience. So transforming this experience into reputable data, it's so funny, you know, making— conducting a research survey, let's say that you're a pharmaceutical company and you want to research something, you want to conduct such a survey, the cost would be above $100,000. You would probably at max have 30 questions that you're asking. It would take them half a year and it would not be in any depth, not ongoing, not compared to any other conditions. Very, very limited information, very costly, that takes a lot of time.

Well, and then it's specific to that one drug.

Right, exactly. And it's specific to something that they're interested in. So compare that to what interests people, because by the way, what we said from the very beginning is that people know. You spent so much time researching your condition. You have both the intuition and you read a lot. You probably, you know, not all patients, but some patients are extremely knowledgeable, scientifically speaking, also about their condition. And they know. And all you need to do is just provide them with tools to even research, you know, simple tools for research and adding— this is where I mentioned that people can add research questions. That become part of the database. And we're very soon also going to surface the results of— if you had an interesting question. So, for example, I noticed that stress causes nails to become brittle within a day. So if you're stressed— No way. You know, small stuff that you notice about yourself, but that kind of stuff like hair loss, like if you're highly stressed, that like if you have an event of stress, hair will— you start losing hair within days. It doesn't take a lot of time. So like, you know, these kind of small questions that you can just ask, hey, did you guys notice that? Or does this happen to you too? And that becoming part of not just a question on Facebook groups, but the answers getting into a structured form that goes into— that's being added to the knowledge base. Of, you know, many thousands and thousands of questions. And then like AI, machine learning, and correlations, looking for connections with the data. So you can say, okay, people that experience brittle nails also have this, this, and this, and so on. I'm just giving, you know, a stupid example, but—

Well, no, then it's not stupid because it's valuable, because then you can connect, okay, maybe my hair is falling out, or maybe my nails are brittle But when you dive in and you start understanding conditions and stuff, then you can say, okay, maybe my adrenals are suffering and you guys are bridging that gap.

So a question about, you know, whether you have experienced chemical materials, exposure to chemical materials prior to the onset. Have you had, you know, a viral infection prior to, just prior to the onset of your symptoms or whatever? This is like an amazing way to research. And it's, those are the main questions. And what I'm hearing many Many times again, from very knowledgeable patients that are aware of what's going on with research for their condition, is that it's not necessarily the real questions that are being researched. So that pharma supports and so on, so would not necessarily be the questions that are the right ones to ask. So it's an opportunity to conduct, you know, to empower people to conduct research. And on our end, our responsibility is to provide the advanced AI to surface the stuff that comes up and surface the stuff that comes up. So we're relatively in early stages. There's a ton that can be done.

Yeah, I was just going to ask you that. What's your grand vision for Stuff That Works?

So that's exactly along these lines. So first of all, we're now providing the services currently for people that are diagnosed already with a condition, and it's really focused on helping you learn more about the condition. As the number of contributors grows, you're getting to which treatments work best and for who, all the way to predicting on subgroups and individual level. So at the end of the day, with thousands of contributors in your condition, our algorithms should tell you what should be effective for you. It takes time to get to the thousands of contributors that are needed, but this is how it works today. And the next step is helping people that are not yet diagnosed, that have no clear idea. Our algorithms, by the way, are already showing that kind of have a score showing how similar you are to the other people with your condition. And many times you may be misdiagnosed, for example, right? Yeah. So we have this score that's generated by AI that compares all the information that you've shared to the other people in your condition, and it will tell you, you know, you may be— there are other conditions that you look more similar to. Yeah, absolutely. All the way to if you even, you have no clue what you have, then, you know, you would answer a significant number of questions about age, gender, symptoms, other conditions that you have, all the relevant questions for diagnosis, and it will be able— the algorithm will be able to tell you what are you most similar to. So we are already doing that with an 85% level of success, like predicting, which is kind of higher than— Wow.

Yeah.

You know, when you ask 60 questions, so when people answer 60 questions, it's a lot of information. It's much more than you would be asked by a doctor when you visit. That includes, by the way, clinical indicators depending on the condition, sugar level, and so on. So that's a lot of information and it makes it not very complicated for machine learning to define the similarity between people. By the way, another huge advantage is that it's in people's natural language, which is very different from medical world that's written in symptoms have a different name, which make it difficult to bridge between those kind of two worlds, two languages.

So in medical terms, it's not exactly—

it's not a medical. And what we did is kind of a reverse engineer. People came already diagnosed with a condition, providing all this information about their condition and themselves and, you know, in human language. And now we know, given that you have like many thousands of them for the same condition, you have a very clear picture of what this condition is, how it's described in people's natural language. So then when people come and look up a symptom or a combination of symptoms or anything else, it's much more natural for them to talk in their own language. And this is why it makes it much easier to also diagnose or kind of tell you where you are, what are you most similar to. And misdiagnosis is a big thing, very big thing.

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I love going back to when I asked you what your big vision was. I love that the next step is what if you have a diagnosis? It's one thing because then you can kind of know how to move forward. It depends. That's not always true. But what after doing the assessment and being part of the community for the last few weeks, That was my bottom line thinking, was I was like, oh, they're talking about diagnosis, but someone who does not have a diagnosis, which was me for years and years. And I, like, for instance, as I had horrible, horrible joint and bone pain, my bones hurt so bad it was excruciating. My hips, my knees, everything. And it would rotate, but it was always there. And but I would— did not have arthritis. So I was so confused for a long time because I would go through and do the testing and I didn't have arthritis. Okay, well, all I could— the words I could use were bone pain. I don't know how to describe this. I feel my bones. You shouldn't feel your bones. I feel my bones all the time. I feel like a walking skeleton because of how bad I hurt. So that's what I saw within Stuff That Works is you guys are kind of going to bridge the gap between diagnosis and just symptoms because so for so many people, millions out there, that's all they have. And especially if their symptoms are being invalidated by their practitioners, whether it's arthritis or depression or anxiety, like, oh, well, you know, people have anxiety. And you're like, this isn't normal anxiety. Like, something happened to me. I used to be a functioning normal human being, and now I'm having panic attacks if a car drives too close to me. So you guys, I think you really are bridging that gap between diagnosis and symptoms, which to me is so empowering because, like you said, people know what their symptoms are.

Exactly. This is exactly the point. And in natural language and with this, again, having this data that's across like the same data about symptoms collected across all conditions, knowing now it allows us to know when like a certain symptom that you're mentioning is more indicative of a condition. So you see what I'm saying? You can have like two conditions where, you know, 70% or 80% of symptoms are very similar. Right? But one or two symptoms will be— Stand out. Stand out from the data that in this condition they're more prevalent. And then so this is like, you don't have to be a doctor remembering all these symptoms. You know, at the end of the day, it's more of a machine task, I guess, you know, to be able to remember tens of symptoms, comorbidities, ages, like what characterizes someone with a condition. By the way, more interesting than that, I think, is that The medical literature that doctors are trained on was created tens of years ago before computers collected, like almost like a human curation, right? So a limited number of doctors collected information based on what they have collected. That's pretty much it. Doesn't reflect the condition. It does, but it doesn't. There's no doubt that it fails to describe a condition with all the different complexities. How it manifests itself across different people. There's just no way it can do it. Yeah. What doctors are learning today is basically very, very old information that was collected in a very, very old-fashioned way.

Oh yeah, I've interviewed so many practitioners who say, basically, in order to treat my patients, I had to unlearn everything I learned in medical school to actually treat my patients. And I've said this so many times on air, but it's true, and you're proving it. Stuff That Works proves it because I've said patients are fighting and advocating just as hard to get treatment as a lot of practitioners are fighting and advocating to give that care to their patients. And whether— why is there a disconnect between patients who want care and practitioners who want to give it? And they don't want their patients coming back year after year on more medications and in more pain. Nobody goes into the healing profession to not heal and help, and yet there's this provide, whether it's the medical system, whether it's our— there's a lot of things. But implying or empowering patients to have access to real-world information and practitioners who are thinking, in a sense, outside their training and programming and adjusting to all this— like, even how you said the age of onset has come down so much. When— even when I started getting sick 20 years ago, I would ask my parents, like, What did you guys do? Like, who did you know growing up who had a chronic condition, who couldn't get up and out of bed in their 20s and 30s? My dad was like, no one. We've never— like, I had an uncle who was 70 and got cancer and died. But now it's— I have a significant— 40% of my coaching calls are for the parents of teenagers and adults who cannot take care of themselves. That didn't even exist 10 years ago.

Yeah, which by the way is another thing that we want to get into. You know, what are the origins? What causes it? It's today you're just— everyone is looking at it as symptoms and treatments as if it's— nobody knows where it's coming from in many of the conditions. Even if it's genetically prone to something, it doesn't mean, you know, epigenetics show us that it doesn't have to manifest itself. So what is the thing that triggers it, that makes it become a condition, is I think something that can be really researched with, again, patient-driven research of whether it's something that has to do with the lifestyle, chemicals, whatever. This is where big data plays. Any idea is okay. You can ask it. And then there, if there's like a commonality between the responses, then there is a signal of something that's interesting. And it's very easy to do. It's not complicated. But in terms of the gap, I think that the gap between between doctors and patients is really data today because we live in an environment that is purely controlled. So, you know, as a doctor, you are sworn to do no harm, right? And part of do no harm is to not treat with something that hasn't— not evidence-based. Yeah. Or that you don't have experience with, right? Basically, in a world where information is completely controlled, it's so costly. Conducting clinical trials is so costly and controlled by the large pharmaceuticals, information is very limited. Information is limited to what they are exposed to. So everyone is kind of operating in a world where there's no information and it's fine. You know, it's fine in the sense that there's no other solution because it's too costly. So here now, for the first time, you know, as a buyer, if you're an insurer, I think life will become more difficult for the pharmaceuticals, which are, by the way, pressured today by insurers who are buying the drug to prove effectiveness. There's like more and more pressure to provide this data. This is where real world is also going to play a significant role in drugs or what treatments are going to be bought by the insurance companies. So, you know, I'm always thinking of the idea of how mindfulness exists for thousands of years but until only when it started being researched kind of in a clinical way or scientifically and proven scientifically, that's when it started being a recommended treatment. And now it's like all over the place and recommended, right? So I think what doctors need is data. That's all. What everyone needs is data. And data will bridge the gap. And amazingly, they are very favorable of this, of having this kind of data. And very supportive of it. So I think generally on, on the right trend, especially given that people are today aware of the need to not to just rely on anything and to just do their own research.

Oh, you brought up a really good point. People are becoming aware in new ways that they have to advocate for themselves, that their solution, their savior, is not going to be handed to them by walking into their local primary physician. It's just not right. Yeah, not with a chronic thing. If you have a broken bone, you're all good, right?

True.

Wow, awesome. Thank you so much for being here with us today. Thank you for using your expertise in crowdsourcing and your life experience of having to advocate for your daughter into creating a community that empowers people to come out of— I mean, you used the word earlier, gaslighting, and gaslighting is a huge aspect of what goes on in the chronic illness community because people don't understand what they can't feel. And it's when you wake up every day in pain and every day nauseated, people typically don't believe you if you don't recover after a certain amount of time. So you're really empowering people to not listen to the people around them who are healthy. You're empowering people to know themselves and trust that what's going on, what they're feeling in their bodies, is tangible and real and then empowering them to act accordingly.

Right. It's extremely empowering to know that others are feeling like you do. And then when it becomes data, it's, it's way more empowering. This is really a good point psychologically for patients. And, and by the way, being degaslighted is like a very, very big step in healing.

Huh.

Like trusting yourself is a huge thing I like that term.

I mean, there's obviously— when you receive validation, you can come out of a situation where you're gaslighted, which I experienced for years in the medical community. But I hadn't thought of being degaslighted, really something powerful, and it is definitely. Yep. Awesome. Gail, thank you so much for being here. And how do people— obviously they can just go to stuffthatworks.com. Is there any—

it's actually.health. It's stuffthatworks.health.

Sorry about that.

Okay, stuffthatworks.health. There's a search button where you can look your condition— look, search your condition and join the condition. And if the condition doesn't exist, if it's not one of the 350 that already exist, then you should just open it and invite people to join. Once you have 30 people on board for your condition, the condition officially opens and data starts showing up.

Wow, awesome. All right, thank you for your time.

Thank you very much. It was great being here. Great knowing you. Yeah.

All right, so that will click—

that'll end.

Thank you so much.

Great talking.

Yeah, it was really intriguing. I really do love what you're doing, and I really did— when I went through the questions and stuff, I right away, I actually felt like— I won't say this on air, but you guys could potentially be replacing the diagnosis process because my diagnoses have actually come through me, like, researching and bringing in information to my doctors over and over again and saying something is wrong. Like, this isn't just chronic fatigue from a car accident I can't recover from. So I was the trigger in my own getting diagnosis And when I went to the site, I'm like, just like CPAs are getting replaced by AI and all sorts of industries are dissolving, to me this could dissolve the need and dependency for a patient to go in and start helping themselves figure out the next step with or without a diagnosis, just based on symptoms.

Yeah, people are doing it now already and, you know, everywhere on— but this will just make it easier and more scientifically based, more data-driven.

So awesome. Great. All right, well, I will be in touch with your assistant, and, um, this will go out in a couple of weeks.

So that's really awesome.

All right, thanks for your time.

Bye-bye.

Bye.

Hello friends, today's podcast is brought to you by these sponsors: Medical Bill Gurus, the experts at medicalbill Gurus are dedicated to innovative solutions for any medical billing scenario, which we all have in this community. Oh my gosh. With empathy at the forefront of their daily mission, Medical Bill Gurus is dedicated to being in the trenches with patients and raise awareness for the daily challenges facing them. From medical billing errors to raising awareness for their diagnosis, Medical Bill Gurus takes pride in speaking with patients every day and helping them find guidance on how to navigate our broken healthcare system. Their patient advocates are available to help reduce medical bills and assist patients with navigating a dynamic health landscape. I also interviewed Daniel Lynch, an founder of Medical Bill Gurus, in episode 111. In addition to helping you get money back from your insurance company, If you need help deciphering what health insurance provider to choose, and I have done this several times a year for years now, or you are looking for a clinic that is covered by insurance, they are a great resource for all things related to medical bills, figuring out which insurance provider you could or should have. They're an awesome resource. Again, I use them multiple times a year. Give them a call. All right, now on to the show.

Disease is contrary to life. Therefore, wherever disease exists, life must also fight to exist.

Good job fighting, Lyme fighters. Keep it up. We'll see you next time.

LymeVoice contains general information about medical conditions and treatments. The information is not advice and should not be treated as such. Okay, Lincoln? Okay. The medical information on LymeVoice is provided as is without any representations warranties, expressed or implied.

Okay?

Okay. LionVoice makes no representations or warranties in relation to the medical information on this podcast. You must not rely on the information on this podcast as an alternative to medical advice from your doctor or other professional healthcare provider. If you have any specific questions about your medical matter, you should consult your doctor or other professional healthcare healthcare provider. And for you, you consult your parents.

Okay?

Okay. If you think you may be suffering from any medical condition, you should seek immediate medical attention. You should never delay seeking medical advice, disregard medical advice, or discontinue medical treatment because of information on this podcast. Got it, Lincoln? Got it.