 Welcome to Ancestral Health Today, evolutionary insights into modern health. Hi, welcome everybody to the Ancestral Health Today podcast. And today we have with us the amazing Jen Brea. Thank you so much for being with us, Jen. Hi, Isabelle. Thank you for having me. Yes, absolutely. Loving this opportunity to get to speak with you. If you wouldn't mind if you could just, you know, introduce yourself. There's no better person than yourself to say who you are and let your audience get to know you. Sure, so I'm Jen. I'm a filmmaker and I was chronically ill, severely ill for the better part of a decade and made a film about it called Unrest and co-founded the Patient Advocacy Organization, ME Action, which advocates for people living with myalgic encephalomyelitis, ME, sometimes also known as chronic fatigue syndrome. Okay, wonderful. So can you tell us a little bit more about what ME, CFS, chronic fatigue syndrome is? Yeah, so I guess now, you know, that we're still in the midst of the pandemic. ME, CFS is very similar to what many people with long COVID experience. Most of us become ill after an acute viral infection, although it can also be triggered by something like physical trauma, surgery, pregnancy. And some people just have a kind of insidious gradual onset. And it involves a range of symptoms, the hallmark of which is something called poses or chameleons, which is a really hard thing to understand if you've never experienced it. But it's basically this phenomenon where if we exert ourselves cognitively or physically, we get this huge payback and we crash. And oftentimes people will be unable to leave their homes or their beds or resume their normal level of activity for days, sometimes weeks, sometimes even longer. In addition, a lot of us have POTS or orthocytic tachycardia or POTS, dysautonomia, so dysfunction of the autonomic nervous system. Other symptoms include cognitive dysfunction, like forgetting, you know, having a kind of time remembering things, forgetting where you are, running red lights, like not being able to read or think properly. And as well as symptoms like pain and sensory sensitivity, so sensitivity to light and to sound. At one point I had like 40 symptoms. It's a really, really complex presentation. And it varies a little bit from patient to patient, but those are very common. And it seems like for some reason, perhaps due to persistent viral infection or perhaps due to the way our immune systems respond to a virus, or perhaps due to direct damage to the tissues of the body or to the brain, we don't recover. And many of us, if we're sick for longer than six months, may remain ill for the rest of our lives. Yeah. So what are the distinctions maybe between the different levels of where people can be, one experience and one being diagnosed with MACFS? Yeah. So these words are really unsatisfying, right? So we have this concept of like mild and moderate and severe. And then even within severe, there's like very severe or profoundly severe. I would say that for a lot of people, it is the quote mild. And, you know, mild means I can still work, but probably that's all I'm doing. And, you know, when I get home, I am in bed resting. I am in bed in the weekends. I don't go out and see friends. I don't spend the time with my family that I want to spend because in order to maintain a 40 hour work week, let's say I need to conserve all of my other energy for that and to recover from the effort of working. And then that sort of then, but even those people can experience things like sensitivity and sensitivity and all of those kinds of symptoms. And then that kind of extends through, you know, moderate into the severe. And that's really where I was. We also call it a 25%. So 25% of people with ME are in this category. And those are people who are homebound or bedbound. And so, you know, many, if they leave the health that might require the aid of a wheelchair. And then at the very severe end, people are bedbound 23 hours a day to 24 hours a day. And at the very extreme, have to live in dark rooms, can't tolerate being touched, can't tolerate being spoken to you. So that's a form of profound isolation that I think is very hard for people to understand. And then there are a subset of patients in that category who ultimately die from the illness. It is rare, but it definitely does happen. And people can have multiple organ failure or lose the ability to eat and sort of no longer being able to feed, eventually pass away. And, you know, patients in those states really have a hard time accessing medical care because doctors still disbelieve that they're sick. So it's a really, you know, profoundly devastating situation. And I would say that no matter whether you are in the mild or the very severe category, it also is your life in every conceivable way. Yeah, absolutely. So what sort of biological abnormalities have been found so far? Oh, gosh. That could explain not only the symptoms, but the, you know, the wide range of experiences with those symptoms. And even as you were saying, you know, some of the symptoms that are experienced on the severe end, some of those are also experienced for much shorter period of times on the, you know, quote, unquote, mild and like the touch sensitivity and the light sensitivity and having to be in a room like that for, you know, hours at a time as opposed to consistently. So the range is so, so big. Yeah. Yeah. And I think on the mild end, one thing to mention is like, so another symptom, and just full disclosure, like I actually had a profound recovery and so I'm trying to remember some of these things because I haven't experienced these symptoms in a while. But one of the things that I think patients who, you know, all along the spectrum, including mild patients experience is something called sensory overload. So there's a, there's a way in which having too much sensory information entering the brain can cause someone to crash. And so, you know, that might be things. And I think it's important to say that because I think many people who are mild might not even know that they're sick, but it's like, you know, going into a crowded room, let's say, to a party or work events, and suddenly, you know, you're fine. But then too many people are talking to at once. And then suddenly you hear a clanging of, you know, dishes in the corner and then someone comes and brushes past you all at the same time. And suddenly you have this kind of cognitive meltdown because your brain literally can't process that much information at once. And so there's a kind of information, sensory processing thing that I think is quite common among patients. And so, you know, this might even appear to people sometimes as introversion, but it's actually, you know, it may not be if this is something new for you and you haven't experienced that before. But you are asking me about sort of the biological thing that's so much found. And I wanted to be really careful because I think oftentimes in scientific research, we find something that's associated with the condition. And then people might fixate on it and think, well, maybe that's the path of physiology. Maybe that's, you know, there's a lot of different words here, right? There's cause, right? And oftentimes I mean, well, what's causing the symptoms or what's actually causing the illness state? And those may be different things. And we can find an abnormality, but we don't know, is that, you know, there's like the triggering event, right, which is the virus, but that's still an issue now. And if we have an abnormality that, you know, might seem to be associated with symptoms, is that downstream of the cause or is that actually what we're looking at? And even if it's not the cause, if we treat directly, might we make an improvement in symptoms? And so it's, I think we're at a state now where we don't really know where we are in the causal chain, which arrow is pointing in which direction. And so it's, you know, I want us all to just be like very open-minded about it, because there's so much that we still don't know yet. I would start with natural killer cell function, because that was one of the first reliable, like one of the first kind of hard findings that we found. A lot of people have something called low natural killer cell function. And that sort of pointed to, you know, an immune abnormality. There's been different abnormalities found in terms of kind of, you know, cytokine profiles. And a lot of things clinically found in patients that are not necessarily true across the entire population. But, you know, some people will have elevated auto antibodies to specific receptors or, you know, like the sort of subsets of auto antibodies that may be found. And then I think for me, one of the most common sort of connecting findings is this finding of cerebral hypoperfusion. So that is insufficient blood supply to the brain, which has profound effects on the way that our brains function, how we can mobilize certain cognitive abilities or not. And then as well as direct damage. So something called a single point, things called single point white intensities, but hyper intensities of in the white matter also have found anomalies in the gray matter. So a lot of brain findings and also some studies that suggest that patients have intracranial hypertension. So elevated pressure in the brain. And that can be due to altered blood and cerebral spinal fluid flow. It may also be due to brain inflammation. And information of the brain is something that we've also found in, you know, various brain imaging studies. And, you know, what's interesting about this in part is that the name for the disease, which was coined in the fifties following, you know, a string of outbreaks of an unknown virus is myalgic encephalomyelitis, myalgic, meaning pain of the muscles. And then encephalomyelitis, meaning inflammation of the brain and spinal cord. And it took, you know, the better part of 70 years, but we actually now have direct evidence of inflammation of the brain. Yeah. Yeah. There's a lot that it's unknown, but it seems like the research is moving forward much faster than it did in the, you know, previous 50, 70 years. The other thing I would say is that this is sort of has often been described as a multi-system disease. And what's meant by that is that it seems to affect every organ system. So patients can have, you know, can experience things like astroparesis and other kind of alterations of gut function. Patients can also, you know, experience alterations of heart function. So I mentioned many people have POTS and that's a condition where when you go from laying or sitting to standing, your heart rate, choose up dramatically. So you might go from a baseline heart rate of, you know, 80 beats per minute and then you stand up and it's over 140. And so, and there's also been findings of preload failure. So cardiac preload failure, which is, you know, I'm forgetting which chamber of the heart doesn't fill, but the one that's supposed to, I think, first doesn't fill sufficiently. And that's not to be a potentially autonomic dysfunction. And, you know, I mean, really like the experience of having this is like my brain doesn't work, my heart doesn't work, my gut doesn't work, my immune system doesn't work, my muscles don't work, my legs don't work. And so it really feels like your entire body is falling apart. Yeah. And, you know, there's a lot of people that express that feeling, being young and feeling like, you know, what you imagine being 95 feels like with everything failing at the same time. And it's something that you can't see in a person unless a person is, you know, bedbound and very severe. And even then, you know, there is no test that you can clearly see what is happening to that person that's causing, you know, that state. So really, really hard. Absolutely. And when you get to that level of severity, you're too sick to go to the doctor. Like, if you're leaving your house, it's, you know, it may be, you know, in ambulance transport, right? And so the physicians, because, you know, nowadays, they don't make health calls typically, they actually don't see a huge part of the population at all. And so, you know, perhaps that they saw the most severe patients that might be convincing to them, perhaps, I don't know people who've been, you know, that ill and in hospitals and they're still told that their condition is psychosomatic. And so, you know, but most doctors don't ever see that level of severity in their practice. And even if they do, it's like a patient, you can sit up for five minutes for collapsing. And sometimes that's how long an office visit is. And so you don't actually see that. You don't see that your patient comes in and then has to, you know, lay prostrate for the next two weeks to recover from the effort of coming to see you. So I think there's many, many forms of invisibility. And, you know, in addition to which our labs come back normal, like the clinical laboratory tests come back normal, you can find out a lot about us through the types of testing you can do in a research setting, but the commercial clinical labs come back normal. And so I think for most physicians, I can't see any obvious evidence of disease with my naked eye. My, you know, quest lab report print out doesn't tell me anything useful. Therefore, in the best case scenario, I can't help you. And many scenarios, you're fine. You know, yeah, that's, that's the most frustrating thing to hear is congratulations all your labs are normal. And you're like, I don't feel anywhere near normal. Yeah. Yeah. And we've been experiencing that for a very long time. But fast forward to 2020. And we have the COVID, you know, COVID happens, and we have a lot of people that are infected with COVID. There's a lot of conversations within the health community about being healthy and not having risk factors and especially being metabolically healthy. But we have a lot of examples of people who were quote unquote, perfectly healthy athletes experiencing long COVID. Tell me a little bit more about how that comes about and what the relationship to MECF assets. So there's an Australian study from, I think the early 2000s that had a strong design. And it wanted to know how many people remained ill after an infection. And actually, their hypothesis was that if you get an infection and you remain ill, the strongest predictor of you being ill is going to be psychological factors. So they came in with a model of post viral illness that was primarily psychological. And they just proved their hypothesis. So I think a very, very strong study and an example of science working when it works. And it was a community study. And they followed people who were infected with three different pathogens, completely different pathogens. So Epstein-Barr virus, which is a herpes virus, it's a DNA virus, Q fever, which I believe is a bacterium and Ross River virus, which is an RNA virus. And what they found is that regardless of these three very different infections, six months later, 11% of people remained ill. And the strongest predictor of whether you remain ill was the severity of the initial infection. So when COVID hit, I remembered the study and I thought, okay, this is a severe virus. It is highly inflammatory. It causes death and a significant portion of those infected. And you know, even though it's a quote novel virus, if pathogens that are that diverse can cause this, there's a very high likelihood that we'll see post-infectious or post-acute infectious symptoms in COVID patients. And so I was online like many, many patients were, and I just went to the mattresses on this topic, as many in my community did, trying to warn people because the public health authorities were saying like, you know, okay, if you're old, if you have diabetes, like this is dangerous, otherwise, you're probably going to be fine. And that definition of fine was being entirely defined by what people were seeing in the ICU. And as though, you know, which is like one extreme end of what can happen with COVID. And they were just not seeing, not monitoring everything else. And, you know, I think that there is some sense to that you're in a crisis and you're triaging and you're focusing on people who might die. But I think that there was a, you know, a total blindness to the rest of the picture that didn't have to be. And it didn't have to be in part because ME, ME CFS has existed as an ITD code as a disease category for, you know, over 80 years. But then there's also the fact that, you know, this, you know, we saw this with the, you know, the 1918 flu pandemic. We've probably seen this in every outbreak of any infectious disease ever. And I think that part of what's happened in the West is that, you know, with hygiene, public hygiene and medical hygiene, and with mass vaccination, particularly following the polio vaccine, we just forgot what it's like to have an infectious disease burden. You know, we have a seasonal flu and, you know, obviously there's been specific pandemic such as HIV, but in terms of having communicable diseases that, you know, people might get in childhood and die from that, you know, come through and wipe out whole towns. Like we just don't have that memory anymore. And so I think given that, you know, I would suspect that in the past, you know, perhaps sometime before medicine, like we knew that you could get an infection and it could cripple you for life without killing you. And somehow that lesson was forgotten by medicine and by society as a whole. And I think as a result, we were completely unprepared for the epidemic of long COVID. You know, fast-forwarding a bit. I mean, my hope is that we'll learn and that we will eventually sort of, you know, in every country's pandemic response plan will plan for both the acute cases and for the long-term ones. And to know that the long-term cases are often going to be among those who are young. And so it's just a different way that this manifests. You know, if you're older, then perhaps you're more at risk. You know, be old and young are often more at risk of death from infectious disease. But that, you know, between old and young is the entire rest of the population. And they are also at risk of something profoundly life-altering. The severity of ME is, you know, and this is according to a World Health Organization measure called the daily adjusted life year index, I think. And when you compare this to cancer, to MS, to, you know, many conditions that are more commonly known in the sort of collective imagination, the disability that patients experience is far more severe. And I don't think it has to be. I think it's because it's largely untreated that it's not severe. But it is. And so I think it has to be taken seriously and has to be understood as part of what happens when people get defections. And now, you know, years later, we're discovering that, you know, just as in the Australian city that I mentioned of ABV and Ross River and Q fever, one in 10 became long-term ill after the infection. We're finding the same thing with COVID one in 10 become long-term ill and develop long COVID. So, and I, you know, and I also think there's a lot of cultural ideas tied up in our inability to see this. I think people want to believe that they're invincible. We have ideas about what youth is. And I think people don't want to see it. They don't want to believe that it's possible. And so it just makes it much harder to convey this. And, you know, a lot of long COVID advocates have conveyed to me that they feel like, you know, how political the pandemic has become and also just general fatigue of it. Like people want to forget about it and move on for lives has made it much harder to get the word out that, you know, a lot of people may be at risk of developing a long-term illness. Yeah. And what I see a lot of is the focus on the acute portion of the illness, especially with that fatigue that people experiencing, you know, saying that we do not need to have measures in place like we did when the pandemic was at a tight without a more clear understanding of, you know, how some things do need to be in place for the long-term consequences, even though, you know, the risk may be to a percentage of the population that the population as a whole and how do we take care of those people as well. Yeah, absolutely. And I'm sorry, I would also just say that like the vaccine is not 100% effective at preventing long COVID. Some numbers that I saw was that it was only reduced your risk by 15%. And so I think, you know, among some people, there's a sense of, well, you know, I get the vaccine, I get the boosters, therefore, I'm not at risk of this. And that's absolutely not the case. Like you need masks and indoor ventilation or being out of doors in order to protect yourself from developing long COVID. And there's also, you know, the fact that, and this is very hard to talk about with nuance, but the fact that, you know, there have been many cases of people who've gotten long COVID following the vaccine. And so it's a really complicated landscape. You know, I would say for anybody who kind of bristles at that, it's a medical intervention, you know, whether we're talking about medication or surgery or even latex gloves, like every medical intervention carries the risk of side effects and adverse events for some people. And for whatever reasons, some people's immune systems, you know, can't tolerate the vaccination without having a reaction that, you know, potentially triggers the same, you know, same or similar kind of disease process as the infection itself. Yeah. And it's a very delicate topic because the nuance of it needs to be explored really deeply. And it's, it's a very divisive topic that is that people view only in light of their own experiences, right? So and I think that's where, you know, we need to really be open to the conversations and be able to put different lenses on so we can really understand the death of the problems and the issues and how we can all collectively mitigate within our own circumstances. Well, and I think we shouldn't be afraid of having conversations like that. I mean, I think, you know, because I think for some people that it often goes to, then, okay, well, then what do we do for the whole population, right? Do we vaccinate or not? And I don't think that that's really the question. I think we can, you know, I think the question is finding it, well, who's at risk, right? Like, why are some people having adverse events? What might be different about them as compared to the general population? Are there risk groups we haven't identified? And I think if we can get there, then we can actually apply medicine thoughtfully and help people understand how to protect themselves. Yeah, absolutely. So talking about nuance, let's pivot a little bit to ancestral health. Tell me a little bit about how you found the ancestral health symposium, the videos, when did that happen and, you know, how did that influence you? Yeah, you know, I was, I was trying to think about it. It was before I got sick. So before I actually, you know, I don't know if it was before my viral onset or after because I had about a year where I thought I had recovered even though I was actually getting progressively worse and didn't realize it. So it was somewhere in there and I was actually organizing a TEDx conference. I was a graduate student at Harvard at the time and I was organizing a TEDx and the theme was Thrive and it was all about the human body and health, immense well-being, but it was really focused on sort of what are, how should we live and what are the ways that, you know, the impact of how we live on our health and how can we all kind of nurture good health for the long run? And so, you know, that kind of thinking had been a part of how I was raised. Both my parents are actually chiropractors and natural paths and so, and I, you know, I remember my father getting really into ancestral health or ancestral thinking. I think, you know, when I was in high school, so I think before the ancestral health symposium had been organized, but I was always interested in that and I don't remember how I came across the talks, but I think it was either the first or second year and I think the conference was in Atlanta. Does that ring a bell at all? I was a part of the first. Yeah, but it was really 2012. Yeah, well, it was really revolutionary for me because, and it was also at the beginning of the quantified self-movement. Like I was in Cambridge and so a lot of people at MIT were somehow involved in that and it was just very popular and so I started tracking myself and gathered lots of data. I was doing a master's degree in stats in addition to my PhD and so it was just kind of a people to me to like gather data and study myself and so that was a part of that kind of ecosystem and I remember, you know, learning things and being exposed to new ideas and every, every talk was just fascinating because these were things that we were not talking about. I think in society and we're not talking about in the medical system and, you know, I think I had some sense that I was not in the health I wanted to be in, but also at that point it was too vague and not really life limiting in the way that I would go and seek medical care and so I think that's what really drew me to it and also just this, you know, realizing that when I slept well and in darkness and I was in nature and in sun and I ate a certain way and all of these things and I moved a certain way I felt better, you know, and so that really appealed to me. Yeah, so tell me a little bit more about even further back. You mentioned that your parents were chiropractor and naturopath, so tell me a little bit about growing up and adolescence and, you know, the state of your health during those times. Yeah, well, I think like, you know, among that set of people that like wants to be healthy and is super focused on like health and well-being, I think what is considered health and well-being has evolved a lot over time or, you know, I mean, there's some certain things I think still remain, but I remember growing up in New York in the 80s it was very much about like our health food store, sprouted bread and, you know, just like there's certain foods that were just never allowed in the house that I think would have been thought of as standard and, you know, in that in those days it was like cats and crunch and coke and whatever. But I think like there was definitely a tendency to look critically at conventional medicine and a tendency to believe that working with a body in a gentler way and in using nutrition and supplements to create a better state of health, that that would, that that was the right approach or at least the right frontline approach, you know, and I would say growing up like, you know, my parents would have solutions to things that were not good on some medicine that would seem like magic, like how to shorten a cold or how to, you know, I'm trying to think, oh god, I have to even go into this because some of it will just sound totally insane, but like it was just, as a child it was just like very clear to me that some of the things that they were doing really had value and and some of those things were also just based on like traditional remedies and things that people had probably been doing for hundreds of years to deal with, you know, the kind of typical things that one might encounter in terms of being, you know, being sick as a healthy person. You know, I would say that growing up, I mean, we can go into this later, like it's only now that I've gone on this whole journey that I look back at my childhood and realize that there were some things that indicated that I wasn't totally quote normal and might have been at risk at developing a severe illness, you know, in my 20s, which is when it often hits people, you know, I got frequent infections, there was a period of time where I just got bronchitis all the time, and I was definitely sick and out of school more than the average person, um, at least as a child that that stopped once I was in middle school. Um, and then, um, you know, uh, this might be sort of getting too far ahead of the narrative, but as a child, you know, I definitely had signs of some may call it Heather Cord syndrome, um, which, you know, in my case, I had a really thick phylum. So the phylum is a piece of kind of tissue that connects the end of your spinal cord to your sacrum. And I had mine was thick and not really very elastic. And, um, that causes a bunch of symptoms and kids that I definitely had, I think kind of mild signs of that were simply sort of thought of as like behavioral or no big deal or things that I never would have told anyone because, you know, when you're born into your body and you grew up in a body, like you don't know what's normal and you don't know what other people experience, um, unless it changes. Yeah. And I can, I can completely relate to what you're saying because I had the same experiences and a very similar, um, environment, but then there were the signs right there. But I'm trying to, you know, I'm trying to point the fact that you were in an environment that was very healthy that, you know, did very much of the right things and you still get sick. You were still sick. Um, you know, you still had that, um, terrible illness after a viral infection that were signs that were there, that were there from the very beginning. And that's often a factor that is, um, very much ignored. Um, and, um, that, that was what I was trying to link also to long COVID and the, the belief that's very prevalent that it is avoided by avoiding certain risk factors. Um, I think that's very smart. And I think, because I, you know, one of the, when I was talking about like our beliefs about like youth and, you know, and health and what have you playing into our idea that like the people who are young and healthy can't get sick, I think, you know, the word that I thought that I wanted to mention was, was ableism. And I think that's a really helpful concept for understanding at least aspects of this. And I think the other aspect that you're mentioning that I think is also a part of ableism is this idea that if we just do everything right, like if we eat well and we sleep well and if I watch all the ancestral health talks imaginable and I follow everyone's good advice and I just live perfectly that, um, you know, I can avoid certain things or that that will heal me. And I'm not saying that that's like a common perception in, um, in this community. But I think more broadly, there is this idea that, you know, it's almost religious. Like if I just live the right way, then everything will be okay. Um, and that's not true for most people. Um, it may not be true for anyone. I don't think there's any guarantee of that. And oftentimes whether it's something within our own bodies or something external to us, there's just a lot that's, you know, perhaps not in our control or that we don't understand. And I think we have to sort of deal with that complexity of, you know, yes, like doing the quote, right things can get us a lot, but that the right things might not be the right things for everyone. And also that even so there may still be other things that we encounter that require a different approach. Yeah. And going back to the other end of the nuance spectrum, there's also a lot of disbelief that any interventions that involve ancestral health or health in general are going to be at all relevant to managing, you know, not only this condition, but others as well, that the only solution is possibly pharmaceutical or surgical interventions. So can you elaborate a little bit more on how you have been able to merge the two at what point have you done that and how that has oscillated throughout the course of your illness and your remission and, you know, the scope of what you have experienced in terms of the two is basically what I'm asking. Yeah. Well, I think one thing that was clear to me or one thing that I kind of held as a truth was that with some of the interventions that, you know, may be popular or common in a community like ancestral health, it kind of doesn't matter if it makes you feel better or not. Like, it makes you feel worse. You should listen to that. But there's a lot of things where I was just like, even though I'm sick with this one thing, I'm still a human with a body. And I know that these things are good for humans. So to the extent that I should do this, I should, to the extent that I can, I should still do these things because, you know, even if they don't make you feel better in a global sense or even an immediate sense, you know, I want to be well and I also don't want to develop other conditions. And so, you know, I think these are tools that, you know, are potentially useful just to nourish and support your body as best you can so that it has the resources to heal as well as able to and to defend itself from other things that, you know, could potentially arise. So I think there's that, right? Like, it's like, just because it's not, something might not be a solution to a specific illness doesn't mean that it's not so important. And, you know, I would say though that like, because now I might just sort of trying to like not weave the science of my own story too closely, because I think there's a lot that we don't know scientifically. You know, but if this is a condition where people have low blood flow to the brain, that means that they are hypoxic and they're nervous tissues, meaning they have low oxygen supply. When you have low oxygen, your body is, you know, eventually forced to use glycolysis or anaerobic metabolism to derive energy, which produces a lot of waste products, and also can ignite inflammatory responses in the body. And so knowing that your brain doesn't have a lot of energy, knowing that there might have been direct damage or, you know, a kind of ongoing trauma to the brain. What's good for brain health? You know, things like intermittent fasting, things like, you know, eating a diet that is higher in fat and lower in carbohydrates. And so those are things that, you know, definitely helped me when I was sick to have like, have more cognitive function and more neurological energy. It didn't help me with like the physical movement part, and we can talk more later about why. But I do think that I was able to spare some of my function and live a higher quality of life by like through fasting and through, you know, eating in a certain way. I want to be really careful because whenever I talk about this, there's always patients who are like, but that actually feel horrible. That doesn't work for me. And I think that that's true of almost any intervention. I also think there's people who can't imagine doing it. And so they don't know how they might feel if they did. But, you know, for me, that was really helpful. And I actually did attend a water only fast early in my illness and had, it was not a remission by any means, but it got me out of a wheelchair. And I, you know, for three months, I was able to walk a mile before I had to call it quits. And I could do that, you know, several times a week. And that was a huge, huge improvement over where I'd been before. It didn't sustain itself. And what happened is I was exposed to mold, which I become sensitized to. And I just went downhill and fasting never worked again in that way. But I think it, you know, had some effect in my body, whether it was helping me to heal certain tissues or kind of turning over certain parts of my immune system so that it was less reactive. But that was really helpful. So there have been things like that. But I also think that there are limits, right? Like, you know, all the blue light blocking glasses and kind of dark therapy in the world can't help you. If you have insomnia that's due to neurological cause where, you know, circling with them isn't working in some kind of more fundamental way. And so, you know, I sort of, you know, want people to understand that there are dysfunctions in the body that I think can be impervious to some of these interventions that work really well for people with other conditions or people who are quote, well. But I do think many of them are worth trying. And, you know, a lot of them can be like low risk, low side effect. But some of them are not, right? There's there's things around movement and things around other things that, you know, really have to be individualized and specific. And so it's an incredibly like complex thing to navigate. And everyone is different or at least different people respond in different ways. But I do think that there's a lot here that can help people to live a higher quality of life. Yeah, absolutely. Let's talk about. Are there interventions that I don't know about that you think are like particularly like useful or helpful? It's so hard, because like you said, it's so individual. I think that one thing that seems to elicit greater response is the stacking of interventions rather than the single interventions at a time. But also being in a, you know, a more severe end of the spectrum, it's incredibly difficult to apply one thing as a, you know, never let alone multiple things at the same time. But yeah, that seems to be in my observation, the approach of doing things together first and then removing things in order to see if there are negative effects when you do seems to be much more effective than adding one thing at a time. Well, and I wonder if one is more mildly affected if your body actually has more resources to respond to the interventions and to just to self-heal. I do think, you know, one of the things that we kind of know anecdotally, we know that if you don't rest and you don't pace after you get a virus and you're at risk for this or you develop a kind of post-viral condition, you can get much, much worse. But we also have some anecdotal evidence that people who did get sick and within those first few months or that first year rested aggressively that some people were able to achieve remission. And so I do think that there is something to the body's ability to heal, that if it can be supported well, it can help to prevent a long-term illness in some people. And I think that that's really important. Like I think some of these interventions, you know, may help to move you along the spectrum towards a higher level of function or a higher quality of life. But I actually think where they might be most profound isn't helping to prevent people from getting sick in the first place. We don't live in a culture of rest. There's a lot of discussion about prevention, but rest is not part of that discussion in so many circles. And you know, on the contrary, there's a lot of discussion of don't let a sickness, an acute illness, get you down, get back in the gym, get back to you. Yeah, you thought it was like heroic if you overcome it. And like I think this may have changed at least somewhat, but like it used to be like if you had a colder flu and you showed up at work and you were still working, somehow that was like the heroic thing to do. Or you were like, I'm not gonna let my team down. I'm gonna show up at work and I'm gonna get every time you stick when you're working. And I think, I mean, just nuts, right? But I think I think there's, yeah, our culture around illness and sickness doesn't make sense and actually contributes to more illness. Yeah, it absolutely does. So yeah, along the lines of interventions, you were mentioned in fasting and that's something that at one point was absolutely terrible for me. I got me so much sicker and I just could not do it. And then at a later point, it was a fantastic intervention. So it's just it just depending on what the factors were at that time. So let's talk a little bit about, you know, the resting factor and how that plays into sickness behavior in ME-CFS and lone COVID. And if you can explain for the audience first what that is, because I know that it'll be a lot of people that are not familiar with the term and also the way the term sounds makes it sound, even though it's it is a scientific term, makes it sound as it is a choice, as it is a behavior that you choose to exert. So let's talk about that. So I actually know next to nothing about sickness behavior. I had to look it up. I mean, I've heard it so many times. And part of why I think I never learned anything about it is because it was, you know, sometimes in research, like, used to explain the condition when I just, you know, felt strongly that that was insufficient. But I mean, I believe that it describes like the set of behaviors that we engage in when we're ill, like not wanting to move, not wanting to eat, sleeping, all of these things, which are probably protective behaviors when you're recovering from an acute illness. And I was also reading that there are specific kind of inflammatory molecules that will trigger the brain to have the body engage in these behaviors. And we see, we see this in people with ME, but I tend to associate that with the acute illness in the first few years, that people may actually still be fighting a persistent infection. And so their bodies continue to engage in this behavior. And one of the things that was found is that after the first few years, people's immune systems kind of, you know, one researcher said that they exhaust, but they basically kind of stop fighting or stop behaving as though they're fighting an infection. And then actually a lot of people stop being able to mountain immune response at all. So in my case, I just stopped being sick, like I sick, meaning like I stopped getting colds and flus and those kinds of things. If someone in my house had a cold or a flu, I would feel awful, but I would not mount to like a sickness behavior response or a normal immune response. And so it seemed like at some point, my body stopped being able to do that. Oh, wow. That's that's fascinating and very interesting. It is used also in the community to describe symptoms because it's what is used in the literature. And that's, you know, I know a lot of people give me flak for not liking the term because it is used in the, you know, in the clinical and the research literature to describe the ongoing symptoms that are characteristic of MECFS and long COVID. But what the problem that I have with it is that when people outside of academia or, you know, medicine or the community that has MECFS hears that term, it is very easily associated with a behavior that seems to be or that can be interpreted as psychosomatic. When in fact, it is a very physical response. Yeah, I mean, these coins get, so I'm sorry, these terms get coined by academics. And, you know, it's to develop a common language to help facilitate scientific conversation. But I think they very rarely think about what will happen when those terms are in the wild and how they'll be perceived or, you know, used by others in ways that might not conform with their initial intention. You know, it's interesting because I would have, you know, I could imagine that people with long COVID might relate to or experience that more. But I think that that is more a feature of the earlier part of the illness. And, you know, according to at least one researcher, you know, that's kind of roughly the first three years. And, you know, there's nobody who has had long COVID for longer than that. And so I think, yeah, I mean, but it does, at least in ME, it does seem to shift and become something different after a certain number of years. The other place where I've heard it used is in relation to the vagus nerve, which is one of the cranial nerves. And has, you know, been theorized to be a part of this condition and a part of the autonomic dysfunction. And I think there's like, perhaps some overlap in symptoms or at least the words we use to describe them when we're talking about normal healthy sickness behavior, maybe we can call it a sickness response or, you know, kind of, you know, virus fighting protective physical responses to an infection. I'm not sure what a better word is, but it's like, when it comes to sickness behavior, like a healthy normal response, and what happens when you have autonomic dysfunction, I think that there may be overlap in symptoms or again, at least the words we use to describe them, right? Like, you can sleep a lot because you're announcing a normal sickness behavior response, or you can sleep a lot because you have this autonomia. And that's, you know, perhaps not the same thing. Yeah, absolutely. And feeling like you don't want to eat because you're ill is different than having gastroparesis. Yeah, yeah, absolutely. So tell me a little bit about your remission story. How did that happen? For people that haven't seen your film, if you can do a little bit of a summary of, you know, what led to it? And what have you been doing since then? Sure. So I was, so as I mentioned, I made a documentary film called Unrest. And it ends in this really ambiguous place. I mean, the story of the film was really, my story at least in the film was really about being a newly ill patient and learning how to be disabled, learning how to live with a disability and also to be disabled as an identity and as a member of a community and as something that was, you know, a source of community and strength and purpose. And by the end of the film, I'm still sick. I'm still very sick. But I have found a lot of treasures along the way in terms of the people that I've met and the experiences I've had. And the film, prenat Sundance and had a theatrical release and got a huge amount of press. And what was interesting about this, it was sort of twofold and we had tons of screenings. We had a whole impact campaign with lots of community screenings. And I probably met thousands of people in person and received emails from many thousands more. And I had a lot of people telling me, I don't have Emmy. I don't have your diagnosis. I have fibromyalgia or either down syndrome or pots or, you know, a number, actually a select number of other conditions. But, you know, pointing to the screen in the movie theater, like that is my life. Like that is what I live every day. And so that in conjunction to being put in touch with people who had their resources to see a lot of specialists and to receive multiple diagnoses, I began to wonder if these conditions might be related, not only in the sense that, you know, oh, we are all living with chronic illnesses. And so we feel a sense of solidarity. Because I think that was there. But the sense that, like, actually many people living with these conditions have multiple diagnoses. They just don't know it yet. And they haven't been diagnosed. Because most people only have the resources or the local care to get one diagnosis, not to get five or six or seven or 10. And I think 10 is what I ultimately ended up with. And so as I was doing this, I also ended up getting surgery for thyroid cancer. So I had a form of thyroid cancer that is sort of not considered cancer anymore. But I waited a long time to have a surgery for a number of reasons, in part because I had some real concerns that it might make me worse. And there was nobody who could talk to me about what those risks were. But I had, you know, fulfilled my obligation. I promised to make an internship film. And so I had fulfilled those obligations and went to have surgery. And after surgery, everything fell apart in an entirely new way. You know, three years, I would periodically go to the ER when I would have these exacerbations where I would totally collapse, not be able to walk, or I would have this intense, I didn't have a language for it at the time, but you know, a kind of pain or swelling in the back of my head is what it kind of felt like. And I would become totally stiff, like my whole body would stiffen up and I wouldn't be able to move. And but what happened after the surgery was that I would have these really long apneas, and people hear apnea, they automatically go to sleep apnea. I had no idea what was happening when I was sleeping, when I was having apneas, when I was fully conscious, particularly if I was laying flat on my back. And they could last for over a minute. I just, I would be totally emotional. I can move my eyes, but not thrust into my body, and I wouldn't be able to breathe. And then that progressed to I if I would try to stand up, I would block out clouds on the floor, not breathing. So the combination of being unconscious and not breathing is actually quite scary. And I think we know potentially quite dangerous. At the same time, with the release of the film, I'm sorry, this is why I was talking about the press. There was a neurosurgeon who reached out to me. And he had actually heard my story on NPR. And he's a neurosurgeon, a vascular neurosurgeon who specializes in treating people with other genocidal syndrome, ADS. And he heard my me describe my symptoms as I describe them in my TED talk. And he said, you sound like one of my patients. And he went and saw my film. And in my film is my MRI. He looked at my MRI on his iPhone in my movie and saw an abnormality that all the radiology reports had missed. And so I started to consult with him. And then through him and through a patient named Jeff Woods, I started to suspect that I had cranial cervical instability, which is a condition where the ligaments in your neck become compromised, such that you're no longer able to hold your skull and stable relationship to your first vertebra to C1. In my case, it actually wasn't the ligaments. It was a joint capsule that had become compromised. And so I, and why that's important is that the imaging that's used to diagnose this, which is typically a cervical MRI, was completely normal. I didn't have a normal measurements at all. And so it really is a miracle that I was diagnosed at all because even, I'm sorry, this is the ambulance behind me. It really was a miracle that I was diagnosed at all because even the top specialist in cranial cervical instability would have probably screened me out and told me I didn't have it. But my symptoms were so severe. I had become so clear that my my internist was able to get me in with a specialist. And he, I think, was at first doubtful that I had it because I didn't meet his criteria. But he uses a test called the invasive cervical traction test where they basically lift your head up. I'm just assuming that there's people who are probably community or medical doctors. I'm forgetting what it's called. It's like, you know, some do one or two people's names, but it's basically this sort of apparatus that goes around your head with screws. And then you lift the head up with a through a pulley system. And as my head was being progressively lifted up by adding more weight to it, at 30 pounds, my symptoms disappeared entirely. I felt well, I felt normal. I felt absolutely as I should be. And in that moment, I realized that this instability, which in my case was causing cranial settling and causing my skull to settle onto my spine is what was causing all those symptoms of me all along. And that was very clear to me. Now I have to say that doesn't mean that this pathology is driving those symptoms for all patients. We don't know how many people this affects. But for me, it was just so crystal clear. And I knew that if I had a fusion, and that fusion can mimic what the traction did, that I would be fine. So that is what happened. Unusually, so it's very common to have both cranial cervical instability and tethered cord syndrome. And what I would say, or what I believe that tethered cord syndrome is the first pathology that you have it as a child. And as you grow, your spine develops in such a way that it tries to accommodate the tether. So you have this increased tension on the spinal cord from the tethered cord from a phylum as either too thick, or is not stretchy enough, or is inappropriately attached to the inside of the of the canal. And as such, as you as you grow taller and develop, you start to try to accommodate it in order to basically keep your spinal canal functionally as short as it possibly can be. And so I think some people develop scoliosis. Some people develop severe kyphosis of the thoracic spine. That's what happened to me. I had hunched up shoulders. My mom would always tell me to like she thought it was because of my backpack. And I think nowadays, you know, a mom might say it's because you're wearing your phone too much. But this is actually like something that is a developmental condition that is happening in response to the tethered cord. And she would always tell me to put my shoulders back, but I literally wasn't unable to until I had had my surgeries. And so I do think that having the tethered cord because of all of the changes to the spine that happens as you grow, I think it makes the cranial topical junction, which is already, you know, one of the most vulnerable parts of the human body, even more vulnerable. So that things like an infection or like a traumatic accident can kind of tip people over the edge into like, you know, blatant pathology, where they start having severe neurological symptoms related to the cranial topical junction. And so a week, which is the unusual part, a week after my fusion, I had the surgery for my tethered cord. So they stiffed my phylum. And I felt amazing. I felt relaxed in a way that I never had. And these symptoms that I had all my life, particularly around, you know, just being able to walk properly and having, you know, I always had urinary urgency. I didn't know that, like, you know, I was type of person where if I had to pee, I had to pee like pretty quickly. But it was, it was relatively subtle. It didn't lead all to my life in any way. And suddenly, I just like wasn't peeing as much. And like, it was totally chill. And I felt this kind of calm in my body, like this deep relaxation and wellness in my body that I'd never experienced before. And, you know, we know that some of these conditions are associated with things like anxiety and ADHD. You know, thankfully, I never experienced other of those things. But I just, I just started to wonder, like, what else could this cause in people where they would never even know because the tension is causing something for the nervous system that is relatively subtle doesn't, isn't obviously tied to like a major neurological pathology, but is nonetheless still there. So that, that lets those two surgeries led to my remission and all of my symptoms went away. Like my 40 symptoms that I had went away, including a condition called mass oxidation syndrome, which eventually went away as well. It was not an easy surgery at all. It was brutal. And it wasn't an easy recovery. I mean, it took me a year to recover from the surgeries and then, you know, several years after that to recover from having men mostly bed bound for seven years. But, you know, I am, I feel profoundly grateful that I had access to the surgery that I had access to diagnosis and to the imaging to begin with. This is a very hard path for people to pursue. And I also, you know, know that, you know, my neurosurgeon has told me that I'm in the 90th percentile of its outcomes. And so this is not per se what is the outcome for everyone at all. But we've, I've seen enough people remit their PEM, their, I'm sorry, their pro-social malaise, their ME symptoms, their, their POTS, their MCAS after having these two surgeries that I think, you know, at the very least we need to find out how many people are suffering from them and also look at them as profound clues as to the illness. My personal, you know, theory and belief, which is now starting to find its way also into, you know, the greater conversation is that infection can trigger inflammation and in particular- That's going to be my next question. Yeah. Yeah. How does the infection play into something that is structurally driven? Yeah. So this is something that people, I think, have a hard time thinking about. And I think part of it is that we have a very hard time relating the molecular to like the gross anatomical. And by that, what we really mean is like, wait, something we can see with our naked eye and something that we can see only under a microscope that they somehow have some connection to each other, right? And I actually, I was just sort of thinking like, if our naked eye could see that small, I don't think this would be a question, right? Like if I can just look and see, oh, look, there's lots of things eating your ligaments, like it wouldn't be a question. But I think somehow the world of the small and the world of what is kind of, you know, photoreal or photonormal for a human is very hard to relate conceptually for whatever reason. And so what, you know, my theory of what's happening and, you know, as I said, is now I think becoming part of the broader conversation is that when you get an infection, and it could be a viral infection or bacterial infection, the bacteria is a little bit different. So I'll talk about viruses first. So when you have a viral infection, the viruses can induce your body to produce things called matrix metalloproteinases. And these are a class of enzymes that break down connective tissue. It's part of the normal inflammatory response. Mass cells release them. Mass cells are found with connective tissue. And the mass cells release these, them. It is thought because you actually need to degrade your connective tissue in order for your own immune cells to be able to reach a site of infection. So it's part of a normal response. However, the breakdown of this connective tissue, and we're not talking about ligaments, we're talking about fascia and like almost any kind of barrier in the body, you know, your dora has kind of tissue, your blood vessels are kind of tissue. It helps your immune system to be able to move through these different compartments in your body, but then it can leave damage that some people find a hard time healing from. And that might be because they have a genetic connective tissue disorder like EDS. It could be that the damage is just too great. And you have this ongoing inflammation that's, and this ongoing release from mass cells of these matrix with teleprotonases for far longer and in a far more extensive way than perhaps would happen in a normal case of an acute infection. Or you have that damage and you don't know it. And then you go back and you start running or you go back to work or you don't rest sufficiently so that your body can actually heal from this kind of normal self-inflicted damage that's part of fighting an infection. And so I think those are all reasons why the body may not heal appropriately. And then you can develop major problems. And one of those problems I believe is its cranial cervical instability and also something called Lantoaxial Stability, which is C1, C2 instability. And I would say that I had both forms. I had skull C1 and C1, C2 instability. So if I would rotate my head, like I rotate my head and then fall over and not be able to move. And so that can be a consequence. I also think a worsening of type IV syndrome can also be a consequence. There are two neurosurgeons who have found mass cells in the phylum. So they're not supposed to be there. And in patients of surgery for this condition, they frequently find that mass cells have infiltrated the phylum. And that to me is a sign that potentially, I mean, maybe they were there for other reasons for some other abnormality. But like, to me, it's a sign that there actually was an infection there and the body tried to amount and re-response the infection. And that a tightened and even tighter, more an elastic phylum as a result. But there may also be, you know, compromise of blood vessels, like, you know, weaker or more elastic blood vessels as a result. The door can be compromised. So people might develop things like chronic spinal fluid leaks or a tendency to develop them all as a kind of aftermath of an infection, plus potentially an ongoing inflammatory response. Yeah. And I think I wanted to ask you that question, because I think it's a it's another bridge in the conversation, because for people that, you know, tend to perhaps minimize or just not understand the long term consequences of a viral infection to see that there is an actual connection with structural abnormalities that might potentially exist. And that is, you know, regardless of the current health overall of the person and the current lifestyle of the person. And then on the other side of the conversation, you know, people who are diagnosed with post viral illnesses, understanding that that cascade can also be there and not attribute every symptom that develops to the original diagnosis, but continue to pursue, you know, the reasons why things are perhaps progressive, progressing or, you know, developing in new ways. I think that those that explanation is important to bridge that gap into, you know, each end of the conversation spectrum. Yeah. So great. So it's good. Oh, well, I guess one thing I did want to mention that I think is somewhat related to this is the concept of the SEPTAD, which I assume you're familiar with. Do you think that would be worth explaining? Absolutely. Go ahead. So, you know, a part of the challenge with with ME, and also with hypermobile EDS, even with POTS, with many of these conditions, like they're they're syndromes, but they're also defined, you know, significantly by symptoms or by kind of clinical metrics, that are somewhat arbitrary. And so and I think when we think about these syndromes, they're sort of useful. Their definitions are useful, heuristics in some cases or useful frameworks for for diagnosis. But I think of them as kind of working frameworks, right? And so, you know, for example, with any EDS, hypermobile EDS, right, there's the bite and scale. And so it's basically, you know, you kind of measure a couple of joints and see if they're hypermobile. And in, you know, even though we have like 360 joints in our body, you know, in ME-CFS, there's like these hallmark symptoms. But we don't have like objective criteria for being able to diagnose people, at least not yet. The SEPTAD is also a framework. And I think it is really useful. I don't know that it's, you know, I don't think it's the end all or the end state, but I think it is a progression. And basically what happened is that there were there was a group of physicians on an email list who started to notice these common features in their patients. And so they had initially gotten together because they were really interested in mass activation syndrome, which is a syndrome where the mass cells, which are a part of the innate immune system, inappropriately respond to certain outside stimuli and or release these mediators that can cause really profound symptoms. The, because your mass cells are located in your connected tissue, it can also be thought of on its own as a kind of tissue disease. And so they were talking about this, but they started to notice other commonalities in their patients. And eventually, emerging from those conversations was this concept of sort of seven different, seven different kind of categories of dysfunction that patients can have. And it really is helpful because it kind of helps to unite in a useful way. People with AME, people with PILOTS, people with EDS, people with AMCA, people with chronic Lyme, etc. And so I think of it as like a buffet. And so you can have multiple dishes on this buffet. You can have ME and not have EDS. You can have POTS and not have ME. But here is the buffet. And it seems like that somehow we've all been invited to this supper that we never wanted to be at, but here's the, here are the menu options. This set had include persistent infection, EDS type of mobility, dysautonomia, MCAS, gastroparesis, autoimmunity, and cranial cervical instability, tether cord. And so it's a really useful framework, I think, for both patients and physicians, because oftentimes someone might have, or might be included into like one aspect of their condition, but not potentially the others. And what is really nice about this framework, again, it doesn't describe symptoms, it's describing particular underlying dysfunctions that you might have or pathologies you might have, is that all of them are treatable. And so if you can, you know, find a physician who understands the set had or perhaps put together a team of specialists who might work with different aspects of it, you can actually find treatments for your condition. It doesn't mean that all symptoms will remain, doesn't mean that you'll have a remission of ME, but these are all treatable and manageable aspects of what is going on for many people. Yeah, I missed one of those side dishes, the gastroparesis. I recommend if you're invited, if you're invited to this dinner that you fast. That's the last supper that no one wanted to be invited to. So, Jen, to kind of wrap it all up, can you tell me a little bit about, you know, your life now? And I want you to think about both in terms of what you do for yourself, to keep yourself going, to keep yourself healthy within this new, you know, framework that you have, and also the work that you're doing for the greater community and the patients. Yeah, so, you know, I haven't quite hit the magic formula yet. I have two fairly long incisions in my neck and my back, and one of the things that I know is that I have to be really physically fit in order to feel the best that I can. So just be strong and, you know, have muscles and all those things. And I still struggle with getting injured sometimes. So, as I try to get stronger, you know, I go for a hike or, you know, I move in the wrong way and I might, you know, like strain a muscle that I never knew I had that barely has a name. Like really tiny muscles that are just like, what is that even? How long since the surgery? Just for perspective? Ben, it's four years. It's going to be five years soon. So, you know, that has actually stopped happening, I think in the last year. But there's like this tendency for me to like get really strong. I'll say I had long COVID in the middle of all of that. So I was completely bedbound for six months. I didn't have a return of any of my ME symptoms or my POTS, but my lungs would burn every time I walked up and down the stairs. And I knew from my past experience that that feeling of burning is that's tissue damage. And I could feel the inflammation in my body. And I just sort of put myself on bed rest. And I had some mass hall stabilizers because I was concerned that if I didn't, I might develop long-term symptoms. And so I was sick for six months, but then I was able to recover fully. What I would say is that, so, you know, it hasn't been a straight path. And so it kind of goes up and down. But, you know, for me, what's really important is physical therapy, weightlifting, you know, walking, hiking, swimming, just being active in those ways. And then, you know, eating well and doing all those things. I can actually, you know, treat my body pretty unwell and still feel fine. So that's kind of nice. But I know that I should be doing these things in order to, you know, live as well as I possibly can. What is your, what do your eating habits look like nowadays? Like, I think like a mostly paleo diet, like that's just, I've been eating that way since I was in high school. And that's how, you know, we cooked at my dad's home. And so it's, it's what I'm used to. And it's what I feel better. I mean, I'm somebody who needs to eat a fair amount of meat. And I always have, I think I have a tendency to be low in B vitamins and B12. And it's just what, you know, I eat meat and veggies and blackberries. And so, and so yeah, I mean, I, I, you know, get a bit early, wake up early, like try to, you know, do all of those things. And I do still think that there was like a component of rehab that is still, or I'm still kind of finding little things like asymmetries or things that I didn't know that I had. And I've been working with different kind of specialists on that. It's a long tail. That's all I have to say. It's a long tail. But I am night and day, you know, better than I was when I was sick. And I'm really, really grateful for that. I will see, though, that, you know, I, I can't work. So I had a, I had a job where I was working 12 hours a day, six days a week. And that was, that was not, that was too much. Like, I think there's a way where I still have to be gentle with my body and allow myself time to rest and to not be living like a, you know, kind of American workaholic lifestyle, but something that's more balanced. And I'm fine with that. Like, I don't want to drive my body into the ground. And I respect the fact that even though I've had these surgeries, even though I can do all these things physically that I couldn't do before, like, there is some measure of fragility that's still there. And was probably there my whole life, even though I didn't know it. And so now I respect it and treat it differently. Yeah. And then with regard to the community, I am working on a new film. It's working titles for millimeters. And it's a documentary film about this whole world of neurosurgery and these neurosurgical diagnoses, but also by the SEPTAD and all of these different ways that we can become ill and all of these different syndromes and how they kind of might connect to each other. So I'm hoping that to create a story and a place where we can have more conversations across the different diagnoses and really help us understand, you know, what are the new ways that we may think about this and conceptualize it so that we can ask better questions and hopefully find answers for more patients. Wonderful. When do you expect that to be finalized? Coming to you in 2025 or 2026. Wonderful. And what's the title? Four millimeters. It's a working title. I think, you know, the touch of documentaries, they, you know, they find themselves, you know, in the edit to a great degree. And so I think there's a good chance the title will change by the time the film's finished. But that's what I'm working with now. Four millimeters was the distance by which my skull was sinking onto my spine. And I'm still a bit awestruck how such a seemingly short distance could have caused such profound effects on my life. Yeah, I had a feeling it was something to do with that direction. So what drew you to attend the ancestral health symposium last year, HS22? Honestly, it was, I thought it would be a fun date. So my husband is also really into ancestral health. And we lived just outside of Los Angeles. And when we realized it's going to be LA in LA this year, like we have been watching these talks, these videos at home, and geeking out about them together for so many years, like he's really into health and an intense actual health. And so when we realized it would be here, we were like, let's go together, let's just see what it's like, let's see what everyone's like. And so it was fun. It was really nice to be able to actually meet the community. It was lovely to meet you and to meet tasks and to meet so many others and to sort of realize that yeah, these conversations are happening within that community. And it feels a little bit full circle because before I knew about any of this, I had been watching those videos. And so it was just amazing to go in person and to meet all of you. Yeah, it'll be great maybe some time to get his perspective too of what it is to be attuned to this community and also be caring for such a sick patient at the same time for so many years. Yeah, that would be great. I'm sure he would. And he's also just really, I mean, he's gotten really into long distance running and, you know, cold exposure. And I mean, he far more than me, like I enjoy watching the talks with far more than me. He's like, he like, he just jumps in and does the same. Yeah, wonderful. That's great. Well, we're coming up to a long time here. Really, really, really appreciate your generosity with your time. I know that you're very busy and doing a lot of great things for this community. So we are very thankful to have you here. How can people find you? So I'm on all the social medias. I just got a TikTok, which I was resisting, but I'm there now too. You can find me at my website, jenniferbrae.com. You can also go to unrest.film if you want to figure out how to watch unrest. Wonderful. Thank you so much, Jen. It was great having you. Thank you. Thanks for joining us on this episode of Ancestral Health Today. We hope you enjoyed our discussion on how evolutionary insights can inform modern health practices. Be sure to subscribe to our podcast to catch future episodes.