In this episode, Uma R. Chatterjee, a neuroscientist and mental health peer specialist, shares her personal and professional reflections during a major life transition—moving across the country—while recapping her experience at the International OCD Foundation (IOCDF) conference. She describes the conference as a unique interdisciplinary space where patients, families, clinicians, and researchers converge. Uma highlights the Research Symposium, a full day of cutting-edge presentations from top OCD researchers and trainees, including a competitive poster session where she presented her systematic review for the second year. She emphasizes that while no single OCD gene has been found, Dr. Evelyn Stewart’s work on heritability and pediatric onset OCD represents significant progress. Uma also discusses her intentional shift from maximizing productivity to prioritizing connection and community, noting that many research answers to common community questions are not effectively communicated to those with lived experience. Her goal is to bridge this gap by translating research insights into accessible conversations, reinforcing her commitment to both scientific rigor and authentic advocacy.
(upbeat music) - Hello and welcome to a chat with Uma, with me, your host, Uma R. Chatterjee. On this podcast, I bring together all of my roles as a neuroscientist, researcher, board certified mental health peer specialist, mental health advocate, community builder, and a survivor with lived experience to bring you honest and unfiltered conversations exploring our true human experiences in their fullest form. Every week, I'm bringing you conversations bridging the gap on all things neuroscience, psychology, mental health, lived experience, advocacy, psychedelics, and more. This is a space for raw unfiltered truth to truly explore ourselves for who we are and how we are. I cannot wait to connect with you, answer all of your questions and co-create this with you. Welcome to a chat with Uma. Hello beautiful humans. Welcome back to another episode of a chat with Uma. I am sitting here in my office right now in a lot of disarray. You may not be able to tell, well, obviously you're listening to this so you're not seeing it, but I do recordings on video and sometimes you see clips. So at some point, you might be able to tell that things look slightly different in the back, but they look really different in the front and that's because I am moving across the country in just a few days. And I had to keep some semblance of my office intact to be able to just feel like I could record these episodes. And I mean, I guess I could actually have it looking anyway and it wouldn't really matter because I'm recording and you're going to hear me talk as long as I have a microphone. But I don't know. I just, I like feeling sort of put together and this has just been this space where I've been able to do this so far and create this and be here with you all. And I just wanted to keep it that way while I'm recording. And then after I record this last episode before we move, move, but it's going to come out after we move. But while I record this, this is the last one. And it is really wild moving across the country. That's a whole other episode. So I'll try to stop rambling about it right now. But that is my frame of mind. Just a state of transition and just so much to feel an experience and process. And I'm just so grateful that amongst all of this change and all of this transition, I get to keep talking to you all and hearing back from you and just being the space of growth and understanding together. And that's where I am right in this moment. But getting into the actual episode today, I need to do a very long overdue. I guess it's a month out. But a longish overdue recap of the International OCD Foundation conference, the IOCDF OCD con that happened from July. I believe it was six through ninth for me at least, because I went to the Research Symposium, which is the first thing I'm going to talk about. And there's just so much to share and process. And as I do recaps on this podcast in general of the different conferences that really mattered to me and the conferences that I experienced a lot in, of course, this is a recap of just simply my experience in the way that I navigated the conference, which is so different than many other people, because we all are showing up as ourselves and our interests and the different ways in which we participate. And we attend and what we're looking for. And so, of course, this is just one perspective. My perspective is very much at the intersection of, of course, the research, of course, the Research Symposium and all of the research presentations I did and the research at the actual conference that I was consuming and the people I was meeting. Of course, though, the research is largely mediated by me having OCD and me being so deeply involved at the community and being an advocate. And my interest related to really bridging that gap, which is what we do here in the podcast and what I do with my life in general. And so, of course, so much related to my lived experience and finding solidarity and community and just connecting with and reconnecting with so many beautiful humans in the community. And as a theme of how I've been trying to approach these spaces more nowadays, like going to sessions, obviously, learning as much as I can. But not to the point where the entire time is just maximized by learning and doing constantly and being productive and attending every single possible session because that is generally my MO and just so much space and connection and time is lost in that way. And it's just not the healthiest way for me to do things as much as I tend to do so. So of course, with this conference being my second time, there's also a lot of personal reflection and time to myself, honestly, to process a whole lot of what was going on and what was coming up for me, which I'm going to talk about too, because this is space to be honest and open. And I know I'm not the only one who might have felt certain things. So just making space for that too. And just a lot of life changing experiences for me at the intersection of all the ways that I showed up, being someone with OCD, someone with a experience of person of color, a woman of color, being a mental health peer specialist, being a researcher, being a grad student, and just, oh my gosh, I can't wait to get into it. (laughs) So, so, so much there. So really and truly, the way I'm going to navigate this episode is kind of go through chronological order, the different experiences I had, the different sessions I attended, the takeaways I had, the conversations that I had, and just really in service of not just processing for myself, but bringing to anyone who wasn't able to be there or anyone who was there, but just wanted to hear more about different perspectives of ways that they didn't get to attend or experience, just bringing so much of the intersection again of research and lived experience, and there is so much information shared across that conference and just so many things happening all at once that I know not one person could possibly hear and attend everything that they wanted to. So this is my way of bringing my experience together to just put into one place, all of the research that I consumed, all of the experiences that I had and just bringing forth more of a robust conversation at the intersection of that, especially because there have been so many conversations actually I've had recently and questions I've gotten from people in the community who come to me as a researcher with just questions and thoughts and just conversations online about the state of research, and I just constantly find myself in this place of realizing, wow, so many of these questions are being answered, are being talked about, constantly in the research world, and yet nobody knows about it and it almost feels like it's a novel question to some people because they're not hearing the answer, it's not readily available in a accessible way on the internet and I just want to scream from the rooftops. This is being talked about and people are talking about it, but I constantly realize that they are, but to each other in the research world, is not to who care, and that's literally the point of the show, so cannot wait to just get into some of those questions and just start conversations about where we're at right now and again, from the perspective of someone who cares so much about this not just because I'm a researcher, but I'm a researcher because I'm doing research, y'all, like, because I'm doing research for me and the people I love in this community because I am one of you and I wanna know these things because they affect me directly and I wanna understand my brain and my experience, so, let's just get into this episode of my I.S. EDF Conference Weekend. (upbeat music) So first and foremost, the way my whole trip started before, like, real and true conference programming was I got there on that Tuesday before everything started on Thursday and I spent Tuesday and Wednesday with some really beautiful dear friends of mine who were already living there or in the area for the conference and it was just a nice way to ease in and really frame this trip as a way to not just be, like, working, working, working with all of the presentations I was doing and being a researcher and like, all of that, being an advocate, like, all of that, it felt like it got to be some form of a trip with community.
connection and presence and yeah, I was just consumed by nerves for the entire Experience that was going to be but I'm really really glad I got to go a little bit early and just spend some time with people I love and be there to just also ease in from Thursday morning, which is when the research symposium started so I want to start with the research symposium and just talking about what that is because More often than not when I talk about this like people in the community have no idea that that exists and it's happening and I actually really want to do more to change that so The way this conference works for anyone who doesn't know who's thinking about going or has been going but just has an experience like all parts of it is that typically the conference is four days long and What kind of it's like three-ish plus a night before so let's say three and a half days long and it'll start that Thursday night typically and there'll be just a lot of Welcome events and support groups and just ways to ease into all of the programming and then that Friday and Saturday or two Full days from morning to night of just a ton of like everything like a bazillion sessions different kinds of sessions with different tracks and For all you know people from all walks of life all people who are interested in coming to the conference and it's such a unique conference because It's one of the only places where it's so interdisciplinary and people like all stakeholders for OCD and related disorders are coming together in one place so it's Patients from all different ages and walks of life their families their caregivers siblings parents Anyone involved who cares or you know people in their relationships as well a marital friendship otherwise and There's also all of the clinicians that come who practice and Serve people with OCDs so typically psychologists therapists like high-adjustes people from Medical background social workers, you know, I'm missing a lot of other people, but you could the idea and Researchers people who are doing clinical research basic research so preclinical stuff like people all in that field as well and people from the more Business side of being able to support people with their clinics and their services of all different walks of life in all different ways and I'm probably forgetting more. I'm really tired But you get the idea. It's just a conference for everyone involved in the field study practice treatment experience of obsessive compulsive and related disorders and so it's just so interdisciplinary it's such a beautiful diverse I mean it could be more diverse, but it's a pretty diverse community and It's just really unique compared to other conferences that I or Typically people go to in terms of generally conferences are geared toward the people who are more on the professional side of things and who are studying or Practicing on a specific topic and it's just typically a very just professionally oriented conference Not for people necessarily with the lived experience or people who care about people lived experience So I just fucking love this conference so much for so many reasons. I mean especially because a theme of this entire podcast and the way I'm going to be sharing about my experiences that I'm really just In this conference with so many different parts of myself coming out all at once, which is not as common and so that Context of how the conference works is basically how most people experience the conference They're there from that some part of that Thursday to that Sunday and Yeah, there's also Sunday and it's like a half day until the afternoon and then people typically leave so That's the conference conference and then There's this part that a lot of people don't know about which is the research symposium Which sometimes people confuse with the research presentations that are happening during the Thursday to Sunday So because there's research tracks for the types of presentations people are consuming and that is a thing But there's also the research symposium which is for researchers by researchers by definition But we'll get into that and the expansive nature of what that definition can mean But it is a whole day from Thursday like the crack a dawn till Thursday evening all before the actual conference conference starts and It's a full day of the Premiere the top researchers in the field and the trainees in the field sharing The most recent research updates across disciplines so everything from the most cellular and molecular like basic clinical research all the way you know genetic work all the way to you know computational work and new systems and virtual programming and like the empirical evidence for different ways things are working and everything in between clinically, you know surgically medically All pharmacologically like all of the things it is the place for all the updates and There are a bunch of talks a bunch of it's it's really interactive. There's a bunch of talks and then a lot of room for Conversation between everyone in the audience and the researchers presenting because that's kind of the point to be able to discuss and collaborate and Builds upon each other's understandings and really just get a sense of where the fields at right now at like the very foremost top institutions and spaces that are Doing this work, which you know there's not that many because OCD is something that's very other study Did very misunderstood and does not get a whole lot of funding. We talked about that a lot so It's just bringing everyone in in one space to just Stated union every single year and it's age-rein-cum-true for me as a Researcher and as someone who cares so much and as someone also with experience who wants to know the top things going on in like the latest news and where we are at and all the questions and is just so inspired by The people doing this work who I know in the lived experience community We often find that many many many of the people who are doing this work have a very personal vested interest because they themselves have OCD or they have someone they love very much you have OCD and You know, I think being in the advocate and lived experience space it sometimes feels like almost Disgatedness of like oh, well why like it feels like only people who have like a very specific reason to do this work Are here doing this work and it's hard to get people to care and then I go to the research symposium and like Almost everybody has a story that's just like they've had a patient or they met someone with OCD in their clinical or Professional work and realized it's Ignat what they thought it was all it's so debilitating and they just developed this passion to want to help people and Through whatever discipline they're doing it and I just love that and that expanded I Guess experience of the kinds of people who get into this work because There's so many people Like beyond who we know of in the lived experience community, which is a whole other Conversation for another day, but these people are just at the research symposium are The people that are just the most inspiring and at the cutting edge and are Educating every second of every single day to this work and I it's just such a privilege and honor to be amongst them So yeah, there's bridges learning from them all day and then at the very end for an hour Well actually an hour and a half there is a poster session and for those who don't know A poster session is basically like an adult science fair and it's for trainees to be sharing their most like current work in a Setting where you know the senior researchers and anyone attending get to just walk through and We present our posters as people come up to us and we talk through everything and have conversations and we're amongst other trainees We get to see each other's work and it's just so Awesome and I love it so much and so I had the privilege of presenting last year and I also had the privilege of presenting this year and It's really truly a privilege to present specifically at the IOCD at research symposium because sometimes poster sessions are very open and you're very likely to get accepted because that's just the nature of that conference and then there's some conferences where Apparently it's extremely extremely selective and competitive people to do so and I didn't have any idea like Exactly how competitive the IOCD of one was before what I've heard Number one, it's extremely extremely competitive and there are a lot of senior researchers who I Have now come to know just didn't get accepted and on top of that Typically there's like a hierarchy of the kinds of research to be presented in terms of you know original like fully data driven like collecting samples and all of you know very just very like original research as opposed to more Systematic review taking what's already out there and making novel conclusions putting together that kind of thing Which is what I have been presenting at this conference and so typically the latter the systematic review type things are at the lowest version of the part of the totem pole for what's accepted and yet I had the privilege of being able to do so two years in a row this year I presented a expanded version of what I presented last year and so it was seriously such an honor to be there again To be able to do this and just present like much more of the full breadth of the work of The project I've been just pouring my heart and soul into in the last year to my heroes to the people who. inspired my work who I've cited pretty much all of them and that was really, really amazing, but we'll get to that. So I first wanted to talk through just some of the really, like, I mean, I could talk all day about all the data that was shared and all of the research going on, but to save you a very long rant that you probably don't want to hear unless you do, in which case tell me and then I'll just talk more about those things. But I'm just going to give you the highlights of some of the absolute coolest things that I heard at the research symposium. Also that answer a lot of the questions that are floating out there from lip people with lived experience and in the advocates face who just like are asking these questions and just are not being communicated to you about these answers and what's going on right now. So I think this will be really interesting for a lot of people that are wondering about genes, genetics, more novel treatments, things like that. All right. So let's first get into genes, genes and any form of, is there a gene that predisposes people to OCD or any gene that's been found amongst people with OCD, all of that? The short answer is no, not yet, but it's in process and it's being looked at. And I want to point you to someone who is just so important in this field that I feel like we don't really hear about very much, but we definitely should. Dr. Evelyn Stewart, who is in Canada and just is at the helm of so much of this, she is a medical doctor who does lots of research as well. And she gave a, she gave like the big talk at the research symposium for a very long time, just talking about the state of genes and the work they've been doing right now, particularly in pediatric populations to find some form of a heritability score for OCD for predisposing genes for just really anything, biologically, that can give us some more insight into pediatric onset OCD as opposed to in compared to adult onset OCD as well as, you know, heritability in terms of how much nature versus nurture like most are very short. That question and correlations, you know, my studies and Dofina types, which are really just like identifying pre-existing OCD risk markers, epigenetics, comorbidities and of course inflammation and unity and that relationship to pediatric onset OCD, not just Pants and Pantas, which of course is a huge conversation, but just in general inflammation and auto immunity in relation to that stressful life events, this conversation, this presentation from Dr. Stewart was so robust, so exciting. I mean, I took my notes are so long that I'm like, where do I even get it? Okay, I guess I'm just going to teal the Arlus and we want to hear more. You tell me we'll get into it another day, but basically we don't have a gene yet. We've been looking for a really, really long time and sometimes it's almost a little frustrating just seeing like the questions about like, well, what about a gene? Like are people looking for a gene? There must be a gene like, yes, I want everyone to know and reassure them in a healthy way that that's being looked for, that's been being looked for for decades and we're continuing to look at we need more sample sizes and we need more resources put toward it and we need more people looking at it because you can only do so much with the number of researchers we have, the funding and the sample sizes, but with what we have so far, have not found it yet, but we're working and getting closer, Dr. Stewart's lab is very much at the helm of all of this, but something extremely interesting that is coming out from her work that is yet to be published and I get to tell you your first if you were at the research symposium or have heard her talk before, is this really interesting concept called epigenetic aging, which really just looking at the age, our biological age in our genes and ourselves and does that look different than our actual age and if so, why and in which people relate to OCD specifically and long story short, what they're finding is in pediatric populations, people with OCD are largely showing to have a advanced epigenetic clock, so their genes, their biological clock is older than their age and it's around two years older on average than their actual age, which is so interesting and also what's really interesting is this is consistent with autism spectrum disorder and patients who have it, so interesting correlation, interesting comparison and why we don't know and it's more to note that it's not a signal of an inherited genetic sequence that they're finding, it's more so looking at methylation patterns in patients and why again we don't know what this is going to be a long-standing discussion and investigation that's required from many, many people, but I found this to be extremely fascinating, of course the actual just like average two years older, but also the correlation and similarity to autism and it seems also that correlatively the more severe someone's OCD is or the way they've scored in their severe moments, their severe parts of their OCD journey, the higher age there seems to be correlatively in their epigenetic aging, which I said on average two years, that can be widely differentiating when you average a whole bunch of people and they have found a correlation with severity and that discrepancy between biological age and real life age, so wow, wow, right? So a lot more to say about that, but TLDR, long story short, don't have an answer on the genes looking for it, we need more people to look at, we need a lot more analysis, we need a lot more funding and a lot more people looking because in numbers is how we can actually find this because think about it like the smaller a size of samples, the less likely there is to be found a significant commonality in terms of simply statistics and being able to do accurate math and not just make conclusions out of a similarity, but if we have a much larger sample size and we're finding a gene in a subset of people, at least it becomes more significant with the larger number of people we have to look at in the first place versus the coincidence of in just less people, does this happen to be something that's being flagged versus in far more people, this is being flagged more often, so that's the long story short on genes and I can tell you that we have several conversations lined up with people who do this for a living all day, every day that can speak at length about the state of this field and we can have, and we can and we'll be having very long conversations specifically about genes for OCD and other rice or stay tuned for those, but that is my summary of that part of the research symposium and just just to put a blanket statement out for people who are wondering who are not readily consuming research or being told about research because I know some people say this word, row the word gene around and think that there must be something and yeah we think that too probably, but we're trying to figure it out and it's really really complicated, so the next part I'm going to share makes me smile extra big because it's with one of my favorite people, heroes, researchers, clinicians, just favorite humans all around, not just in the OCD community in space, but overall in research and just in life because my gosh, does she just defy all norms and stereotypes and expectations of people in her position, people with her power, people with her experienced stature and I can't fangirl enough, but Dr. Carolyn Rodriguez, who we're going to talk more about later when I'm talking about hours, I could tell it's an OCD panel, but in the context of the research symposium, she shared her work, her seminal clinical trials from her group at Stanford that are soon to be published, it's some of the most novel work coming out and really really excited to talk about it and anyway, okay so they shared, she shared their work on looking in their very exciting double blind placebo controlled clinical trials for ketamine and OCD patients and to try to give a brief summary of everything that led to her trials and her work, at least this specific trial that's
She's going to be talking about. It ketamine has been looked at in OCD for quite a while relative to other compounds that are put in the category of psychedelics, which ketamine is not actually a psychedelic. It's oftentimes lumped into that same category because of similar effects it can have at certain dosages and ways of administration that definitely listen to my past episodes for more context on ketamine. Also giving back around on ketamine versus other psychedelics and my psychedelics episode too. I'll link them all in the show notes. But long story short, ketamine is not a psychedelic but can operate in certain senses like a psychedelic. Sometimes it's very debatable and even the term psychedelic to find that is its own 10-hour conversation. But to try to generalize it with so many caveats and nuances, of course, ketamine is not a psychedelic but it can, oftentimes, share similar characteristics in the experiences it induces in patients through the way it's administered and dozed. Also though they work very differently than classic psychedelics, ketamine versus classic psychedelics in terms of pharmacology but that's another conversation for their day. But because of the fact that ketamine is not a psychedelic, it's also been a approved compound, a legal compound that's readily available, accessible, it's extremely cheap but not for the patient. But it's extremely cheap to produce and it's something, it's kind of almost a get-around for this type of work in terms of looking at this type of synaptic plasticity and metaplesicity in the brain for trials and people who want to look at this type of thing for treatments of various different indications including OCD. So there's probably over a decade of work in this field for ketamine and OCD by amazing people like Dr. Chris Pintinger, Dr. Michael Block, people who you will be hearing from soon in the future. But the thing to try to summarize at the past is that when ketamine was looked at a long time ago in OCD patients, there's just a lot of comorbidity in OCD and depression and other things as well as people being on medications already and that potentially interfering with the capability for ketamine and other drugs, different substances to be able to have an effect on the brain when people are already on SRIs, SNRIs, SRIs, all of those. So in the past there weren't very significant effects on OCD because the patient sample was extremely severe in their OCD. They also had comorbid depression and other disorders and they were also often on medications. So there's a lot of confounding factors. So what's really a struggle oftentimes in research is to get a clean sample with, you know, there's really no way to fully control for any of the variables but trying to control for and eliminate other variables to just see in a patient sample with just OCD, not on medication, does ketamine have an effect and that in and of itself, even if you take away all the variables, there's so many questions of how many doses of ketamine, how, what method of an illustration, how often, how far are we measuring out, right? So there's so much work to do just in that question alone. Before you take in all the other factors and something that Dr. Rodriguez and any research or we'll ever tell you is that before the purposes of establishing efficacy and further causal relationships and research, we need these clean samples and yet clean samples are not indicative of the reality of most patients and of actual clinical samples to translate ability from these clean samples to general populations is a whole other over providing a conversation and factor and that's for another day too. But that being said, all of those caveats will so much more in their sample of, well, I guess what I didn't say is those were the past issues and what her trial has done is now test in many different ways with safety trials and then straight up efficacy trials over a long, long, long period of time. Ketamine intravenously, so IV, what does a dose of ketamine do for people's OCD for people who have OCD and are not on other medications and the results are significant and they have instantaneous and long lasting effects I believe don't quote me on this but up to three weeks maybe four which is at this point given like what's approved and what's available and legal on her to I mean psychedelics, trials and the results right now are actually are even far longer which is amazing but in terms of what's approved and available right now this is unheard of and getting instant I mean something that really really shook me to my core hearing her reflection Dr. Rodriguez reflection of just never meeting patients who have instant relief and are able to build up hope and faith and just motivation to move forward even if and when most likely when their OCD comes back with a full force like the fact that they have ever experienced just this relief and this freedom from OCD or the grasp that OCD has and that feeling of complete lack of control and capability to disengage or detach from OCD the fact that that that patients have that experience like how much of the results and the improvements in patients lives come simply from the pharmacological aspect of whatever ketamine is doing to the parts of our brain that are inducing and contributing to OCD which there's a lot of theories and ideas of you know ketamine acting on the glutamate pathway increasing brain derived neurotropic factor to be able to just grow and improve many many pharmacological conversations that again another day because these things are what drive you fascinated but I that I digress from the point it could be the pharmacological parts it could be the fact that simply they are relieving OCD symptoms which in and of itself can be therapeutic obviously that seems obvious and or how much of it is the change in their relationship to their symptoms because they've experienced any form of having a freedom or distance from it to have that empowerment even if and when they do come back to know that life can be different and they can be better and that being motivating so how much of it is mechanisms of cognitive change themselves and just decreasing the OCD cycle increasing cognitive flexibility versus changing relationships to their symptoms and just in general distancing themselves from the anxiety it's obsessed in compulsions really like leading into the metacognitive view of themselves as a human and their OCD right so many questions and so which more research to be done and obviously this drives me to no freaking end to contribute to in any way I can and just keep up with the work but that is some of what Carolyn Rodriguez shared and I love Dr. Rodriguez so much and I'm going to be talking more about her in the future about my own presentation with her which was absolutely life changing but that is what you shared with research symposium I'm Kenamine and OCD and there's a long long way to go with this research and definitely not a clinical recommendation or something that is in full practice in a fully approved and understood way but extremely extremely exciting results to inform further work and offer an open up new lines of research and possibilities and opportunities for patients who are treatment resistant and who are suffering so deeply and then a really significant part of the research symposium to me like I talked about before was the fact that I got to present at the poster session and that was my first of five presentations that entire conference and it was just really really special because it felt very full circle. My first ever in person poster presentation was a whole year ago at the IOCDI research symposium the exact same thing presenting the first iteration of what has become this full blown project that is now taking me all over the world to not just do posters but give talks and seminars and awards and these beautiful things that have fully changed my life and I'm starting a PhD program and getting to extend this work so much and it felt very full circle to come back almost in a humble way to the poster and just have a full circle moment of how much has happened in just one year and in a space that just felt so foreign to me last year and like I'm going to be able to do it.
I didn't know what I was doing. I couldn't hardly believe I even made it there because like I explained before, like, it's extremely competitive to get into that particular research symposium. It's amongst just so many incredible people who have done work that I could only hope to a dream of ever doing a tenth of and to be able to do it again this year and find myself there again and I guess a key part of this, which a whole other episode will be coming out to go through the details of all of this because I get so many questions on this project and what it is this part of my research has been and how and why I'm the sole name on there or have been for quite a long time. The parts that are relevant to this are that this project can entirely from my lived experience with Comorbid OCD and PTSD and then putting my research or hat on asking a question about considering Comorbid OCD in psychedelic assisted treatments of PTSD and it's just started as a passion project. A rabbit hole really that then turned into a full blown empirical research project that came from my lived experience and then show up in a space to present this completely as a sole author, meaning that like I did this from start to finish by myself and didn't work with a typical lab leader principal investigator to do this. I mean it's typically not a thing you ever see at a conference and being their full circle again with this robust project and feeling just as insecure maybe even more because I was less ignorant to the reality of where I was and what I was doing and far more aware of the people around me and the people I looked up to and putting faces to names and realizing what it is that was happening and then just doing it anyway was just really really special and I in this particular research symposium that's so many people that like I had seen their names forever and ever as senior others of papers and people who I was just fan girling and geeking out on and was just like rambling to them about their work like I'd imagine I would I perceive myself as creepy but I would you know received a lot of enthusiasm and support from them which was cool and hopefully they could tell that I just was so enthusiastic about their work and I straight up was just completely open about like how and why I came about with this project and had no filter as to my lived experience and how that contributed to it and just having these robust conversations and then getting so much affirmation from my heroes and the space talking about the like they couldn't believe I had done this all by myself and how far they felt like I was going to get in research and in grad school and how proud they were of me for the program I'm starting in because it's just an amazing program at UW Madison for neuroscience and just being able to share in this full circle moment with these people who were so generous with their kindness and support of me just it's just so hard because there's parts of myself that and I guess I'm not even myself it's my OCD my pathological doubt my self hatred I'm working on the trauma all of the things I guess they all are parts of myself but I really attribute them to a lot of my pathology that there's these parts that just like can't ever really feel like I can receive these things and these experiences and will forever be yelling and doubting and screaming in my head and I guess I mean at this point I don't feel like they're going to change and yet I felt like they were just going to be the loudest parts and like other things wouldn't be able to coexist and I just have to tolerate only hearing those parts and what really happened in this conference and really the last few months like I never I didn't think that amongst those parts of me and those voices there would also be parts and voices that are starting to grow that can hear and receive those things and can sit in the awe and gratitude for the affirmation and acceptance and upliftment and hope about my future and what I'm capable of and what's possible and how much I can grow and learn and do and it seems like my capacity for holding these feelings and these experiences and these internalizations and processing is just expanding and widening and I always had this perception in recovery that it was going to be like one or the other like either I'm you know of course binary like either I'm going to be just you know in this place of you know complete negativity and hatred and doubt and fear and blah blah and then recovery would mean that I feel not those things and instead I feel gratitude and hope and excitement and all these things and at this point maybe that's not the case and maybe that's not ever the case but what I didn't foresee was that it could be both and it could be expansive and that growth and expansion into more who has been so life changing for me and something that is really just breeding this slow growth of hope and looking forward which is really really scary because I talk about this in therapy all the time but like the more I grow or the more I climb the mountain the further it feels like I could fall down and I'm really really afraid of falling and how much it's going to hurt versus just staying down and never falling and just being at the bottom and yet it seems like my capacity to be able to climb this mountain and tolerate the capability of falling down and also not just being so consumed while I'm climbing said mountain with the fear falling down that that is there and it's very loud and also it's not just that it's also being able to enjoy the view and joy where I am on the mountain take in the beauty and the excitement and the invigoration to keep climbing the mountain so yeah that was really really amazing and a way to help me navigate the rest of the conference and the experiences I had that I can't wait to share too so after the research symposium was immediately after that becoming the full conference so obviously I am my full self at all times but the part of me that was really coming out for that first full day was research your hat with a little bit of legit experience but mostly research your hat and then the other parts of me were warranted to come out because I was just expressing my full self in so many different ways for the rest of the conference so it like quite literally turned into different like looking different because you know not wearing a suit all the time and just talking as my full self and that included obviously being someone with OCD with my lived experience being an IOCDF advocate so a lot of my role that way being part of the conference planning committee which was amazing to bring my identities together to contribute in that way and also being a board sort of I'd been to health peer specialist and running support groups which happened and was really really exciting and also being a human who is marginalized as a bipoc will in the space specifically a South Asian patient and that hugely hugely contributed to and shaped my experience at the conference it did last year too and it informed the way I showed up this year and the programming I contributed to as well so after research symposium we got into all of the pre conference events and the conference events and so there was a really cool speaker dinner that night which was at the rooftop and it was really overstimulating and there were so many people like could not hear anything or anyone but got to see people and it was really exciting and really overwhelming and I'd already just come off from like hours of speaking non-stop at a post-recession so it was I was just extra overstimulated and overwhelmed but it was beautiful to see everybody and just to kind of have a shifting experience to fully lean into and move into not just research or hat but hold on my hat or as much as a hold on my can be in a situation so that was Thursday night and then the full conference went into full effect starting Friday so Friday was an easier day for me that was just one major thing that I was presenting or doing which was my BIPOC community support group with Urging Queen who is a beautiful human she is a licensed therapist and the president of OCD Washington and we together ran the BIPOC community support group which is really special because last year I attended this exact support group with her who she was the sole facilitator and it was just a really important space for me to feel in solidarity with many.
other people, it's actually not many because there were that many people of color at the conference, but the people that were there being in one space to really express the fullness of our experience of being BIPOC and not being represented and feeling so alone and looking for each other and feeling and talking through the interactions of our experiences BIPOC people in the society and how that is influencing contributed to our experience with OCD and that was such a really beautiful, formative, important part of the conference for me last year. So then Raging asked me if I wanted to actually co-physilitate with her this year, which was so special, I'm so grateful for her offering me that space to contribute alongside her as a mental health peer specialist and also as someone with low-dispirience and so we did that Friday night and I'm sorry not to cry, I think you could get about it, it was so special there were more people this year, which means there were more people who felt safe and supported to be able to come to the conference to find themselves at the conference and to come to our session, which was just really, really wonderful. And then we also just had an even more robust and important conversation about creating space and being open and honest about our experiences and about feeling alone and feeling like we were the only people who looked like us there or one of the only people who could count on one hand, particularly I know for me as a South Asian person, like last year I could count on one hand, this year I could count on two hands, I guess that's an improvement, there's so much more we need to do though and I guess side note, every single time I saw anybody who was Asian or South Asian but particularly parents who had a very specific look on their face of just like feeling completely lost and confused and alone and being there for their child but having no communal support amongst their friends and family because nobody understood that their child had OCD and what that even was and what mental illness was and them just being here trying to support their child and learn and understand I would just make myself go up to them and thank them for being there for their children in a way that I wish I had the experience of and that their children are so lucky to have them as parents doing that for them and the difference that they're making in their kids lives and it was just we were always in tears every single time that I had this conversation with in Indian or South Asian family and the kids I got to meet who had never met anyone who looked like them with OCD and adult or young adult or just anyone at all and for them to know they're not alone and I understood it was just so so powerful and so life-changing and it's so painful too and there was a lot of pain and grief for me to process of just seeing so many people at the conference with their families and with their parents and being advocated for and supported of course emotionally, medically, financially, I think especially emotionally but also the other parts and just feeling of course happy for them and grateful that they're experiencing that amongst such suffering and yet just feeling so alone and with so much grief of how much I wish that I had that and how deeply painful and lonely it is to to navigate this alone and I know I'm not alone and I have a community of amazing people that support me and my husband and people in my life who do their best to understand now but to grow up without any of that and to not have that now largely because of so many reasons it's it's really heavy and it's a lot and I felt that last year I was also like less capable of feeling and it was a lot just not as able to touch on that grief before and it showed this year the amount I'd grown in that because I felt a lot it was horrible and I hated it and having emotions and grying is not fun and it came out in ways I didn't know how to control and I did my best to just give myself space too and that's still a very real part of my experience and just wanted to give a voice to that here because I know I'm not the only one and I want you to know that you're not alone if you're hearing this too which I guess leads me to the next part of my experience of the conference which I mean Friday was basically me just attending sessions being present with people, fundamentally prepare myself for the day after which I'm about to talk about and that amazing bi-pop community support group at night that I facilitated and co-facilitated as a mental health peer specialist and someone with OCD myself and then the next day I had three presentations all in one day and it was a huge day with so many parts of my identity coming out all at once and so it started that morning with a panel the in my shoes talking about the bi-pop experience with OCD a panel with me and four other incredible advocates as well as an amazing facilitator so Dr. Darlene Davis Goodwin was one of was our facilitator who held space for us as we each shared our experiences and then there was me and Alexandra Reynolds my dear beautiful friend Alex and Rachel Aaronberg and Valerie Andrews and I just my smile so big thinking of that because it was such a beautiful full experience that was so complete and whole and also just so beginning of so much more that we need to do as community because I just talked all about the support group that we did and then this panel was a large scale conversation about different walks of life and the ways that our bi-pop and cultural identities contributed to not just our experience of OCD but our accessibility or lack thereof and familial support and the tension with cultural stigma acceptance having community ourselves a few people understand within the OCD community or lack thereof and it was just really really important for all the tears it was profound it was just the beginning of so much more and such an emotional powerful and exhausting way to start the day and just really showed me once again the power of being seen and community and taking up space amongst all of the loud loud voices of OCD and in a meta way and other things just within me and to be able to hold that space for the people I love so much on that panel and then also try to extend that to myself in that process and so we got feedback that it was from some people in the audience who are on the board of the IOTDF and just people who have a lot of contributions to programming and initiatives who said that this is one of the most important panels they've ever seen at conference and that this conversation needs to continue and we fullheartedly agree so I really look forward to us being able to do more and create more space for people who look like us to get the support they need and to highlight all of the neat parts of our experience due to being in marginalized and minorities groups both from our recent identity and ethnic identity and and otherwise and I guess I don't know if I can fully say that this was the biggest experience of the conference for me but I feel like it's been the one that I've processed the most since and have just reflected on and had so many transformative feelings and reflections upon since which was the psychedelics and OCD panel that I had the absolute joy and privilege of presenting on and facilitating amongst four of my absolute heroes like I do not use those words lightly my absolute heroes so you heard from one of them before Dr. Kaelin Rodriguez she was all that panel as well as Dr. Chris Pittenger so Dr. Kaelin Rodriguez is a neuroscientist and psychiatrist from Stanford runs a lab runs a department just yeah not and Dr. Chris Pittenger who is equally seminal in the field of OCD research is also a neuroscientist and psychiatrist and runs his lab Gale
and runs the Psychedelic Science Research Group and their Yale OCD Research Clinic and so many amazing things as well. And then Dr. Jamila Hokinson, who is a psychiatrist at Yale as well, and Dr. Terrence Ching, who is a clinical psychologist at Yale. And all of them obviously study Psychedelics and OCD because they were presenting on that panel. And I had the privilege of also presenting with them and facilitating the panel. And the way that panel came about was that there is a lot of research being done on Psychedelics and OCD. And we talk about it again all the time in the research world. And those conversations are happening at conferences and amongst each other and in papers. And that conversation, that information is not getting to the people with OCD and clinicians and people who are not in the research space who want to know about it. And so as I'm sure you know, there is such a big conversation happening about Psychedelics overall. But even in the OCD community especially in the OCD community, people are talking from all different angles about Psychedelics and OCD. And most of the time that information is coming from people with lived experience and people who are advocates, people who have used Psychedelics in their personal use as well as in clinical use. And just sharing about it enthusiastically, excitedly or even not enthusiastically, not excitedly from a place of caution and not wanting to be spreading misinformation, all of which is valid. And it's not reflective from any angle of the full picture with the nuance and the details of the research and the context and all of the parts that make a conversation just fully representative and accurate. And so I really, really wanted to have a panel of superstars, people who are doing this work at the top levels of their field who are running the clinical trials, who are very, very seasoned researchers and clinicians to come on a panel at the conference to be open to everybody. So not just researchers and clinicians, but people with lived experience and to try into the course of an hour and a half to cram as much as humanly possible about the field of Psychedelics and applications for OCD and the state of the research and the state of the trials and considerations and cautions and just results in all of those things in one session. And while I definitely cannot summarize all of the contents of that hour and a half in this podcast, what I will do, what I'm so excited for is you have each and every one of these people and people who couldn't be on the panel, come on the podcast and have those very detailed log robust nuance conversations with each of them. Please be rest assured that you will be hearing those results and those conversations, not just if you are in that audience, but on the podcast here and in other forms of science communication that I really, really hope are happening to be able to just have this funnel of conversation from people who are doing the work to the people who care about the work. So that all is coming, but the reflection I really want to share and process on the podcast right now is that conversation that panel was just so life changing for me because I, and for, I guess, okay, for people who are not researchers, which is a lot of people listening to this podcast. What you need to know is that in the world of research in the world of biomedical sciences and very formalized research studies, it is not the norm to talk about lived experience, particularly, and especially with psychiatric or mental illness. Even when you're talking about research related to said illnesses and with people who study said illnesses because you might think, oh, that means that even if there is stigma and bias and this perception, it probably doesn't exist with the people who are studying it, right? But that's not true in research and it's just this unspoken rule that we don't, you don't talk about it. It will hold you back. It will bring you chances of a career. You won't be taken seriously. You will lose opportunities. All those things if you talk about your lived experience. Obviously, if you can tell from this podcast, I do not do that. I have had a very natural, traditional path. I have been very open and vocal and public about my lived experience. It has been a very huge part of my journey to even coming back to school and becoming a researcher. And I have just fur better for worse than very open. That being said, oh, I guess I should also say that with these people who I presented with, it took me, I mean, it's not like I met them and I was like, hey, I have some, I have OCD hello. I met them in, for the most part, in research settings. And then it came out as we continued to talk. Plus, you know, some of them were involved with the commercials, the biohavin commercials, where I am one of the people with OCD that are inside commercial. So, you know, I didn't really have a choice. It was going to be out there. I obviously had the choice to do it. And I knew it was going to happen. But, yeah, it was just known. So, that and also being an IACD advocate and introducing myself as such and not being a part of my CV and the way I've introduced to some of these people, it's just, it's just there. And I have received so much support and just being treated really amazingly by particularly people on this panel. That being said, though, when going into a actual panel presentation in front of hundreds and hundreds of other researchers and it being a research track presentation, even though it was open to everybody, it's not typical or normal at all to get the stage and introduce myself as hello. My name is Uma. I have OCD. And for whatever reason I did, I had each of them introduce themselves and talk about their affiliations and basically sum up their role in research. And then there was my turn to introduce myself. I straight up said, I'm a neuroscientist, I'm at this, that the other thing, I'm a PhD student and I'm someone who lives most importantly, I'm someone who lives with OCD and PTSD and other conditions. And that is hugely inspired by work and guided my career path and why I'm here facilitating this panel today and really just giving context for the fact that as someone with lived experience, I saw the need to. Bring this conversation to the larger community rather than just stay in the research space. So just introducing myself alone in that panel and that setting on the stage with those people was it it of itself life changing and new. Next level of reclamation of my fullness, my sovereignty, my complexity and my all my identities in one place, which is already amazing and cool and great. And the actual panel was so incredible and just so robust and I was surprised at myself for my contributions and like I really wanted to use my role as a neuroscientist as a trainee as someone who knows the questions to ask to get the answers that I know need to be told and to frame it and translate in a way that makes sense to people who aren't in the most depth of research. Like I really wanted to use my role to amplify everything they were saying, but I was surprised at the empowerment I felt after they would share and sometimes get really get into the nitty gritty and kind of talk so much like they are as the really really intelligent and deeply knowledgeable researchers they are. I would come in and summarize what they were saying and put it in context for people and kind of make it click in a way that I could sometimes see people were lost and confused about all the different words and we're taking a lot of notes and just I was surprised at the empowerment I felt to contribute myself to that communication to that gap to. And also realizing that I actually had a brain and was able to understand this information enough to do that myself and to ask the questions and to run this whole session so that was also amazing and so exciting and obviously I was terrified and sweating the whole time and I was I was told by people my friends who attended that they had no idea but like hello have you met me have you heard me ever talk like the definition of Uma is being out of 10. Or 15 out of 10 in those situations but anyway that was amazing and then what was super unexpected and wild to me was Dr. Audrey guys who I talked about before the amazing human she is she in the middle of all this just put me on the spot and told me that amongst all the research they were talking about that I was also supposed to share my own. And I like a pro deflected and said I would share it later in the context of another part of the conversation I was going to bring up and where my research kind of fit into the comorbidity space of that conversation so I put it off the first time but I honestly didn't intend to share my own and then.
I still laugh every time I think about this, but I was finishing up the panel with them and she straight up interrupted one of the other panelists and took the microphone and was like, "I'm sorry, but before the sense we need Uma to share her research and tell everybody about her contribution to this field and the intersection of psychedelics and OCD and I was just like, "Oh no, I don't need to, it's fine." And then the whole room of, which by the way, I forgot to say, the room was completely packed out. Like people were sitting on the floor in the middle of the aisle and like it was hot in there because of how packed it was and people were like in the doorways and out the doorways and it was just, I am so blown away by the reception and I was, I didn't know if anyone would care if anyone would come and they did and it was wild, but anyway that whole room just started, I had, oh my gosh, it's so wild even even say that. They all started chanting like, "Muh, muh, muh, muh, muh, to get me to say it, to do, to talk about my research." And I felt just so seen and supported and uplifted as a full human in that moment. And I did share my research and I got kind of emotional and I'm getting emotional now. And I shared my research in the context of where the research came from, which was my lived experience and how that translated into my question and long story short, the findings I found. And once again, it was just this integration of my full self because it wasn't just me talking about the question and the findings. It was why I had the question and where it came from and what I was inspired by. And that was just so once again amongst my absolute heroes in front of so many people. And then I was just met with so much support after and upliftment again and then to capital off. This is a moment I will never forget and I am so lucky that there were people. It was actually someone, when a doctor readurings is trainees, who got these pictures of these moments at the end and then sent them to me and just it was so serendipitous. And I will never ever forget and I'm so grateful to have pictures of these, but at the very end of the panel, I was thinking everybody for being there, all of the panelists for all the work they do, was telling them how much they have inspired me and just thanking them for their time for doing such a panel and sharing their time and knowledge with people. And then my heroes took the mic and they turned to me and pointed at me and told me that I'm the reason that this panel happened and thanked me for my work and my contributions to the field. And for what I've done as a communicator and for just turned around on me and uplifted me and in the context of everything I just shared of for the first time that I've ever seen anyone do and that I've ever done like fully truly in that very formalized setting. Being someone with OCD, being someone completely open, fully open about being an advocate in my lived experience and being all of those parts of myself in one space as one my full self. And then after all that, after sharing my own work, after being put on the spot to share my own work, being uplifted and pointed at and like thanked by my. Heroes, my mentors, I can't put into words what that felt like. I've never felt so whole and seen and supported and uplifted as my full self. Ever in a setting like that, I do in my life, I do by people in a lived experience community in the advocate community and the people who love me in my life and my day to day life, my husband, my friends, my peers. And those are so important and I'm so grateful and there's always been this sadness, this just belief that it wasn't it wouldn't be possible amongst the space of my life that I exist so much in of being a researcher of being a professional being someone taken seriously of being someone who is a scientist and who has a contribution to make. And it's always just been a foreground conclusion that I've been told and then I've sort of believed that either I mean well what I've really been told is I can't share and I can't be myself and I can't disclose my lived experience but I have to find that part and I know I could because I have and somehow I've gotten away with it somehow I've gotten to like beyond the rules of what stigma and society in vice-base is told me as possible and I've. I've even been able to progress in my career but what I really didn't believe or think would that would be that I'd be uplifted and supported and recognized for my full self. I thought I'd just be tolerated at the very least for my full self and yeah okay you have it but like let's talk about the research and let's not talk about the fact you have it other than that's why you're interested in this and some form of like a resilient story and that's it. This was so different than that this was being seen and held up as my full self and that changed my life forever and it's a month out since then and I'm just still every time I reflect on that every time I feel that it's just changed me fundamentally as a person and the way I feel like I'm able to now approach future opportunities and this podcast and the confidence and I'm going to be able to do that. In empowerment it started to give me in terms of how I communicate and how I'm going to approach my PhD program as I start and what's possible it's just expanded me beyond belief and I'm so grateful. I'm so grateful I just didn't know that was possible I didn't know that would happen I was so excited and giddy about this panel happening because of the content that was going to be shared and this communication this funnel that was going to be created. Between the researchers and the humans who care and I was so grateful for being able to facilitate that and be a part of it and percent with my heroes but I did not foresee all those added parts of what I would do for me as a human and the integration of my full self and just expanding the possibilities of how I can exist in this world and the way I can be in this podcast. Like a version of that being able to exist in a space I never thought possible the research base. I had to talk about that to process that to share that and to let y'all know what more is possible when you share it yourself and take risks and allow the possibility for it to happen and forging our own paths ahead. Really truly beyond what people tell us is possible and it's terrifying and scary and it will not always go like the beautiful happy way and like the reality exists of stigma and discrimination and struggle and judgment and bias and all of the shitty things that exist in this world and big and a lot is possible beyond what we're told if we just try. I feel like I just said everything like truly what was on my heart and I'm like how do I even move forward with this episode like that's the end but I do have a few more things just gonna blitz through real fast in terms of some of the takeaways some of the data and just some of the cool shit that I got to learn in here that I know some of y'all want to hear too. So, okay, focus on that. Okay, so there was a panel with just like a medication town hall basically on Com Talk to you for different psychiatrists and hear some like ask your questions about medication and hopefully they will be answered. And two of them were actually Dr. Rodriguez and Dr. Pintinger and something that was really important that was mentioned there that I feel like needs to be said beyond there on the podcast because I see so much information or misinformation about this on the interwebs all the time is the idea of brain imaging for OCD or just even just psychiatric illness in general. Let me make this very clear and I'm quoting the psychiatrist and anyone in the field who would say this. Brain imaging is not used for diagnostic purposes if anyone is telling you that they can show you your OCD brain by giving you a brain scan they are lying. They are like quoting someone else.
Dr. Pitinger, not, but also I would say that myself too. That is not something that exists right now. Have you ever gone to a doctor to get a psychiatric diagnosis and get a brain scan in order to confirm said psychiatric diagnosis? No, because that's not a part of how we diagnose illnesses. Brain scanning on many different levels exists. There are technologies. I have an episode on Brain Research 101 and talks through all of the diagnostic and lack thereof ways of looking at brains and all the different levels of brain research and limitations. And there are a lot of limitations on the current state of all different kinds of brain imaging and brain scans, FMRI, MRI, EEG, etc. Catskans like so many. They exist. I mean, there's you weren't petskant. I mean, I'll stop. There are many forms of brain imaging. None of them are used for diagnostic purposes. There are reasons that you might see reports about brain imaging related to OCD or other psychiatric illnesses and they are not diagnostic. What they are are comparative, long story short, they're comparative of looking at different conditions and looking at different before and afters or compared to healthy controls and looking to try to see different correlative or even causative differences in different parts of blood flow, connectivity, activation, etc. They are not used though for diagnostic purposes. And as Dr. Pitniger also said, if you look at a wide variety or a large number of OCD patients, or often the not, you're going to find that most OCD patients seemingly by the standards of what people think are OCD brains have normal brains in terms of one brain scan. And I'm not saying they have normal brains. I'm saying on brain scans, their brains look like the quote unquote normal brain people are thinking of when they think of diagnosing something with a brain scan because that doesn't exist right now. I wish it did. Hopefully, we will get there at some point, but at this point, it does not exist. So please don't go soliciting a brain scan to prove that you have OCD or look at your OCD brain. If you're part of a clinical research study, there would be a specific purpose to which you would be seeing your brain that has any form of a result. It's not a diagnostic tool though. And if you are finding, I'm trying not to be specific with this, but in terms of naming people or services, but if you are finding a service that is telling you that you can get a scan to tell you what your OCD brain looks like in the words of the psychiatrist and clinicians who are the experts of the field themselves. It is a scan point blank period. We'll get into this more another day, but in the meantime, listen to my brain research 101 episode to just hear a overview of the state of brain research. You can skip to specifically the scan part if you're interested in just that part, but I recommend you listen to the whole thing just to get a fuller picture of how we do brain research and what the limitations are and what every level of it is so that you feel more informed and resource to be able to look at these things being talked about on the internet unchecked to Lee and incorrectly and feel like you could interact with them in a more engaged, informative and educated way. And last but not least, we have the OCD PTSD comorbidity research that was talked about at length in multiple sessions and a SIG presentation that really, really excites me personally because I have OCD and PTSD. I have them as a comorbidity. They are also functionally dynamic in relationship, which means that they latch on to each other and complicate each other rather than just having OCD PTSD separately and having them treated separately. So there's a large amount of new research being done on that field and stay tuned because I have a very exciting conversation coming up in the next few months with one of the seminal researchers doing that work. But before that interview and in the meantime, what I can tell you is just some of the cool conceptualization updates and statistics that have come out, which is, and I just rattle these off from the top of my head because these inform my research and I cite the stuff all the time, but to see it presented at the conference and even get some updates for things that haven't been published yet was really, really exciting. And so in PTSD populations up to 40% of patients also seem to be diagnosed with comorbid OCD and that's just with diagnosis at this point, like there could be higher rates given the lack of diagnosis that we are in the OCD community are all too aware of. And similarly in OCD populations around 25% of patients are also diagnosed PTSD. So very high in both sides of the comorbidity, which is very, very interesting given that they are not the same disorder, but they can have similar symptoms that just have different functions and can overlap oftentimes for sure. So very, very high overlap at comorbidity. Additionally, in terms of onset, it's really, really interesting that, you know, I think there's been a hope maybe to like kind of understand and conceptualize this comorbidity in the easy way that like, oh, maybe one tends to always come before the other and maybe one is just like a response to the other. So you know, either maybe OCD always or oftentimes is after PTSD or after a traumatic event. Therefore, OCD can be conceptualized as some sort of like full coping mechanism for the trauma or vice versa. And in terms of onset, the data currently is showing that it's actually like very equally people with OCD have an onset before their PTSD as much as their OCD onset after their PTSD and their OCD and PTSD on setting at the same time based on self reports and diagnosis. So there is like no seemingly rhyme or reason at this point in terms of time of onset before, after and at the same time. So also really, really fascinating. There are certain data points that are coming out and being found about different forms of trauma and traumatic experiences with the PTSD and trauma and correlations to different themes and symptoms of OCD. And that data is still underway and there's so much to report on. So I'm not going to go into details about that. But the fact that that's even being found is also very, very interesting in a thematic way. And overall, the state that to my understanding of all of this is it's just being explored right now is like this really important comorbidity and multiple assessments are being developed such as the OTTI and the Ptox. So those are two different assessments to assess the ways that PTSD and OCD are intertwined with each other to kind of help clinicians conceptualize cases because of the overlap and symptomology and understanding how to treat both and parse them out and understand the onset of each of them in order to help determine how to treat them. Honestly, because it's such a complex comorbidity and these tests are being validated right now. They've been published on and it's really, really exciting to see this subset of the field grow, especially because like I said at the beginning, those numbers are extremely, extremely high. And so there's so much more to say about this and I can't wait to have full-one conversation to the people doing this actual research. But I just wanted to highlight and update the major strides that the people doing this work have made and how grateful I am to be able to learn about it as someone who lives at the end and that this work is informing the treatment that I am experiencing and moving forward with as well as directly giving help to my own research on comorbid OCD PTSD in the context of psychedelics and therapy. And oh my gosh, I could go on forever, but I'm realizing that I am already at an hour and half of recapping and processing and I could just talk on and on about more findings and more experiences and maybe I will in a part two, especially if I get a lot of questions about something specific that I just talked in briefly, like in a small amount on the podcast that you want to hear more of. Of course in further conversations and interviews with a lot of the amazing people that I mentioned that I got to hear present or that I presented with that I am bringing on the show to have really full conversations with. And so just please let me know about all of your questions that come up. But my gosh, this conference was life changing so expansive. I'm still recovering. It was so much and I am so grateful for this space and for all of the beautiful people I didn't get to talk about all of the conversations and community and love and support that comes from being in this space of all of us just caring about OCD related disorders from so many different angles altogether. And I'm just really proud and honored and grateful to be a part of this community in so many different capacities all at once. And I just love.
I just love everybody and the way they show up. And I can't wait for the next one. I can't wait to talk more in depth about so many of these topics and all of this exponential catalyzing inspiration and growth that comes from being in this space as a researcher and as a human and all the things we learn about and get interested in and advocate for and so much that has changed for me in just one year of attending these conferences and how much more will change in the next year. So I'm just so happy that I got to share some just such a small part but some of this recap with all of you. I can't wait to talk more in more episodes and more depth with the people who I love so much from all different capacities and walks of life. And thank you so much for sticking with me on this really robust and topic-neudian episode. I love spending this time with you and co-creating with you and just sharing all the things and hearing back from all of you and thank you for being here every single week with me as we just talk about all the things in all the ways. I love you all. You are my people and I'm so grateful for this space with you. If you love the show and you really resonate with what we're talking about on these episodes and the conversations we're having, then first and foremost if you could just take one second right now wherever you're listening to this episode to subscribe to the podcast and leave it a five-star rating and review because that way you'll be the first to get new episodes and you're really, really helping me continue to create this right now. I am a team of one doing this and all of your support means the world to be able to grow this show, to grow this community, to help more people feel safe and supported in joining this space and co-creating with us. So thank you so much for your rating, review and subscription. Also, if you could share this episode and any episode that resonates with anyone who you think would be supported by these conversations who wants to be a part of speaking in this way with this vulnerability, honesty and curiosity that we all value together. If you could share this episode by sending it to them via text or email or especially sharing it on social media, especially the clips that I have from these episodes, it would mean an absolute role to me and just thank you again for being here, for sharing your time and space with me. You are why I do this and I'm so grateful to keep hearing from you and co-creating with you and I cannot wait to see you next week or another episode of a chat with you. Have a beautiful week, y'all.
Podcast Summary
Key Points:
The host, Uma R. Chatterjee, is moving across the country and reflects on the personal transition while recording her final episode before the move.
She recaps her experience at the International OCD Foundation (IOCDF) conference, emphasizing her dual role as a researcher and someone with lived experience of OCD.
The conference is unique for bringing together patients, families, clinicians, and researchers, fostering interdisciplinary dialogue.
The Research Symposium, held before the main conference, features cutting-edge research from top scientists and trainees, including a competitive poster session.
Key research highlights include updates on OCD genetics, with Dr. Evelyn Stewart discussing work on heritability and pediatric vs. adult onset OCD, though no specific gene has been identified yet.
Uma prioritizes connection and community over maximizing session attendance, reflecting a healthier approach to conferences.
She aims to bridge the gap between research findings and the lived experience community, as many questions from advocates are already being addressed in research but not widely communicated.
Summary:
In this episode, Uma R. Chatterjee, a neuroscientist and mental health peer specialist, shares her personal and professional reflections during a major life transition—moving across the country—while recapping her experience at the International OCD Foundation (IOCDF) conference. She describes the conference as a unique interdisciplinary space where patients, families, clinicians, and researchers converge.
Uma highlights the Research Symposium, a full day of cutting-edge presentations from top OCD researchers and trainees, including a competitive poster session where she presented her systematic review for the second year. She emphasizes that while no single OCD gene has been found, Dr. Evelyn Stewart’s work on heritability and pediatric onset OCD represents significant progress.
Uma also discusses her intentional shift from maximizing productivity to prioritizing connection and community, noting that many research answers to common community questions are not effectively communicated to those with lived experience. Her goal is to bridge this gap by translating research insights into accessible conversations, reinforcing her commitment to both scientific rigor and authentic advocacy.
FAQs
It's an interdisciplinary conference where patients, families, clinicians, and researchers gather to discuss obsessive-compulsive and related disorders. It features sessions, support groups, and a research symposium.
It's a full day before the main conference where top researchers and trainees present the latest research updates on OCD, from genetics to treatments. It includes talks, discussions, and a poster session for trainees.
Not yet, but research is ongoing. Dr. Evelyn Stewart is leading work on heritability scores and genetic factors, especially in pediatric OCD.
It's like an adult science fair where trainees present their current research to senior researchers and attendees, allowing for discussion and collaboration.
Patients with OCD, their families, caregivers, clinicians (like therapists and doctors), researchers, and professionals from business or advocacy sectors all attend.
It brings together all stakeholders—people with lived experience, clinicians, and researchers—in one space, unlike most conferences that focus only on professionals.
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