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Trisha Suppes, MD, PhD: Hi. I'm Dr Trisha Suppes. Welcome to the Medscape InDiscussion Bipolar Disorder Podcast Series.
For our first episode, we'll discuss bipolar disorder patient advocacy, engagement, and stigma. Often, the "experts by experience," — which is another way of saying people with bipolar disorder — are somehow only included in research as subjects, and the activities around them can be very removed from the person.
So I'm very excited to have our first guest here, who has done so much for our field and filled a gap that we didn't even know was there until she filled it. My first guest is Dr Erin Michalak. She's a professor in the Department of Psychiatry at the University of British Columbia in Vancouver, Canada, where she leads the collaborative research team to study psychosocial issues in bipolar disorder. I'd like to read their mission briefly because I think it's so good at summarizing: "CREST.BD (Collaborative RESearch Team to study psychosocial issues in Bipolar Disorder) is dedicated to collaborative research and knowledge exchange in bipolar disorder. Our mission is to optimize the health and quality-of-life of people living with the condition and empower communities to engage in bipolar disorder research."
Welcome to InDiscussion. Maybe we could start with, how did CREST.BD get started? What inspired you?
Erin Michalak, PhD: Can we start with saying how excited I am to be joining you for the first episode of this series, Trisha? It is such an honor to be able to spend some time chatting with you and sharing expertise and knowledge. And thanks so much as well for sharing the vision and the mission of what we do at CREST.BD. There's a couple of things that stand out for me in your description. We are a research network and focus on psychosocial research.
We began about 15 years ago, and you know as well as I do that at that time, there really wasn't as much focus on psychological and social research, in bipolar disorder specifically, as there needed to be. But at the very outset of beginning my career, in psychosocial research in bipolar disorder, something that became very obvious to me very early on was that we were missing a key element of expertise in the research processes we were doing: the experience expertise of people who live with bipolar disorder on a day-to-day basis and the experience of their family members, friends, and supporters. CREST.BD centralizes and elevates the importance of that expertise in research processes.
Suppes: What was your vision at the outset? Did you ever see it becoming as big as it is?
Michalak: It began from a place of pure fear and imposter syndrome. I remember doing the very first interview, a clinical interview that I had with somebody with lived experience of bipolar disorder, and at the end of an hour and a half of talking to her, I realized that there was no way as a researcher who doesn't live with this condition that I could work effectively with full impact in this area. So beginning CREST.BD, I never imagined it evolving into an international network specializing in this. It was a bit more personal. It was just that I knew that I couldn't do a good job in a silo as a researcher looking at a condition that is so diverse and varied from a myopic view.
So, did I think it would evolve into a network that flourishes and thrives in this way? No. It's wonderful to be here. We've learned a lot of lessons along the way, but it was much more self-centered in many ways at the beginning.
Suppes: Well, you say that, but one measure of success to me is if the founder and creator could step away and what they've started will continue without them. I believe that would be true for CREST.BD right now, which doesn't in any way minimize your presence, but I think it does speak to something you've created that will live potentially past whatever your engagement is.
Among other things, I was very struck by your TalkBD, where there's a very accessible, simple menu of topics that anybody, whether they're someone who has bipolar disorder or a family member, can access with some of the newest information and also topics that we don't always see covered.
Michalak: I'll dive into a couple of things there. First of all, the problem is if you as the average person who's just got a diagnosis googles "bipolar disorder," what you're mostly going to find is doom statistics, misery statistics, and some pretty scary information that might put a real ceiling on your understanding of recovery, potential recovery, and a full life with bipolar disorder. So counteracting that is important.
TalkBD was such an interesting experience in terms of the way we developed it. It began, like many groups, right at the beginning of the pandemic. The first online gathering we held was in March 2020. We knew that it was a really important time to be able to create a home, a place for people to come together to connect when we were socially and physically isolated. At the time, we ran it through Zoom platforms, and it was always somebody with lived experience and a clinician and a researcher. Since then, 3 or 4 years later, it's now a podcast and a YouTube channel; it's grown exponentially and gives us the opportunity to get into some of the key interest areas of clinicians and healthcare providers, and also people with bipolar disorder, in a way that is also looking at that lived experience expertise of those research areas too.
Suppes: I know research is also part of your mission. How does research interface with the different platforms you have?
Michalak: They're complementary and sort of bidirectional. Another example of what we would understand as a communication platform that we do every year is using Reddit for an "Ask Me Anything." We have this very large conversation — thousands and thousands of interactions and questions about bipolar disorder around the time of World Bipolar Day. So you could understand that as just a communication, a push, a communication platform. But that in itself allows us to shape our research priorities.
We're actually writing a paper now using natural language processing and artificial intelligence techniques where we're asking, "What are the key questions of the past 5 years of doing that that the community are asking on Reddit?" We can then use that to shape our priorities for research to say, okay, this is coming up again and again but our research is lagging behind in these areas. So there's a symbiotic relationship between knowledge dissemination and exchange and research, which I really enjoy.
Suppes: That's really terrific. What do you find are some of the most current questions for folks out there with the illness, or even with folks who are addressing the illness? What are some of the key cutting-edge questions?
Michalak: Again and again, we hear, what new treatments are on the horizon? There are a lot of people with bipolar disorder who have experimented with their clinicians, with many different medications and regimens, and haven't quite found the sweet spot yet, and they're eager to learn about what new options might be on the horizon. Psychedelics and plant-based medicines come up frequently, and new innovations in those areas.
Some of the more poignant questions that come up again and again are around stigma and discrimination. I can't tell you the number of times we've heard heart-wrenching stories, sometimes from physicians or pilots or people who are potentially at real risk if they disclose their bipolar disorder.
They'll join us anonymously online and say that they have never told anybody, except for maybe their treating psychiatrists, that they live with the condition, which is heartbreaking. It tells us how much work we have to do at a societal level, clinically, and in healthcare systems to break down some of the stigmas that surround this particular condition.
Suppes: How important is that isolation you're letting them break out of, even though they're anonymous — the fact that they can share and be part of a community that is working toward greater health and greater well-being? Because as we've discussed in the past, medications are of course important, but that's not the end of the story for folks with bipolar disorder. In fact, for people with any illness, and people who are "healthy volunteers," well-being doesn't come from just the meds. I'd be interested in your views on that.
Michalak: We've heard about the importance of community again and again across different projects. We spent a couple of years working with youth with bipolar disorder once, and the key message that they wanted to share over a 2-year project, at the end of that, was that you are not alone in this. What's interesting about the Reddit and the TalkBD outreach that we do is that it creates a space for people to come together that's supportive.
It also speaks to the importance of peer support as well within the palette of treatments and supports we have for people with bipolar disorder. Peers, mentors, buddies, people who are slightly further along or a bit more experienced with the condition can help out those who are a bit earlier on in that journey. You can't underestimate the importance of that.
Suppes: I think that's beautifully said because folks, in part because of stigma, can feel like they're the illness, but they're not the illness. The illness is something in their brain and not who they are. I feel that this message doesn't get communicated very well often.
Michalak: Some qualitative studies have looked at that — a sense of self and identity in bipolar disorder. A lot of people talk about moving from a place soon after they've been diagnosed where they are all-encompassed by the condition: "I am bipolar." And then a journey beyond that for many people to a point of compartmentalization, where [they realize], "Bipolar is part of me, but just one element. Beyond that, I'm a parent, a mother. I'm a great dog owner. I'm a gardener. It's part of my life; it's not all of who I am, though."
Suppes: Going back to your starting TalkBD, which now has a tremendous library of talks and subjects, you picked an amazing moment to start because the entire planet — at least briefly and still a fair amount — went online. Did you find a difference in the engagement from folks during the pandemic that was different from before the pandemic?
Michalak: We were lucky in that we were already doing a lot of work in digital mental health, and so we had the technological expertise to get it out quite quickly and early on in those early days. I'm a big fan of digital mental health and apps and web-based interventions. I'm also a little bit cautious about moving entirely into online spaces and losing the power of human connections as part of that.
We do work hard to try and run hybrid events still and not move entirely online, because there is something about having people in the same room, in the same space, that can be very powerful in itself. So different methods and different techniques for different projects is our approach at this point.
Suppes: Where do you hold your hybrid events? Do you hold them in locations besides Vancouver? Are there other places?
Michalak: We've done some roadshows. We're a Canadian-based organization. An example of an event we did was that we produced a one-woman narrative called "That's Just Crazy Talk" with Victoria Maxwell, and it was designed for a research study specifically to address stigma and bipolar disorder.
We toured that show around Canada. Whenever we showed the performance of the play, we ran a research study. We tested attitudes before and after people saw the show. And you know what? It's so important, especially for more rural and remote communities, indigenous communities, diverse, ethnoculturally diverse communities. You need to go to many of these groups, not expect them to come to our hospitals, which are not always the easiest places to get to or the warmest environments.
Suppes: What have you heard from folks who feel very isolated and yet are able to access your material? Has it encouraged them to seek more treatment — for example, if they have unresolved symptoms and this empowers them potentially in some way?
Michalak: The real struggle that they're having, even beyond getting a general practitioner or access to a psychiatrist, is getting basic psychoeducation about the condition. You would think that these would just be core elements, the bog standard of what we would provide to somebody with bipolar disorder. Points of sleep, exercise, diet, routine — many, many people aren't even getting that yet. So the really big next step for us, ironically, is to make sure that we're providing the basic elements of care, pharmacological and psychosocial, to people with this condition.
Suppes: That would be terrific because that could become an automatic inclusion, which then also brings them into the CREST.BD family where they can see that it's not just doom and misery, that there's lots of possibilities.
Michalak: And one of the other things is that we hear this narrative about everybody having smartphone access and the digital technological access, and it's not actually [that accessible]. Okay, a lot of people have phones, but we have to think about poverty and socioeconomic status as part of this, and they also don't have bandwidth. They don't always have the type of data that they need in these rural communities to be downloading or accessing videos, for example. So we really have to think about the digital divide in these areas as well.
Suppes: I think that would be a study right there, because I know I don't think I've thought about that much. That would be an interesting study to me, just to show how much difference there might be in even the potential to receive basic information, let alone seeking out care.
Michalak: And don't you think maybe the option is to give people a palette of options so you have that core information? Maybe for some people, it needs to be as simple as a PDF that they can print out or that their physician can give them in the office. For other people, it might be a very advanced app that they want to use. For some people, it needs to be web-based; for others, peer-to-peer support models. We have a really good evidence base about self-management and psychological treatments for bipolar disorder. Now we need a palette of options that people can choose from in terms of how it would suit them best to access that information.
Suppes: There's always this talk about both underdiagnosis and overdiagnosis. Is that something you spend any energy on, or is that peripheral to your mission?
Michalak: We developed a quality-of-life scale for bipolar disorder specifically, and over and over again, I get people asking me, "I want to use it for a condition that looks like bipolar disorder, but is not quite bipolar disorder. Is it going to do any harm?" No.
A lot of the core elements of quality-of-life and psychosocial treatments are going to be similar across different types of conditions. So if I'm clinically supporting somebody whom I think is on the spectrum of bipolar disorder somewhere but I'm still not quite 100% sure or not settled on that diagnosis, if all I'm providing in terms of psychological support are the key elements of what we should be doing anyway regardless of the nuanced specifics of that diagnosis, I consider that less of a concern.
Suppes: In our opening, you mentioned psychedelics and bipolar disorder. As you know, there's a huge focus right now in psychedelics. I personally have the cautionary note that they're not going to be for everybody, and we don't know yet really who they're going to work for, but they do work for some people. I wondered if you had any thoughts about whether bringing them in into a medical care setting might be helpful for some people.
Michalak: We've been collaborating with Dr Josh Woolley's group in the Bay Area a little bit on this. They're doing the beginnings of trials in at least bipolar disorder type 2 in this area, and I'm very, very interested to watch these data start to come out. The piece that we were supporting with through CREST.BD was a survey — a large survey of about a thousand people internationally who reported using what we would call a "hero dose" of psilocybin, so 5 g or more of psilocybin, not microdosing. We surveyed them about their responses, reactions, consequences, and experiences after that.
The data are interesting. There are certainly some cases of people reporting problematic outcomes — increased anxiety, sleep, a few hospitalizations — but not that many. We've got to treat this information as survey data, which is what it is. But I agree with you that this is not going to be a panacea in terms of interventions. For me, having learned what I've learned so far, it's the importance of making sure that we're integrating what people are learning during these journeys with plant-based medicines into their lives, into their sense of self. That is a key part of the picture.
So I'm watching this space very carefully and with great interest. We have a lot of work to do yet.
Suppes: Yeah, we're at the front edge. I think it's important to distinguish between folks with bipolar 1 disorder who have a history of full mania, vs those with bipolar 2 disorder, which is much more notable for depression and hypomania — particularly depression. There have been some early studies with Dr Scott Aaronson, and you're involved with Josh Woolley, and now I hear Dr Lakshmi Yatham also will be doing one. So I think doing this with bipolar II is a natural place to start, and it's not quite clear where that bridge will be or not toward bipolar 1 disorder. So psychedelics might be yet a new treatment.
What I'm always reminded of is that in the 1950s when Thorazine and imipramine and lithium came into people's awareness, they thought it was the end of mental illness. And I feel like the psychedelics will be another tool — an important tool, but probably not the end.
Michalak: We started off earlier talking a little bit about stigma and bipolar disorder. I'm going to start by saying this condition can be lethal, and we don't want to underestimate that or the amount of trauma, damage, or harm it can do physically and emotionally. That being said, for some people, the condition also confers some advantages and some assets: enhanced creativity, and a real ability to think laterally. There have been some interesting studies; there's that classic study asking people if they had a button where they could switch off their bipolar disorder, would they hit the button? And not everybody said that they would switch it off. So it's interesting to think about this idea of eradication of mental illness, which, of course, will never happen.
Suppes: I love that you're bringing that up about bipolar disorder, because for someone who has this condition, if you look up and down their family tree, you're going to find a very, very highly functional person who doesn't have bipolar per se but who sleeps a little less, is very stable, and gets more done than most people. So I think there's a good reason that bipolar disorder has been preserved because in tough environmental conditions: Those people will survive. There's some advantage.
Thank you for bringing up the lethality, because we really hadn't touched on suicide. I do think it is important to remember that bipolar disorder has a dominance sometimes of depression and great despair. One reason I really appreciated the work you've been doing is because I feel it doesn't minimize any of the issues, but you're providing windows that open things for people. To me, that's really critical.
Michalak: Trisha, you've had, I don't know how many decades — many, many years of experience in working with people with bipolar disorder. If somebody comes into your office now — say, your classic 17- or 18-year-old who just had their first break of mania, so it's a clear diagnosis — and they're terrified, what words of hope do you give them at that point if you have that window of opportunity as a clinician? What do you say to them?
Suppes: I think the discussion would depend on what their insight is, because as you know, a portion of people, particularly early in their course and sometimes for the whole course, don't have an insight that they have something going on.
They aren't able to remember mania, for example — literally, they can't remember it. So I think if you assume someone has insight, I would discuss with them that this is like seizures. That's the metaphor I use. People use diabetes as a metaphor, but I don't think diabetes is a good metaphor. With seizures, though, you can stop taking your medicine for a while and you won't have a seizure. Bipolar disorder can be like that. So I probably would talk about how important for their life stabilization of their brain is, not just with meds but with other aspects as well, and that they won't be defined by it.
I think sometimes with very ill people, when you've done really all you can do, the one thing you're doing is you're sitting with them, and that provides hope. Sometimes that's really the only thing we have. And again, I love the program you've done. I don't think we mentioned it, but did you tell me TalkBD reached 300,000 views last year?
Michalak: Yeah.
Suppes: That's not an insubstantial number. That not only speaks to the broad-based interest among the public, so to speak, in bipolar disorder, it also speaks to the reach of providing not just medicine, but also more about everything around having bipolar disorder. I personally think that's very inspirational.
Do you have any last comments about what the future holds?
Michalak: I was just imagining you sitting there in your office with that client, with that patient. And the other thing that sprung to mind was that, coming back to the words of those youth with bipolar disorder that we worked with, you're not alone. We're not alone as clinicians. We have a wonderful research and clinical community, really advancing some incredible work in this area. And we have a legion of people with lived experience, joining us shoulder to shoulder to shape science and society for people with this condition. So I feel a lot of hope when I look toward the future.
Suppes: Thank you so much for bringing bipolar disorder out of the closet. That's what I feel some of your work has done.
We've been talking to Dr Michalak. It's been a great conversation discussing what patient engagement is like, what can come from it, and how it can be helpful.
I recommend CREST.BD and TalkBD. You can find it on all channels. Thank you for tuning in. This podcast will be available also on all the usual platforms, and you may want to download the Medscape app to listen. Please feel free to subscribe to this podcast series on bipolar disorder. This is Dr Trisha Suppes for Medscape InDiscussion.
Resources
Collaborative RESearch Team to study psychosocial issues in Bipolar Disorder (CREST.BD)
Victoria Maxwell: That's Just Crazy Talk
Psychedelics in the Treatment of Unipolar and Bipolar Depression
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Cite this: How Patient-Centered Research Is Transforming Bipolar Disorder Care and Dispelling Stigma - Medscape - Mar 27, 2024.
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