Let’s talk clinical trials, shall we? (Spoiler alert: One of our guests on this episode has been enrolled in one for 33 years!) In this episode of The Mighty Podcast, host Ashley is joined by Jackie Scott and Peter J. Franz, Ph.D., to explore the world of mental health clinical trials.

Jackie is a speaker with the American Foundation for Suicide Prevention, creator of the PS Project, and mental health advocate living with depression. Pete is an assistant professor at Yeshiva University and Albert Einstein College of Medicine. He conducts research on depression, suicide, and other topics related to mental health.

Together, the trio discusses Jackie’s involvement in her longstanding clinical trial for her depression related to her lack of serotonin, Pete shares his experience as a researcher — including some of his work on suicide prevention — where he tested whether reading other people’s lived experiences could be used as a therapeutic resource, and both share their wisdom for anyone considering if a clinical trial is the right fit for their mental health journey.

This episode touches on suicide and suicidal ideation. If this is triggering, be sure to avoid these sections of the episode: 6:17-8:21 and 20:25-20:47.

You can also listen on our Spotify for Podcasters page and on Apple Podcasts.

Additional Links:

1. If you live with depression, take this pre-screener to see if you’re eligible to participate in the Juniper study: https://bit.ly/3FvmP8R
2. ClinicalTrials.gov

Episode Transcript:

Ashley Kristoff

Welcome to The Mighty Podcast where we infuse the health space with positivity, humor, and vulnerability. The Mighty is a safe and supportive community here to help you find the people and information you need to navigate your health journey. We are so excited to spend some time together today. This podcast episode is sponsored by Otsuka. Now let’s get into what the health we are talking about and today we are going to be talking about major depressive disorder or MDD and clinical trials for mental health.

I also just want to mention that on this episode, we will be briefly touching on personal experience with suicide and suicidal ideation. If this is a triggering topic, we totally get it and we have included timestamps in the episode description, disclosing when this portion of the conversation occurs if you need to avoid it. Please take care of yourself. 

As always, I am your host, Ashley, and to talk about these topics we have two incredible guests here today – Jackie and Pete. Welcome! Can you both share a little bit about who you are and your relationship with MDD, mental health, and clinical trials? Let’s start with you, Jackie.

Jackie Scott

Hi! First, thanks for inviting me. I have lived my entire life with mental illness. I was recently diagnosed with treatment-resistant MDD, which means that I’ve had a hard time finding solutions. But along with living with a mental illness, I’ve done things with the American Foundation for Suicide Prevention – raising money, doing walks. And I created a housing program for adults with chronic mental illness because it was something that needed to be done and nobody was doing it. So I did it. I’ve also been a strong mental health advocate for years, changing a lot of the things that happen in our local area. So now I just do speaking to different groups and try to get the message out that there’s hope no matter what’s going on with you. There’s something you can do to make life better.

Ashley Kristoff

Well, I’m thrilled to have you here today and to share your experience and your incredible background with our audience. Let’s turn it over to you Pete.

Peter J. Franz, Ph.D.

Thanks so much for having me. I’m really happy to be here. I’m especially happy to be able to talk with Jackie about these topics that I care a lot about. I’m an assistant professor at Yeshiva University, and I teach in their Graduate Psychology program. I’m also an assistant professor at Albert Einstein College of Medicine and Montefiore Medical Center, where I conduct research on depression, suicide, and other mental health concerns with a special focus recently on thinking about how we can use people’s lived experience as a therapeutic resource for others who are struggling.

Ashley Kristoff

Thank you, both of you for being here, sharing your experiences, bringing your expertise and perspective into this conversation. We always talk about The Mighty as a verb here and this idea of empowerment. So, what makes you feel Mighty or empowered to speak about these topics, whether that’s in your own journey, your career, or just general sentiments around that? Why don’t we start with Jackie?

Jackie Scott

What makes me feel Mighty is just being able to talk about it. Throughout my life I’ve gone from where mental health was something that you talked about, it was shameful if you went to a mental health center, and now to be able to be in front of other groups talking about it being on a podcast. The fact that I’m just the liberal person with lived experience, and I’m sitting here having a conversation with a professor is very empowering.

Peter J. Franz, Ph.D.

I think for me, what makes me feel Mighty in the sense is being in a position to have these conversations with folks like Jackie, who have lived experience to try and give a voice to those types of experiences, and largely to figure out how we can use the resources that we have to help other people who are struggling. Suicide is really challenging as a topic and I think it’s important that we find ways to support people. And I think that I’m working to try and do that with my research team and our students.

Ashley Kristoff

I just love that you all have the perspective to bring in with helping others because I think that’s just a beautiful way to lead off this conversation. I’ll answer this question as well. I’m someone who’s always really been fascinated by the idea of clinical trials for mental health. I feel like the perception I had growing up was that they were not for mental health conditions. And so it’s something that in recent years, I’ve had a lot of curiosity myself around. Is this something that I would be interested in participating in? I don’t know enough about what they look like, I don’t know about the types. So, it’s really been the barrier for me learning more. So I’m excited to be able to talk about this today, hear that experience from both your perspectives and then see if it’s something even myself wants to look into a little bit further. I will ask you the same question at the end to see if your answer changed after we chatted for a little while.

But for now, let’s jump straight into the topic. And so, just for our audience members who maybe do not know the details around major depressive disorder or MDD, Pete, would you be able to give us a little bit of a background on the topic and what got you into your field of work?

Peter J. Franz, Ph.D.

Sure. MDD or major depressive disorder – it’s a syndrome. It’s a collection of mental health symptoms and the symptoms might sound really familiar, it’s things like feeling really sad or hopeless or feeling like you don’t have a lot of energy. Eating too much, or too little. Sleeping too much or too little. Feeling hopeless about the future and potentially having suicidal thoughts. These experiences sometimes co-occur, meaning they happen at the same time in the same person. Any one of those symptoms are things that I think are very, very common among people. And just when they happen at the same time, and in the same individuals in a sustained way – like for two weeks or more for example – we call that major depression.

I’m very interested in depression because my research largely is about suicide. And as I mentioned, suicidal thoughts are one symptom of major depression. And so people who have depression have higher risk for suicidal thoughts and I want to understand more about that experience. And ultimately, I want to be able to help people who are having those experiences to feel better. And so that’s been a driving force in my professional work for many years, starting when I was a graduate student and first got introduced to this topic. And I’ve built a really strong passion around better understanding this so that we can ultimately predict and prevent the occurrence of suicidal behavior.

Ashley Kristoff

Thank you. I love that background and now I want to turn the question to Jackie and just really ask what your experience with depression has been.

Jackie Scott

While living with it my whole life pretty much, as Pete said, it does make you suicidal. I pretty much thought about suicide 24/7. I may not have been actively doing it, but I thought about it. It was always an answer to anything that happened. The first time I attempted suicide, I was 12 years old. The last time I attempted was October 8th of 2021. I’ve been through so many different medications. I’m allergic to a lot of medications. Finally, a doctor did some genetic testing on me and found out that there were a bunch of medications that I couldn’t take. My body didn’t metabolize them or metabolized them too quick. It came down to there were like two medications that I could even take – one of which I was allergic to. So it didn’t leave a whole lot of options.

I’ve been through ECT – I’ve had four different sets of it – and it really messes with your mind. It didn’t help my depression a whole lot, but I kind of didn’t remember that I was depressed for a while, so that was not something that I wanted to do really. It was something that the doctors decided that that’s what was going to happen because nothing else worked. I’ve had a lot of doctors that have given up on me because whatever they prescribed doesn’t work. And that’s where finding out that I had treatment-resistant major depression made a difference.

After my last suicide attempt, I got the doctor that I have now who really listens to what I say. I can have conversations with her about feeling suicidal, and she doesn’t freak out and have me hospitalized or anything. As long as I can tell her that I have a safety plan before I leave, she understands that’s how I feel. I’ve been really self-destructive. And we don’t know if it’s related to the MDD or if it’s related to the new medication I’m on. So it’s hard to say. But my journey through MDD came to a head in October when I made an attempt and from that point on, my doctor has worked with getting me on a medication that, for the first time, is something that’s working. And now I’m feeling happy, which is a big difference from feeling depressed. I’m scared to death at the same time that if this medication quits working, or it’s one that they do, they titrate it down. And if they titrate it down too far, am I going to feel depressed again? I don’t want to feel that way. It’s an absolutely horrible feeling.

Ashley Kristoff

Yeah, absolutely. And there’s a couple of things I want to speak to there. Firstly, that that’s so relatable. I was diagnosed with bipolar disorder last year after a lot of trial and error and once we found the right treatment for me, it’s been a little bit over a year since I’ve been my version of “stable” and what feels good for me. And still that just sits in the back of my head, that fear, right? So just want to say that’s very relatable. And I want to go back for a second. You mentioned ECT could you just explain to the audience who maybe isn’t familiar with that acronym, what ECT is?

Jackie Scott

it’s electroconvulsive therapy. They basically put you to sleep and hook up a band of electrodes to your forehead and behind your ears and use shockwaves to create a seizure in your brain, which is supposed to rewire the direction of how things are jumping from one neuron to the next. It didn’t work for me the first time they did it because I was on a medication that is for pain, but it also stopped seizures, and they never considered the fact that I was on this medication that stopped seizures while they were trying to make me have seizures. And the other times that they tried it, it basically didn’t work. And so they pretty much gave up on that one, decided that there’s no point in doing it anymore. It’s one of those things, it’s kind of scary for some people because, oh my gosh, they’re gonna hook up electrodes to my, you know, visions of Frankenstein come into the picture. And it used to be a horrible treatment, people were awake, they just shoved something in their mouth. It was horrible. Now it’s much more humane, it’s nothing to really be afraid of. And for some people, it works really great. For me, no dice.

Ashley Kristoff

Yeah, that makes a lot of sense. We’re all so different. You had mentioned that the doctor you’re working with now has been really great. I’m curious about your overall experience with health care professionals up until now, with finding treatments or with looking more into your diagnoses.

Jackie Scott

Well, let’s say I have had doctors just say that there was nothing they could do, because they would be prescribing medications, or they’d want to put me on medications that I knew would make me sick, so I wouldn’t take them. So I was refusing treatment and so they would refuse to see me after that. I actually have received two certified letters from a mental health center saying that I was too complicated for them to treat. These were comprehensive mental health centers, not just a single therapist. I’ve had therapists that just couldn’t deal with the fact that I would say that I felt suicidal, they were scared to death what I was going to do. Even now with the therapist that I have, I have this paper that I fill out every week and take it with me that kind of summarizes my week. And the bottom question is, “Are you suicidal? Yes or no?”. So I can say, “No, I’m not actively suicidal,” even though the thoughts might be there. But it’s been a struggle to find a doctor that really listens.

Ashley Kristoff

Yeah, that makes a lot of sense. I’m curious Pete, have you ever been or known anyone in a situation where they have just said, I basically can’t help you?

Peter J. Franz, Ph.D.

Treating complex mental health cases is really hard. And there’s a lot of providers out there who will feel challenged by that and feel that maybe there’s another provider who can do it better, or who can provide the kind of help that individual needs. I think that can be very hard for the individual and I think that there’s a degree of challenge in acknowledging that.

And I think an important thing is for providers to work with the individual to find additional care in a case where their expertise is limited, or other challenges they’re experiencing and finding ways to help an individual. I have spent most of my time doing clinical work and larger medical settings, hospitals, for example, where there are large teams that are connected through multiple types of mental health training. So social workers and psychologists and psychiatrists all kind of working together to provide care through sort of a team format. And that’s something that I really appreciate because it means that when there’s challenges, we can get support as clinicians. And when we feel that there may be a different way to do things that we’re not necessarily trained for, we can refer to someone within the same health care setting and that can make things easier on the individual patient. But it’s hard. Mental health care is hard. It’s hard for the individual receiving it and it can be very challenging for clinicians as well.

Ashley Kristoff  

For sure, and I love that perspective of just showing up with what you don’t know and being very clear with what you don’t know because I think that only benefits the patient at the end of the day to be able to say I know that I can’t help you here but let me take that step to see what or who can.

Let’s take a quick break to share an opportunity for our listeners.

Otsuka is currently recruiting for a major depressive disorder study that is looking for participants that are currently experiencing symptoms of depression such as sad or low mood and reduced interest in activities You may be eligible to participate in the Juniper study if you are between the ages of 18-65 years old, have been diagnosed with major depression by your health care provider, and have not gotten better after taking one but no more than three treatment options for depression. To learn more, please click the link in the description to see if you’re eligible for the Juniper study or you can visit ClinicalTrials.gov and search the NCT number, NCT05536414 for more additional information.

And we’re back!

Jackie, what would you say led you to starting to receive the care that you really needed and was helpful for you?

Jackie Scott

The fact that my doctor was determined to find something that worked for me and as soon as I got approved for this medication, I was like the second person to get it. And she’s worked with me on the dosage and when we tried dropping it and it didn’t work she immediately put it back up. She listened to what I say. And that’s the big thing is somebody who listens.

Ashley Kristoff

I’m curious in your own life too Jackie, what has been the role of community or support systems in relation to your mental health.

Jackie Scott

For a long time, I really didn’t have anybody in the community that understood what was going on. I avoided people because I knew as soon as they found out what was going on with me, they’d think I was crazy and wouldn’t want to be around me. So I kind of avoided it for a long time. I’ve now gotten involved with a couple groups of people that are very, very supportive. There’s a local women’s club, for example, they’ve provide transportation up to the mental health center for me all the time. If I need help with doing something, they’re there to help. They understand that there’s things that I can do and things that I can’t do. And they’re still accepting of me. In fact, I have an office through the club, I’m the club secretary. So that’s not something that would have happened a few years ago. But they understand simple things, they don’t see it as a problem. And in fact, we joke about it, which makes it easier for me to know that it’s OK, and they’re accepting of me just where I am.

Ashley Kristoff

I love that and you really touched a little bit too about those, I forget if there’s an official term for them, but like the social factors that also impact your mental health. When you had mentioned it helps with travel, that is a huge thing is being able to get access to, whether it is a group in this case, or a health center, travel is a huge impact on if you can receive certain care. So I think that’s just very much worth stating here.

Jackie Scott

I think that there’s one other thing that comes into play with community and Pete and I had talked about this. When you’re dealing with major depression – hopelessness, helplessness, big factors, worthlessness feeling like no matter what you do, it doesn’t make a difference. And one of the things that I have found is, if I do things for other people, it gives me a feeling of purpose, a feeling of worth, and like I tell people, doing this stuff is part of me staying alive because it keeps me out of that worthlessness feeling. Especially since now I have physical disabilities where there isn’t a lot that I can do. But those things that I can do, I want to do so that I get that feeling of worth.

Ashley Kristoff

And I think that speaks to a concept we talk a lot about The Mighty where it’s like self-care isn’t just bubble baths, that can be a form of self-care. But doing all of the things you said are self-care for you. And that’s a really important thing as well. I would love to touch on, you had created a community to help you. So I would love to hear a little bit more about that.

Jackie Scott

Well, what had happened, I was receiving 24-hour a day care in my home from the mental health center. So I had seven or eight staff in my home. I had a case manager, I had the mental health director involved in my care, I had two therapists, and I had a psychiatrist. That was my life. I started getting better as my therapists worked through some of the trauma issues that I had. And one day I realized that if I got better, I would lose all my friends. Because all my friends worked at the mental health center. I had nobody outside of there. So I said, “Well, you know, I want to get better, but I don’t want to be alone.” So I started talking to other mental health clients and said, “Hey, you want to put together a support group and do things and be friends?” and had, within a month, probably seven or eight people and we’d get together at least once a week and do stuff. And then within about three months, I had 10 people living in my one-bedroom apartment, and I said, you know, maybe there’s a housing problem here in Parkersburg. And so I managed to talk to a guy who owned a lot of houses and, make a long story short, we ended up with two housing programs, a drop-in center, and I had built a house on the property where I lived right behind the main house. I mean, I ran that program for 13 years, and it was great. It was a peer-run program, all done by mental health clients, no professionals at all.

Ashley Kristoff

I’m just so impressed by both of you and your experiences and all of what you’ve done to date so far. At this point, I do want to swap into our next topic, which is talking a little bit more about clinical trials. So first, for Pete, what has been your involvement with clinical trials?

Peter J. Franz, Ph.D.

So I’ve been a part of a couple of clinical trials from a research perspective. I was a principal investigator of one clinical trial where we were trying to understand whether and how reading about other people’s lived experience with suicide and related concerns might be helpful to people. Is that something that helps? Is that something that we could leverage as a therapeutic resource? So that was a relatively large online clinical trial that we conducted with The Mighty a couple of years ago and it spawned a few offshoot projects that we are still trying to explore the ways that we can use lived experience as a resource for others. I’ve also been a part of a large-scale clinical trial examining group therapy for adults here in the Bronx who struggle with various types of life stressors, who are also caregivers to children. And so exploring what challenges they experience on a daily basis, make caring for kids really hard. And finding ways to help them connect about that and build social support. And ideally, through that social support, build some hope and some skills that may help them manage some of the challenges they face. So those are two clinical trials that I’ve been a part of and you know, as someone who’s largely invested in research, I’m sort of always planning more and thinking a couple of steps ahead for where we’d want to go.

Ashley Kristoff

And those just sound like such great things that you have been able to be a part of, I look very much forward to the ideas that are in your head that hopefully can become a reality one day. Jackie, can you share a bit about the clinical trial that you are participating in?

Jackie Scott

Well, it started because I was in the hospital at the University of Pittsburgh for a suicide attempt. And while I was there, I continued to be suicidal and I was very self-destructive. And they had just started a clinical trial on looking at the connection between serotonin and self-destructive, suicidal, and impulsive behavior. So while I was there, they asked me if I’d be interested in doing stuff. And I was like, “Sure, I’m not doing anything else.” And they were paying me a stipend to participate in it so I said, “OK” and that was how I got into it. And that was 33 years ago. And I’m still in the study. It started out where they did a lot of stuff, a lot of questionnaires, a lot of interviews and stuff when I was in the hospital and a lot of blood work. And finally a spinal tap. And then when I left the hospital, they contacted me like once a month, then it was once every other month, and once every three months. And now it’s still once every six months.

Ashley Kristoff

Thank you for sharing that, I want to get back to that 33 years comment in a second here, I just want to share we actually have some community insights about, has our community participated in clinical trials for depression before. And so we got 170 votes in and the overwhelming majority at 55% of the votes was ‘Not yet tried to enroll but interested in participating.’ And then we had 23% have never been interested, 12% have completed, and 10% tried to enroll but have not participated. I just thought that was a really interesting breakdown that there are people who have a lot of interest. So I hope that we are reaching those people today so that they can feel either a little bit more confident and pushing forward or decide it might not be the right thing for them. But speaking to that 33 years, I’d love Pete for you to actually talk through the types of clinical trials that can be available for mental health conditions because I think hearing that 33 years, it might be like, ‘Wow, is that my commitment if I were to enroll?’ and I think I would love to be able to understand the breadth that you can experience in a clinical trial.

Peter J. Franz, Ph.D.

There are a number of different ways to think about the differences, the variability that exists in clinical trials. One way is to think about how the trials themselves work. So there are some that we call open trials or observational trials where we’re simply looking to give people something and see how they respond to it. Understand any association correlation between something we think is positive – a medication or a therapy or a peer support group, or you name it – whether that thing is associated with people feeling better.

But then there’s also something that we call randomized controlled trials and those are trials where we randomize people to different conditions, one might be the primary intervention or treatment of interest, but we’re trying to understand to see if it works. And then some comparison conditions, it could be one or more conditions where what we’re trying to do is identify what the key ingredients of the therapy are, that are the most beneficial – whether that’s again, medication, or psychotherapy, or support groups, etc. We’d have what are often called control conditions that people might get randomized to to try and understand how that compares to the main treatment of interest.

And so within those two big categories, open trials and randomized trials, there are trials for all different kinds of things. And they take all different kinds of shapes. Some, like some of the ones that I run, are very brief two weeks, for example, because I’m testing a very time-limited brief intervention. Some might be very, very long because we want to understand not just how people are responding to these interventions now, we might also want to understand how and whether there are ongoing benefits, perhaps even for years after the individual gets the intervention. And so the length can vary dramatically, the intervention offered as part of the trial can vary dramatically, and the way that individuals participate can vary dramatically. Sometimes you have to go to the hospital or clinical setting to receive something – whether it’s psychotherapy or medication, etc. – but sometimes we can do them all online. So some of the interventions that I am trying to do up are online interventions – peer-to-peer support types of interventions – where we run our trials almost entirely through the internet.

Ashley Kristoff

Thank you for that, I think just having that context of like clinical trials can look drastically different depending on what the purpose of it is. So I think if you’ve heard of a clinical trial before, it might be the only one that has those parameters, there’s going to be a million others that you can find that are operating under very different parameters. So I’m gonna head back over to you, Jackie. I know you had mentioned you learned about the clinical trial you’re involved in when you were in a hospital bed and talking to professionals at that time. Had you heard of clinical trials prior to that? Or was that something that was kind of the first time that that option came up for you?

Jackie Scott

That was the first time I had ever heard of it. So I didn’t really know what I was getting into. For example, I didn’t know that they were going to do to a spinal tap. I actually made the researcher go buy me Arby’s afterwards – and he actually did! I think you bring up the 33 years that I’ve been involved with it and I think what’s important for people is no, that’s not a commitment that you have to make and I can stop anytime I want. I just happen to enjoy it. But at this point, I fill out surveys and talk to this guy that call from the university – and he and I’ve become pretty good friends. I thought what was interesting was I just did an interview here not too long ago and he made the comment to me that in 33 years, this was the first time that I didn’t say I was suicidal during the interview, which meant a lot to me having that ongoing relationship conversation with him.

Ashley Kristoff

For sure, I know you spoke a little bit to this already but just what has this process looked like from start to end? Like what have you had to do from that moment to what you’re doing nowadays? And do you know what the future looks like with this? And is there an end date for it for you?

Jackie Scott

I don’t think there’s an end date for it. I had received the letter at one point that the original funding had ended and they were looking for additional funding, and apparently, they found it. I honestly don’t hear a lot about what’s going on with it. All I know is that it’s related to impulsivity and serotonin. So I don’t know how many other people are in it right now. I know I’ve been in it the longest is all I know.

Ashley Kristoff

Do they give you an award for that? Because I feel like you definitely deserve one.

Jackie Scott

That’s what I asked him. No, but I do get $50 every six months when I talk to him.

Ashley Kristoff

Alright, Alright. I mean, it’s something, right?

Jackie Scott

That’s right.

Ashley Kristoff

I’m curious, then, since this one, have there been any other trials that you’ve looked at or tried to enroll in?

Jackie Scott

Yeah, I’ve tried to enroll in a few of them about depression. Some of the requirements are you have to do this, or you have to do that you have to be on a medication or you can’t be taking pain medication or different things like that. Because I have a lot of physical issues that kind of precludes me sometimes. By the time you get the things that they need you to have – you know, reference letters or whatever – the trial is filled. So if you want to get into trial, you have to be ready to do whatever the upfront requirements are pretty much right away. You have to be available to travel to here, or you have to be available for this phone call or that phone call, depending on the trial. Now, I can’t say that I’ve made a active search for something. It’s just kind of one of those ‘Oh, this came up.’ In fact, I’ve seen a few of them on The Mighty and I followed those. And one way or the other, I didn’t meet the requirements. So you know, it’s kind of like if I see one, eh I respond to it, but I don’t actively go out searching for them.

Ashley Kristoff

For sure. I would say when you’re looking at those opportunities, is there anything that you were looking for, in particular, like what your level of involvement would be? Or I know you have a very long going one, does like the length of the trial impact your thoughts?

Jackie Scott

I think what I would look at is what are the chances that whatever this is, might actually make a difference in my life or the lives of others. I think that’s the main thing. I don’t really care about length, I don’t care about money, I don’t care about any of that. It’s just, especially before this latest medication I was on, I was so depressed that I would have done anything, I would have taken any trial drug to try to get out of this depression.

Ashley Kristoff

Yeah, that makes a lot of sense. And I think too, it really speaks to when you have to be your own advocate and you are in the midst of symptoms that make it very, very hard to do so, I think that is a very relatable place to be. It’s just like I just want something that’s going to make me feel better in some way. I think that’s a very realistic place that people are going to be in if they’re pursuing those opportunities, and they don’t necessarily have someone who can do that work for them. So I think that honestly, at the end of the day, if that is the parameter that matters, that’s the best parameter to really matter. I’d love to know your perspective, Pete. What should doctors be considering when they are recommending a clinical trial to a patient? 

Peter J. Franz, Ph.D.

Well, doctor recommendations are some of the most important inroads into clinical trials. We researchers sometimes don’t have direct access to large patient groups and so we often will rely on our clinical partners to identify individuals who they think might stand to benefit from the trial and potentially be eligible for the trial. So it’s a huge source for us in the research world to have strong relationships with clinicians who can provide recommendations in a sense, referrals. One reality is that those clinicians may have a primarily clinical role where their job is to provide care for lots and lots of people. And they might not be aware of all the different trial options that are out there or even necessarily remember which patients are going to be eligible potentially for those various trials. And that’s a really big ask for people, for clinicians, to hold that in their plate with all the other responsibilities they have. And so one thing that we try to do a lot is to work very closely with them and provide reminders to identify mutual ways that our goals and research with clinical trials, for example, align with theirs. I think that that’s an important part of it, too. There was another part of your question that I didn’t quite answer.

I think one other important thing to keep in mind here is that the doctors may not always know all of the parameters of the individual trial itself. They may have a broad sense of who might be eligible and a sense for the reality that it’s probably something that’s worthwhile testing. That’s why the trial itself was approved by the local Institutional Review Board and the funding agency who provided resources to do the trial. And so they may not have full details, but I think a recommendation from position often can be a good signal that it’s something at least worth learning more about.

Ashley Kristoff

I like that and I think that really brings us into some of our final points here. The first one is, I’d actually love from both of you, Jackie, from your own personal experience and Pete from conducting some of this research, what positive impacts have you seen in yourself or in patients who have participated in clinical trials? Jackie, you can start off.

Jackie Scott 

I think, for me, the fact that in the beginning, I learned that I had virtually no serotonin in my brain has been valuable for me because it means that I have to be careful of things like credit cards, I have no credit cards because I will run them to the max. If we’re running low on money for the month, I’ll send my son to the grocery store, because he’ll go in, he’ll actually get what’s on the list. I go in, and I get what I call my $60 gallon of milk, which means when to get a gallon of milk, come out, spend $60 bucks because I’m very impulsive getting things.

Ashley Kristoff

I also think they call that the Target effect because I feel like that happens a lot at Target.

Jackie Scott

I am very impulsive. I have to be always conscious of ‘I’m going to do something stupid here so I need to pay attention to what I’m doing.’ So for me, that’s probably been the most important thing in it. Now, because I don’t know anybody else in the study I can’t speak to what it’s done for anybody else.

Ashley Kristoff

That makes sense. But I think that being able to have that self-understanding and being able to go, ‘OK, I need to make some accommodations in my life around this impulsivity that I experience.’ And I think that in itself is such a great thing that you’ve been able to learn about yourself. What about for you, Pete, from your perspective?

Peter J. Franz, Ph.D.

A lot about the individuals that I hope to help through doing clinical trials, I think the biggest thing is really thinking very hard about people’s individual lived experience and how important that is and how we can focus on that and treatment, and how we can even use that as resources for other people for those who are interested in sharing in the same way that Jackie is. Those individual experiences, and learning about them, and getting to know people have really propelled my further interest in conducting clinical trials, largely to develop better treatments to help people in ways that we’re not sure of yet. We don’t have all of the treatments. We have some right now and I think we can keep developing them and finding more. And my hope there is that for individuals like Jackie who have gone a long time looking for the right thing, to be able to figure that out sooner and provide that efficiently. And so I think through treatment development, largely using clinical trials, we’re really making our way there and that’s something that I personally feel a lot of hope about. And I’m also willing to acknowledge that we have a long way to go and we need folks like Jackie to keep helping us.

Ashley Kristoff

That takes me right into my next question, which is, what would you suggest for any listeners who are unsure or feeling nervous about the idea of enrolling in a trial? I’m gonna go right back to you for this Pete.

Peter J. Franz, Ph.D.

Well, I think the biggest thing is that the ball is really in their court. We want for individual patients to have autonomy with respect to their decisions about participation, when and how to do that. So one important thing, I think, is for individuals who are considering clinical trials to learn as much information as they can, to ask the staff who are recruiting them so that they understand the details, what their participation involves, how long their participation will last. Also to remember that their participation is voluntary. Jackie mentioned this earlier, they can withdraw their participation, stop being a part of the trial at anytime they want without penalty. And I think being armed with that knowledge can be empowering to individuals and allow them to go explore the possibilities that are out there for finding a trial that might be helpful to them, potentially.

Ashley Kristoff  

Thank you. I love that. And I feel like that really leans into what you were just saying too, about that hopeful feeling towards the future. Jackie, do you have any suggestions for anyone unsure or nervous about enrolling in a trial?

Jackie Scott

I think Pete pretty well summed it up just in making sure that you understand what it’s going to be. Whether or not you’re going to get the results of the research. I mean, I’d love to know the results of what they’re doing. I suppose if I asked for them, I could probably get it, but I’ve just never asked for it. So just know what’s going on and what’s expected.

Ashley Kristoff

I mean, it sounds like you now have some follow-up. Next time you participate and fill out some things just like slide that ask in as well and see what happens, you know?

Jackie Scott

I’ve actually got his email, I’ll just send him an email tomorrow.

Ashley Kristoff

There you go. Love that. As we start to wrap down this episode a little bit, I would really like to kind of do some forward things for our community. So what self-care practices do you either use, or you would recommend to someone living with MDD, or mental health in general? Whoever wants to start on this one.

Jackie Scott

Well, of course, peer contact and peer-support is really big. Having a group that you could connect with versus one person and realizing that those people aren’t your therapist, your therapist is your therapist, and those are your friends and supportive people that can give you ideas. And my other big self-care thing is coloring. Always have a coloring book, always have gel pens, and you can even get good coloring books like this. That’s my favorite one.

Ashley Kristoff

You can’t see it listeners, but Jackie held up, I will say it’s not ‘not safe for work’ in content, but in title, in words, not safe for work. So I probably shouldn’t repeat it on here. But adult coloring book that really gets out the frustrations, I think would be a really good description for that.

Jackie Scott

Yep!

Ashley Kristoff

Over to you, Pete.

Peter J. Franz, Ph.D.

It can be really tricky, but I think one of the things that Jackie said is so true, which is to find peer support, to build a network, to get people in your close circle who you speak with regularly. And that has a few benefits. One is it can be really nice to connect with other human beings. Number two is it means that when you’re not feeling so good, there’s someone you could lean on and someone who might be willing to check in on you.

I also think it’s important to reach out for help when you need it. I think that’s an important part of self-care that we don’t always talk about – that part of self-care can be asking for help. And I think that’s really hard for anyone at different times but I think for people who are struggling with things like depression, I think that might be especially true.

Another important piece of self-help that I try to use as much as I can is simply to get active. It doesn’t mean running a marathon or lifting hundreds of pounds at a gym, it can be as simple as going for a walk around the block maybe even just a couple times a week. For me that’s really helpful in terms of my mental health and I think it’s something that a lot of individuals with depression report is something that helps them too. And the last thing that I try to do is to keep a bit of a schedule with that. So knowing the days and times that I’m likely to go get up and get myself active for a little while, I think that schedule helps to maintain motivation.

Ashley Kristoff

Absolutely. I think my answer really ties on to that a lot. I feel like it’s just so, so important for that self-accountability. So it is finding those routines, finding those things that help you and then sticking to them, especially when everything feels like it is going OK, because that is part of why. That can be a piece of your treatment, even though it may be your doctor isn’t measuring that. But that is, you know, exercising can be a part of your treatment plan. It is a part of what helps you feel better and so, be accountable to yourself, even when you are feeling good, because that’ll help that stay. Now that we’ve had this whole incredible conversation, we’ve talked everyone’s ear off about these things, I would love to revisit what I asked at the start of the conversation, which is: What makes you feel Mighty about speaking about this topic? I’ll go the same order. So I think Jackie, that would be you first.

Jackie Scott

Again, I think being able to talk about it, being able to write about it. I write a lot as far as poems and things like that, putting into words, what is going on in my head. And I think that’s empowering.

Ashley Kristoff

What about you, Pete?

Peter J. Franz, Ph.D.

Well, I think it’s hearing from Jackie, about all the experiences with the ups and downs of some of the mental health challenges you’ve talked about, as well as your experiences and working through different therapeutic options and clinical trials, to the point now, where you’re reporting to feeling happy. I feel really good about having this conversation because my hope is that other people are going to hear about your experiences, see through those experiences that you’ve reflected some ways that they themselves might be able to find some hope. And I think that really aligns with the mission of my research and other people who do work like I do – that we want to inspire hope and to help people. And so I’m just really glad we got to have this conversation today, Jackie, and I’ve learned a lot from you. And I’m hoping that the listeners will too.

Ashley Kristoff

I love that and I couldn’t agree more. It never is lost on me, and I will always thank everyone, and especially you in this situation, Jackie, for sharing that personal experience. I work and talk about this all day, every day and I think sometimes I even forget that sharing our story can be so empowering, but it can still be a lot. Being able to bring that experience which can sometimes feel so, so hard into something that’s gonna help others is not to be understated. That is part of my answer. I think the other part was something you talked about Pete about finding those clinical networks where you are being so collaborative with other professionals because that does feel good knowing that there is a group of professionals who are trying to figure out these answers. And I think we all kind of know it, but hearing it, I think has a separate kind of impact in my mind. Before we say goodbye today, what resources, if any, would you recommend for people who are trying to find either clinical trials that they can enroll in or more details about them? Start with you for this one, Pete.

Peter J. Franz, Ph.D.

Google can be a good resource, but I would verify content you find searching on the internet for clinical trials by going to ClinicalTrials.gov, where you can find a registry of currently active clinical trials. Not only those that are funded by federal tax dollars but many that are. So those are good resources and then if you live near any kind of medical center, I think finding a physician or other care provider through that network and asking them, that can be a really nice resource to get linked into finding out about what trials might be available to you.

Ashley Kristoff

Fantastic, and we’ll make sure any links that have been shared will be in our description as well. What about you, Jackie?

Jackie Scott

I think meeting people like Pete is a whole way to get connected. I was gonna say ClinicalTrials.gov. but he already said that one. But I think making connections, I mean, I would hope that if Pete would start a study on recovery from MDD, that I’d be one of the first people he called.

Peter J. Franz, Ph.D. 

You know it.

Jackie Scott

So just making connections I think is one of the big things and being open to what people suggest.

Ashley Kristoff 

I love that. Alright, any final words before we sign off today?

Peter J. Franz, Ph.D. 

Just a huge thanks to Jackie. Really great talking to you.

Jackie Scott

I’m moving up next door to you, by the way.

Peter J. Franz, Ph.D.

Looking forward to it.

Ashley Kristoff

And on that note, thank you both for being here. Thank you both for sharing and bringing your perspective to our Mighty community.

Jackie Scott

Thank you for the invite.

Peter J. Franz, Ph.D.  

Yeah, thank you very much. I’m glad to be here. And I appreciate your giving us the opportunity to share some stories about this.

Ashley Kristoff

And thank you for listening to this episode of The Mighty Podcast. Thank you to Otsuka for sponsoring this episode. If you want to continue this conversation, head over to TheMighty.com or download The Mighty app to become part of our community. We’d love for you to follow us and give us a rating and review on Apple Podcasts or Spotify, or if you’re listening on The Mighty, give this page a heart. Join us on our next episode and stay Mighty.