Dr. Jane Gregory - Exploring Misophonia with a Researcher's Insight
Transcript
Adeel [0:00]: Welcome to the Misophonia podcast. This is season four, episode 13. My name's Adeel Ahmad and I have Misophonia. I'm so glad you're listening to this episode because it's an epic one. This week I'm talking to Dr. Jane Gregory, a clinical psychologist and Misophonia researcher at Oxford University. I've had a few researchers and providers on the podcast before, but this is the first one. who also has misophonia. You can read all about her and her work at her new website, soundslikemisophonia.com, as well as her Instagram and Twitter at soundslikemisophonia. All this will be linked from the show notes too. We go over so many things in this almost 90-minute episode, including therapies she uses in her practice to deal with misophonia, how she approaches navigating in the workplace, and the research she is conducting at the Department of Experimental Psychology at Oxford. Part of her work centers around the S5 questionnaire to measure misophonia, and we actually go over my results from the questionnaire And I'll have the link to my chart in the show notes as well as in the social media posts if you want to follow along our conversation. Okay, I want to get to this conversation ASAP, but I also want to remind you if you want to jump in to the conversation, feel free to leave a comment on social media at Misophonia Podcast on Instagram and Facebook or Twitter at Misophonia Show. Or you can send me a message at MisophoniaPodcast.com. All right, now let's get to my conversation with Jane. Dr. Jane Gregory, welcome to the podcast. It's really good to have you here. We've been looking forward to this.
Jane [1:45]: Thanks for having me. I'm really excited to be here.
Adeel [1:47]: So, yeah, this is going to be an interesting, kind of a unique episode. We're going to talk about some results of a questionnaire. I'll leave some surprise there. But first, do you want to kind of tell us kind of where you're located?
Jane [2:01]: Yeah, hi, I'm in Oxford and I am doing a research fellowship at the University of Oxford. And also I'm a clinical psychologist and work in the NHS, also with misophonia, so treating misophonia in Oxford. And yeah, based in Oxford. Sorry, I just realised, I just said Oxford like five times. As soon as you start at the University of Oxford, it's like you're mandated to mention multiple times that that's where you are. Yeah.
Adeel [2:29]: Is that true? Do they really want you to do a little bit of marketing for Oxford?
Jane [2:33]: They don't tell you to. I just can't quite believe that it's here that I'm doing this research because I tried so hard to get funding. And so for the place that finally gave me funding to be Oxford is insane. And so I just can't help. It's like just spews out of my mouth every time I talk about it.
Adeel [2:54]: it's fantastic and yeah i want to get into more yeah more about how all that came about a little later um and and we should um uh we should we should also mention that you do have this point it's not like just you're just a researcher or a provider of services you you actually have this point yourself
Jane [3:11]: that's right yeah like many therapists i'm particularly drawn to something that will maybe solve a problem for myself yeah i love that selfishness yeah i'm the same way um and yeah trust me this as you know this just won't just help you
Adeel [3:28]: a lot of people although all the listeners here so i guess yeah so um so jane uh earlier this between since the time that um you scheduled the interview you sent me a questionnaire and i believe you have um the results which we'll discuss i barely looked at the uh results um so i'm very interested to hear how that uh all came up um do you want to give some background on this questionnaire that you have
Jane [3:55]: Sure. Yeah. So this is, it's called the S5 questionnaire, which is the selective sound sensitivity syndrome scale, which is quite a mouthful. I don't know if people listening know that misophonia is also known as selective sound sensitivity syndrome.
Adeel [4:10]: I remember that name from, yeah. But continue, yeah.
Jane [4:13]: Yeah, so the early days, Marsha Johnson, I think, was the one who coined that term. And obviously misophonia is less of a mouthful to say, so I guess that's taken off. But this questionnaire is a scale designed to measure misophonia. And this project was started by my collaborator, Celia Viterato, who is a statistician in psychometrics at the Institute of Psychiatry, Psychology and Neuroscience. at King's College London. And when I was sort of transitioning to try and do some work as a therapist and researcher on misophonia, I stumbled across her work. She had just started designing this questionnaire and she'd done one big lot of collection of information from people with misophonia. And I joined the project at that stage and I'd already started seeing patients at that stage as well. So I was able to contribute based on what my patients were telling me about misophonia as well as obviously my own experience. So we did joint forces basically. And so with her statistics and psychometrics knowledge, psychometrics just means measuring of psychological concepts or concepts that can't be directly observed. And so it's designing questionnaires that capture these ideas and then using statistics to check whether it reliably measures what it is that it's meant to measure. So we've been through three huge rounds of data collection for this. It's been over 2,000 people that we've surveyed with misophonia as well.
Adeel [5:54]: And these are all local people in the UK?
Jane [5:57]: No, so the misophonia sample came from, we promoted it on social media, so it was predominantly English-speaking countries, mostly UK, US, and some from Canada and Australia, and a few scattered around the world, but those are the main places they've come from. So, yeah, the misophonia sample is from everywhere, and each time we collected a round of data, we got feedback from people, as well as using the statistics side of things to work out. which questions best captured the experience of misophonia. And we were really, really interested in it being more than just anger in response to sounds or disgust in response to sounds. We wanted to know what it felt like to have misophonia. And so the more that we spoke to people and tested out these questions, sort of profile a picture of misophonia started to emerge from the data that we had. It was really exciting.
Adeel [6:59]: Yeah. And is eventually the goal is to be a way to diagnose people? Because there seems to be some people are confused as to like what scale to use and doesn't seem to be maybe something that people can, you know, one survey that people can fill out to figure out if, you know,
Jane [7:17]: if they're likely to have misophonia is this kind of the goal or is it more part of uh just collecting data for potential treatments maybe i'll do all of those things yeah so so our main interest was was two things one for it to be able to measure for research purposes so that we could compare different aspects of misophonia and people with and without misophonia And we could look at things in comparison to the severity of misophonia. So we needed something that changed with the severity of misophonia. And my goal as a clinical psychologist was to find something that could capture if people were improving during therapy. So I wanted something that would help to show a picture of what their misophonia was like, help us to tailor their treatment program. bring up some things that I might not think to ask about, and then we could work together to plan the therapy. And then we can actually see if it is changing throughout the therapy. And what we noticed with the questionnaires that already existed that hadn't been through the rigorous statistical process that you need to go through to trust that a questionnaire measures what it's supposed to measure. So with those questionnaires, when I was giving those to my early patients, they were saying that it didn't quite capture the change. So it sort of initially captured the severity of the misophonia. But as they made changes, there were lots of things that were staying the same. They said, but I feel so much better. So, for example, one of them was. compared to other people i am sensitive to the sound of eating or breathing or whatever and they said well yes compared to other people that is 100 true i am more sensitive but i don't explode with anger anymore and actually i can deal with it now and that they still answered the top score on that question but felt like things have hugely improved so what we did was we split it into two parts which one part was the reaction and we looked at what type of emotion people experienced when they heard sounds so not just Does it bother you or not? But do you get angry? Do you feel panic? Do you feel disgust? Do you feel irritated? And ideally what we were trying to move from is from anger or disgust or panic down to irritation so that we thought that that would be a good outcome if a noise irritated you, but you could deal with it, that that would still be okay. We weren't expecting a cure for misophonia. so that was one part of it and then the other part was was all of the sort of felt sense things that go with misophonia what it's like to have misophonia and and that's the main part of the questionnaire now because that was so powerful to see what that was like i've now forgotten what your original question was but
Adeel [10:04]: No, I think that totally covers it. I forgot.
Jane [10:09]: Yes, you were asking about the purpose of the questionnaire. So yes, research and treatment. But also what we're doing now is we're doing some clinical interviews with people with and without misophonia, where the interviewer doesn't know whether they have or don't have misophonia. And so they give a diagnosis through a clinical interview, which is how we would diagnose it in a therapy setting. And then we match that. So we took a big group of that and we matched that to their scores on the S5. And then we see using, again, silly as fancy statistics, we can then see whether there's a cutoff score that says, above this score, you probably have maybe mild misophonia. And above this score, you have misophonia to the point where it's significantly impacting on your life and mood and relationships and things like that.
Adeel [11:02]: Right. So before we maybe take a look at a little bit about my results and see, you know, how likely I am to punch someone in the face, maybe, I'd be curious, like, what are some of the treatments that you then do with patients to try to get them down to the irritation level?
Jane [11:20]: So the main treatment that I use is called cognitive behavior therapy, CBT. And The main goal of CBT is to look at where the sort of felt sense of what's going on, almost like what your body is telling you is happening. If that doesn't match up with what you know rationally to be true or what other people are... around you tell you rationally is true if there's a mismatch there and that's causing distress or anxiety or depression or anger then we want to try and resolve that in some way and that felt sense comes from typically our past experiences so if you've had an experience say of being bullied as a kid then you might be more likely to perceive something as criticism as an adult than somebody who wasn't criticized wasn't bullied as a kid as an example so what we're trying to do in the therapy is work out what it feels like in the moment that this is a problem and then try and almost rewrite those experiences to create new experiences that compete with the early experiences. I'm completely, I've just gone off. completely on this so sorry this is really abstract so like a common example so one that something that works really well with cbt is social anxiety disorder with social anxiety people have a fear that they will do or say something to humiliate themselves or they will appear so nervous and anxious that that will be humiliating and what we know is for people with social anxiety most of them don't actually have a social skills problem they're not um bad at socializing they just might have had an experience and it might even just be one key experience where things went badly socially and they did feel humiliated or they were humiliated by somebody else and they've kind of stored that and when they're in a social situation it's like their body tells them remember that remember what happened that could happen again you're in danger you're in danger and then they start to do things to try and protect themselves from danger happening from humiliating themselves but what ends up happening all those things that you do so that's the behavior part of cbt what you do sometimes makes the situation worse so for example if someone goes really red so you can't see me right now but my neck and chest is completely flushed red because when i'm nervous about anything that's what happens um So what somebody might do if they think, oh, everyone's going to see that I'm red, they're going to know that I'm nervous, they're going to think that I'm incompetent. So what they might do is wear a sweater or something that tries to cover it. And what happens to me if I do that is that the red just sort of claws its way out of the sweater and onto my face instead. So some of those strategies actually make this the problem that you're trying to prevent. Sometimes it actually causes the problem you're trying to prevent. And sometimes it just reinforces the idea that you're in danger in the first place when you might not have been. So with misophonia, we're looking at things like... Well, actually, maybe we can talk about the questionnaire because the things that we capture in the questionnaire are the sorts of things that we think might be able to shift with... Yeah, let's talk about the questionnaire.
Adeel [14:48]: I do want to come back eventually to like... Because I've talked to people recently who, in their childhood, were diagnosed with social anxiety and OCD. And so it was all kind of mixed in with me. So I'd like to come back to what would you tell people who are therapists or people who think that it's all maybe kind of related and what makes Miss Funny unique. But let's jump into the questionnaire first.
Jane [15:14]: Yeah, so I'll start just by talking about the general population. So what we did afterwards, we first did this completely just with people with misophonia to really get a sense of what it was like for those people.
Adeel [15:26]: Right, so global sample. of people with misophonia.
Jane [15:29]: Yeah.
Adeel [15:30]: And then what we did was... And these were, sorry, I don't mean to cut you off again, but these were self-identified people? Yes. Okay, yeah.
Jane [15:36]: Yeah, absolutely. And so then what we did, we did the statistical analysis on that group, and what the analysis, it's called factor analysis, and what that means is the statistics tells you which questions statistically the best to represent the concept that you're trying to capture by the question by the questionnaire and it groups them together and and um groups emerge to tell you okay how many different components are there of this broad problem so with misophonia if misophonia is the broad problem that we're trying to capture with the questionnaire We ran the factor analysis and this brought up five factors. And each factor had five questions that really clustered nicely together. So that just means that if someone answered, yes, 10 out of 10, I feel trapped when I... um can't get away from sounds then they're more likely to also say yes 10 out of 10 i feel helpless when i uh can't get away from sounds so that that's clustering together so we found five factors and each factor very neatly had five questions so each factor was each item was out of 10 each factor is out of 50 and then the total score is out of 250. So then we took that whole thing and gave it to a general population sample, which we used a service to do that, where they collect a group of people that are meant to represent the UK population. So in terms of age, gender and ethnicity. So you can say that this sample of 771 people roughly represents the UK population in terms of age, gender and ethnicity. ethnicity and so then we gave the questionnaire to them and then we re-ran all of the statistics just to check that it came up with the same pattern the same things clustered together in that factor analysis and then we're able to compare the scores on each factor and overall on the general population compared with the misophonia population so i'll talk you through the general population first the five factors that came out of this the one that was highest in the general population was what we called externalizing and this is a feeling that you know what it's not strange to get angry about the noises other people make because they're being rude that people are being disrespectful and thoughtless with the sounds that they make and they just shouldn't make that noise even if they don't know about misophonia they just shouldn't be making those noises So in the general population, that was a score of nearly 20 out of 50. So that was the highest for the general population. And then we have, this was a factor called threat. And for the general population, this was around 15 out of 50. So not particularly high for the general population. And this is that sense of feeling trapped, helpless, like you might panic or explode if you can't get away from sounds. And so understandably, for people in the general population, most people don't feel like that's a problem with sounds. And then we've got a cluster of things. So it's that maybe I'm a bad person underneath. Maybe I'm just really angry deep down. I don't really respect myself when I'm reacting to sounds. So there's a real sense of feeling like this is my fault. There's something wrong with me. I'm sort of broken or damaged in some way. And that was really low for people in the general population. Most people didn't think that there was anything wrong with them about the way they reacted. react to sounds which is understandable because generally they're not reacting to sounds and then we've got outburst which is worrying that you might verbally or physically be aggressive or in some cases actually be physically aggressive or shouting that kind of thing and again that was quite low in the general population we're looking at like around six out of ten for that one And impact is the final one, which is not doing things that you would like to be able to do or not seeing people that you would like to be able to see because of the sounds that you might come across if you do that. And again, of course, that was quite low for people in the general population, which the general population did include some people with misophonia. This is meant to represent if you just take a random sample of the general population, obviously some people will also have misophonia. But that score was around five out of 50 for impact. So that's the general population. And then if we compare that to the misophonia population. So if we go with externalizing, which was the highest in which that was the highest factor in the general population, it was about 50% higher again in the misophonia population. So it went from around 20 to just over 30 in the misophonia population. So understandably, that would be higher in the misophonia population. But it's when we look at the other four factors that things start to get really interesting. So the threat factor that I feel helpless, I feel distress, I feel trapped or like I might panic or explode. The average score for that in the misophonia population was 45 out of 50, which means that for those five questions, on average, people scored nine out of 10 for all five.
Adeel [21:01]: Yeah, understandable. I mean, that's kind of the classic. Yeah, I mean, that's the classic feeling of a forest. So interesting. Yeah.
Jane [21:11]: Yeah. So that really, really highlighted that a huge problem for people with dysphonia is that sense of emotional threat of what will happen to them emotionally, what they will experience emotionally if they can't get away from sounds. And they're pretty extreme things. So feeling panic, feeling like you might explode, feeling trapped, feeling helpless. so that was the highest one for the misophonia population 45 out of 50. and that was um more than three times higher in the misophonia population than in the general population and the other three factors internalizing outburst and impact were also three to four times higher in the misophonia population so that tendency to blame yourself to feel like there's something wrong with you for reacting this way not doing the things that you'd like to be doing or seeing the people you'd like to be seeing and either having sort of verbal or physical outbursts or fearing that you might have outbursts and I should say on that one the physical outbursts, that was the lowest question of all the questions. So most people aren't physically aggressive. People are more likely to say that they were verbally aggressive or shouting at people or that they were afraid that they would do that. But most people were not physically aggressive as a result.
Adeel [22:35]: Yeah, again, this also attracts kind of the anecdotal... the anecdotal evidence basically is that everyone has the thoughts, but then few people have actually acted out, at least physically.
Jane [22:53]: Yeah. And that fear that you might do that, that can also, I was talking earlier about within CBT that often what feels true in the moment can come from our past experiences. So I know for me, I went through a long period of time where I thought I was going to snap. But that's because when I was 10 years old, I snatched a donut out of my brother's hand because he wouldn't eat with his mouth closed.
Adeel [23:12]: You monster.
Jane [23:12]: I know. I was an awful 10-year-old. And so in my head... or not even in my head, my whole body, it was like I could physically feel like that's what I might do if I don't get away from this sound, that I might snap in that way again.
Adeel [23:28]: Do you often remember that moment when you go through these rages, or is it just something as part of therapy you've remembered and just kind of make that connection at an abstract level?
Jane [23:40]: Yeah, so it was sort of something that I, because I'll talk a little bit about the CBT later, but one of the things that we do is to try and almost travel back to those early experiences just so that we can almost validate where that feeling comes from. And so I like to experiment on myself with this stuff just to see what's happening and to make sure that I'm not making people do things that aren't too traumatic. So I sort of try everything out of myself first. And it very quickly took me back to that memory. I could picture it. It was in a hotel room. It was the first time we had one of those buffet breakfasts. And so it was one of these moments where it should have been amazing. Like, we're all so excited to have this unlimited treats for breakfast. And yeah, my brother was standing right next to me, chewing with his mouth open. I just ripped it out of his hand and threw it in the bin. When you're a kid, it's really, really hard to contain your emotions. We just don't have the skills yet to control that kind of emotion. But of course, as an adult, by then we've usually learned skills to be able to contain ourselves. But it doesn't change the feeling that I might still be capable of it.
Adeel [24:48]: Do you feel a little bit of... I will get back to all this. I was curious, do you feel a little bit of... I know it was a small moment, but did you feel a little bit of guilt out of that or shame out of having done that?
Jane [24:59]: Was your parents going to be like, what the... The funny thing is I can't remember how my parents reacted. I definitely feel... I still feel guilty and ashamed of it. I've processed that so it doesn't haunt me in the same way anymore. But yeah, I felt awful about it. And the key thing for me was that it was so contradictory to what I was usually like as a person. I was this pretty calm, obedient kid. I was, you know, really cared about people's feelings. I was, you know... did well at school and got along with my friends and got along with my siblings. And so it was so out of character for me. That's one of the things I think that scared me the most. And that's what I'm noticing talking to lots of patients as well is that sometimes it's not. that you feel like it's a true reflection of yourself. Sometimes what feels so awful is that it's a massive conflict to who you usually are as a person. And the same in the externalizing realm, you know, thinking about other people doing this to us, that it feels so out of character for someone who is usually so caring and respectful and loving towards us to do something that can make us so distressed. So it feels like.
Adeel [26:14]: Yeah, it's kind of like you scare yourself, not just the sounds that are giving you that fear.
Jane [26:21]: Yeah, absolutely.
Adeel [26:22]: Interesting. Yeah, we'll dive into that maybe a little bit more later. But I think, do you want to get back to maybe the results here? I think we were on, I think we'd gone through externalizing a threat and outburst for the Misophonia population. I think there's- Yes.
Jane [26:42]: And then internalizing and impact was similar to outburst in that it was three or four times higher than in the general population. Yeah. So the difference between externalizing and internalizing in the misophonia group is not that big. But in the general population, externalizing is much higher than internalizing. So people with misophonia are much more likely to... blame themselves for this than people in the general population who react to sounds who are more likely to just say that person's just being disgusting that's there that's on them not not on me
Adeel [27:18]: Right, right. Gotcha. Okay. Yeah, no, really interesting. And obviously the listeners will have this to look at as they're listening. Then there's one line left, and that's the yellow one here, which is interesting. Obviously three or four of them track exactly. And then there's one outlier, which I don't know what that says about me, but we'll talk about maybe what that means. Do you want to talk a little bit about how my results were similar or and or different?
Jane [27:53]: Yeah. So as you say, so externalizing impact, outburst and threat all almost exactly match the general, not the general population, the misophonia population. So really, really similar within, I would say each of them is within two points of the misophonia population. So you are... tracking very neatly with our average misophone there but the one that is non-existent for you is internalizing so do you want to tell me a bit about that in a non-therapy kind of way
Adeel [28:26]: yeah so i mean from what i understand for that uh uh i don't know what you called it a feature or whatever so the internalizing is blaming yourself i think for that's right uh the issue yeah so uh i don't know if i should also take some kind of a narcissism test but it seems like i basically Don't take any blame for the situation that I'm in. And does that mean that I've shifted everything to the externalizing side? Because it looks like my externalizing even is higher a little bit than the Misophonia population. I'm just trying to look in the questionnaire to see which of those questions might... uh i just so i yeah i remember doing the questionnaire and there were questions like i dislike myself in the moments of my reactions to sounds yeah and um I think, I mean, I definitely, I don't remember what I wrote, but I probably would have said pretty much not at all true because I think what I was thinking when I answered that was like, I mean, at least I realized that it's a temporary situation. And so I don't dislike myself as a whole. Maybe I obviously dislike the reaction. I don't like to be in that. I don't like to have that feeling, but I certainly don't dislike myself. Was that part of the, was that one of the internalizing questions?
Jane [29:46]: yeah absolutely yeah so it's i dislike myself um i i respect myself less because of where yeah that one too i'm pretty sure i said i'm pretty sure i said pretty much not at all true and that's obviously what the graph says yeah you've got i think zero for all of all of those so either either you've done a lot of work on not blaming yourself for this or so one of the things that i've tried to maybe that's just from being uh uh work from home for so long is that i'm only around pretty much myself and you're talking to a lot of other people with misophonia right it's it's become more normal to you but actually this is the the internalizing factor is typically the first thing that i try to work on with people in therapy because if you're blaming yourself if you're feeling shame or guilt for how you react to sounds, it's really hard to do any other work on this phonia because it feels so awful to feel like there's something wrong with you deep down that it's really hard to make changes. So I would be aiming to get this, maybe not everyone would get down to zero completely, but I'd be aiming to get this down below all the other factors. before doing any other therapy.
Adeel [30:57]: And that's really interesting because I mean, I remember I did ask you a couple of minutes ago about how did you feel about shame and guilt? And that is something that comes up a lot in these interviews. And so it's very top of mind for me. So it probably is something that I'm kind of processing. And I think a lot of people should. So I'm glad that you guys are identifying that as an important first step, first factor to try to minimize. That's very cool.
Jane [31:24]: Yeah, and I think especially because something's misophonia, we don't actually have a cure for it. We don't really understand the sensory kind of perception aspect of it yet. And so we can't take the reaction away completely. But what we can do is, like, at the very least, make people feel better about themselves for reacting. And then, you know, we'll talk a bit more about the other aspects of therapy. we're not we're not trying to take misophonia away we're just trying to make misophonia feel less awful and anytime there's shame I mean you know shame is an emotion that's there to tell you you are not enough a good enough person to be accepted by other people and so if you're stuck in that thing in that state it feels really desperate it feels really hopeless and um it's it's really hard to do anything else to change if you're feeling that way
Adeel [32:25]: Right. And that probably has all kinds of like a domino effect with other issues, probably self-esteem and probably other anxieties and other things.
Jane [32:38]: The thing I like to compare this one to is for kids with dyslexia or dyspraxia going through school and struggling to um achieve at school because of dyslexia or dyspraxia and and feeling like they are stupid or they are lazy or they are um badly behaved or whatever if if you blame yourself for that then that is going to affect your self-esteem and and for kids who weren't given a diagnosis of dyslexia at school, then it makes a lot of sense that they would feel stupid or lazy because it doesn't make sense otherwise. Without the diagnosis, it doesn't make sense that you can't do things as easily or as quickly as your peers or that you find some things really, really hard and other things really, really easy. It makes it look like you just don't want to do the other things. and so for people who've had that experience growing up as adults they might now know oh i have dyslexia that's that's all it is not that you know dyslexia can be a real problem but it's um it's not The dyslexia diagnosis on its own isn't the biggest problem. It's the impact of having dyslexia and either not knowing it or being treated badly because of it, being treated as though there is something wrong with you. And not having the accommodations you need.
Adeel [34:11]: You said there were kind of a wide age group here. Did you get many children as part of the sample?
Jane [34:19]: no this one we just did 18 plus so this this is just adults yeah the questions weren't quite well we haven't tested them on on children or adolescents so i know that there's a team at sussex who are trying to um create a measure for children and adolescents And there's some slightly different ways of measuring things for kids. So this one at this stage, I've used it with a couple of sort of late teens, kind of ages people, and it works pretty well with them because they can sort of answer these questions on their own. But they might not. It hasn't been tested on younger people.
Adeel [34:59]: Yeah, I'm hoping in the future it's totally normal. There is a dyslexia test, as you mentioned, for kids. There should be a misophonia test for kids who are coming up and being very distracted and having this affect their grades. I feel like it's probably being so unidentified in schools. And then, yeah, I mean, affecting people's lives in a very negative way. Yeah, absolutely.
Jane [35:26]: I think that that research is very much needed is to look at the impact that it has on attention and learning and things like that in school, because sometimes just some really simple accommodations can make a huge difference for kids with misophonia.
Adeel [35:39]: Absolutely. Did you want to talk now a little bit more about some of the therapies that are being used in your practice or in your group?
Jane [35:52]: yeah sure so um we have now two um specialist psychology services in the uk so one based at the maudsley hospital in london and one based um at the uh oxford it's another one of those mouthful names oxford health specialist psychological intervention center um so both of them now we take referrals from all over the country for people with misophonia the one in london is just for adults the one in oxford is for children adolescents and adults so we can take referrals through the nhs which means that it's free at the point of delivery for the patient and again so talking about cbt before so we're using cbt but it's very much tailored to the individual so what we're doing is we're using this questionnaire we're doing a nice long assessment appointment with the person and and trying to map out their individual picture of misophonia so what's happening in the moment when you're reacting to sounds what does it feel like is happening what does it feel like it means about you what does it feel like it means about the other person and if someone just came and said whenever i and so this is where i'm at now with my misophonia is that i don't like the sounds but it doesn't make me angry anymore it doesn't make me anxious or panic i don't really think about sounds when they're not happening so i consider myself to a very mild misophonia so if i'm sitting at the dinner table and someone's making a lot of noise i'll just do the subtle finger in the ear or put some music on or something and i can deal with it And if I'm trying to work, I keep earplugs in various locations around my home. And so if I need to focus on something and there's a sound that bothers me, I'll just pop earplugs in. But I try not to use earplugs unless there is a sound that is stopping me from doing something. So I can deal with sounds if they're not stopping me from doing something. So what we're trying to capture in this at the very start of therapy is checking whether therapy is actually appropriate. So there needs to be... some kind of psychological component to their misophonia for a psychological treatment to be useful and if there isn't then obviously therapy is not really the right place for them so it could be some of the things that we've talked about about what feels like is happening in the moment and maybe that's linked to past experiences or it could just be that this is causing a lot of stress in the home, or it could be that they're waiting for sounds to happen. So people often describe feeling anxious because they think a sound is gonna happen, especially if there's sounds from neighbors and things like that. So they might be like just on edge all the time. So if the sounds are affecting you when they're not even happening, then there's work that we can do in therapy. And same with after the event. So one of the things that I'm trying to look at in my research is whether after the trigger is over and there's no sound there anymore, do people replay the event? do they think about their reactions do they think about the other person and how dare they or do they think about oh what's wrong with me that i react this way and feel really guilty or ashamed and again if so if that's continuing to impact you once the sound has stopped then that's where psychological treatment might be helpful So what we're trying to do with therapy is sort of look at these early experiences and we actually have taken strategies that we use for post-traumatic stress disorder, but that also gets used now for social anxiety, obsessive compulsive disorder, body dysmorphic disorder, where past events influence how you feel. in the present day and we sort of go back and kind of update those memories with a new perspective based on what we know now so with misophonia one of the key things is that most of the people who are coming to therapy now are adults and because misophonia is only very newly recognized. And even now, I think in the general population study, I think only 13% of people had even heard of misophonia.
Adeel [40:05]: So they're barely recognized, right?
Jane [40:07]: Yeah, absolutely. And that also, unfortunately, includes health professionals who don't recognize it and teachers and other key people in our lives. And so for a lot of people coming to therapy now, they had these reactions as a kid but didn't know what it was. And so That then shapes what it feels like it means in the moment. So if as a kid you thought everyone heard sounds like this and therefore why would anyone do this to me? You must know how much this annoys me because it would annoy you just as much. Then you're more likely to be in that externalizing category of like you're doing this to me. And sometimes if people have had say siblings that used to torment them with sounds, then they might also feel now like you're doing this deliberately to torment me. And that's not to say that sometimes people aren't doing that because I have also heard people being tormented by family members, partners, friends, even health professionals, again, devastatingly, sometimes a doctor might say, oh, you mean like this and then make the noise. No, I don't mean like exposure. I mean, just like... the person describes what they get angry at and then the health professional makes the noise and says oh is this what you mean um so if yeah if that was your experience growing up then you're more likely to feel that way currently and so what we do with post-traumatic stress disorder is if you take a memory like that that's kind of frozen in time and ordinarily when we go through a an unpleasant or scary or upsetting event when we remember it the next time each time we remember it we update it a little bit with what we now know or with perspectives of ours that have changed since then so you know I was talking about bullying before so when the bullying is happening you know in that moment you might feel afraid for example but then later that day you remember it again and because you now know that okay you're safe now it didn't result in you being put in the hospital or whatever it was that it felt like was going to happen at the time. But now you feel humiliated because everyone knows about it. And so the emotion, the memory is the same. It's the same content, but the emotion changes. And then five years later, you might think back and feel really angry at the bully and think, oh, how dare you do that? That was really uncalled for. So the focus is sort of less on you and more on the bully. and then as an adult you might look back at that and remember it and you might actually start to feel compassion either for yourself or for even for the bully because you think well actually now as an adult i'm aware that most bullying behavior doesn't come out of nowhere that most kids who are bullies have got some stuff going on for them that means that they take it out on other kids. And so you're not, it's not like rewriting the memory itself, it's updating it with what you've learned since then. So with misophonia, if you had an experience where you're sitting at the table and you can't figure out why this is bothering you so much and thinking, what's wrong with me? There's something wrong with me that I'm reacting this way and no one else is bothered by it and you're feeling really embarrassed or ashamed by that. if that continues to feel this way as an adult then what we would do is we would bring that back to the surface and and almost like talk to that younger child and just say okay what what do you want to explain to yourself that you didn't know at the time that you really needed to know at the time and so it's just kind of like doing that process that our memories do normally do automatically we're just manufacturing in that process of updating it with the information that we have all the perspectives that we have now so it's sort of talking to your younger self saying okay you've got this thing called misophonia and one in five people are affected by noises like this some people more than others and there's nothing broken or wrong with you it's just that you can't filter out these kinds of sounds and it feels really intense right now because you don't feel like you can get away from this sound Or maybe you literally can't get away from this sound, but you're going to be okay. That, you know, at one point, someone else will understand. And at another point, someone will be there to help you. And then we take whatever it is that you've sort of updated that early memory with and bring it and sort of give that to yourself as an adult as well. Just sort of like to have in moments where you just sort of say, okay, this is misophonia. I'm not broken. This feels so intense because I went through those awful experiences as a kid, but I now know what it is. And what we hope with that is it's not going to take the reaction away completely, but it brings the reaction down a tiny bit because you take away the shame.
Adeel [44:49]: You take away the guilt. That's a big component. Yeah. Yeah.
Jane [44:53]: And so that's typically like, that's, that's the sort of like the early stages of treatment to, to make sure that you sort of addressed any stuck memories that are almost like telling your body how to feel in that moment.
Adeel [45:07]: Right. So all that work is basically for that internalizing factor.
Jane [45:12]: Or it could be externalizing and it could also be threat. Because if as a kid, like you were stuck at the dinner table, for example, because you would have got told off or humiliated if you started crying or something like that. then it might be like yeah your parents don't get it um they're telling you to stay here because they don't understand how bad this is for you that's why you're stuck here right now but you know when you get older you'll be able to control your environment more you won't have to stay in places that are this distressing for you and you might find people who
Adeel [45:48]: a more understanding of this or you'll be able to communicate it better or something like that so that can also bring down the sense of threat if those early experiences are contributing to that feeling yeah we talk about that a lot uh how as you get older you have more control over your environment um but of course you know we just say that in the in the in the course of an interview i'm curious like how long do these treatments typically take for your uh um for your patients like uh you know to like if somebody's listening and they're like okay this sounds good like but you know i'm curious like how long you know how long and how long this would kind of take i'm sure at some point it's like a lifelong process obviously but um yeah curious kind of like when do you start seeing results and uh are there other phases beyond what you described already
Jane [46:35]: Yeah, absolutely. So yes, there are other phases. I can talk about that in a second. So in terms of the total course of treatment for most, I just finished a case series. So a case series is just when you collect a group of people who have been through the same treatment for the same problem and you pull together all of the data from questionnaires and things like that and you look at... the sort of pattern of change for a group of people. And so for them that had 19 people and the number of sessions was between 12 and 16, I think. So 12 to 16 hours of cognitive paedotherapy. And that was most people at the point that they stopped, they were ready to stop. They were like, I've got this from now, which is where you want to get to with CBT is like, I can keep going with this on my own. So, um, yeah, so 12 to 16 hours.
Adeel [47:31]: Gotcha. Okay. Interesting. Um, and, uh, well, that's, I mean, that's not, that's not long at all. I'm thinking like months and years maybe.
Jane [47:40]: Yeah, no, absolutely. For some people it might be, be longer, especially if you have, if, if, if there are things, um, in addition to misophonia that make your misophonia a lot worse. So maybe, um, not really knowing how to contain your own emotions or sort of feeling that your emotions get out of control or not having a very supportive environment or having a really noisy environment, then those sorts of things can make it take longer.
Adeel [48:09]: Right.
Jane [48:10]: Especially the noisy environment. Like if you're, you know, was this case series was done in London. And so lots of people there live in flats and yeah, the biggest challenge is noisy neighbors.
Adeel [48:24]: Got it. So they're, they're doing their treatment, but they're, I mean, they're, it's, they're, it's a constant onslaught. Yeah. And so it's, it's kind of hard to focus on, on the treatment because it's, you're always reverting back probably, or often reverting back.
Jane [48:38]: Yeah, and you just don't get a break from it. And that's one of the key things in treatment is making sure at some point, if you can, getting a sensory break every day because your whole nervous system just needs to reset. And so that might mean having to leave the house if there's constant noise in the home, or it might mean building yourself a little cocoon in your home and putting nice music on or something like that, but just giving your body that sort of reset of the nervous system.
Adeel [49:08]: Are you able to give people some kind of a, I don't know, letter of accommodations or something? Like if they're at work and it's really noisy that they can kind of get out during treatment or... Yeah, absolutely.
Jane [49:18]: Yeah. And typically, so sometimes it might be just some immediate things that, oh, if there are small... One of the things I say is for accommodations, I say if there's a small thing that makes a big difference, then that's worth fighting for. So... For some people, it's just as simple. It's like their boss tells them they're not allowed to wear headphones at work because it looks rude. So I would definitely be helping them to fight for that. That's just ridiculous. If they don't have to be available at all times to... um hear people then that to me seems crazy to compromise someone's mental health just for appearances um well i say i usually say not just they're not just the individual's mental health but the company's bottom line if that person is not able to function they're not contributing to the company Absolutely. And if people are asking how they can talk to their employer, that's how I would describe it. It's like, I will be more productive if I can't hear these sounds.
Adeel [50:16]: I will make you more money.
Jane [50:17]: Yeah, I had to do that when I was working in the NHS. One of my jobs in the NHS was I had to have people come and talk me through patients I was seeing and I had to help them decide whether they were suitable for treatment or whether they needed to do a risk assessment or whatever. and i had often people would come up while they were eating and i had to just say i'm really sorry but i have trouble concentrating when i can hear eating do you mind if we just pause this conversation or you pause eating and then i'll be able to give you my full attention and sort of trying to um i talk about sort of trying to get people to focus on the outcome that they want so Yeah, I think it is a bit rude to come up and talk to someone with your mouth full. But what I need in that moment is to be able to do my job effectively. I don't need them to learn a lesson in manners. So that means me kind of taking responsibility. Oh, I've got this thing and could you please help me out with it? And that will help me to help you better. So sort of focusing on what they get out of doing this thing for me.
Adeel [51:26]: know it's a great tip i think that can be generalized as people are trying to navigate this everywhere um people yeah people are often looking for you know how do i how do i approach the subject because uh that's the one one thing that leads to people bottling this up is that they you know they they don't know what the how the other person is going to react what's the best thing to say so that's a that's a good way to to kind of approach people about it
Jane [51:52]: Yeah, it's very much testing the waters on these things. Yeah, that's true.
Adeel [51:57]: Well, a lot of people, so the next thing that happens is a lot of people test the waters too much kind of like early on and then they get bitten so many times that actually later on they just start to kind of like revert to, well, not revert to the best word, but just kind of like close themselves off more and more. Yeah.
Jane [52:17]: yeah and understandably like often what we try to do is fix the problem while it's happening so whilst you're feeling panic or anger or disgust it's really hard to ask someone to do something that they don't even realize is a problem because you'll do it with anger and disgust and panic on your face and in your voice and so that's that's the other key thing here is like Don't use examples that haven't worked of times where you've been in the moment as evidence for whether or not people will understand. Because often people won't understand if they're feeling defensive because they're feeling attacked or feeling like you think that they are disgusting or that you think that they have terrible manners or whatever it is. Right. As much as possible.
Adeel [53:05]: being um careful with the planning of these conversations and doing it at times when you're not reacting to a sound right um do you do we go over kind of really quickly maybe some of the other phases that that you um um that you treat people with sure yeah and then i want to definitely get into kind of your your background too but but yeah i'd be interested to hear that
Jane [53:28]: yeah absolutely so yeah so as i said if it's appropriate typically i'd be starting with that kind of memory stuff and updating that um and then what i'd usually be trying to do is to reclaim the time in between sounds so if there is no sound happening i want people to be living their life to the full there and that's one to bring down that impact one where it's where there's that sort of sense that i can't live a normal life with misophonia but if it's only the time when there are sounds would that would that be better for you if you if you all the time where there was no sound if you could just live fully how much of your life would you get back? And if the answer to that is a lot, then we would spend some time working out how to do that. So it might just be simply like planning to do things at times when there's no sound. It might be strategies for calming down after the sound is finished and then sort of refocusing your attention back on what you were doing. When strategies like mindfulness type exercises, where it's sort of like bringing your attention to the present moment, learning to be in charge of where your attention is, that kind of thing. So strategies like that can help you just to make sure that you are filling the time where there are no sounds with meaningful and enjoyable activities. right so you're not on the edge all the time exactly yeah and so if you can get absorbed in something when there are no sounds then that also serves as a reset so you can cope better with sounds it often feels like you have to be on edge to prepare yourself for sounds but often it might be a bit more of a jolt to start with when the sound comes out of nowhere because you're absorbed in something But on balance, if you're filling your time with enjoyable, absorbing, productive things, and then you have to deal with sounds, you'll deal with the sounds much better because you'll feel productive and you'll feel relaxed.
Adeel [55:30]: Well, if you're doing something that's making you less stressed, what comes up all the time is stress is a major exacerbating factor. So yeah, I can totally see that where on the whole, doing something, absorbing yourself in something you enjoy doing will reduce stress and then that jolt, hopefully the amplitude of that jolt won't be as high. Yeah. because all your muscles are not ready and clenched to attack.
Jane [55:55]: Yeah, absolutely. Because if you're feeling more stressed, then that process in our brain that tells us, for people with misophonia brains, it's like the brain is saying, that sounds important, keep listening to that. And that's something that all brains have the capacity to do when there's potential danger. So someone without misophonia walking home at night can tune into the sound of footsteps behind them in case it's somebody following them home. Someone with misophonia might detect that sound during the day in broad daylight when there's absolutely no danger. But all brains have the capacity to do that. and we're more likely to do that when we're under stress so that makes sense then that misophonia would be worse when you are more stressed or more anxious about things so if you're waiting for sounds to happen you are also more likely to detect sounds and to find it harder to filter them out
Adeel [56:49]: So, yeah, that reminds me of the brain question. So, you know, there's research and folks who are looking at whether this is, whether it's genetic or just some miswiring of the brain. What do you think about that debate or that part of the discussion versus it coming from PTSD-ish kind of situation?
Jane [57:16]: Yeah, so, well, basically what that, so thinking about Kumar's paper, The Brain Basis for Misophonia, one of the fascinating things about that, that was actually one of the key papers that got me interested in the psychology of it because the part of the brain that had heightened activity in people with misophonia was the area that's called the salience network. And salience, that just means meaning. And so that's where... That means that the brain is putting meaning on sounds that people with misophonia aren't putting on sounds. And meaning, that part of the brain, that salience network, that comes from our past experiences. So what that study was showing is that it was a neurological representation of the sorts of things that I'm now working on in therapy. So that would also show up in somebody with obsessive compulsive disorder who puts meaning on thoughts that other people might not put meaning on or on someone with panic disorder who puts meaning on their heart rate in a way that somebody without panic disorder might not do. So that part of the brain, so it looks, you know, we put that in the neurological category because we can see it's part of the brain, it's part of the neural network, but it's actually representing something psychological.
Adeel [58:37]: Gotcha. Okay. Okay. Yeah, it's interesting. So that kind of reinforced, well, inspired and also reinforced kind of your ideas about what's happening. Yeah, absolutely.
Jane [58:51]: So what I would be fascinated to find out if someone goes through therapy and the meaning behind the sound changes, whether that activity in that part of the brain actually reduces.
Adeel [59:01]: Yeah.
Jane [59:02]: And one of the other things that I'm really curious about is that part that I was talking about before about where the brain, if you hear really rhythmic, repetitive sounds, typically after you hear it once or twice, your brain will just go, oh, that's rhythmic and repetitive. You don't need to keep listening to that. But for some reason, for people with misophonia, the brain never tells you stop listening to it. So you keep hearing things. um as as long as they are going you can keep hearing them in a way that someone without misophonia their brain would not it would just say that's not important you don't have to listen to that anymore and so you just wouldn't sometimes we keep kind of hearing it or expecting it or waiting for it not even necessarily waiting for it like literally whether you hear it or not so they do this amazing study where they play just two sounds really close together and people with neurotypical brains they only hear one sound because the brain just says those sounds are identical there's nothing to nothing there's nothing to be gained from continuing to listen to this sound there's no danger whereas people with autism spectrum disorder or ocd or panic disorder they will hear two sounds and so the theory is that the brain doesn't tell those people not to hear it anymore. So they literally hear it when the other person doesn't.
Adeel [60:23]: Maybe, maybe that might be a good time. I know we're already like, uh, I can go on forever.
Jane [60:30]: I'm just delighted to have like a conversation just about misophonia. I think all my friends have been talking about it.
Adeel [60:37]: Yeah. Oh God. No. Uh, yeah. We might have to even do a part two at this point. This is so good. But, uh, but I do want to also, yeah, I want to talk about, uh, Jane's background here with misophonia and maybe kind of a few of my usual prompts. Like when did you start noticing this happening for you? Was it just the donut incident or did it go further back?
Jane [60:59]: Yeah, I think so. The donut incident was the key like, oh, this is a problem kind of incident. obviously life-changing yeah yeah um but i do remember earlier than that so probably around the age of eight or something um there were just these pigeons that lived outside my window and i couldn't concentrate at all when i could hear these pigeons and so my family were just completely baffled that i would be like found in my room just crying because the pigeons wouldn't stop making this stupid pigeon noise um so that's like my first memory of a really repetitive noise stopping me from doing what i wanted to be able to do and then throughout school it was sort of on and off i remember um when we sort of switched from The old Walkman headphones, the ones that sort of went over your head with the little round things, when it switched to the more earbud style, then it was like heaven for me because I used to just hide them underneath my school uniform and I had long hair, so I would just put them in my ear. As soon as we weren't having to listen to the teacher, I would just pop those headphones in and just listen to music really, really quietly in class while I was working. And I just got so much more work done because suddenly I wasn't having to pay attention to all of the clicking pens and rustling and talking and chewing and stuff in class. So I sort of remember it affecting me on and off and around exams, particularly at university, like the invigilators walking around and sort of the footsteps of that. And I could hear someone sniffing across the room and couldn't concentrate. So it was, yeah, it's like one of those things where I don't remember it being this constant problem in my life, but when I think back to it, I can pinpoint really specific moments where it had a real impact on what I was trying to do.
Adeel [62:50]: Right. So obviously, you heard it in exams. I always ask about that, but it certainly didn't seem to have dragged you down too far.
Jane [63:01]: Imagine where I'd be now if I hadn't had misophonia.
Adeel [63:04]: That too. hopefully uh yeah uh maybe a prime minister rather than the current guy but uh um but yeah okay so then so you got what did your what did your parents think uh what'd your family think um as you were growing up did they take it seriously dismiss it they just didn't get it baffled yeah just baffled and you know my parents are pretty like responsive you know warm parents so they sort of
Jane [63:33]: could validate my distress without actually understanding what was going on.
Adeel [63:38]: And so I probably... Were they generally sympathetic to these kinds of issues in general? I've spoken to a few people from the UK and it seemed like, you know, the culture is very much kind of bite your lip and...
Jane [63:51]: yeah well i i um i'm actually from australia so we are a little bit i mean it's still it's it's not the stiff upper lip it's just like oh come on you know don't be soft it's sort of more the so it's a similar outcome but different reasons like it makes you wrong it's wrong for different reasons um but not in my family that wasn't the case we were quite um you know relatively sort of emotional and warm family so it wasn't like you couldn't talk about your feelings or anything like that and I very much think that's one of the reasons why misophonia didn't affect me more than it did because I didn't I felt a bit alone but I didn't feel completely isolated I didn't feel completely hopeless I just it's just like oh when it bothered me it bothered me but it it didn't sort of torment me the rest of the time
Adeel [64:44]: Gotcha. Okay. And then obviously, I'm assuming it affected your career choice. Was it something that you knew early on that I want to do something about this, I want to learn about it, I want to work on something that will treat other people?
Jane [64:59]: Well, it's a good question. Funnily enough, like it had no bearing on my career choice in general. I was already working as a clinical psychologist when I actually heard the term misophonia. So like a lot of people, there was this one key article in the New York Times that talked about it and it started getting sent around like, oh, hang on, you get annoyed by sounds.
Adeel [65:21]: I need to get her on the podcast. Yeah, I always hear about that article.
Jane [65:25]: yeah and if you look at the um the search trends on google for the term misophonia the month that that article came out it just spikes it's like there's almost no searches for misophonia and then that article comes and boom searches go up you know probably like 50 times what it was before and there was another article published like two years later or something and the same thing happened in the search trends so basically i found out through one of those articles and at the time even then i wasn't really thinking about it in terms of career it was just like oh thank goodness right crazy yeah i'm not i'm not just this uptight person and um so yeah it wasn't until it was about three over three years ago now I just started thinking about it a little bit more and I was writing a blog at the time where I was sort of trying out CBT on myself and so I was trying to just do little experiments that would sort of put me in situations that might mimic what my patients went through so um like I watched horror films on repeat to, and measured my heart rate to see what it was to see the habituation process of, of sort of repeated exposure to a horror film. And I, um, that's interesting.
Adeel [66:42]: Fun way to watch a horror movie.
Jane [66:43]: Oh yeah. Um, yeah. Wolf Creek. It, it like, it still haunts me. I've watched it five times and, um, yeah, my heart rate did come down.
Adeel [66:54]: I guess I can see what my Apple, I guess I can see what my Apple watch is doing while I'm watching a movie.
Jane [66:59]: Yeah, it's fascinating. Yeah, and I was working with OCD at the time. And with OCD, we often make people do things that make them feel contaminated. So I then like, like to the bottom of, so in the UK, we call them welly boots. Do you call them gum boots, maybe? What do you call like rain boots that you would wear?
Adeel [67:19]: Yeah, rain boots. Okay. Yeah, rain boots.
Jane [67:22]: um yeah so i was at a music festival and so to to replicate that process of feeling contaminated and then not being able to do anything to decontaminate i licked the bottom of my welly boot and then didn't do anything to to decontaminate so that's what i was doing at the time that was my little experimental side project And I thought, why didn't I try this with misophonia? Because I sort of started to notice some similarities in what I was doing with misophonia about blocking the sounds and avoiding and maybe just sort of trying to compensate for sounds that looked a little bit similar to what some of my patients with OCD were doing. And so I started looking into it and found that these two teams of researchers, one in Amsterdam and one in New York, were from an OCD background and were now working on misophonia and they'd kind of fallen into misophonia. So I made some contact with some of the researchers and just started to think a little bit more about it. And then I was thinking like, why aren't more therapists treating this? It seems like we could actually make a difference. And then I was thinking, oh, hang on, I'm a therapist. Why aren't I treating this?
Adeel [68:26]: Right. You're busy. Instead of licking my boots and measuring, watching horror movies.
Jane [68:32]: Also very important things to be doing. Not exactly life-changing though. So I put together a proposal for my boss at the time and just said, look, there's this thing. I kind of have it. And I kind of think we could make a difference. And just by sheer coincidence, we had two referrals for people with anxiety who also happened to have misophonia. And it turned out the misophonia was one of the key sources of their anxiety. So what I'd been working on just in my own time in secret was adapting some of the therapy models that we use for anxiety disorders. I'd been adapting it for misophonia. Just at that stage, it was just based on my experiences. But then I started to... build on it with my patients. So bringing in what they were experiencing and sort of really trying to flesh it out and then looking into the research to see what people were reporting in the research. And so to build this model of understanding the sort of psychological components of misophonia. knowing that it's not going to be a cure, but that hopefully we could help people. And those early few patients did really well. And one of them was really skeptical. There's no way this has got anything to do with psychology. I'm only here to prove to myself that it doesn't work. And then she did really, really well with therapy. And of course, the misophonia doesn't go away completely, but all the people that came through at that stage, they were able to work without feeling anxious anymore. They were able to sort of live relatively normal lives. But all the questionnaires around depression and anxiety all massively improved as well, not just misophonia.
Adeel [70:11]: How did that track over time? Do you follow up with them?
Jane [70:16]: With that group, no, because at the time I sort of collected it enough to, I did it as what's called a service evaluation where you only collect the data that you would normally collect for the purposes of therapy. So I hadn't set it up as research. So I couldn't do any extra things that you wouldn't normally do in therapy because you need ethics approval to do that. So we just did that. at the service where I was at at the time, we took questionnaire scores every week so that we could see change happening. And so it meant that we could see, oh, when we did this one particular technique or experiment, scores went down a lot. Now let's just have a look at someone else. And did their scores go down after they did that particular technique as well? And so we could start to see what some of the key things were just from doing that. so yeah so then then word got out that that's what we were doing there so we started to get more referrals for misophonia which meant that the treatment started to get better because i had more people to feed into it and that was around the time that i joined forces with cilia to to do the s5 questionnaire so then we started working on that at the same time and that because we then had statistics to help us we could learn more about sort of the um average picture of misophonia as well so that then helped with my therapy and obviously the having the questionnaire was going to help that as well that's kind of true yeah so so yeah the current group the current the makeup uh of where you are right now and you said there's also a
Adeel [71:48]: a research group looking at kind of younger folks? Is that in kind of the same offices as where you are at? No, so that's a separate project.
Jane [71:56]: So there are a couple of people who have some, so presumably you know about the Misophonia Research Fund that was set up by the Ream Foundation. So two of the funded projects from there are from the University of Sussex. And one of those is particularly looking at child and adolescents. So I'm in touch with them, but we're not part of the same team. um so my project so basically once i started doing this in my day-to-day clinical role and a lot in my spare time i think okay i really need someone to pay me to do this because it's taking up a lot of my time so i started applying for various bits of funding and just got rejection after rejection because people just did not understand what i was trying to achieve and then amazingly um one of my colleagues connected me up with paul slavkovskis who is a professor at oxford who was one of the pioneers in cpt in the uk he's developed therapy models for panic disorder for health anxiety for ocd she said i think he'll really be into this and it turned out he was really into this so he was just really excited that there was something new to work on and Oxford likes to be ahead of the curve. So they like to support innovative projects. And then I got funding from the Wellcome Trust who also like to support innovation. So I kind of went from applying for these tiny little grants that no one was interested in to then getting this, the mother of all grants, which is three years fully funded at Oxford by the Wellcome Trust. And so my proposal for that was basically to take what I'd been doing in therapy and to break it down and see if we can work out what the key. mechanisms are what the key aspects are that can change with therapy or that could change with therapy and so um over the next three years i'm going to be doing in-depth interviews with people just to really try and understand what's going on for people with misophonia and then we're going to do lots of experimental stuff so i'm in the department of experimental psychology which means we get to you know stick things to people and test them yeah it's amazing um this feels like real science and i've always been like soft science with psychology and therapy but this is like proper experiments so yeah so that's we're sort of in that process now so it's me and paul and my colleague victoria they're overseeing the sort of research supervision
Adeel [74:25]: So Paul, this is also part of his full-time, he's very much focused on this or is he the pioneer of CBT?
Jane [74:33]: He just drops in once a week and okay you know throws his genius hopefully without a donut yeah yeah everyone knows not to have any food in meetings now so so he's the director of clinical psychology here at oxford and runs the clinic so he's my research supervisor so basically he just oversees and makes sure that what i'm doing is um you know legitimate and makes sense and he can he can put it into the context of the many many research projects that he's done in the past So yeah, but he's not actually doing research on this himself. He's just supporting my research and helping me to develop my ideas. I'm pretty new to research. I did some research when I was doing my clinical psychology doctorate. three-year project then but then I moved more into the clinical side of things and then more like developing services and things like that so I'm kind of returning to research so it's amazing to have the support of someone who really knows what he's doing with research.
Adeel [75:35]: Yeah. Do you see the team expanding over the next three years? There might be folks listening who are... I actually, in fact, I know some who have recently got out of school. Maybe they're looking to join a group or somehow get involved.
Jane [75:49]: Yeah, I hope so. I'm still working with Celia at King's College London, and we have a couple of master's students that we're supervising with Misophonia Research. And I'm available to supervise masters and doctoral projects here at Oxford as well. If people are coming through psychology departments that want to focus on misophonia, I can at least in part help with that. We're sort of trying to link in with some auditory perception, more like brain type people, because that's definitely not my area of strength, but it's really a key part of misophonia. So I can't.
Adeel [76:25]: ignore it but I need someone else to help me do that part so there hopefully will be some collaborations there and of course my ongoing collaboration with Celia at King's College right yeah we'll have to it sounds like we'll definitely I would love to have you on um more often over the next three years and see how things are going uh and that I think that'll be really interesting um I guess yeah one thing uh I guess we should start to start to wrap it up um But I was curious, a couple of things. Well, one thing was, you know, we had somebody whose name is, you know, comes up in a lot of Google searches and YouTube searches, Tom Dozier on the podcast a little while ago. And I heard that maybe you had some communications with him over the past year. I'm curious what, you know, what you think of some of his approaches to misophonia and, you know, real kind of briefly. Yeah.
Jane [77:17]: Yeah, I appreciate that he may be a divisive figure.
Adeel [77:21]: Yes.
Jane [77:22]: I listened to his episode, so I heard you talking to him. So I guess the key thing, so he's very focused on the physical reflex. He's very, like, behaviorism-oriented. I think, I agree that for most people there probably is some kind of physical reflex. I just don't think that that's the problem. So I think that the problem is the meaning that we put on either the sounds or on the feeling that we get when we have to hear the sound. So that might be a physical reflex for some. For other people, it might appear as like... an image in their head that makes them think that there's something wrong with them. So you were asking at the very start about links with OCD. So somebody who is more in that OCD kind of territory, if they get an image that they're going to shove a fork in someone's face or something because they're scraping it when they eat. that's what we would call an intrusive thought or an intrusive image and if you then feel like that means i'm crazy or that means i really want to i'm a violent person underneath or that i really want to do something to harm them i wouldn't have that image if i didn't want to that would fit more in the more similar to what we might see in OCD. But we wouldn't consider the image to be the problem. We would consider the fact that you think that that image, which is not unusual to have violent images from time to time, but if you think that makes you a bad person, that's then the source of your distress. And so same with the physical reflex. I'm sure that reflex is there because whenever we have some kind of emotional experience, there's a physical sensation that goes along with it. But anything that targets that reflex, you can kind of only do one thing at a time. You can do that sort of gradual counter conditioning process that he talked about, but that typically doesn't generalize very well to other experiences. Whereas if you focus on the meaning, then if you come out of therapy thinking, I'm not a bad person for having these thoughts, or I'm not going to snap and lose control just because I tense up when I hear a sound, that then will generalize to other sounds. And we can do work on specific sounds. And I do a little bit of counter conditioning type things, a bit different from what Tom does, but sort of playing around with sounds and trying to take control of sounds. So we've got one where you pretend that you're a director directing a film and the character comes from a troubled background. And so they never learned how to eat properly. And so you sort of take control of the scene and it just sort of brings down that sense of violation or threat that you get when you hear the eating sounds. That's another form of counter conditioning that I also use, but I'm focused on changing the meaning that I'm in danger or I'm going to snap or I'm going to lose control or I'm not in control. I'm trying to change that rather than trying to change the reflex.
Adeel [80:13]: The mechanics, the physical. Interesting. Okay. Yes. Now I see the difference between the two. Okay. Yeah. So, yeah, another question I had before we wrap up. I'm curious. You mentioned you heard the Tom Dozier episode. Have you heard, I don't know how many episodes have you heard, but have you learned anything maybe from people who've been on the podcast or noticed any kind of themes that maybe have reinforced or would surprise you?
Jane [80:41]: I am constantly learning. I'm so curious about misophonia. So every time I listen to one of these episodes, every time I read people's comments, I'm in quite a few of the Facebook groups and following people on Instagram. I am always learning. So I'm really fascinated by patterns. So when I see something that seems like, oh, that's a really unique thing, and then someone else describes the exact same thing, I find that fascinating. but also sometimes someone has a really um different experience and that sort of plays on my mind and i start looking out like my lack of internalizing exactly yeah and things like that that so one of the things that cilia and i would like to do in our next research project is um to try and see if there are subtypes of misophonia so In therapy, what I'm noticing is that there are the people who sort of put it all on themselves, like this is on me, I've got to fix this, and either I'm a bad person or this is not the real me and I don't know how to fix that. And then there are people like this is on other people and they need to learn to behave better. And that can actually be harder to change because you don't have any control over other people. And so then it's like we might use different strategies for that, for sort of learning to cope and tolerate the world is not exactly how you want it to be. So what we want to do is to see whether there are sort of profiles of misophonia. that might be you might approach differently depending on yeah so the podcast has been fascinating for that because i can i sort of listen and just sort of keep track of little things and i just find it so interesting and fascinating and I always ask the groups whenever I'm starting a little project, I sort of ask for ideas or run things by people. When we were designing the website for the clinic in Oxford, I wanted to write a really good description of misophonia. So I posted it in one of the groups and they gave loads of feedback. And so I was able to make it absolutely amazing and written in collaboration with the misophonia community, which of course makes it more representative of what people experience.
Adeel [82:57]: Well, we definitely have links to all that in the show notes and when I post this on social media. I think I want more people to learn about your group. But yeah, I guess I should wrap it up here. Sorry, I love talking about this.
Jane [83:14]: You've given me free access to talk about it.
Adeel [83:17]: The only thing that's stopping me is I probably have to get back to my day job. uh yeah this has been epic but i do want to yeah any any kind of like um at least in this round one and who knows what round two will be but is there anything else you kind of want to tell people now about uh i don't know your research or misophonia in general
Jane [83:38]: I think the main thing for people in the UK in particular is that, please, if you feel like you really need help for this, then keep asking for help. And if the only way to get that is to contact, you can get referrals to our clinic in Oxford, but you can also just contact our clinic in Oxford to ask for help for how you can get help locally, that it should be available. And if it isn't available, then you can also get referred to our specialist service. A lot of people haven't heard of it and don't understand it and that makes it incredibly frustrating in this huge uphill battle to get help. But help is actually available and the NHS is supposed to provide help for people who are in distress and whose lives are significantly affected by a problem. Even if their GP doesn't understand the problem, you're still supposed to be offered help for it. So if you think that there's a psychological component, if it causes distress, if it has a significant impact on your life then I encourage you to just keep persisting and contact us at Oxford if you're having trouble getting help because we can sort of help you find the right terms and maybe provide some information.
Adeel [84:47]: Yeah, I love that message. Keep persisting, raise your hand, keep asking for help because it'll have an impact on you, but it also, that also gets the word out for other people too. So you are helping the community at the same time. Absolutely. well uh jane doctor dr jane gregory uh yeah thanks for thanks for coming out this has been an epic epic conversation um yeah i'm so glad you're doing the work you're doing and uh and yeah wish you the wish you the best for the next three years and we'd love to talk to you again thank you and likewise thank you for the work you're doing you're making just stories available to to everyone and that there's something so powerful about having that out in the world so thank you for your work too Thank you, Jane. So much to digest from this episode. Please reach out to Jane from her website or social media if you have any questions or feedback. Remember, all her links are in the show notes. But basically look at Sounds Like Misophonia, which is her online Misophonia persona. If you liked this episode, please leave a quick review or just hit the five stars wherever you listen to this podcast. Music, as always, is by Moby. And until next week, wishing you peace and quiet.