Paris (PhD student of misophonia) - Exploring Misophonia's Brain Basis and Mimicry
Transcript
Adeel [0:01]: Welcome to the Misophonia Podcast. This is Season 7, Episode 12. My name's Adeel Ahmad, and I have Misophonia. This week I'm talking to Paris, a PhD student researching Misophonia at the University of Newcastle in the UK. Paris has been making a name for herself already, having published papers alongside Dr. Kumar, who is very well known for his seminal papers on the brain basis for misophonia. Here we talk about her work on mimicry, mirror neurons, also how she got into miso research, visual triggers and other senses, autism, trauma, how to break into misophonia research, new ideas for public engagement, and a lot more. A few of my usual announcements. Thank you again for the incredible ongoing support of our Patreon supporters. And thank you especially for new supporter, Chelsea. Thank you so much. And if you feel like contributing, you can read all about the various levels at patreon.com slash misophonia podcast. I have to mention again, of course, our book Sounds Like Misophonia that Dr. Jane Gregory and I wrote is out now in the UK through Bloomsbury Publishers. It will be released in the United States on November 14th and actually pretty soon in Australia as well. This episode is also sponsored by Bazel, the personal journaling app that I developed for iOS and Android. Bazel provides AI-powered insights into journal entries and guides you with new writing prompts every day based on those insights. You can explore many different therapy approaches and philosophies. And it's available again for iOS and Android. Check the show notes or go to hellobazel.com. All right, here's my conversation with Paris. Paris, welcome to the podcast. It's great to have you here.
Paris [2:01]: Thank you.
Adeel [2:02]: So yeah, do you want to tell us a little bit about kind of where you are and yeah, maybe a little bit of what you do?
Paris [2:09]: Yeah. So my name is Paris, Arizona, Ash. I'm 22 years old. I'm from Newcastle in the UK, if you couldn't tell by the Geordie accent. I have a Bachelor of Science in Clinical Psychology. And I'm due to start my PhD in September, literally next week, at Newcastle University with Dr. Wok Fong and Professor Tim Griffiths.
Adeel [2:41]: Cool. Okay, great. Yeah. And so, I mean, some people listening might maybe familiar with your work because you've done some research related to misophonia and have some published papers. First of all, I think we talked about this maybe in messaging, but do you have misophonia yourself?
Paris [2:59]: I don't. I wouldn't say that I have misophonia myself. You're right, we did talk about it a little bit over message. But I would say that I'm more aware of the sounds around me because I know about misophonia.
Adeel [3:15]: Yeah. So obviously, you know, you've done some research into misophonia. I'm just curious, kind of like how you how you found misophonia as a as a path for learning and research.
Paris [3:26]: So I kind of got into misophonia research because I'd always had an interest in discrete disorders and kind of, I'd always had this urge, I would say, to give a voice to people that I didn't really feel had a voice. And then in terms of research, I came across misophonia on the Reddit platform. I'd read a post about someone wanting to become deaf because of misophonia and yeah it like really hit us like that person's story and i just kind of got into the research from that point onwards i just couldn't stop reading about it and i went to like the classical works like yastaboth and yastaboth when they termed it and then I led into working with Sukhbind Akumar through his research and just how interesting I found his perspective.
Adeel [4:32]: Yeah, fascinating. Yeah, you're right. I mean, we're definitely... That person who wanted to be deaf, I mean, they probably would have... been ridiculed if somebody you know the average person would have would have heard that but you know we all at least understand where that person is coming from and and you've you mentioned dr kumar obviously reading his work uh as as we all do those of us who've been following along you've gotten a chance to work with him as well right i think uh he was co-author i believe on one of your papers
Paris [5:01]: Yes, he was. He was the supervisor and author of the paper. I still work with him, meet with him every week, the Iowa group.
Adeel [5:10]: That's amazing. I mean, you know, coming from like a Reddit post to being able to work with the top researcher in the field, this kind of shows obviously your talent, but also kind of how wide open the space is for someone wanting to come up and do research. It's a small but growing circle. and um yeah that's that's that's amazing what was that like um it kind of i guess he's based in newcastle or was it some point yeah so when i started speaking to
Paris [5:43]: Dr Kumar Sukhbindar, just call him. So I'll just refer to him as that from now on. He was based at Newcastle University, which it kind of comes full circle because now I'm at Newcastle. But then about a month after I'd emailed him, he moved over to Iowa and is now at the University of Iowa doing his research there.
Adeel [6:09]: Is he physically here or not? Because Iowa is just south of me. I'm in Minnesota.
Paris [6:13]: Yeah, he's physically there.
Adeel [6:15]: Oh, wow. Okay. I need to take a road trip.
Paris [6:17]: We've got some studies that's all going on.
Adeel [6:20]: I'm going to sit in on one of his lectures. Maybe bring my microphone. Oh, very cool. Okay. But yeah, okay. Coming back to you. Coming back to you. This is interesting to talk to Kumara. So yeah, do you want to maybe tell us a little bit about the paper you worked on? I believe it has something to do with mimicry, which is something that comes up a lot on the podcast as a coping method.
Paris [6:42]: Yeah, so the mimicry paper, we essentially, it stemmed from Dr. Kumar's 2021 paper it did about mirror neurons. Very briefly stemmed from that. And we thought, well, kind of where can we go with the research to kind of try and identify and more embed the mirror neuron perspective? So we went towards mimicking and mimicry behaviours because he hypothesised that orofacial mimicry was involved, which is mimicking with the mouth, not necessarily physically making the sound, but just the action of the mouth itself. So that's kind of the motivation behind the paper, briefly. And do you want to go into some of the findings that were found?
Adeel [7:38]: Yeah, yeah, yeah, yeah, that'd be great, yeah.
Paris [7:40]: so we surveyed we got around about 800 people responded to our questionnaire and only 670 were used in the actual paper but we found that mimicry appeared to be highly prevalent in people with misophonia, unsurprisingly to you, I'm assuming. And that with increasing misophonia severity, in a sense, the likelihood to mimic also increased. So the worse your misophonia was, for want of better words, the more likely you were to use mimicry. And then especially in terms of eating sounds, which are as you know, a highly prevalent trigger. If you had high aversion to eating sounds, you were more likely to mimic specifically.
Adeel [8:39]: Right, right. And was the mimicking done kind of instinctively or was it to kind of like try to... I'm just curious like how people... maybe discovered it on or felt that it's realized that it made them felt better because you know when you tell somebody an average person they might think oh you're just making fun of that the other person i'm just curious um if if the survey or your work kind of got into like um were people actually using it to to really soothe themselves
Paris [9:15]: So this questionnaire that we used, the mimicry questionnaire, it was really more of a set of four questions. Well, five questions, because you had the first question was, do you mimic? Yes, no. And then you had like four follow-up questions, which were whether you mimicked spontaneously, whether you did it deliberately, and then whether your mimicking was in your control. and whether or not you did it for that relief that you talk about. And there was a high percentage of people that, I think it was over 60%, approximately off the top of my head, that reportedly mimicked to feel that relief from distress.
Adeel [10:04]: Do you know if this has been used in any clinical setting to actually... to be a treatment either on its own as part of a treatment?
Paris [10:15]: It hasn't been used to my knowledge outside in a clerical setting and I think that's because we want to finalise the questionnaire a bit more and get a bit more in detail because one of the things that we found when we came to the discussion section of the paper was we couldn't explicitly say that mimicking was being used as a coping mechanism. Right. we kind of frame it around that people have got relief from it, therefore you can assume it's a coping mechanism.
Adeel [10:45]: Gotcha, gotcha. Did it get into any theories as to why it is doing that? Obviously, you know, I think Dr. Kumar had some food for thought in his paper, how it's related to the mirror neurons, so it's kind of like, I guess, bringing a balance back to the body where The mirror neurons are then more in sync with the muscles that they're connected to when you're making the chewing sound. First of all, what do you think about that kind of idea? And did you have any follow-on thoughts in your paper around why it's working?
Paris [11:30]: Yeah, I think we're still very much kept with that perspective of what's happening. with the mirror neurons and the involvement but we also developed upon it and said that mimicry is being used in a sense to dampen the sound and when people are using it it makes triggers more predictable it's easier to expect because when you're making mimicking that action that other person's trigger you essentially know what's going to come next because you're more involved with the situation.
Adeel [12:07]: Gotcha. Maybe a little bit of, you feel like you have a little bit of control if you expect that something's happening. Interesting.
Paris [12:16]: I think we're wanting to go more into that pathway as well now with expectance and expecting triggers. I think we're doing a bit work on that.
Adeel [12:28]: Okay. So, um, yeah, maybe getting into, um, are there any plans for follow on research from that, uh, starting, you know, next week when you're back in school?
Paris [12:40]: Um, me personally, no, I'm taking a different direction with my PhD, but still I'm still involved with all the work that happens. Um, but I'm kind of trying to bring in a new area into our stuff.
Adeel [12:54]: Okay, so is it still going to be misophonia-related, but a different angle, or something completely different?
Paris [13:01]: Definitely still misophonia-related. There's still so much that needs to be done.
Adeel [13:05]: Absolutely, absolutely. Thank you. Yeah, that's great news that you're sticking within the misophonia sphere. Actually, I'd like to talk more about your plans. I did want to... just going back to this perspective and the paper and the mirror neurons, you know, there's been some thought about, you know, how misplaning is not necessarily like oral facial related or mouth sound related. Were there any ideas on how this could be applied to those types of triggers, which are not sound related, are not, sorry, they're all sound related, but are not chewing or mouth related.
Paris [13:48]: Yeah, so we did have a look at this. It's actually something that I added into the paper myself as my own idea. We looked at the trigger sound categories using the MQs trigger categories, which are eating sounds, nasal sounds, throat sounds. I'm sure you know them. yourself or you might not but we did a PCA no not a PCA we did a factor analysis and what that does is it kind of puts those categories into their own factor and then we took mimicking and we saw that as its own factor and what we saw was that mimicry more explicitly related to the social triggers and when we say social triggers we meant triggers that had a direct sound producer like there was someone making that sound so the eating sounds the throat sounds nasal sounds consonant and vowel sounds all kind of loaded onto that mimicry level and then the environment triggers like environmental sounds it has explicitly in the MQ and then repetitive tapping things like that loaded onto this separate level which didn't relate to that mimicry level so we kind of saw that mimicry essentially yes it explains this the social triggers the ones that have this sound producer but it might not necessarily be being used for these environmental triggers.
Adeel [15:48]: Gotcha. Yeah, because there was another paper, I think the Hanson paper, which seemed to criticize the mirror neuron approach because almost... I felt like kind of a straw man argument saying that, oh, well, it's not a grand theory of misophonia when I don't think it was trying to be a grand theory of misophonia. I think, you know, maybe there could be multiple things going on or multiple approaches. The mimicry could help with, could tell part of the story, which is related to, I think, like you said, social triggers. But there might be something else going on related to environmental triggers or at least different avenues of research for those kinds of triggers. Is my assessment fair or am I just trying to cause trouble?
Paris [16:36]: No, your assessment is very fair. And we kind of saw that that's what Kumar and the other authors wanted to do with this paper. We wanted to take misophonia, which had traditionally been looked at as a sound processing disorder. And then obviously we know now that that's not necessarily the case. And we wanted to... integrate these newer perspectives and take misophonia from this more holistic approach of being well it's not just the brain it's not just biological it's not just social it's something more it's got a little bit of everything and that's why we're struggling to identify it is because it quite literally is just everywhere if that makes sense
Adeel [17:25]: Yeah, and I agree. My gut feeling is that in a few years, Misophonia maybe will have a different name or it won't be just about sounds. There's something else going on. And obviously we can get into mesokinesia because that's the visual side of it. It's not just about sounds. And so, yeah, I think there's at least, like I said, at least more research that needs to happen. But I think there's possible multiple things going on or something that we don't know about. But these are, you know, the work that you and Dr. Kumar are doing are definitely amazing at shining a light at potential directions. Do you want to talk a little bit about kind of your interests in the immediate future? What are you going to be looking at?
Paris [18:13]: So if I'm talking about my way of where I think Musophonia research, I won't take it. I'll start off with my dissertation project that I did for my undergrad, which I loved the title of, by the way. It took us forever. I'm sure Dr. Jekyll had Musophonia.
Adeel [18:35]: Oh, that's right.
Paris [18:36]: The big long bit after.
Adeel [18:37]: Yeah, yeah, yeah.
Paris [18:39]: And that paper really, that was something like from my heart that I'd wanted to do from ever finding that Reddit post. And I do, I take it back to the Reddit and that paper that I've done, which hopefully I'll publish a pre-print of soon and then publish in a journal for everyone to read. That was a thematic analysis, which essentially says, qualitatively looks at the words that people are saying about their experiences of misophonia. And I wanted to do it with the Reddit page because I'm sure you've seen it's one of the largest misophonia support groups that are out there today.
Adeel [19:22]: Right, right.
Paris [19:24]: It's ever growing and it provides the raw lived experience of what it is to go through misophonia. Whereas if I was to interview someone, I don't feel they would quite want to open up the same way that they will on an anonymous platform. So what I did with that was I wanted to look at, instead of looking at Misophonia from a very scientific approach, for want of better terms again, from this approach of, well, we need to find a mechanism. We need to do this. We need to do that. I wanted to take it back to why as researchers we actually do research, which is for the people, for the general public, for people that are actually going through misophonia. one thing that I'd always felt was missed out of the Musophonia literature was the lived experience which made us always kind of step back and be like how how are we missing something so core and integral to our research yes we had case studies which are very helpful and very important but I wanted to do something that was large scale and I could draw patterns between what was actually happening so that's what I did.
Adeel [20:50]: Yeah, no, that's great. Yeah. Yeah, you're right. There's a treasure trove of information and not enough people are listening. But you're right. I mean, that Reddit group in particular has been taking off. There's a couple of Facebook groups as well that are major, but Reddit's a little different because it's anonymous. So I think you're right in a condition like Misophonia where people feel... Well, we kind of grew up feeling shamed and guilted or guilty about what we're feeling. That's a great place for people to open up.
Paris [21:27]: I think as well, as someone who doesn't have misophonia, it's very hard because I feel like I've got boots to fill, if that makes sense. I want to do the misophonia voice justice. I want to be able to represent it as... in detail and exact to how people experience it and some some may say like i've had some people like my friends be like oh well are you not scared in case you don't do it justice or in case they think well how would you know what it's like to experience misophonia do you not think it's a bit hypocritical things like that and the way I kind of say it is I want to be able to show people who have misophonia that there are people who don't have their disorder that will understand and it's a choice for people not understanding like it's very easy to understand Musophonia if you just take the time and I think that's a good message to kind of send people.
Adeel [22:40]: That's a great message. Yeah, it just makes me, it frustrates me even more that people don't take the time to understand it because small things can help a lot of people in a major way. And in going to your point about, you know, not sure if you're doing it justice. I mean, I don't, speaking for the Mies films that I know, we're very appreciative of anyone who, has any kind of empathy towards misophonia. So I think, yeah, I don't know. I think you have nothing but support. There may be some outliers who might be critical or raise an eyebrow, but I'm sure that 99.9% of people are very appreciative of the work you're doing right now and can't wait to see what you do going forward. So yeah, I want to thank you on behalf of the community for the work you've been doing.
Paris [23:37]: Oh, thank you. That really means a lot.
Adeel [23:40]: And so you did mention actually, you know, a couple of friends that you're talking about. You said you were inspired by a Reddit post, but do you know anyone or, you know, in your real life, family, friends, co-workers, students who have this about you?
Paris [23:59]: So it's very weird because I usually say that I attract people with Musophonia that I always tell myself because as soon as I kind of opened up to people about what I was kind of thinking of researching and how I kind of wanted to take my dissertation and things like that I told one of my friends and he turned around and he was like I have that. And I was just like, why have you never told me? And he was just like, well, people don't really get or understand. So I just don't really mention it. I just kind of try and cope with it myself. And I was just like, don't do that. I was like, you should have told us. Like I were going to Musephonia Research so much earlier.
Adeel [24:44]: Yeah, wow. Okay, okay. Yeah, that's interesting. Did you learn anything from him? Or has he kind of like, obviously, you know, learned from you? How has his misophonia changed? Or your friendship changed?
Paris [24:59]: So our friendship kind of changed quite a bit because... he became a lot more open to us about kind of talking about his misophonia and sometimes it would be like a little pocket of our friendship would be reserved for like running time for him. And I worked with him as well at university. So a lot of times we'd be working a shift together and he would be like, oh, I just, I need to go home already. Like the atmosphere is just so triggering. And I would just be like, oh, like I'll do this for you. I'll take over this bit and we'll shop places. Like if he was meant to be doing family food runs, I would be like, oh, no, absolutely not. I'll do that. You do this.
Adeel [25:50]: That's amazing.
Paris [25:52]: And I think it really helped. knowing and it kind of again bringing it back to like showing people that people without me is funny i can understand what you're going through and kind of take the time to try and help in just them little ways um i think that really helped me say like oh i actually can help
Adeel [26:17]: And it's the little things. I think I mentioned this before. I mean, sometimes just knowing that there is someone supportive, ready to do the little things can kind of calm that nervous system down to the point where even when we are triggered, we just don't feel as under threat by the world. And so it just has an overall effect. I don't know if your friend felt a similar thing.
Paris [26:43]: Yeah, definitely. And even now, I'll try and do, if he wants to go see a movie, I think it was Saw. spiraled from the book of saw i went to watch that and he didn't want to go watch it because he was he didn't know what kind of sounds would be involved in the movie so i kind of made a mental note as like the movie went on of like kind of what i thought sounds he may not like and then i gave him the list after and i was like this is the kind of sounds that are there like This scene is a bad scene. Maybe go to a toilet or put your earplugs in. It's not really integral to the plot, things like that.
Adeel [27:28]: Yeah, yeah, yeah. You also mentioned people wondering if or telling you... You know, when people think you're being hypocritical, I'm curious, did you get any criticism about the work you're doing? Maybe similar to the kind of criticisms we get for having misophonia, like, oh, it's not a big deal, why are you wasting your time on that kind of thing? Have you ever noticed anything like that?
Paris [27:56]: interestingly it's always been people who don't have misophonia who've criticized us oh of course yeah um it's always been like i've had a few people just make them comments like um it's a bit hypocritical like you don't actually understand what they're going through because you don't have it and i was like well you don't need to understand someone
Adeel [28:18]: quite literally by going through what they go through let's pause and restate what you just said it's people who don't have misophonia are trying to make you feel hypocritical about or saying that isn't it hypocritical that you don't go through what misadventure feeling when they themselves are pretending are thinking that they have the authority to tell you what we what they don't even feel yeah i don't know if i stated that right but it's like double layers of um hypocrisy and cognitive dissonance and epistemic injustice on on on what they just said so it's just always blows my mind uh what people who what people were not willing to be empathetic will say
Paris [29:03]: Yeah, but then I've had like the mass majority, I would say, of like my friends and my family are so supportive of like the work I do. My dad every day would call, instead of calling them discrete disorders, we call them fringe disorders, like the show Fringe. But yeah, like everyone else has been very supportive and I've been happy that I can educate them about what misophonia is too.
Adeel [29:31]: Yeah, that's great. Maybe you want to talk a little bit about the group that you'll be starting with. Is it a new group that you're going to be starting with at Newcastle Research Group? Maybe what are their interests in Misophonia?
Paris [29:45]: So the group that I'm working with at Newcastle is led by Professor Tim Griffiths. It's an auditory group in general, so we'll look at a vast array of auditory disorders, like tinnitus, things like that. Musophonia is in there. even though necessarily is it an auditory disorder per se, but it's there. And because I haven't met with them yet, we haven't really discussed kind of where they are feeling misophonia research to go. But I've discussed personally with like my supervisor, Dr. Wok Fong, where kind of we want to take my PhD.
Adeel [30:30]: Gotcha. And was misophonia started by Dr. Kumar when he was at Newcastle or was it somebody else? I'm just curious kind of how the history of misophonia in Newcastle happened.
Paris [30:44]: I'm unsure as to who necessarily started it. I know that Dr Kumar was very much ingrained in it. I think him and Professor Tim Griffiths worked on things together a lot. But I kind of want to say that it was those two.
Adeel [31:05]: Yeah, yeah.
Paris [31:06]: But I'm unsure and I'll probably get the history off them.
Adeel [31:09]: I was just curious. Yeah. And it's not a, that's not super important. Um, but so, so again, it gets me to make me thinking about, um, so, I mean, your work has been about mimicry and about mirror neurons. Um, has there been, has there been thought about kind of, why that's the case in some people, like where this might be coming from. Why does it start around, you know, age eight to 10, roughly. Any thoughts on kind of like the source of misophonia, how they came up with it, whether it was trauma related, possibly epigenetics. I don't know, any thoughts on that yet?
Paris [31:51]: so we've never quite discussed really where it came from we've had that question but never really explored it further um in my dissertation um i'm sure dr jekyll had misophonia i looked at that i looked at that um quite a lot and people would just obviously mention it and a lot of like those core first early memories kind of linked to trauma um sadly um a lot of it was childhood traumas and some of the stories that people would tell that just stick to my mind as um not liking loud footsteps or repetitive tapping or sitting at their table because their parents, that's what sounds would be made before shouting would happen. Things like that.
Adeel [32:46]: So I didn't mean to cut you off, but what came to mind was like, sometimes it's not the misophone who was Dr. Jekyll and Mr. Hyde. A lot of times it's a parent or somebody in their childhood. was the Dr. Jekyll and Hyde. And witnessing that and seeing that is, for a lot of cases, has eventually, I don't know, I'm careful to say led to, but it's, you know, that child grows up to be a person with misophonia in many cases.
Paris [33:21]: Yeah, yeah. Which is why I liked the Dr. Jekyll, Mr. Hyde kind of thing. Because at first glance, it's like, yes, people with mesophonia sometimes describe themselves as that. But when you take it back to the earliest memories and traumas, it has been having that Dr. Jekyll, Mr. Hyde presence in your life. And that, like, unexpectedness of what will happen, but yet deep down knowing what's going to happen.
Adeel [33:53]: Yeah. Have you thought about or looked at or have heard of the term like HSP, like a highly sensitive person, someone who's just, I don't want to say overly, but extremely attuned to what's happening around them, reading the room, moods. I don't know, have you thought about sensitivities on a larger scale?
Paris [34:18]: I haven't looked at HSP. I've kind of referred to hypersensitivities and being hyper-aware and things like that. That's kind of where I would say, in terms of myself not having mesophonia, I would say I've become more hypersensitive and more aware of what's around me. for the people around me. But I've never really looked at it in terms of just general HSP.
Adeel [34:50]: Right, right. And have you thought about, I think we mentioned misokinesia earlier, but is there anyone in your group or have you thought about the visual side of the triggers and how that might be linked to misophonia?
Paris [35:08]: So interestingly, that's where my PhD is going.
Adeel [35:12]: Okay, I finally got it out of you.
Paris [35:14]: Finally dug it out of his. Yeah. But yes, that's where my PhD is kind of going in that direction. Obviously, I can't say too much in case anyone's like, oh, that's a great idea. I'll do it.
Adeel [35:30]: Yeah. I know. Right. It could be a bit competitive, but yeah, that's interesting that it's an easy direction.
Paris [35:39]: I think it's definitely a direction because, like, like we say, misophonia is not just sound. There's so many different components to it. And when you look at the literature, misophonia and mesokinesia have been talked about as having this relationship, but there's no real where that assumption came from, if that makes sense. Like, no one's actually looked at it. It's just been like, oh, yeah, they must be related because they're like... the opposite of each other and it's like, well, are they more ingrained than we think?
Adeel [36:14]: And there's also, you know, people come on, there's no, well, there's no names that I know off the top of my head, but there are obviously sensitivities related to touch as well that, you know, that people will have sometimes related to sound, sometimes not, but they can feel the same fight or flight trigger. when they feel rumblings or other types of feelings or other types of senses. Yeah, actually, I'm curious, have you heard about research similar kind of, obviously visuals gets tied into misophonia a lot. Have you heard about other senses also being talked about the same way?
Paris [36:54]: So I had a discussion when I first started looking at misophonia with one of my lecturers during my undergrad and Dr. Amy Piasson and she researches autism very heavily and she's very renowned in it and gets awards and everything for it so I was talking to her about misophonia because obviously it's being regarded as a symptom of autism and a lot of people on the reddit had talked about being like potentially diagnosed with autism when they know that that's not what is it's just the misophonia component component and so we talked about this relationship with sensitivity and how misophonia necessarily i'm kind of hypothesizing here um i don't really feel sensitivity is the right word we're using because um In terms of sound and the sound sensitivity, when you look at it in comparison to autism, it's quite different. It's not necessarily sensitivity, it's something else. we don't quite know what that something else is unfortunately but I wouldn't say it's a sensitivity per se because if it was a sensitivity then the auditory pathways in the brain and stuff would light up more than what they do okay so you would define sensitivity as like
Adeel [38:34]: um like yeah like like basically like you said like those um the neuronal firing would be a lot more active but you think it's something what would you think it is that's something more psychological or more deeper in the brain well when when we look at like of our research i know tom dosier has done quite a bit on relaxation therapies and relaxation training and absolutely love his work um
Paris [39:04]: And he talks about misophonia and the trigger sound being a byproduct. And it's actually linked to that anxiety that you feel. So he told a story about his wife suddenly waking up and hating the sound of chickens one day.
Adeel [39:23]: Yeah.
Paris [39:24]: And she had this extreme hatred for the sound of chickens, even though they'd owned chickens for years. And what it actually was when he brought it back down to it was his wife was anxious about the neighbors complaining about the sound. Therefore, she became more hyper aware of the sound and got that anxiety feeling of, oh my gosh, the neighbors are going to complain. So it was actually that feeling and she was tying it to the sound, which was actually the byproduct. Which is kind of something we follow in our mimicry paper. We say that the sound necessarily isn't the cause of these adverse reactions, the mesophonic distress. It's actually the trigger person, the individual, which is why when we separate it into the social producer and the environmental triggers. it makes a lot more sense for mimicry to be there when it's a other person being the cause.
Adeel [40:36]: Essentially, yeah, the Tom Dozier chicken story, I mean, it's not unrelated to having a Dr. Jekyll present in your life early on, the misophonia, whatever the sound trigger you have now, it wasn't the original problem. It's a byproduct of something else that happened in Tom's case, the chicken, or Tom's wife's case, the chickens. Maybe in other folks' case, a volatile parent or something, but something within you wanted to almost kind of protect you by being over, by appearing to be oversensitive to a sound. Is that a fair kind of way to tie those together?
Paris [41:18]: Yeah, very fair.
Adeel [41:21]: Yeah, interesting. Yeah, I've had Tom on in the past. And yeah, always very interesting. Kind of a, sometimes a polarizing figure in the community, but it's good to have different perspectives.
Paris [41:35]: I find it interesting when he talks about misophonia being a disease. I'm not sure if you've ever heard him say that.
Adeel [41:44]: I don't remember that part, but yeah, do you want to talk about that a bit more?
Paris [41:48]: I'd attended one of his presentations and he said misophonia is a disease and it's highly contagious. And that's something that's always stuck with me.
Adeel [42:01]: Yeah, so I think the assumption there is that if you hear about a trigger, you kind of pick it up, which doesn't happen to a lot of people, but you hear about that anecdotally happening. Like if you read about triggers on social media, some people say, oh, now I have that trigger. Is that kind of what you're referring to or what Tom was referring to?
Paris [42:25]: Yeah, he was kind of referring to it in that way. And as well... in terms of his wife picking up that misophonia to the chickens, in a sense. And it's always had us thinking about educating people about misophonia and discussing triggers online. I talk about a lot in my dissertation how oftentimes people are sharing their triggers or what kind of gets them going. whilst that can be very good and overall I think it's very positive, there are some people that can then take that and harness that as their own trigger now. I think that's very interesting.
Adeel [43:09]: Yeah, I'd be curious to see if there is research on how much that happens. Because, yeah, I don't know if there are any numbers around that. Because I know that it's probably not universal, but I'd be curious how universal it is, if it is.
Paris [43:25]: Yeah, I've always not kind of, I've not kind of liked the perspective of using negative words when talking about Musophonia, like calling it a disease, things like that.
Adeel [43:35]: Yeah, I agree.
Paris [43:36]: I mean, we know what happened to schizophrenia when we made that sound really bad. So I'm always frightful. And it's why kind of we took away the term sufferers as well in our latest paper. A very minor change, but I think very integral to where our group wants to go. Calling people sufferers just I don't think is very right anymore.
Adeel [44:00]: Yeah, how would you, what are some words that you use to talk about misophonia and people who have misophonia?
Paris [44:06]: Well, I usually try to keep it very neutral and say people with misophonia, individuals with misophonia. I think misophonics and misophones is becoming a little bit better. Please correct me if I'm wrong.
Adeel [44:21]: Yeah, I don't know if there's one or the other. I happen to use misophones, but I think it was probably a split-second decision I made some years ago. Yeah, I don't know if there is an official term.
Paris [44:33]: But I think that's why we need people with misophonia integrated in our research though. Like with my PhD, that's what I want to do a lot. I want to integrate, it's called patient and public involvement, PPI. And I want to kind of get people with misophonia to direct research with me.
Adeel [44:57]: Yeah, is there any mechanism to do that? I know you haven't even started, you're starting school next week, but if and when you have a way for people to be a part of that, contact you, yeah, I'd love to share it for sure.
Paris [45:11]: I think I'd like to be doing interviews mostly or maybe even just questionnaires and asking a few questions and getting people to write out what they think and feel and then analyzing it like very briefly and being able to be like okay so this is where people think we need to go with research it would very much help for when it's like, oh, well, what would you like to be called in research? Like, it's small little things that make people with misophonia feel a little bit more part of the work that's actually being done about them.
Adeel [45:48]: Yeah, that's great. I'm sure people would be very receptive to that. So your PhD that you're starting, how long do you see it going? Obviously, it's going to be multiple years. Do you see it as kind of like one dissertation at the end or kind of maybe a bunch of offshoots on the way? Have you mapped out in your head how your PhD career is going to go?
Paris [46:14]: So at the moment, I'm kind of... looking at my PhD as being three years, obviously. Hopefully three years. Don't need that extra fall for you. Because some of them go on for like seven years, ten years.
Adeel [46:29]: So I'm curious kind of like what you were thinking. Three years seems nice.
Paris [46:35]: I'm doing it full time. So a part time PhD in the UK is six years. And then a full time one is three to four years. But I'm hoping I get it done in three because I'm very passionate, very organized, and I don't have the money for a fourth year.
Adeel [46:55]: Right. And do you know what you want to do after that? Continue with research, maybe take an academic post, start a big high-flying startup in the Misophonia space?
Paris [47:09]: I'd like to continue as an academic, as a researcher, but... I'd like to stay at Newcastle as well. I think it's a fabulous uni. The groups there as well, obviously Professor Tim Griffith's auditory group and then our connections with the Iowa group. I think it would just be like a breeding hub for misophonia research and I think that would be very nice. I think it would push other researchers and kind of, because at unis you've got students coming through, doing their dissertations to be able to be like, oh, well, do you want to do a project about misophonia? And then they end up falling into that career of doing misophonia. I think it would be very beautiful.
Adeel [47:51]: Yeah, that sounds great. So I've had a bunch of people come on, students who are, whether they're going to neuroscience or other fields with the goal of doing misophonia research or working with misophonia in some way, mostly here in the US, but I think in the UK as well. Do you have any tips you want to share with students? about, you know, who are just kind of interested in this funny research, some are maybe in high school still, on kind of how to pursue this.
Paris [48:23]: So I'll kind of take it from the very Geordie perspective of shy bans getting out. So the way I started off in this career, you would think like, oh, I must have been dead smart, had like a budding research post that I could... academic stuff going on already um i didn't i just kind of read dr sigbinda kamar's paper and then i emailed him i didn't attach a cv or anything i wrote a very passionate paragraph about why i wanted to research musophonia and he just so happened to say yes yeah amazing and that's that's like my best advice can be is just Put yourself out there. It's going to be scary. But the worst thing someone can say is no. And would you rather have them say no and know that that is the outcome or not say anything at all and that would be a potential yes?
Adeel [49:19]: Yep, that's great advice. Yeah, Dr. Kumar is very important. I emailed him at one point about something he got back to me right away. It sounds like you're very receptive too. So yeah, I think you'd be a great resource. Yeah, anyone who's, you know, a lot of people have read that paper and other papers. If you're interested in... researching misophonia uh like we said earlier it's a there's a huge blank space of um possible directions um and sounds like there's a great research community forming uh or continuing to grow i should say um yeah so that's that's great advice um i mean yeah we're you know we're coming up close close to an hour here at paris uh um i guess anything else you want to share or say about misophonia
Paris [50:06]: I would say as well as wanting to be academic and research focused one of the big things I'm working on currently, I just had some conferences about it last week, is public engagement. So as well as being a researcher and traditionally doing papers and things like that, I'm wanting to do more interactive exhibition pieces to have the general public learn about misophonia. I think as well as wanting to take my research the direction I am, I'd like to start educating the public about research very lay audience style, like a podcast, things like that, putting kind of papers into normal terms, I would say normal human terms and not using all the jargon that we usually do. I think that's a very important part, especially if we want the world to start being more receptive to Musophonia. One of my big bugbears is the Coca-Cola adverts and the now overwhelming use of ASMR in advertisements right what on earth is that about yeah they're obviously doing it to sell a product and make it seem desirable but if if companies big companies corporations knew what Misophonia was I feel like they might sit back and take a perspective of being like well is that really something we should be playing in the cinemas all the time
Adeel [51:40]: Yep. Yep. Yeah. I think you're talking about that. Yeah. Like opening a can of soda or pop, whatever you call it in your country. But yeah, I think maybe some people find that relaxing. You know, I would probably steer clear of that if I was a sound editor.
Paris [51:58]: Yeah. ASMR is meant to be very relaxing. Actually, I do listen to ASMR myself, but more so like people doing soft whispers and things like that. I can't stand the eating ones but that's not misophonia related that's just me related um but um i think that's kind of the way i want to take it though if we educate the public about these things could we end up getting i'm thinking like yes in the future yeah but could we end up getting quiet cinema spaces cinemas that use like you you can't eat in that part of the cinema You can't, there's not going to be those cork adverts.
Adeel [52:41]: Yeah, that would be an interesting place to go. I mean, there are now grocery stores that are having quiet hours for sensory sensitive people, you know, turning down the lights, turning down the beeping on the cash registers, not collecting all the shopping carts, you know, rolling them down the aisles. But yeah, it'd be great to have that in theatre spaces as well. yeah you're right do you have any ideas on like how to um you know for that public education like how to how to um how to frame misophonia because you know uh the short the short um description of it um being a sound sensitivity can kind of like make people just kind of be a little bit dismissive about it but i think you know taking a holistic approach when you do tie it to things like that you know, potentially childhood issues. I mean, these are things that I think most people don't understand or wouldn't even imagine is somehow related, but would hopefully, you know, you would think that would garner a little bit more empathy. I'm curious if we should be, you know, talking about those kind of other factors maybe of misophonia as part of our public education.
Paris [53:52]: So the project I'm working at at the moment is with Newcastle Uni and we're running a festival next year. Hopefully I'll have a stand there. I should do. But that one's kind of aimed at families and parents. And what I was kind of thinking about was having leaflets for parents to read mainly to educate themselves and kind of go more in depth about what misophonia is. And then I want to kind of make something that people can directly interact with. So I've got someone designing a cartoon where's Wally piece, and I'm going to have people find the person eating in the image, the person clicking the pen and kind of try and get children and parents to find those very quick. And then kind of talk a little bit about me as funny on how that those things are. like instantaneous second for someone with misophonia to recognize.
Adeel [54:58]: Oh, that's interesting. Yeah. Have a scene and have people try to find the trigger. Right. And then see how quickly someone with misophonia.
Paris [55:08]: And then at the side of it, to integrate, kind of show our lab that public engagement is very important. I'm going to have children and parents play with like paint and draw what they think a Misophonia trigger might be or even if people who are there have Misophonia and they're like oh my gosh I didn't realise Newcastle were researching this have them draw like their most hated trigger and then at the end have this big piece that has been made by the public to kind of show people of Misophonia like look at what we've done today as researchers like we've got everyone to recognise Misophonia even if just for 20 minutes.
Adeel [55:49]: Yeah. Interesting. Yeah, I love this. These kind of creative ideas for public advocacy. Yeah, that's really interesting. Well, yeah, we'd love to have you maybe back on the show in a year to maybe talk about the results of that. Yeah, I'd love to keep in touch just as your three-year PhD is going to maybe check in with you.
Paris [56:10]: Oh, definitely. We should do like a yearly update kind of thing. And then at the end of the three years, be like, oh, so this is what it all amounted to. And compare it to the first one.
Adeel [56:21]: Job done. Mission accomplished. Miss Phonia will be done. We can retire the podcast. That'd be great. No one's bothered by Miss Phonia. No, like I said, I think there'll be a lot of research and a lot of learnings. And I think a lot of the learnings we'll have to do will help things other than misophonia. Because I think going back to what you said at the beginning, it's a much more holistic issue. But yeah, Paris, thanks for coming on the podcast. It was great to finally talk to you.
Paris [56:48]: Thank you.
Adeel [56:49]: Thank you again, Paris. And once again, good luck with the PhD. And of course, we'd love to have you on here often. If you liked this episode, don't forget to leave a quick review or just hit the five stars wherever you listen to this podcast. You can hit me up by email at hellomissiphoniaepodcast.com or go to the website, missiphoniaepodcast.com. It's even easier to just send a message on Instagram at Missiphonia Podcast. Follow there or on Facebook at Missiphonia Podcast. On Twitter or X, it's Missiphonia Show. Support the show by visiting Patreon at patreon.com slash Missiphonia Podcast. The music as always is my movie. And until next week, wishing you peace and quiet.
Unknown Speaker [57:49]: Thank you.