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PAINCAST - a creative podcast from the PAINSTORM clinical research team and its patient partners exploring neuropathic pain and the impact of living with it. Presented and co-produced by BBC broadcaster and writer Fiona Talkington who lives with neuropathic pain.
Artwork: "The Pain of it All”, Michele Angelo Petrone, Wellcome Foundation
00:00:00 Speaker: Hello and welcome to Paincast. I'm Fiona Talkington and I'm Mark Smalley. This is episode four of the official podcast from the research project Pain Storm talking about all things neuropathic pain with clinicians, researchers, and people like me who live with neuropathic pain. As ever, we'll be catching up with the team and meeting some young researchers and hearing about how the input of those with lived experiences becoming more and more important in research and in pain management. We ask if nerves could speak, what would they sound like? Fiona becomes fascinated by tennis balls, and we'll hear how tragedy turns to hope in a transplant unit in Texas. It's just totally changed my life. It's amazing to hear from these people how rewarding and meaningful it is to them to know that these tissues that wouldn't ordinarily have been used for anything have been used to make these amazing insights into how the nervous system changes. And we'll hear from some of the global names in pain research. And to do that, we travelled to Berlin to Neupsig twenty twenty five, an international conference about neuropathic pain. I was involved in giving a workshop, and there was an opportunity to for us to see just how Pain Storm fits into the global pain community. Seeing some of our pain storm colleagues in their natural habitat, professor David Bennett of the University of Oxford is head of Pain storm and it was really good to catch up with him in Berlin and to reflect about the conference afterwards. Dave, I was really struck by this coming together of the global pain community and picking up on something of the relationship between research bodies across the globe. What's the importance of that for you. Scientific research is now incredibly international in its outlook. And it's interesting and I guess Covid taught us that maybe we underappreciated just how useful high intensity in-person meetings are for both our own research and disseminating that research for others. And the meeting in Berlin was exactly the area where we want to be active. And that's it's a meeting that's specifically designed for research in neuropathic pain. It's the chapter of the International Association for pain that deals with neuropathic pain. It attracts just under a thousand researchers from across the world working on this condition. And it's a really great opportunity. So so you kind of have the more formal sessions where we're presenting the outputs from pain, whether that's in poster format, brief talks or longer talks. And I can tell you it's really helpful feedback not only for the more senior researchers, but also for early career researchers. This is their chance where they can say, look, this is what I've been doing on rainstorm for the last three years. What do you think? Have you got any advice how this is going to impact on you? They can spend a morning getting the leaders in the fields coming around to their poster, spending time with them. They find it personally very gratifying and also scientifically incredibly useful. And then also, you know, we want to place our research in in the wider context. We're interested in how neuropathic pain is experienced in other countries. Professor David Bennett. Well, while we were in Berlin, I met one of Dave's PhD students, Lindsay Mugford. Her personal and professional interests unite medicine and art. The reason that I'm studying pain is my own experience of watching my grandmother live with chronic pain for the last few decades of her life, and seeing the ways in which she was not able to be living her life to the fullest, and that doctors were not able to give her answers or treatment or even closure with the idea that maybe there wouldn't be answers. And for me, when I think about pain within science and pain within art, at least as I've spoken to some of my scientist friends and artist friends, is, I think scientists tend to think about pain as something to be assessed and fixed. It's something to be understood. And we want to try to find, you know, ways to get to get rid of pain, which is very important. But a lot of my artist friends see pain as a source of artistic genesis, for lack of a better phrasing, where it's not about trying to eliminate pain, but actually trying to often sit in pain, understanding the dimensions of it, understanding how it feels, how it sounds, how it tastes, and not necessarily thinking of it as something to quantify and eliminate, but rather something to cohabitate with almost. I find those two pieces can feel like they're at odds, but I really think they're just different pieces of trying to understand the same thing. Oxford PhD student, scientist and artist Lindsay Mugford. Well, another of Dave Bennett's students in Oxford is John Locke. Like so many people working in the pain world, he was drawn to it by his own personal experience. I actually decided to pursue medical training and research studies, partially because of an injury that I had. It was a bicycle accident back in twenty seventeen, and I had a traumatic brain injury and broke my left collarbone into about six pieces. And I had orthopedic surgery, seven screws, a plate, and went through about six months of physical therapy after that. Um, not being able to use my left arm, being left hand dominant particularly was quite difficult. And so that was a very humbling and informative experience for me, and I consider myself quite lucky that I've recovered enough to the point where I can do what I can do now. But there are still days, particularly with my sequela from my brain injury, that I still struggle. And so I was sort of brought into this field of pain management and chronic pain from other patients I met during that journey. And some of the physicians that I had the privilege of interacting with. And so it kind of sparked this interest. And I thought, you know, this is where I'd really like to make an impact with my career. John Locke from Oxford University at the Neupsig conference in Berlin last autumn. And we'll hear from one of John's supervisors, Pain Storm's own Andreas Themistocleous later on. Hello. You're listening to pain cast episode four with me, Fiona Talkington and me, Mark Smalley. The Pain Storm Research Project is a hive of seven of what we call work packages, each one investigating different aspects of the mysteries of neuropathic pain, with the aim of ultimately feeding into work about finding better ways to predict who might be more likely to get neuropathic pain, and finding better and more personalized treatments of this life changing condition. One of the key figures not just in pain Storm, but so highly respected globally, is Professor Lesley Colvin, professor of pain medicine at Dundee University and consultant in pain services. Lesley and I, together with Katy Holzer from Saint Louis, Missouri, actually kicked off the whole conference with a workshop. Yes, getting people to draw, write and discuss the topic of the importance of involving people with living experience of neuropathic pain. The workshop. So this is a scientific conference and it's a great scientific conference. There's some amazing science, but one of the things that I noticed a couple of years ago was that in terms of input from people with lived experience were really quite limited. So we suggested we put forward Fiona and I, Catherine and Katie put forward a workshop where Fiona actually is leading the workshop rather than myself or Katie or Catherine. And initially there was a little bit of reticence, I would say, about saying, well, this is a scientific meeting. Do we want a workshop where patients are leading? But actually, in terms of doing the workshop, I think today or yesterday, we have probably changed perceptions a bit. Um, and I think it's really important that particularly early career researchers understand the importance of involving people with the condition in what they're studying. Because I'm pretty sure it's one of the reasons we have been so slow in developing new treatments and moving new treatments through from early discovery through to the clinic, because along the way, there are so many points of failure. And one of the points of failure is actually not asking people who are living with neuropathic pain. What is important? Because if you don't design that at your study right from the preclinical thing, to understand that, then it's almost doomed to failure. I did my PhD last century, a long time ago, working in a lab in a preclinical model of neuropathic pain. And at that time, it was absolutely accepted that all the experiments we did were on male rodents. And I'd never really questioned it, actually. Now, we've now realized, in fact, why are we doing that? Because there are sex differences. There are more women than men suffer from neuropathic pain. So why why were we doing that for decades? So all that evidence you think is that open to question? And I think if at that point we had people with lived experience involved in commenting on study design of pre-clinical studies, we wouldn't have spent decades doing that because it would have been so obvious to you, wouldn't it? Absolutely. Perhaps we could talk a bit about the patient partner role in Pain Storm because we don't just sit back and say, oh, yes, that's that's fine. I think myself, Joe Gordon, we're all quite feisty and we we challenge a lot. But I think the relationship between all the different people is a really strong one, where we all respect each other's views and everyone's views are welcomed. How do you think that that has shaped the way that pain storm has been over the last few years? So, I mean, you've been involved since before we were awarded the funding very early on. And I think that's absolutely key. And the word you used that respect. I think that's important. So and it's not just the involvement of patient partners in making sure that our study is relevant and well designed. But actually, and you maybe don't realise this, but in terms of what you bring to the team to make us a proper team, a proper collaboration, you know, scientists, you know, No. Inevitably you're competing for grants, you're competing for publications. But actually, within brainstorm, I think we work very much as a team, although we're from lots of different institutions. And I think part of that has been very much helped by having the very active involvement of people with lived experience, because you're not competing against anyone. No. Absolutely not. I felt that the vibe we were able to give the tone of our workshop yesterday between yourself and Katie and myself, and the input that we had from Kathryn was very inclusive, and I got the impression that people from all different clinical levels who were there from medical students, young researchers to consultants from eminent hospitals, that we managed to find that way, that we were of interest to everybody. And judging by the number of people who queued up to see us to get the t shirt signed. Sign the vinyl sort of thing at the end. It was so interesting. And it was also very touching because I think you were explaining a lot of the science, a lot of the research, but you do it in such a human way that you draw people in. It's not looking at a slide of data. It's you with your experience and your feeling for patients that actually make that received so well. So did you feel that there was a very different vibe from some many other conferences and presentations? Yes. No. Absolutely. And I think we had the discussion the day before when we were setting up for the workshop about, you know, it would be interactive and people would be creating things. And you had assumed that's what the workshop would be. You would assume that whereas most scientific conferences, a workshop is often three scientists or clinical academics standing up speaking for twenty minutes each. And you'll either have a question, your question and answer session at the end, or if you have been particularly innovative, you'll do it after each session. So I think there was initially when people came into the room and there was clearly something going on that was slightly different, with bits of paper and scissors and crayons on the table. There was a little bit of just people maybe resetting what their expectations were of the workshop. And I think actually that just that resetting and challenging how people think about the science of the conference was really important. And I think that's why we got so much really good discussion, not just general discussion around the room, but within groups as well, where people were exchanging ideas. Professor Leslie Colvin from the University of Dundee. In Berlin, not just to represent the rainstorm, but presenting young researchers Judging some of their many posters, leading workshops, and reflecting on how pain research has changed over the course of her career. I'm Fiona Talkington, you're listening to pain cast, unravelling some of the work of the Pain Storm Research Project. Mark and I followed some of our Pain Storm team to Berlin last autumn for Neupsig twenty twenty five, the Neuropathic Pain Conference, where world experts and young researchers gravitate to share interests and learn about the latest research. Just to give you a sense of who was there, I went along to a meeting of a group called picnic, whose task it is to review hundreds of research papers and coordinate their findings. They usually meet online, but for the first time, Berlin brought them face to face. I couldn't resist getting them all to say a few words about what they do and what their hopes are. By the way, when they talk about sip or sippin. That stands for Chemotherapy Induced Peripheral neuropathy. Hi, my name is Sarah and I am an assistant professor at the Danish Pain Research Center or University in Denmark. And I am here to learn and help out to find the gaps in the field and hopefully move the field forward. Hi, I'm Maria. I'm from MD Anderson Cancer Center and I'm here at picnic today to improve our understanding of the translational gap that needs to be bridged between the pain research to improve the cancer and pain management for our patients. Hi, I'm Pat Doherty, I'm from the MD Anderson Cancer Center in Houston. I've seen what Cipn does to our patients that survive cancer. And the good news is you're free of cancer. The bad news is your hands and feet are on fire. The other side is this is the most exciting time I can remember. I've been in this field for. I don't even count the years. But the revolution that we're seeing in the science is truly staggering. And I think we have a lot of huge breakthroughs coming soon. Hi. I'm a postdoc at the University of Dundee in the United Kingdom. I'm working on this project with Lesley Colvin to hopefully develop new therapies based on the mechanisms that we find out on the systematic review. Hi, my name is Nina. I'm a postdoctoral student and an oncologist in training from Danish Pain Research Centre or Host University Denmark. And I've seen cipn in patients regularly and seen how they suffer. And then I've seen on the research side, looking at how we can't even decide upon a consensus on how to define cipn, which is quite frustrating. So I'm here to help in whatever way I can to push this forward. Hi, I'm Tony Pickering, I'm a professor of neuroscience and anaesthetics at the University of Bristol. I look after patients with chronic pain. I'm frustrated by the lack of good therapies for them. I'm here to learn from these colleagues and to share our findings with them. Hi, I'm Francesca Denk. I have a research lab at King's College London. I'm here because I believe more and more that science has to, and has also evolved from the single genius in their own little lab, doing something to big teams, coming together and solving big, important problems together. And I, I hope and I feel I've seen that that really accelerates the progress of, uh, research and also gives, therefore, people living with chronic pain, fast access to better drugs. Hi, I'm Sarah Oliver from postdoc from the University of Oxford, and I'm here in collaborating in this review because I think it's very important to understand how we are modeling chemotherapy induced peripheral neuropathy, so we can use these preclinical models to understand more this neuropathy and then make everything more translatable. I can't tell you how incredibly moving. It was to be surrounded by that surge of hope and clinicians belief in the importance of what they do. You heard Pat Docherty there, a leading neurologist from Houston, Texas. He came up to me afterwards with some more reasons to be cheerful, too. This is the time, he said, for patients to be hopeful over the course of his career. He says research has gone from sailing ship to Starship. When I first started the idea that there were neuron specific to detect pain, and then there was neurons that were specific to move that from the spinal cord to the brain, that was all being was new. And the idea of how do these cells chemically talk to each other was basic stuff. And the field has progressed tremendously. A lot of that has been based in animals. The huge change is that now we're more and more doing work not only in patients but in patient derived tissues. And I'll just tell you a little anecdote of how this sort of got going, because it's really occurred over about the past, oh, ten, twelve years. And it was literally one day I was on the elevator at work going up to my office. And so Larry steps on the elevator and I say, Larry, is there any reason like ever you guys would, you know, because during your treatment of patients take out human dorsal root ganglion, which is where these cells would live? And he looked at me, got this shocked look, and I thought he was going to say, you know, you basic science barbarian. How could you say such a thing? But he said, no, we do it all the time. And I was, oh my goodness, Larry. Well, do you think we could start studying those cells? Low and behold, when we took them to the lab, we found that if those neurons that that tissue came out of an area of the body where the patient had ongoing pain, like burning, pain, numbness, tingling, all that kind of stuff. Sure enough, the cells were active just like we saw in animals. But if the tissue came out of the area of the body that didn't have pain, no activity at all. That was a huge breakthrough for us because that told us now, not only do we have a tissue from humans that we know the physiology, the biology is fundamentally altered and tied to a human report of pain, but it lines up to the animals. So now we can move back and forth between those two seamlessly understanding the biology. But more importantly that, let us now test a therapeutic on human tissue and have a pretty good idea before we ever go to a clinical trial, whether that's going to work or not. And that combined with the level at which people are now molecularly characterizing and dissecting both human and animal neurons, we can start getting insight to the very fine detail, molecular mechanisms of how these cells work and how these cells go wrong. We've gone from, you know, sailing ships now to at least jet aircraft, if not space ships, as far as our advances are. And so things will crack and we will get some breakthroughs. It's just a matter of now continuing to plug away. Pat Docherty. Over and over again, people, Fiona have come up to you and me at the Berlin conference, and they've been wanting to talk about the importance of patient partners, your role that's involving people with lived experience in the research itself, and especially this was the case among the young researchers we met right at the start of their careers, and that included Klaas from Belgium, who now works in Germany. Yeah, I think it can give purpose to a lot of people's lives. It might sound weird that the pain of someone can give purpose to someone else, but it's really kind of what the research I am doing day in, day out, might be very small, might be on protein X to understand that how it makes a neuron grow. You know, a very basic question. But if you know in the end that that research might, in twenty twenty five years be useful to bring a new treatment to the market. I think that might give purpose, but I do think this purpose can only be reached when you put an academic young researcher together with a patient, because it's this personal connection that that drives it. It's not gonna be a paper that describes patient experiences. They are also very important. But I think really getting a patient in the same room as a young researcher can really drive someone's purpose of life. Yeah. I find it so encouraging to hear you speak like that, that, that your own perception, your desire is to get, you know, a new generation together with patients in the same room and and reach that understanding. It is the way forward. And and it works well. It's good for people to meet people at the end of the day, isn't it? It does make the world go round. Yeah, I agree. I think patients message is ultimate drive for people to generate new treatments. So bring that voice out I would say plus there now Fiona, we also took the opportunity of chatting to a well-known pain storm figure, now president of the Iasp, or Iasp, the International Association for the Study of Pain. Professor Andrew Rice, who was grabbing a coffee with the esteemed Simon Haroutounian and your fellow workshop presenter. In fact, Katie Holtzer, who you just mentioned from Missouri. Yes, and I began by asking Andrew just what the conference meant to him. This conference is one of the highlights of my every two years. It's the place where scientists working in labs meet clinicians and increasingly meet people with lived experience. So that's been really powerful. But my stage in my career, the most powerful thing about being here is seeing the absolutely fantastic next generations of people coming through and the exciting stuff they're doing, but also their excitement. Um, on the topic. And that is so inspiring to see. Yeah. Sandra, I, I agree with you. It's been inspiring to talk to so many people right at the start of their career without energy and inspiration. Also delighted to meet here, someone who's many papers I've read and admired and have inspired me is Simone Harutyunyan. Simone. Welcome. Uh, what do you get out of being here? Neuropathic pain has been, you know, one of those conditions where patients who are affected by it are I really are really in distress and it really negatively affects their daily life and functioning and, you know, ability to do things that they want and interact with family. And, and it has been a challenging condition to treat. The treatments that we have now are only working for some patients. And really, Neupsig has been one of those central organizations that have been really trying to bridge science and clinical work and support the development and, and testing of new interventions. So I've been a member of the management committee of Neupsig for almost ten years now, so I really. Feel that I'm devoted to the mission of Neupsig and. And hopefully even after I step down next year, I'm. I'm pretty sure I'll be coming to those conferences in the in the future, you know, to meet colleagues, get updates on the science and trying to, you know, do my little part to contribute to the mission. And also joining us here is someone I only met in person just two days ago. Or was it yesterday? I can't remember a time. Sort of warped really. Is Katie Hoelzer from Saint Louis and we bonded over presenting a workshop together. So, Katie, how have you found being at the conference? Thanks, Fiona. This is my first time at Neupsig and it's been a really nice experience. I got the privilege of participating in a workshop with Fiona that I think was somewhat radical, and it was a great experience, really positively received. And I had the privilege of showcasing some interviews I did with patients and clinicians who have worked with people with neuropathic pain. And that was that was really a highlight. And I hope to come back here again. Katie Holzer, Simon Haroutounian and Andrew Rice there. Simone touched on one of the key issues for those of us living with neuropathic pain, just how challenging and difficult it is to treat. And Fiona, among the people we met in Berlin. I couldn't drag you away from Hadassah. Olek, who's doing amazing work with the challenging sensory aspects of of neuropathic pain. What we actually do is sensory retraining. The idea is that neuropathic pain, the underlying mechanism is sensory impairment. Patients will come and say, I don't feel my feet at all. They're cotton like and I don't feel them. So I'll start with a cold pack and we'll put the cold pack. They'll be blindfolded or just close their eyes and I'll say, do you feel the cold? Just tell me, do you feel it? No, not yes, that I feel. Okay. So we start with something. There's no I don't feel it's not a zero one. It's a it's a continuation. And then we can go into let's feel the cold floor or the carpet and we can go to sensing. Is it a tennis ball or a squishy ball? Okay, so we'll go there, we'll have a square and we'll have a triangle. And can you say what shape it is? Okay. Or for, for for fingers will go all the way to coins. I put my my hand in my pocket and I know if it's a dime or a nickel and, and in patients with chemo induced neuropathy, they can't tell that. So we'll go all the way there. It's the whole continuum. Hadas Olech and typically Fiona, after that encounter, I could see you scurrying off with the half a dozen other projects in mind inspired by that encounter. You know me too well, Mark. Thank you. Well, Berlin was a real eye opener for me in terms of realizing the huge amount of work being done in neuropathic pain research around the world from Nepal, Australia, India, South America, the United States, Canada, Africa. What an exchange of cultures, of ways of working and how things are funded. And an abiding memory is of how tragedy turned to hope. In Texas, where neurologist Ted Price works with neurons in human tissue from organ donors. We've done about four hundred and fifty of these recoveries at this point. We have a really amazing bank of these tissues, and we have funding from the National Institute of Health in the United States through something called the Precision Pain Network, which has allowed us to do lots of really detailed molecular biological investigations on these tissues. And we've essentially gained what I think is a pretty amazing insight into the molecular composition of these neurons, number one, and also how they change in people that have diseases like diabetic neuropathy. And then another thing we've also developed is to do recoveries from people that are having relatively rare surgeries, where the dorsal root ganglion is excised as part of the surgery. I get the impression talking to you now that you have a real sense of the end product. If you like, you can really sense this is actually changing people's lives. How important is it to you that this is a target, and how can you bring your team into having patients at the center of what you do? Doing all this work has fundamentally changed the way we think about everything. So I would say that for me, just working with the organ transplant group has expanded my view of this pretty dramatically. So, you know, we are thinking about working with with patients that have pain to better understand, you know, what are the types of things they would like to know about what has happened to their nervous systems. But we also have this totally different thing with working with people who lost a loved one for and became an organ donor, or people whose loved one was saved. I get kind of emotional talking about it, actually. I mean, it it's just totally changed my life. It's amazing to hear from these people how rewarding and meaningful it is to them to know that these tissues that wouldn't ordinarily have been used for anything, have been used to make these amazing insights into how the nervous system changes. Ted price from the University of Texas at Dallas. Well, I mentioned pain storms. Andrea Themistocleous earlier on here on pain cast, whose work with Microneurography in Oxford I find fascinating and exciting. He explained to me a bit more about his work. Microneurography is a. It's a neurophysiological tool, which means that it can record nerve activity directly. So the fibres that generate pain are actually very difficult to record from. And this is the only technique that we have that can can capture the activity. So my role in the greater project was to be able to actually just capture those that activity from the nerve fibers, and then see how that related to all the other measures that we were going to look at. So for example, one project was looking at brain imaging. So you take a patient with pain. You take a patient, another patient without pain. You scan their brains and you see what lights up, what signals you get. And one of the measures we're going to look at is how my recording from a C fiber from a nerve fiber, a pain fiber in the foot, actually relates to that activity in the brain. So that was my role was to capture the neurophysiology. Um, so the nerve nerve activity, but because it's such a broad project, I'm one cog in a very big wheel. So we're looking at blood. We're looking at blood to look at different markers in the blood. We're looking at genetics. As I mentioned we're looking at brain imaging. We're looking at patients questionnaires how they feel about their pain. So that's how I envision my role in the whole project. We had a fascinating conversation again in the early days about the involvement of sound in your work. So what about sound? How did that fit in? So when you use Microneurography, when you place the electrode directly into the nerve that you're recording from. The way to locate the nerve is the use of an acoustic signal. So when you get in the right place, you can actually hear the nerve, the nerves firing. And they have a very characteristic activity. So fibers that respond to touch are very different to nerve fibers that respond to painful stimulus. And it's quite an evocative example of how your nervous system is working. So during the process of learning the technique and using it in my patients, you capture a wide variety of sounds. And as you mentioned, we did discuss how that's quite a. It basically brings your nerves to life. It brings pain to life in a very vivid way. So over the years I've been collecting an array of recordings just to demonstrate to other scientists as well as people from the public exactly how nerve nerve sounds. And you always find some fun examples. So for example, I've got a nice one from a five that responds to cold, and I can turn it on and off just by heating and cooling the skin. So that's really physiology in action. And I think it would be great if we can somehow use that information to present to patients what their nerve fibers look like, to maybe give them a deep understanding of their nerves, how they're working, which might potentially, in the future, help them deal with the pain that they're suffering. How would you say pain storm as a team, work has really influenced what you've done, what you've achieved? Well, it's been an amazing experience on many levels. First of all, if we look at from a scientific point of view, it's obviously advance the science of pain research. There have been fantastic outputs that have been generated by this project. So when I say outputs, publications also patient engagement. So there have been a lot of events which I think has been very important because I think that's been the most important learning point for me is to get our patient partners perspective on the work that we do and also what's relevant to them. It's the first time I've been involved in a project where there's been so much patient involvement. So for me, that's been the biggest learning learning point because what is important to us as a clinician, as a scientist might be not relevant to what patients actually need. And then also as a young researcher, it's been very helpful in my career growth. So it's given me exposure to new collaborations to senior scientists. Also people outside of my field like yourself, building new collaborations. I think that's been very important. Really impressive there. Fiona to hear. Andreas simple, easy to grasp accounts of how neurons actually do their work and how he captures that through his science, and also the inspiration for him of the sound generated by nerves. I can't let that one go. Let's see where where it does go. I joined Pain Storm as a patient partner soon after the research project began. I don't think I had any idea that it would go in so many different directions scientifically, creatively. And I like to think that we've been able to spread the word about the challenges of living with neuropathic pain, as well as the privilege of seeing where the research is going. And with Professor David Bennett again. Dave, what were your hopes and aims when Pain Storm began? That's a really good question, and I think my hope was and it has been largely fulfilled. I wanted to build a really diverse, enthusiastic team to tackle what is a big problem, neuropathic pain and actually really leverage that diversity, because I think it's such a difficult problem to tackle. No one lab is going to actually have the expertise within it. Maybe it's also partly my curiosity. I love learning new things, so I like learning from people in different fields. So I very much wanted to get really diverse expertise. And what I mean by that is, for instance, not only looking at the detailed genetic mechanisms underlying neuropathic pain, but also looking at the complex psychological processes that might mean that neuropathic pain is more disabling in some people than others, or new ways of undertaking qualitative research to see how neuropathic pain impacts on people's lives. I really enjoyed that diversity within pain storm, and I think we, in my view, are maybe biased, is that we have largely hit that agenda in that we've produced some significant outputs on all these very different aspects of pain storm. And also we're in the process. I don't think we've finished yet, but we're trying to interlink, interweave some of these different themes as well, i.e. rather than looking at in any one dimension, can we now, now that we've built really what is an impressive data set generated from lots of people with neuropathic pain? Can we try and knit these different factors together? So that is something that we're working very hard on at the moment. I'd say the other thing, um, and I'm, I'm not just saying this, but I would say that in terms of the level of working with people like yourself with lived experience of pain and trying to bring in that expertise and also to disseminate that information and pain. Storm was more ambitious in that aspect than any grant I've been involved in before. And I think part of the credit goes to the funding agencies in that they they wanted us to build it that way. And part of the credit goes to the fact that we definitely embraced that, that concept. Um, and I would say that is one area where painting has surpassed expectations. I think it's been really wonderful to work as a team in that, and I think that's probably the difference. And that's been a wonderful thing. You've mentioned the word team a number of times, and from patients point of view, I think it's been an absolute privilege to be part of that team. I think you've you've handpicked, you've chosen people who are wonderful human beings, top scientists and researchers with a real ambition to find real solutions. But it is absolutely teamwork. Yeah, no, I think you're right. Number one, I enjoy working in teams. I think I think it should be to disabuse that people listening to this. I think that the old concept of a genius scientist sitting, you know, maybe Einstein, by the way, I'm not comparing myself to Einstein strolling around some kind of Central European lake and thinking about a new concept. And that may work for some scientific fields. That is really, absolutely not how a lot of medical research works now and again, for these really complex problems that you can only tackle from lots of different directions, you absolutely are going to need to embrace teamwork. But actually, and so a lot of science is now done in that way. And we even you will see the term team science. And many funding agencies realize that whether it's the European Union or whether it's the UK or US or lots of these different funding agencies realize that actually they need to work as a team to tackle these big problems. So we're coming towards the end of the inevitably finite funding for pain storm. But this isn't the end of what everyone has come together to do. What's next for Pain Storm? Yeah, I think that's interesting question. So so you're right. Um, the, the funding sadly ends in in July and at the outset, and this is true of many grants. And I you know, I think again, credit to the credit to the funding agency, they said we are going to give a one off five year tranche of funding for this work. And that's going to be it. You know, credit to them. They were very I would love it if they'd have said there's a chance for renewal. But they were very up front at the beginning. So then you kind of have to think about, okay, the funding is ending, but how are we going to maximise the legacy? And I think we can do that. And we have done that in a number of ways. The first thing to say is there's still going to be a significant tail of research that's going to carry on. So we have already generated some great outputs. I don't mean to quote numbers at you, but I was looking at them recently. We've published over seventy papers already, which I think is a pretty good achievement over five years. And there will I can guarantee there will be many more to come. So there's papers to be written. There's still some data to be analyzed. So some of the most complex data sets, particularly for instance, relating to the genetics because of the way this has worked is we've recruited participants, we've generated the data, and then we're going to do things like the genome sequencing in genetics in one big batch, because it's scientifically more valid and actually much more cost efficient to do it that way. We're only going to be getting that data right at the end of the consortium. But of course, we are going to analyze it. And I think as a scientist, you accept the fact that there isn't always one on one match between how long the funding lasts and when you actually doing the kind of analysis. So there will be absolutely some interesting data to come. And we've got some really good plans for that. And also, we've generated a lot of data, much of which we will analyse ourselves, but also we want to make that available to others to analyse. So again that's going to be a legacy that's going to be there that people can apply to have access to that data and then think about they might have their own ideas. I don't pretend that I'm the only one that has good ideas There will be people that can think they can do something different with that data. And the same with. We've generated lots of blood samples that participants have kindly given to us as part of this research, and those will be are being stored in a biobank in Imperial. And again, people can apply. They might have a new idea. We might we've thought about a new protein that might be a biomarker of pain. For instance, we can apply to the biobank and then they will have access to those samples. Lots of links with industry. So AstraZeneca and Lilly were two big pharmaceutical companies. And again, some of those, those links won't just disappear with the end of pain storm. We are having those communications and they will be interested in the outputs. And similarly with our plans to kind of disseminate this information. You and I were just talking, we've actually thought about how we can apply to other funding agencies to enhance, uh, artistic expression of pain and other media, which we can use to reach out to people. What I'd like to get across is there are multiple ways that I hope we're going to build on this legacy from Pain Storm. So although I'm sad that the funding is ending, I'm very confident that the influence will carry on for many years to come. Professor Dave Bennett. Well, finally today, I want to pay tribute to some people who've been alongside me in this Pain Storm project, my fellow patient partners who also live with Neuropathic pain, Gordon Liddle and Joe Josh and Catherine Martin from the University of Aberdeen, who's held us all together and allowed us to go along with some crazy ideas as well. Now, Catherine wasn't able to be at the Pain Storm AGM in London last year, but we were delighted to be joined by Pain Storm's Katie Allen when we had a bit of a catch up and reflected on the role of people with lived experience in pain research. The power of hearing from people with lived experience and the impact that then had on the people in the room. You could hear people kind of relating that to then what they were doing in their work and fueling the kind of the passion that people clearly had. But I think it just keeps people motivated and keeps people understanding why it is they're doing what they're doing. When it's about trying to improve people's lives and support our understanding, and ultimately to find ways of helping manage the condition better. The thing with neuropathic pain is it is so contradictory in how it's experienced. And I have used an analogy which is it's a bit like being the little mermaid who gets her legs to go find her prince, but it really hurts when she walks because. But she doesn't feel the ground because that's how it is for me. I do not feel the ground. I fall over very small bumps and slight slopes in the floor. But it hurts. And it hurts such a lot at night when you're not doing anything and you're really aware of it. But I mean, you're British, you can't complain, can you? But we try to. Neuropathic pain has been around for a very long time. The three of us all come from different backgrounds, different causes of neuropathic pain. And, you know, that's, I think one reason why we experience it differently. Gordon. But we've got years of lived experience between us. One thing that makes neuropathic pain, like lots of other bad things, is a distraction is actually an incredibly powerful way of coping with it. Nerves don't replace like skin replaces. They don't regrow like liver tissue regrows if it's damaged. So now if things are not going to get better, so we live with it. So I think distraction. So I'm I would have, I think something that is distracting. And I think also something that we've all had the chance to experience this week actually is giving something back. It's the best therapy is actually doing something which in some way contributes to the benefit. Um, because quite often we are very sidelined, regarded as being disabled. Um, at some levels we are, but having the opportunity to contribute back that's, that would be it's been amazing working alongside Gordon, Little Joe, Josh, Catherine Martin and Katie Allen. I've learned so much from them. And in fact, the whole Pain Storm team. You'll find other editions of pain cast on the Pain Storm website, as well as information about the projects and other links to follow up. But for now, Fiona, thank you for this journey and insights into this condition that you live with. So for me, Mark Smalley, goodbye. Just before you go. Mark, what have you particularly enjoyed about the journey? Wow. The privilege of insight into hearing how it is for you and others to to live with this condition. I think it's really landed with me. How it is a hidden disability. And the other thing that has really struck me is, is how seriously and respectfully you and Gordon and Joe, the group of patient partners, are an intrinsic part of this whole research program that that as an outsider has genuinely impressed me. Well, it's been a great privilege to share the journey with you as well, Mark. Likewise. Thank you. And for me, Fiona Talkington, thanks for listening.