Episode 63 Mel Brooke: PSA & PRP-NeTT

Introduction: Our guest shares her psoriatic arthritis journey, and how it led to a think tank reshaping research. Inflammatory! with Debbie Wilson and Katy Pieris, navigating life with inflammatory arthritis.

Debbie: Hello and welcome to Inflammatory with Debbie.

Katy: and Katy.

Debbie: We’re delighted to be joined by Mel Brooke this week. Mel has been diagnosed with psoriatic arthritis and she’s the co-founder of PRP-NeTT, which is the UK Rheumatology Patient Research Partner Network and think tank. Mel, lovely to have you. How are you today?

Mel Brooke: I won’t say I’m fine because that’s we know that’s a big fear everybody says. I’ll say I am flagging a bit from last week’s heatwave I’ll be honest is more the lack of sleep you know good sleep quality sleep really catches up with you, so I feel like I’m a little bit not quite balanced to wherever my normal is again.

Debbie: No, I very much like that. And I think actually it was Sarah York on one of our previous episodes actually was highlighting the importance of sleep. And I think people just don’t realize that quality sleep that when you then don’t have it, that has such a knock-on effect.

Mel Brooke: Yeah, I find that it increases the daytime on fatigue. So, I get fatigue crushes more when I haven’t had good sleep. There’s different types of crushes. There’s the ones where all of a sudden, you just think, need to go and lie down. And I get more of those when the sleep’s been really poor. And then there’s the ordinary fatigue, which is just day stuff.

Katy: Yeah. And then it’s how do you distinguish between the two?

Mel Brooke: That’s really difficult to describe. There’s not so many words for it, it? Because, and this is why there’s that, when you say to somebody, I’ve got fatigue, everybody goes, oh, I’ve got it. And what they don’t understand is the levels of fatigue that there can be. It’s not a one thing, is it? There’s scale, there’s a massive scale and you don’t really understand that, I don’t think, until you have a condition that causes it. But you know, they mean well, so nod along.

Katy: Yeah, I think we all become quite good at that, don’t we?

Debbie: Yes, we certainly do. So, when were you diagnosed with psoriatic arthritis and just briefly, what were your symptoms?

Mel Brooke: So, sort of in a nutshell, my history with psoriatic arthritis is, I had psoriasis from a very young age. So, for many years, I didn’t really see anybody, my GP managed most of it. I got fed up with all of the horrible creams and lotions and potions and I just basically managed it. The best thing for me was when I went on holiday, I guess that’s, you know, because you’re relaxed, you get a lot more sunshine. So, the vitamin D, and all of that. So that was kind of like my biggest medicine, I suppose, for my skin for many years was sunshine and, holidays. And then I guess this is the confounding thing about psoriatic arthritis is I probably had symptoms well before I was diagnosed. So, I’d started to get some aches and pains. And then a knuckle kind of flared up and a finger swelled up. And, I thought, well, this isn’t quite right. So, I went to the GP I’ll give you a referral. So, I ended up in rheumatology and of course they put two and two together and talked about psoriatic arthritis, which I’d never heard of. And this is about, it’s over 20 years ago now, so it’s quite a long time ago. And to begin with, I think I just went into a complete, I was just completely all struck is one of the things, know, that kind of moment where you suddenly can’t picture your life because now you’ve been given this label, you know what it means. I went into denial for a bit. I didn’t want to really go down the route of all the medicines and things that they were telling me about. I found all of that overwhelming. At the time I had, my son was really young and I didn’t want to be iller than I was. I didn’t want to do anything that was going to make me iller than I was. So, I kind of reduced my visits to rheumatology for a while and then went back again later on.

Katy: How did you manage the symptoms after you were diagnosed and whilst not being seen by rheumatology?

Mel Brooke: I did have, I just had some steroid injections and things like joints drained along the way and I’ve tried various things. My, I guess this is why I was so interested in research is because the medicines that are there, they don’t suit everybody. There can be some issues with other aspects of your health that make things not suitable. And, you know, I’ve tried some things, not tried other things and just kind of like meandered my way through it. I’ve tried a lot of lifestyle interventions. I know a of people get really cross when someone says to them, have you tried turmeric? Well, I have, you know, I actually did it. Debbie (04:34)

Debbie: And did it cure you?

Mel Brooke: have a bit of a… I think lifestyle choices is the phrase I would use. There are some that can contribute towards your general wellbeing and a well chosen lifestyle. I don’t think a lot of things aren’t cures, but they do work for some people or they’ll take them through a phase. I’m not gonna say it doesn’t work because I think for some people some things do work and I have tried a lot of them and I have kept some of them along the way as well. So Mediterranean diet was one that really worked for me. three years self study of trigger foods because I wanted to figure out what triggered me. That was a bit researchy on myself, if that makes sense.

Katy: That’s really interesting because it’s quite, I think that can be quite hard to actually do yourself and to work out what are the triggers and actually to stick to that. So how did you, how did you stick to that?

Mel Brooke: This isn’t for everyone because it’s a bit probably too much, but I just diarized everything. I mapped all of the symptoms according to my own baselines and my own peaks and troughs. And I took things out of the diet. I kind of basically went vegan, completely vegan for a while and then I did back in because

Katy: That’s probably a good way to do it, isn’t it? like strip it back and then add in.

Mel Brooke: Exactly that. was a bit sort of, like I said, it was researchy in the process that I did it. I’d fall off the wagon every now and again and, you know, sort of have a week.

Katy: Yep. Everyone’s human.

Mel Brooke: Yeah, exactly. So, I wasn’t too hard on it, but I did notice patterns over time that told me certain things that didn’t agree with me. and I was better for leaving them out, but I would say having gone to, what for me was quite different to be vegan because I’d grown up eating a wide diet. It’s like I said, I’ve morphed back towards a Mediterranean diet that suits me, but it’s very personal. All of these things, know, medicines are very personal, how they affect you are very personal. And this is why I am interested and involved in research because I think a one size doesn’t fit all, a drug that works for one person doesn’t work for another. And so I’m still interested in contributing to those discussions to try and help make a better future for people later on.

Debbie: Yeah, I completely agree because it feels like medication is a trial and error. there’s no guarantees with anything in life. And if there’s anything we can do to take away that trial and error would be amazing. But going back to diet though, and as you say, people do try things and some people go, no, don’t. But I think when you have these diagnoses, sometimes you will try anything because sometimes it does work for people and it might not work for everyone, but if you don’t try it, you won’t know. Obviously, we’re not advocating for people to come up with their medications, but I think this goes back to Jamie’s episode last week. Think about yourself as a human, and actually looking after all of yourself And I suppose then for you, Mel, you were then diagnosed with fibromyalgia on top of that. And then how do you navigate that?

Mel Brooke: Yeah. I’m still learning to navigate it because this has only been a recent thing for me about two years since I got the diagnosis. I think probably it had again been creeping in to the to picture muddying the waters, but it wasn’t until I was starting to get some really bad fatigue crushing and different things happening, pains that I didn’t recognise that I went and I said to my consultant, you know, I’ve got this going on and I’m wondering if and so she does, you know, the checks and said,I think you’ve got, but like you said, there’s no, there’s not a good treatment for that at the moment is managing it. So yeah, I just, guess I muddle through, which is probably like a lot of people, you muddle through with what you have available to you and what works for you and what doesn’t work for you. I, one of the things I’ve really learned is how different that can be for different people and how I’ve never wanted to influence people to make my choices and I’ve always respected other people’s choices. some people don’t have, the interest or the energy or feel the confidence to make decisions for themselves. And this is why the shared decision making is so important. I mean, I’ve always kept my rheumatology team up to date with all of the things that I’m trying because I obviously want to make sure that I’m not going to do myself any harms.

Debbie: Of course.

Mel Brooke: So, you know, one of the things I learned about, say for instance, turmeric, which is the one everybody quotes, it can be really good, but it also can have blood thinning impact. So, you’ve got to be really careful. you’re on things like warfarin or blood thinners, you know, you’re best to check these things with your rheumatology team because then they can counsel you as to whether or not it’s going to clash. The belief is yours and I’m very much an I’ll believe it when I see it type person. So, it’s not that I want them to tell me not to do it just because they don’t believe in it. I want to find that out for myself. I want to know if I might put myself at risk. So, I take those kinds of approaches to what I was calling my lifestyle, you know, adaptation.

Katy: Yeah.

Debbie: How do you then differentiate between what is fibromyalgia and what is psoriatic arthritis?

Mel Brooke: Kind of with difficulty.

Debbie: It’s not just me, that’s good.

Mel Brooke: I’ve learned this from other people as well. I mean, work with people because of the work that I’ve done. I’ve worked with different groups of, you know, cohorts, you like, patient groups with different diseases. And I’ve seen commonalities across all of them. And I’ve worked with quite a lot of people with fibromyalgia as a primary diagnosis. So they don’t necessarily have anything else like an arthritis. And it’s a real struggle. It’s a real struggle for them. And I’ve always felt quite empathetic towards them because a lot of people felt that they wouldn’t be listened to, that nobody really kind of believes them. Bit like, do you remember them? They used to call it the yuppie flu, the ME. sometimes people with fibromyalgia feel that, but it’s very real. there’s been…

Katy: yeah.

Mel Brooke: less understanding about that as a disease. I think we’re starting to see more now about whether or not it is connected to things like neuroinflammation or you know that’s why it comes with inflammatory diseases quite commonly as a comorbidity like I’ve had diagnosed so there’s still a lot to be explored but in terms of actually identifying what’s my PSA and what’s my fibro, do you what, it’s not easy.

Debbie: No, it’s really not. So then when did you get into the research side? Because I think that’s fascinating. And then we’ll go talking to more about what PRP net is.

Mel Brooke: Okay, so I had a job working with a clinical research organization and I really enjoyed that work. And this isn’t just rheumatology; this is across all different diseases. It’s runs clinical trials for pharmaceutical companies when they’re developing new drugs. I learned, know, within that job, I’d learn all about, clinical trials from concepts through to like…marketing when it was able for the medications to go out to people on a broader scale. So, I, I learned a lot and I, I enjoyed the work. I enjoyed the science side of it. one of my favourite parts of that job was always when we would have what we called a kick-off meeting, which was when we first got down to sit down with the whole clinical team and learn about, what the disease was, the drug was, you know, what the trial was trying to achieve. So, I guess I have that in my background. And then when I later on, had, you know, career changes like we all do. And I became a patient. I had a conversation with, I think it was probably Professor at the time in Bath. And he kind of clocked that I had this clinical background and said, will you come and, do this with us? And I was, I just not long started running peer support group with a few other people. So, it fitted and I thought, yeah, I’ve this background. I can take that into research. And that’s where it all started. And then I just did more and more of it. you become familiar with the processes. So, you’re easy to integrate into other studies and it just rolls on. But I always felt like I was being able to use my background and my disease to do something positive.

Katy: No, that’s really good.

Debbie: So, what was your first research project that you were involved in as a patient? A role reversal here for you.

Mel Brooke: I knew you’d asked this and I thought, I really haven’t stopped to take proper stock of what I’ve done over the years. I’ve just gone, I’ve just moved forward and taken other things on. So, I had to look back, and I thought one of the first sort of significant things that I did, I think, was I was invited. so was very fortunate to be in that environment. And I got involved with an initiative that was run by Grappa. They are the international body research group for psoriasis and psoriatic arthritis, working with patient reported outcome measures.

Debbie: Okay.

Mel Brooke: So yeah, that was one of the first things I got involved with. We were only like one part of a group that was part of lots of other groups that were connected to try and identify what actually matters to patients. And I remember that one of the most important things that kind of came out of that was this identifying that fatigue was a big burden. It hadn’t really been recognized at that point, you know, the…joints get measured, the swellings get measured, but actually the fatigue’s just as debilitating. And I think that just started the whole journey for me was getting involved and realizing that when you have input into these things, you can actually make a difference because that got taken on board and that is now part of know, patient report.

Katy: wow, that’s really good.

Debbie: amazing because then as a patient, think sometimes you feel like you’re going to get involved in research, but actually what impact do you make? But straight away you saw that impact that you’re doing.

Katy: That’s really good. So just to clarify, Grappa is group for research and assessment of psoriasis and psoriatic arthritis. that rolls off the tongue.

Mel Brooke: one of those mouth full isn’t it?

Katy: So how did that then lead sort of throughout the time to you then setting up PRP-NeTT?

Mel Brooke: So if I speed through a little bit, so I got more and more involved in patient research and obviously I’m doing the advocacy stuff on the other side, which actually, that started out as raising awareness because not many people seem to know what psoriatic arthritis was or the risk of developing it if you had psoriasis. And that’s changed a lot in that kind of couple of decades that I’ve been working on support in this field. a couple of years ago, having done a lot of patient involvement, it kind of struck me that talking to other people, because I’ve met more people and others from around the country, UK mainly, we’re all having these different experiences and some are good and some are bad. I just thought, you know, I thought, what’s the real feeling here? Because in the UK, although there are standards for patient involvement they’re driven by the NIHR.

Katy: I see. Yeah.

Mel Brooke: And you learn places that I thought, what’s the real experience for us as patient partners? So, I did a survey. decided to do a survey and I sent it out through, my networks, clinicians, patient groups, my own advocacy sites and collected some data about how people were really experiencing being involved as a patient partner. when it came back, it showed some real trends and, I think there was seven key areas where it kind of showed a lot of commonality, some good, some not so good. So I decided to disseminate this back to the patient partners, but I also wanted the message to get across to clinicians that this could be done so much better because there’s really good practices there and some not so good practices there. So if you can like take our experiences and maybe we can somehow share this, you know, perhaps we’ll all end up with a better experience of being involved. And that’s where PRP-NeTT started. I talked to a couple of other really experienced patient research partners, said, hey, shall we do this? What do you think about doing that? Shall we be a think tank? You know, let’s use our experience to try and improve this process and also bring more people on board. Because it’s a small world and you tend to see the same faces and we really need all of the voices. We don’t… just need to hear from the same people all the time. So that started this whole idea of think tanks, mentorship, in a small way, sharing our experience for the greater good, I suppose.

Katy: And how’s it been going in terms of getting new people involved and how’d you go about doing that?

Mel Brooke: So, we have a sub stack which we write, we post pieces on that are sharing experiences and thoughts and reflections. And we don’t really recruit people to be part of the group, but they can come and read the sub stack. And if they want to comment, they can. If they just want to read it, take that back, reflect on it or take it to their research teams, that’s fine. So, we’re not really looking to like grow it as a group, we’re just putting it out there as a platform of information. And then if, if anybody wants to talk to us, they can get in touch with us and ask us, they can ask us to come along and help mentor other situations. So, it’s still evolving. I mean, it’s what now is it’s not quite a year. I think it’s probably a year next month when the platform, that platform’s been up. So, it’s still quite new.

Debbie: Yeah, well, hopefully this will help everything will be on our show notes. Yes, please you go and have a read of everything that’s on that website.

Katy: And I just wondered as well, because you do a lot of advocacy and patient sort of support groups, how do you kind of link the two together? How do those two worlds kind of cross over if they do?

Mel Brooke: They do a little bit, mean, again, the advocacy starts out as supportive people. I mean, honestly, it’s one of the best medicines talking about treatments, know, peer support is one of the best treatments I’ve ever had. And I think probably works for a lot of other people because it normalizes your experience. But I don’t, you know, the people that I peer support know that I do research and if they’re interested, come across to it. And if they’re not, it’s not their thing. don’t do. I don’t see the two things as they have to be completely aligned, they can both be linked.

Katy: Yep, sit separately, but sometimes link.

Debbie: Has there been a research project that you’ve just been so excited about and that you could then see the impact that that could have on sort day-to-day lives for people living with inflammatory arthritis?

Mel Brooke: I think I think I get excited about all of them to be honest, I think it’d be really difficult to just pick on one because I see the potential in all of them and I see that the ability to bring more potential to it hopefully through the interaction that I have with the team and I’ve been really lucky that I’ve worked with some really good teams along the way.

Debbie: Yeah, but do you find sometimes that patient research partners are sometimes seen as just a tick box exercise?

Mel Brooke: Yes, I think for some people it does. And again, I think this varies from location to location. I don’t think I have ever felt like a tick box. I think I’ve been very fortunate. But when I did the survey and I could see that there was still a lot of people who did feel like that, I felt like I could do more to maybe help bridge gap.

Katy: And do you think it’s sometimes maybe the patients not understanding their full involvement? Does there need to be more in terms of that pre-explanation and also making sure they’re aware of the impact of the research they’ve been involved in?

Mel Brooke: Definitely, I think it’s giving people confidence to be in those situations. And I don’t think there’s enough mentoring of people who’ve been in it longer, helping the people who would be curious, but aren’t confident enough to come in. I think there’s lots of guidelines out there, but I don’t think any one place is using the same one. So, it’s all a bit disconnected that way. And I don’t want to rewrite the guidelines, but it would be good if we could share where those resources are so that people could implement the best practices and then they do end up making people feel like a tick box. Some of it is to do with how to bring people into research, just sort of being nice to them, it’s like bring them into a new job, orientating them to the environment, maybe helping them with a basic glossary of terms. Because it’s like we’ve heard you say, know, so many acronyms fly around. When researchers start chatting, they get excited, obviously. And then as a patient, you think, what’s going on here? I don’t understand that. I don’t understand that. But you’re not comfortable. Yeah.

Debbie: Yes.

Katy: Yeah. And then people don’t feel like they belong if they don’t know, if they don’t feel that they understand what’s happening. Yeah.

Mel Brooke: they don’t come back. Laying the groundwork for good involvement is about bringing someone in and maybe even starting them before they’re on a project, know, maybe just orientating them, letting them sit in on something where they don’t have to have, they’re not expected to have much of an active role. That gentle mentoring, you know, and I think that would be a really good practice to see more of.

Debbie: No, completely. And I think it’s also realising that there’s different ways that patients can be part of research. Being a research partner is different to doing, say, filling out a survey or to having your blood taken for a different research project. It’s been there from that beginning and it’s discussing the research question. So, it is just having these conversations and to say that you’re a partner, you’re as equal as everyone else in the room.

Mel Brooke: Absolutely.

Katy: And yeah, and if anyone’s listening and they want to get involved more in research, how would they actually go about it? Cause that’s something I always think, how do people actually end up on in research? Because unless you’re invited, it doesn’t look like it’s open.

Mel Brooke: Yeah, you’re right. And there are different ways and different locations probably have more of some of those ways than others. I think I put a kind of a guide to how to get involved in research on my website. One of the most obvious ways is to ask your clinicians, your team, is there any research involvement that I can get involved in? And I think Debbie, going back to something you said, a lot of patients think research is about signing up to be part of a clinical trial and it’s not. There’s two sort of research involvement aspects or multiple ones if you like, where yes, there are the clinical trials that you can sign up for. We’re talking about involvement where you’re getting involved in the discussions about new treatments and things that aren’t yet rolled out. So you can ask at your maybe a local university, sometimes have a research department. You like I said, you can ask any of your rheumatology team. are various websites that will advertise recruitment or opportunities for involvement. some of the charities, they will have segments on their websites that say here’s, know, we’re looking for these patients. Do you want to get involved in this? And you can sign up and register your interest. There’s lots of things that you can do.

Debbie: We do actually have a research page on our website as well. All those links will be on there as well for people to go and have a look at because from everyone that we’ve spoken to, everyone’s journey with inflammatory arthritis is so different and so personalized. everyone’s voice is as equal as anyone else’s. And you know, if your voice can be in any way, this is one way it can really be heard and do you feel that you’ve had this impact, Mel.

Mel Brooke: I’d like to think that I’ve helped have that impact. What I’ve done is because of the, the peer support, the advocacy staff, I always try and take patient voices with me in the situation and try and point out the things that maybe would have got overlooked that I’ve heard trending, if you like, within, patient conversations, because, and this is why it’s so important that we get more people involved in research because things get missed and sometimes things are not so well understood or they’re not considered to be a problem but actually they are and bring that into the room it just might mean that something can get done about it.

Debbie: Absolutely fascinating, Mel. So yeah, everything that Mel’s spoken about will be on our show notes and it’ll be on our research page as well on the website. But thank you, Mel. It’s been really, really insightful. And I just think if there’s anything that, you know, that we can do to try and disseminate some of these research results as well, because sometimes I think that often gets missed from pages that been involved. How do we disseminate those as well?

Mel Brooke: Yes.

Debbie: And that is a really important part because if patients have given up their time and their energy to be involved in any part of research, whether it’s just even just filling out a form, we want to know what that impact has been and what changes are happening. So, yeah, I think now we can definitely work together to try and help that dissemination side.

Mel Brooke: Yeah, that’s.

Debbie: Thank you so much again for giving up your time today. Please do sign up to our newsletter. We are at inflammatoryarthritis.org. Follow us on social media. We’re on Facebook, Instagram, LinkedIn and Blue Sky. And you can watch these episodes on YouTube, and you can subscribe and follow to the channel. But we’ve only got a few more weeks left until we’re having the summer break. But Katy until next week, it’s goodbye.

Katy: Goodbye.

Mel Brooke joins Debbie and Katy to share her decades‑long journey with psoriasis, psoriatic arthritis, and later fibromyalgia and how lived experience led her into clinical research and ultimately to co‑founding PRP-NeTT, the UK Rheumatology Patient Research Partner Network and think tank.

She discusses fatigue in all its forms, lifestyle experimentation, the complexity of comorbidities, and why patient voices must shape research. Mel explains how PRP-NeTT emerged from a national survey revealing gaps in patient involvement, and how mentoring, orientation, and shared decision‑making can transform research culture.

Key Topics

• The impact of poor sleep and the different “types” of fatigue
• Early psoriasis, psoriatic arthritis diagnosis, and navigating denial
• Lifestyle interventions: Mediterranean diet, vegan reset, symptom diaries, trigger mapping
• Fibromyalgia as a comorbidity and the difficulty of distinguishing symptoms
• Shared decision‑making and safe experimentation (e.g., turmeric and blood‑thinning interactions)
• Mel’s transition from clinical research professional to patient research partner
• GRAPPA’s work on patient‑reported outcomes and recognising fatigue as a major burden
• The creation of PRP-Nett: survey findings, think‑tank model, mentoring, and improving patient involvement
• The importance of disseminating research results back to patients
• How people can get involved in research beyond clinical trials

Keywords

psoriatic arthritis, psoriasis, fatigue crushes, sleep quality, fibromyalgia, neuroinflammation, lifestyle interventions, Mediterranean diet, trigger foods, symptom diary, shared decision‑making, patient research partner, GRAPPA, patient‑reported outcomes, PRP-NeTT, advocacy, peer support, rheumatology research, NIHR standards, mentoring, research involvement pathways

Resources Mentioned

• PRP-neTT (UK Rheumatology Patient Research Partner Network) Think tank, mentoring, and reflections on patient involvement https://prpnettt.substack.com/
• PsA HQ website ‘Guide to becoming a PRP’   and ”Onboarding PRPs: A Simplified Guide for Research Teams” https://psazzgroup.wixsite.com/psa-hq
• GRAPPA: Group for Research and Assessment of Psoriasis and Psoriatic Arthritis International research body working on patient‑reported outcomes https://www.grappanetwork.org/
• GRAPPA research project Patient outcome measures  
• NIHR:UK standards for patient involvement in research https://www.nihr.ac.uk/
• Inflammatory Arthritis UK: Research page for involvement opportunities https://inflammatoryarthritis.org/research/

Connect with Mel: Instagram: @PSA_HQ

Connect with IAUK

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Disclaimer: Debbie and Katy are not medical professionals. They share personal experiences of living with IA to build connection and community. The podcast is for informational purposes only and is not intended to replace professional medical advice. We talk about our personal health journeys, and the podcast is not intended to provide professional medical advice, diagnosis, or treatment. We are not medical professionals and in no way claim to be medically trained. The podcast does not take responsibility for any losses, damages, or liabilities that may arise from the use of the podcast. The podcast does not assume responsibility for the accuracy of third-party content. For more information, head to https://inflammatoryarthritis.org/