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So good evening to. Well, good evening to those of you that are in the UK and good day to everybody else or good night, depending on where you are in the world. My name is Michaela Nuttall. I'm a cardiovascular nurse and founder here at Lone with nurses and this is one of our in conversation sessions, which means we get to just sit and have bit of a chat and a bit of discussion. So you're gonna hear um more from Beth and Lucy who has already delivered a session for us um last year now around. Well, they're going to tell you what it's all about to do with fibromyalgia but really digging through data that sits out there and doing some mining and looking for it to really see one of the trends and insights that are happening there are, but we will still be asking you at the end to do your evaluations and to give us your feedback because of course, that is really important for us and there will be time for questions, but please do use that chat function for us. Let us know where you're from, what your role is. And what your interest in fibromyalgia is. I suspect, um, well given, I know that, you know, this is nurses and we have lots of nurses. Most nurses are women and the way that fibro works, I suspect people are here for professional and personal reasons. Um, so I think people will get out a lot of it and I certainly know that a lot of my friends and family, um, have fibro. So, yeah. So I'm going to um pass it over to you. Now, Beth, I'll sit, I, I'll sit on mute for a while. Um And I'll hand it over to you to Beth and Lucy to take it from here. So, thank you. Thank you. Thanks Michaela. Um Good evening, everybody. So I'm Beth, I'm the operations director at White Swan and we're a registered UK charity. Um We got set up in 2018 as a charity as an offshoot of a commercial organization called Black Swan Data and Black Swan have access to a lot of social media conversations. So, Reddit Twitter, um lots of blogs and forums like health unlocked, um mum's net and so on and they use it in a commercial way to predict trends in consumer behavior. So looking at what the next flavor of tea might be, you know, to be trending and so on and help companies to innovate products. But through doing that work, have access to all of this online conversation about, you know, any topic and sadly, the CEO of Black Swan's sister, he's called Steve, his sister's called Julie. She'd been undiagnosed for about 10 years and sadly, kind of living life in a wheelchair, unable to look after her Children. And just at a loss of, you know, couldn't find out what was the root cause of this. And she and so Steve thought, well, there might be information out there that can help find some answers for Julie. So a long story short of trawled through all of the conversation relating to the symptoms that Julie was experiencing and drilled down and came across two diagnoses that they hadn't considered before, take them back to her doctor. And it turned out she had a rare form of Parkinson's Parkinson's Dystonia. So using that social conversation, they were able to get her on the right treatment. And five years later, she's now doing crossfit living a normal life looking after her kids again, so completely transformative for them as a family. But the theory at that point was, well, if we've been able to use that data to help Julie, we might be able to help other people as well. So that was when White Swan was born with a view and a mission, the charitable mission is to just use technology and analytics to improve health and well being of society. So from that point forward, we've been using that same sort of social media conversation. So all of those same forums um to answer lots of different questions about patients experience. So, we've worked with Royal Marsden Hospital, lots of different points within the NHS and um charities as well. Um doing projects either around accelerating diagnosis or understanding treatment, understanding um symptoms better, lots of different questions and sort of drawing out that patient voice from all of that conversation. And um and so the fibro project came around because we've been working on a different project with rheumatologists around ankylosing spondylitis. Um looking in that case at earlier detection. So, um you know, that's something that is often dismissed as back pain for a very long time and people can take up to 10 years to get a diagnosis for a closing spondylitis. And so we were looking at the really early onset symptoms to see whether we could create more awareness of what to look for. And through that, we're introduced to a rheumatologist and Nish Kon, who's a research fellow as well at Oxford and knowing what White Swan was good at in helping to uncover patient experiences. She asked us to conduct some research into her area of focus, which is fibromyalgia. Um And one of the issues she was finding is that it was difficult to get a really broad spectrum of patients who were willing or able to come along to patient focus groups. So she had her core few patients that would always turn up, always be engaged, but she just didn't feel like she was getting a sort of broad spectrum and perhaps finding things that, you know, weren't coming through from a small group of patients that, you know, she talked to a lot. And so the scope of the project for us was quite broad. She didn't really know what she was missing. So she wanted to understand what was being talked about right through the patient journey from, you know, diagnosis, treatment, what sort of health care settings, you know, and what people's experience were of those. So the project then would allow her to look at where issues were arising in that sort of broader patient conversation and make sure her areas of research and her research focus was focusing on those priorities for a broader set of patients, not just the few that were coming to her, to her group. So that's how the project came about. That's why White Swan, we're in a good position to work on it. Um And I'm gonna hand over to Lucy who worked on the analysis with um some of our volunteer team. Um and um to talk through some of the details. Thanks Beth. Hi. So the analysis was conducted on um 714,000 social conversations. And within that, we sort of surface findings to help confirm what patients are experiencing and also develop recommendations to help improve care and education about the condition. Um So as I think many of you may know the main symptom of fiber is widespread chronic pain. Um and the other symptoms which we also covered in the report were fatigue. Um not quite a symptom or can be understood to be a symptom. Um but noticeable impacts to mental health. Um odd and confusing physical sensation. So, um that would be, you know, symptoms such as numbness or tingling, disrupted cognitive processes and also heightened sensitivities. So, when it comes to interpreting and communicating these insights, we sort of see the possibilities to improve care from a very in depth understanding of patient views. And then we work with people such as yourselves, which at its simplest, it can mean just sharing this information with you to see how those insights should be applied. Um Because of course, our expertise is not centered around directly caring for and helping patients like, you know, others often yourselves, often come, your experience often can be. Um so we have many insights in the project, but today we're going to cover four areas. So we have um self management education personalization and then we also have um communication, guidance and ideal healthcare settings. So the first area is the self management, education and personalization. So, understanding the physiological physical reasons why patients are experiencing pain are the symptoms and how the symptoms interrelate is often unknown. And because of this treatment plans are more difficult to personalize, but we did find ways that you can, you know, refine care for patients. Um So for patients, they suffer from these symptom flares and they can be helped by identifying the cause of the flares and help to manage the flares. Um So, first and simple step to do this is raising awareness of what causes them. Um Some of the main things that cause fibro flares are that came up in the research was anxiety, um which is likely to be aggravated by stressful situations. Also food and drink can. Um as Beth mentioned, Nika, the cli we work with from her group of people when we would assume may have severe symptoms. Um They're actually she did say to us like none, none of the people I talk to are able to drink alcohol at all. For example, it just makes them immediately turn well and then there's also weather and temperature which is very difficult to avoid. A patients are living living in triggering climates. Um They found that patients can prevent more of their flares if healthcare professionals provide strategies to combat these triggers. Um you know, some are more difficult than others. Um dietary recommendations including knees like intolerances. Um may not always be possible in the healthcare setting but just simple things like assuring patients that as long as they get a high enough nutrient value from their food, avoiding foods they don't like and ones that cause notable symptoms, whether it's directly, you know, associated with their fibro or gastrointestinal issues, for example, may be a sensible measure to helping them reduce, you know, reduce those flares. Um So we thought we'd take you through just some of the foods that patients are talking about online that cause these flares and keeping in mind that people will naturally eat more carbs and vegetables, for example. So they're more likely to talk about, you know, carbs because they eat more of it and also that they are more likely to try and remove well known problem foods. So we're all used to seeing, you know, plant based milks and gluten free, you know, things in our products in our supermarket, at least in the UK. And people are more likely to, you know, try removing those from their diet than they are the lesser known ones. So we analyzed what food types patients were talking about in relation to the flares and um they came up in the following volume. So the most discussed was gluten wheat. Then we had a sugars, dairy and lactose, um carbs and keto, um alcohols, caffeine fodmaps, processed foods, histamines, uh soy, artificial sweeteners, meat and night shades and healthy fats and oxalates. So I'd never heard of histamines, wines and cheese. I'd never heard of Night shades, which tomato and potatoes and I had never heard of leafy greens. So Beth had because she's a keen gardener. Um but that was, you know, that was brand new kind of insight and information. Um Michaela. Do you have any sort of immediate thoughts on the flares and dietary advice. Anything you'd like to jump in with? Yeah. So, I was just thinking, first of all the list of foods that you were saying that and I was scribbling them down quite frantically. The list of foods that people are talking about suggest that they, the, that they're labeling things as histamines night shades that they've already done a bit of work themselves to try and explore that they're not talking about peppers and, you know, they're really categorizing them into those into groups that can be really, quite troublesome for people both with and without fibro, but with them, with those sensitivities that are there. Um, and flare ups, they're, they're, they're unfortunately really common and probably more common than people think in, in a variety of different conditions and, and I think what becomes challenging for people, isn't it? Is that, um, that you might have something that you really enjoy or you really like and you always choose it knowing that it's going to give you a flare up as well. Um, so I think that's a tricky one and, and, and actually I just in the chat, Jay's just put, and I don't think most people would refer to tomato as a night shade in everyday language. So, I think you're already collecting information from a sort of quite a, they're from quite a, um, a lived experience, you know, as quite an expert lived experience that's there. Um, yeah, then the anxiety and stress, that's a really big trigger for lots of people, which you know, which also I suspect given that you and I might have when you were female of the conversations that you were, that you had. So that, you know, we know this cycle that goes around with women, going to the doctors. I don't feel very well and it's worse when I get a bit stressed. You know, that you can almost imagine the the real challenges and it gets worse when I eat certain foods you can imagine over the years, you become quite, they're back again and it's, you know, complaining about being tired and complaining about feeling bloated and complaining about this, that it is really difficult. Was there? Um Sorry, I'm gonna ask you some questions now. So when they were saying that they wanted strategies from um from, from health care professionals, did you, did you find any positive strategies that they came up with or was it just the fact that they wanted more strategies from the healthcare professionals? Um It was, yeah, it was more that they wanted um want the strategy. So we answer that kind of question in a number of ways. So we can look at how people are speaking about things and you can hear that many people, you know, they're quite desperate for, you know, anything that can help their situation. And then if we're not seeing that that need is being met, um, from the people that are talking about it then, um, then we kind of ascertain, well, actually, if strategies were implemented for this, then that could be beneficial for, for patients. Um, I don't, I don't think we saw a lot around it but that may, that may be partly because people would be talking about maybe visiting a dietician or nutritionist. I always get those, um, they maybe separately to talking about their fibro. Um, yeah, and, and sometimes I guess what, what might happen if people just say you've got fibro full stop, you know, fibro, that's it. And then you just got to, you've got your diagnosis. Now you carry on with trying to manage it yourself and that's where you can, you can find. And I just looking in the chat again, jas, you said it could be when we talk about the anxiety, bit of chicken and egg. If you know that something is going to make your symptoms worse, you can get yourself into a bit of a cycle, um, which is very difficult to, to get out of when you think. Oh, it's gonna make, this is I'm going to do something that's probably going to make my symptoms worse and you know, you can imagine it happening type thing. Thank you for letting me talk. Ok. Um So a few of the other areas that significantly impact the overall general health as well. So as you were saying, Michaela, you can get in these quite destructive cycles. And another way patients can self manage is by trying to improve this general strength and vitality. Um The main issue is when patients do try to exercise and we do find, you know, people do try to exercise to try and go out on more walks, that type of thing and try and lose weight. The pain is very restrictive and the flares are very restrictive. Um So, one of the insights from that was, you know, strategies to reduce pain before in and after exercise would benefit them as long as with weight loss strategies, particularly weight loss, you know, everybody says how wonderful it is for you. It, it's just going to be good for your body. It can improve your mental, mental wellbeing, it can reduce pressure on your joints. Um but it is very difficult for people to do and um to reiterate one of the incidents was they do, we need to reiterate that people do need support. It's not an easy thing. Um when you're, you know, suffering with something like fibro and then, then there's also fatigue. So this is another one of those, you know, cycles that people can get trapped in. Um So you may have seen and read the people talking about an overlap between chronic fatigue and fibro and the big thing about fatigue and fibro is that fatigue and flares can become a really bad cycle of flare, lack of rest like poor health flare, lack of rest, poor health. Um And I think the other insight was that, that came from, that was that self management or fatigue could improve if professionals show patients ways to improve sleep hygiene and prescribe appropriate strategies and treatments to help patients get proper rest. So that's not to say that some, in some cases, patients aren't getting that from people already um from their, you know, their the health care professionals who they talk to already. Um It's just to say that there's a clear need that there's a clear need there to just pull them out of these very disruptive sleep cycles. And there are a couple of different groups of patients under that. Um So you've got those who are like insomniac, so they'll stay up won't be able to sleep till sort of, you know, 1 to 4 in the morning and then you've got people who can sleep but they never wake up rested. Um So you've got a couple of different needs there from people. And I know from when we talked to her, she said they're doing more work at the moment on the side of the people who are sleeping, but they're not rested because that's, that's where things seem strange. Like if you don't sleep, then it's going to affect your health or don't have a proper, you know, sleeping pattern and everything. It may, I said it's going to, it may affect your health. Um Yeah, so Michaela, thoughts, thoughts on those. So, and I'll start with the, I'll start with the pain and the, and the, I'll start with the pain and I'll move in and I think you, you probably hit the nail right on the head with a lot of it was saying what they needed support and probably for support if you need to be believed. And I think that's a big part of this. And I think what it's doing is highlighting a massive gap in the services that we have for people with fibromyalgia and other sort of similar, you mentioned chronic fatigue and I'm a charity of Pot UK. So these ongoing life altering conditions that very few healthcare professionals know about and, and if they do know they have sort of like a very small view of what you should look like or because they know somebody with something that's a bit like that and, and that's what everyone looks like. And I think what you've just shown is there's, there's complete variability in symptoms and everyone's gonna have different ones. Um The exercise one is really difficult. I would suggest really difficult. And I know that when, when we talk about exercise in the context of pots, then it's very low and slow, very low. And actually, you're going to, particularly in women, you're going to feel worse for about the first six weeks before you even start to feel better. Now, if you are juggling, trying to, if you're trying to work, you've got kids. How can you do something where you're going to make yourself feel worse? So, people will avoid that to try and that avoidance thinking I'm not going to, um, I'm not gonna do something that's gonna make me feel worse. Can be really difficult. The fatigue and the sleep, I, you know, I met lots of different people, patients, friends and who sleep in exactly those ways. So a lovely lady helps us. She sometimes she doesn't go to bed at all. Sometimes she goes to bed at five o'clock in the morning. Um just because she's, she's just wired and awake and that's, and that's just the way it goes. So she was the first person you mentioned about the sleep bit and then um somebody else I know quite dear to me, um can sleep for 14 hours, 16 hours and wake up and feel just as rough as when they went to bed and almost going to bed knowing that you're going to wake up really worn out is I think a real challenge. So that, that goes back to that to starting point is being believed, there's very little services for sleep clinics out there. And even when there is, it's on waits, it's difficult to access. So I think again, what you highlighting on this is the complexity of this sort of multifaceted condition and that there just isn't enough support out there because it, and you can't see it. It's the invisible illness side of things, isn't it? That makes it even more complex that's there. And I suspect, you know, the impact it has on people's lives, whether it's just doing things they might enjoy or things they don't enjoy. Like, the laundry will be massively impacted knowing that these things are, are going to make a difference. We've got a question from Kathleen. Um, and I, I don't know if it's time to pop this one in, but um she wants to know how much do GPS et cetera may just diagnose this because they don't investigate other avenues. I'm not sure that's something you've looked at at all. Um We, we, we reference it um slightly later on because we go, I think in the next sections, we'll talk about communication, guidance and mental health and everything and that is definitely, yeah, that's definitely a big issue like fear of not being believed, you know, meant to have stigma is a week. Yeah. So if I are going to the next section, so this is the communication guidance and ideal healthcare setting. So as you said, you know, it's very the diagnosis journey is not easy, there's no definitive test. So you've got no, you know, easy option, I say easy option, but there's no um you know, step one, step two, step three for this type of for this type of condition. Um There is discussion around if mental health issues are a symptom or even a cause of fibromyalgia. So I think what we saw in the research was that patients experience worsens their mental health. But talking about mental health with patients is one of the biggest challenges that professionals will face. And it's not to say that um professionals are are not, you know, part of a part of this issue. It's just saying the whole, the whole area is a complete challenge. Um you know, it is a complete challenge, a very, very big challenge. So patients do worry about talking to healthcare professionals. Um they are scared that health professionals won't believe them when they describe their symptoms and their experiences. And of course, if you're a patient in that situation, that isn't patients feeling that way, you know, it isn't going to help in delivering impactful experiences at health care appointments and positive outcomes for care. And it puts both patients and healthcare professionals into potentially very stressful and you know, disruptive situation because you can imagine people if they've been to 56 appointments, they're feeling worse, they might start screaming and shouting, they might start throwing something at like the worst end. Um So it's very, it's, I think it's a lot, a lot to expect um for these, you know, healthcare appointments to go smoothly um with this kind of, you know, background to things. Um So part of being scared that they won't be believed is this fear of being almost accused of lying because they have a mental health issue. So the stigma around mental health is really prevalent when talking to fibro patients. Um it is not just about how they're feeling about their mental health, it's the fear of how they're going to be treated if they have a mental health issue. Um So explain to patients that negative experiences do impact their mental health, that mental health can be hurt um in a different way to an arm and a leg can be hurt may be beneficial. And we think we do think it's like to help patients if you're the right person to talk to, about, talk to them about it um to help them learn how to care for their mental health and to help them be aware that mental health can go up and down and sometimes they would need to care for it if they've fallen over, for example. Um So when we're looking at the data, we see the issues and we see um positive experiences as well and those two things come together to kind of create these kind of um recommendations which can be formed into guidelines. And so that's what we've done here. We've seen the issues there and thought, ok, well, what's what way can you speak to people about mental health when it's such a terrifying topic for people, you know, to talk about in a healthcare setting. And that seems to be you know, one of the ways um that that could be achieved. Um The understanding could also help them to feel less isolated by the illness and, you know, discover ways of encouraging their own good mental health. Um Another factor is their interpersonal relationships. We're saying the worry about the stigma of mental health. Um What people think about it, um educational materials designed to educate, you know, family and friends can help um and doing that, it will also help to improve patients with general anxiety and feelings of isolation, which then also contribute to, you know, flares. Um And in summary of what they want from their healthcare professionals is for them to be in, you know, for the setting and for their manner to be calm and welcoming, to validate the choices and experiences. Um to confirm that fibromyalgia is a real condition that they can suffer from. Um And I think coming back to the question you had earlier, Michaela, um it is looking at being very, being frank about the complexities of diagnosing a condition like fiber from the start. Um So instead of if, if a patient show symptoms of fibromyalgia, um there may be the likelihood that it could be found out later that they have um you know, they have something else but with it not being diagnosable in like a 12345 step. Um just honesty and transparency about the difficulty of diagnosing, you know, it seems like it could be an answer to those difficult situations where people may sometimes be just given a diagnosis, diagnosis by a doctor or they just, or they feel that way because there isn't enough explanation and background and then when they go and Google it, they may see articles about. Is it real, real condition or not? Um, yeah. So it's uh um, it'd be great to get your thoughts on all of that Michaela. Yeah, thank you. And um, I certainly because I, I'm not sure about that whole, how long it, that diagnosis that in primary care and how long it takes. Um And certainly if I think about it when you're talking about chronic fatigue, then we know that many patients with chronic fatigue have pots as well and we know that many patients with pots have fibromyalgia and then, and, and many of the symptoms that are presenting are, are very similar and then you've got the hypermobility, the down loss that often sits alongside it as well and it is part of the fibro spectrum. So I think it's almost for me, it's, it's not just saying, go with you because they didn't for the back to the question from Kathleen saying, do GPS just diagnose it and not go to other avenues. It's almost like you, once you start to get one of these sort of diagnoses, you start to gather them, they tend not to sit alone and you suddenly, you know, you find, oh, and I've got another one and another one and then, you know, you find those sensitivities might be because of mast cell or, you know, and, and you stop, they, they start to cluster together. So I think it's not just that they think, oh, we've found that and we've stopped. It's, it's, or we found that and it's wrong. It's almost the, the first part of a, of a journey towards other complex conditions that are, are very hard to see. Um, there's another question from Zoe saying, did you, did you actually look at the time from symptoms to diagnosis at all? Did that come through in the data? Was that something you, because I, I know in the day I know from, from pots, it, it used to be eight years from symptoms to diagnosis and we, and lots of patients with pots become very angry and very so by the time they, you know, they, they, what a healthcare professional would classify difficult patients. They're the ones that, you know, get cross, get demanding because they've been around the cycle for so many years that you can understand why I'm guessing it's probably quite similar with fibro in the, in the challenging time. Yes. And it, I wouldn't be, I don't think we give you an exact, um, sort of average time frame but it's, it's sometimes it can be, you know, I've just been diagnosed with this. Um, sometimes it can be I've finally been diagnosed with this. Um So I think people's experiences are fairly varied, um often difficult because just the init e even if you're um diagnosed with fibro after a few months, you then face this uphill battle of understanding. Ok. Is my condition real? What can I do about flares who has, who has symptoms like me? Um So it's, we say it's very challenging, but I'm not sure about an exact, an exact time frame to come up. Yeah, thank you. So we've got the, so the key takeaways um are firstly improving understanding of what can trigger flares and start thinking about what strategies healthcare professionals um can use with their patients to reduce the risk of flares. Some of the primary triggers being um stress and food. Um Keeping in mind the importance of weight loss, exercise and sleep strategies um and how beneficial these can be to patients' daily lives. Um Understanding how disruptive mental health ST stigma can be and the importance of developing strategies to manage its impact. For example, you know, talking to people about how mental health can become damaged um as it were um the and finally, the importance of these calm, welcoming spaces and attitudes in reducing stress levels and the occurrence of flares. Brilliant. Um Thank you for that. And it's um and I've got some more comments and thoughts and I really would welcome any more um comments coming in Lisa. I'm just gonna say to you. I don't know why you can't see. I popped something in the chart. Say, can you see my comments? Um Sometimes if you haven't been verified, you can't see it. So maybe for next time now I'm gonna go back up in the jack because I'm gonna go back to the flares if that's all right. That and so wants to know how long do flares typically last for, did you get a, a feeling for the duration of that? People's flares happen for through the data? I think probably days. Um But we didn't look at that question directly. Yeah. And I, and I, and I, and I think flares become um if I could, you know, when you were talking about thinking about the flares and the flare ups that are there and the triggers that can happen. I, I often have um I think you almost can't and to get out of the flare, you can't rush your way out of the flare. It doesn't, you don't, you don't push your way out. You almost just let yourself leave a flare and you do everything you can to mitigate the flare circumstances, but then don't beat yourself up for being in a flare because it's way beyond your control. And I know a lovely lady went there who talks about almost having a flare toolbox and you, when you, when you're in, you have this, you have, you know, it could be a virtual toolbox it could be a real kit and, and it might be a pair of fluffy socks and a nice book or something that you say. You know what I'm going to acknowledge that I'm in a flare and I'm in a flare up and I'm not going to rush it. I know it won't last forever. It will be gone in a couple of days. I'm not going to think I'm gonna sort that cupboard out because I'm, you know, I won't let this flare beat me. You've almost just got to let yourself get through the flare knowing that it's going to because they don't last forever. They do go. Um, and I think as well sometimes people end up having such a really good run without flares and then when a flare happens, it, it really just take them. Now. Um, Kathlyn is also put in our flare flare ups age related and how does this influence recovery? Um, and so, and are you happy? I'll pick that one up. Is that all right? That I, from what I think of, I suspect Kathleen that, um, hormones will make a really big difference when it comes to flare ups. And I'm, I'm getting the nods there from Beth. Did you see that coming through as well or? But I, I think I'm nodding at the next question as well because I think we did see some talk around, um, around pregnancy in, in the data. But yes, which obviously ties into hormones as well. Probably. Yeah. So we see that actually when you're in that sort of pubescent age and you're, and hormones are all over the place, that's often when symptoms can be really, particularly bad, I would suggest. And then once hormones start to flatten down, it's not that, um, you haven't got the hormones, it's just that they're not all over the place and people will probably see more flare ups during menstruation and then, you know, that might calm down a little bit and people go on the pill or have a patch or something to calm down the fluctuations that can happen. And it's taking you back to that calm, stable environment that Lucy was talking about. So it's calm and stable within your body. Um That's what you're, you're always trying to look for. Then pregnancy whoosh, a great big look of um, of hormones and probably again around the menopause time. And it's not saying that men don't get fibroid, but it's a lot of women that will end up with fibro. So that's saying exactly to what Zoe's saying are, are flare ups worse in pregnancy. And I, I suspect they are, I suspect they are. Um James put in a GP recently said, um understand that attitudes are understanding and changing and that fibro is still a relatively new diagnosis. Um And, and has not been taken seriously enough and hope the tide is changing. So it's so the attitudes are changing towards fibro and was that something you able to pick out at all or was it, is it, was, it says something from the conversation? Lucy, I think, you know, the fact that we've been asked to do a project on it and, you know, our, our sort of, um, Aisha who we've worked with the fact that she's pushing it, it's her sole focus of research now, I hope means that, that, that's the case. I think Lucy in terms of whether things seem to be getting better or whether we, we had any, you know, actually I had a really good experience. I don't know whether that came through, you know, in reading through, I know you read through a lot of the comments individually. I don't know whether it was a trend. But did you see any individuals sort of championing a really good experience? Um No, there was not around it. You? Yeah, I think you, I think keeping in mind our like time frame um now would have been, I think 34 years ago, three years ago. Yeah, we pulled the data 18 months ago, I think, but that would have been from the two years previous. So yeah, there is definitely between when we, between um the data that we analyzed the time frame of it and now there is definitely room for improvement, particularly when um as you've, I think as you talked about them, when we're talking to you about cardio vascular health, Michaela when you have these people championing and researching things, um It does help, it does help. Um And I think what we do see in social media, what we do see about how, you know, people using social media forums and everything is that it is a place where people go to, you know, express things that most deeply upset them in a way. So sometimes the more positive experience can be, you know, not prevalent. So it's not to say it's not there. Um It's so maybe the people that have had a slightly better experience. The reason why there's not very many of them talking about it is because they haven't needed the comfort of, you know, these on these online communities and the comfort of being an advocate and everything, the condition. Yeah, that's a, that's a, that's a good insight there. I think you're then, well, we, we make a comment around the pandemic and I think what we found was that a lot of the therapeutic services that people use. So things like massages and just those sort of smaller things that just kept people ticking along or all of that stopping less. So because there's no kind of immediate treatment or not going in for regular sort of clinical um treatment. But I think it was all those support services and the social services, you know, the sort of social aspect of things, I think that's the bit that we saw come through as an impact of the pandemic was those, the exercise groups and massage and things that they then couldn't access definitely had a negative impact. Well, I think we, I think we're there. It's 20 to 8 for us here now. I've certainly, well, well, I want to say I've certainly enjoyed it, but it's also made me feel quite sad as well that, um, that, that there's lots of so many people out there that are really struggling with, with a very complex, um, lifelong condition, it doesn't go away. It, you know, it doesn't get, doesn't get cured or, or something, who knows in the future. But, um, but right now it's not there but actually, er, whilst I feel sad that way, I feel quite, you know, but there's hope as in just having done the research you've done and looked at the data, we've had the comments from Joe saying that actually the GPS were starting to say about changes happening that, you know, you have to, the only way is up as it went and we, we have to always have hope and, and, and that actually there's lots that can be done. And I think that the other thing I'm going to take away from this is that the people when you're reading that when you were reading what they were saying, they're already quite a, an aware patient. I would say the fact that they're referring to tomatoes as night shades. The fact that they're talking about histamines, the fact what means they've already done a lot of research about their own condition and actually, they probably know their bodies way better than most people know their bodies and they probably know better more about what will cause the triggers and the triggers and the flare up. So, although people want to ask for strategies, they probably know a lot of it themselves as well through tried and tested ways. So, um a huge thank you to you Beth and Lucy and we were just talking before about maybe coming back doing some more with us on the, on the sessions. Um I'm gonna have to just give you any last comments from either of you too before I close it up. You anything. I think one of the only one of the great things about social is you do find these really knowledge pockets of people um which you may not find if you're doing sort of traditional, um you know, traditional research. Um I would say on the histamines when we take that knowledge, like for example, about the histamines and then can apply it to the wider patient group. Um So I'd say those, that group is quite small, you understand that deeply, but we can understand how they, they, you know, mechanisms to, you know, avoid flares and help the rest of the patient group with that knowledge, I think. Yeah. Well, thank you. Very much and thank you to everyone joining us um on this session, I will be popping in that feedback form now, um as it's gone. So please do give us your feedback and er, it's been lovely to spend um 45 minutes with you. Sorry to just do that quick. Look like I was texting, but it just the heavens opened and I was having to tell my husband bring the laundry in. So, thank you, Michael. Lovely. Thank you very much. All right, take care of your, I'll click off the um.