Why ME/CFS Has Been Neglected for Decades - And Why That's Finally Changing

Speaker A: Many people tell us that me steals their lives, quite literally. I really do believe that part of the problem has been that it affects more women than men. We're not talking about an illness where there's a lack of scientific evidence base, a lack of understanding. This is serious neglect and in some situations, abuse. If we had 50 million, we'd bring this up to the level playing field and, um, that could create real sustainable change. And if you can Compare that to 23 and a half billion, that's a tiny drop in the ocean.

Speaker B: What are your hopes? What makes you optimistic about where we can go in the next five years or so? And where do you think realistically we're going to be by that stage? Welcome to Biology Matters, the podcast exploring how a deeper understanding of biology can transform healthcare at a time when it's becoming globally unsustainable. Chronic diseases affect billions of lives, placing enormous pressure on health systems around the world. Yet they remain poorly understood, difficult to manage, and lacking effective diagnostic tools and treatment options. In this podcast, we speak with leaders across the healthcare and life sciences industries to discuss how new biological insights are driving precision medicine and helping us to solve chronic disease. The future of healthcare is here. I'm your host, Steve Gardner. Let's get into it. So, uh, I'm delighted to be joined today by Sonia Chowdhury, who is the CEO of Action4Me. Sonia is an amazing leader in the space. She sits at the interface between healthcare public policy, fundraising, patient advocacy and uh, a deep appreciation of the research and development agenda around post infectious disorders, including myalgia, chenkeph myelitis, otherwise known as chronic fatigue syndrome and Long Covid. You've been involved in several major initiatives as well as Action4Me. You're involved with the World Me alliance and also with the Decode Me initiative. So thank you for coming on. It's a real pleasure to, uh, speak with you and I think probably a good place to get started for this is perhaps for you to tell the listeners a little bit about the, about me and you know, what impact that the disease has on patients lives and a little bit about how prevalent it is as well, because I think there's a distinct underappreciation of the significance of the disease.

Speaker A: Thank you, Stephen. Thank you for your kind words. So me is a really horrific illness, affects over 400,000 people in the UK and also a much larger number, we think around 1.3, 1.35 million people who have me like symptoms following an infection such as Covid. And so that's quite significant numbers of people affected, let alone all the families and others that are impacted. Too many people tell us that me steals their lives, quite literally. It has horrendous symptoms which include severe persistent fatigue and exhaustion that does not improve with rest. Hypersensitivities to sound, light, even touch for some people, meaning they can't be cuddled by their loved ones. Gut issues, cognitive dysfunction, sleep issues, pain. The list is pretty endless. And the hallmark defining feature of me is that people get a flare up of symptoms after any exertion, even a very small amount of exertion, and that can be delayed in terms of onset. It doesn't improve with rest and it can last for days, months and even longer for some people. We know that around one in four people are so severely affected they're housebound and often bed bound. And those that are very, very severely affected need help with feeding, unable to manage independent daily l tasks. And in the worst case scenarios we've seen, unfortunately, their lives end because they're just not able to manage nutritionally.

Speaker B: Yeah, yeah, I mean, I know you've personally been involved in a number of very harrowing cases. What is it like for you trying to fight for the recognition of the reality of the impact of the disease on patients? Can you talk a little bit about how recognized the disease is or isn't and how effective healthcare um, is at working with people who are suffering with the conditions?

Speaker A: So I'll start with the personal. I mean, use the word harrowing and I think, I mean that's a very powerful word and yet it doesn't go far enough when you see the way in which people that are the most severely affected are so severely neglected beyond what you would expect. We're not talking about an illness where there's a lack of scientific evidence base, a lack of understanding. This is serious neglect and in some situations abuse. And I think we have to be quite honest about that. And as somebody, I'm, um, a former child protection social worker and that's where I started my career. I've seen some harrowing things and the way in which some people with severe me are treated are, ah, you know, are up there. This is very, very serious. I have to say there are some fantastic doctors, clinicians, researchers, politicians around that are very committed to providing effective care for, uh, people, you know, professionally, politically, et cetera. But it doesn't go far enough. We know that, you know, there has been a, uh, stigma around the illness because the scientific base hasn't been there. And that's because of a lack. We know that that has led to people being left without diagnoses, without treatments, without understanding in a way that they should have. And there are many illnesses that we've. Where people have been left suffering and have had to wait for the science and the treatments and healthcare to catch up. We just haven't seen that quickly enough. For Emmy, this has been going on for decades and decades and decades. And I have to say, I do believe that part of the problem has been that it affects more women than men. And we see that in other illnesses. I know you're involved in endometriosis. We see it around menopause. We see it in a whole range of other situations. And that simply isn't good enough in this day and age. It really, really is not good enough.

Speaker B: Yeah, no, absolutely. We obviously completely agree on that side of things. I think there are reasons to be positive about the progress that's being made, and I'll come back to those, if I may, a little bit later. But you mentioned your background in children social care. How did you make the transition over into advocacy? And what kind of skills have you brought across? Uh, and experiences have you brought across that are useful because you seem to be extremely effective at advocating for patients with these diseases?

Speaker A: So I'm half Bangladeshi, grew up in sort of partly in Bangladeshi culture, where philanthropy's huge and that sort of sense of giving back. And so I always wanted to work in the third sector. That was my ambition. But I also have always been moved by the injustice that people have experienced and inequity, partly through personal experience of racism, et cetera, but also through seeing the way in which some of my friends experience disadvantage even within their own families. And that really drove me to want to become a social worker and ultimately then move into the third sector. I think the skills around observation, understanding, analysis, kind of assessment, all of those things that came into play as a social worker, uh, I use today. You know, we have to work systemically in this field. I think advocacy is as much about listening as it is about talking. And advocacy should rarely be about shouting. And I know that there are some in the wider community that thinks I. And Action Fremy should be shouting much louder. And there are times to shout, but actually, at the heart of anything that you do should be collaboration, whether that's. As a social worker, you know, my job there was very much to collaborate with families, to actually try and support them, to improve things. Not to come in hard and be critical and to get alongside families, but also to champion the rights, particularly of children in that situation. And that's very much what we do within action for me and my whole team, champion the rights of people with me, ah, both children, adults and their families, because they are facing, you know, people with me are facing huge inequity, huge disadvantage and huge injustice. And that is not acceptable. So there's a level of understanding and expertise, I guess that I've built up, but a uh, real sort of value base of collaboration that sits within that.

Speaker B: Where do you think the, I mean you touched earlier on some of the potential reasons for there being a, uh, diagnostic gap here, uh, a recognition gap of both the reality of the disease and also the severity of the disease in many cases. Why do you think it's been allowed to stay hidden and we don't have a clinical care pathway or we haven't until recently had a clinical care pathway that has fully recognize the reality of the disease. You touched on, you know, on a sex bias, female to male, earlier. Uh, there are other diseases which, you know, nonetheless are uh, better recognized than me. Is there something specific about the disease and its symptoms that makes uh, it difficult for clinical care to respond in the right kind of way?

Speaker A: I think there are a combination of reasons aside from the ones that you've mentioned. I think we've seen that play out with long Covid. Many people with me sight of uh, a virus prior to not getting better or to becoming ill with me, whichever way you want to define it. And so we expected to see many people ill after contracting Covid. And that sadly was the case. And what we have seen over time after that initial shock and support for people with long Covid is that uh, actually things just return back to normal. Everybody goes back to day to day life and people are invisible. They're not seen, they're too ill to be out. We've just done a huge survey with over 5,000 people. Isolation and invisibility comes through so strongly in that data. And um, so people aren't seen. So when you're not seen, it makes it easy to forget, it makes it easy to understand, it makes it easy to maybe even malign people with an expectation, you need to be back at work. What do you mean you're in bed? That gives an image of an illness that is about being tired. And we all know that that is incorrect and that it's much more than that. And often we don't talk about. You know, I avoid the phrase just being tired because it's used in a very negative way against this community. I think the other thing, and this may be Slightly controversial. And I'm talking of 14 years experience in this field. Now, I have been shocked at how certain groups of clinicians and researchers have had particular views that they have stood behind and pushed and m pushed and pushed, and they've had a level of influence. And that is not acceptable in a field where we're still learning, and we're still learning in lots of illnesses. There should be debate, there should be challenge, and we should be able to move with the scientific evidence. And I don't think that has happened in the way that it should have done in this illness. And we're still seeing some of that even after the results from the decodemi study, which were pretty conclusive and we're seeing being reproduced and the LACOME study that we were both involved in, et cetera. So I think there are a number of different variables that come into play at a broader systemic level.

Speaker B: And I mean, picking up on that, when you think about the policy side of your role and the socioeconomic impact of, you know, post infectious diseases, Maine and more recently, Maine, like symptoms caused by Covid, we've seen studies out there, uh, that showing that these have enormous impact on economic productivity, on contributions in the workforce, on the educational and career prospects of sufferers. Is there a strong argument that we can play with government in particular around what the economic impact could be of better therapy, better diagnosis, and a better clinical care pathway, actually returning, you know, a number of these patients to a, uh, healthier state, you know, and just making an argument from almost the opposite end, you know, at a population level rather than individual patient level.

Speaker A: Uh, absolutely. I mean, our latest calculations, around 23.5 billion pounds a year cost to the economy, using the 1.35 million figure that I referenced earlier for people with me like symptoms, the. I think that's very conservative with a small c. I know we've got a piece of work yet to publish through the LOCOMI study. The figures slightly higher there, but that's the me and Emmy like symptoms. If you start to bring in overlapping illnesses like pots and eds, et cetera, then that figure will be substantially higher. And that's something that the overlapping illness alliance that I chair, which has came a group of us came together about 18 months, two years ago, are really committed to working on that argument is a very powerful argument politically and economically, but it will not go anywhere near showing the real impact because actually we know and we see just with me, that there is a disproportionate number of families subjected to unnecessary child protection procedures that Calculation isn't factored in, and a system that is under extreme pressure and false allegations of fabricated, induced illness and or formerly known as Osmond Chaucen's by proxy, et cetera. The educational cost of children being out of school, many of whom are not getting any form of educational support, despite the legislation and best practice. There are carers that are out of work or having to stop work because they need to care for a loved one, not even just an ill child, but maybe an ill adult child or a spouse. So I think realistically, the figures are much, much higher and they do paint a very, very powerful picture, and particularly with a Labour government that is very focused on getting people back to work. And that absolutely is the right thing to do, where people are well enough and able to do so. And that is something that we do use. And I think there's more work to be done to create an even stronger, more powerful advocacy kind of message to politicians and others.

Speaker B: Yeah, I mean, I think just to put that number in context, that's 10% of the cost of the NHS that could be saved by returning people to health and the ability to contribute, uh, as you say, a relatively conservative estimate. I. Instead, I'd come back to reasons to be hopeful. I'd love to get your perspective, having been in this space for 14 years, as you say, around what's changed in that time in terms of understanding of the disease, in, uh, terms of a scientific progress that's been made and the ability perhaps to look forward to a time when we may be able to have effective therapies that can help these patients.

Speaker A: I mean, I think there's lots of reasons to be hopeful. I've seen a lot of change in 14 years. It's nowhere near enough. It's not at the level it needs to be, it's not quick enough. And, you know, all of those kinds of things remain true. But there is greater understanding. You know, I see in the health service people recognizing that me is an illness that needs to be taken seriously, that it can't just be ignored, that actually it requires people to do things differently. And, you know, we can see that through the numbers of people that turn up at the Royal College of GPS conference and come to a session, one of the sessions that we were involved in, people were queuing out the door and so many people signed up to be on a mailing list to get information. There is a real desire to learn more. And for students coming through, we won a medical, um. Uh, an essay competition for medical students. We were inundated last year. That's fantastic. So there is a shift in people wanting to know more and understanding that they need to do better for people who have this illness politically, this latest government, and I say cross party, I don't just mean the Labour government, we are getting lots of requests to meet on a regular basis. I mean, we're getting at least one or two requests a week to meet with parliamentarians. And, uh, not just in Westminster, in the Senate in a few weeks time, for example, we've seen parliamentarians coming forward, asking us to support them in putting in bids for debates, writing speeches for them for debates, and, you know, a whole range of different things. We've got over 20 parliamentary champions for me at the moment. And one of the arguments could be, well, so what if you read some of the social media posts, particularly at the moment, people are saying, well, so what? You've got another parliamentary champion. Or they voted this way in a bill about, you know, um, in something to do with welfare reform. But actually, the so what for me is if it was easy to solve, then this problem would have been solved and things would be different. Right now it's not. And we need allies and we need champions and they need to chip away. There is no big bang response to this. There is no massive golden pot of money at the end of a rainbow. We're in a global crisis and the government has a really tough job to do. Making decisions with limited resources, limited capac. So actually, having a sustained presence, a sustained voice for people with me in Parliament, in the public arena is so important. It creates that improved awareness, improved understanding, improved knowledge, and that will lead to change. It's incremental. We're not gonna achieve. You know, I wish we could find that nugget or that pot that says if we just do this, it will create a tipping point and, um, all wonderful things will happen. That's not going to happen. We've got to be realistic. So how do we, you know, what action do we take to achieve the change that is needed and recognize we've got to be persistent and dogmatic and just keep going and demonstrate real resilience in the face of a, uh, very challenging environment? And I have to say, I think, you know, the media has come a long way. We would rarely see media articles. When I first started, we were writing letters to local papers just to get them talking about Emmy. We don't target them now, actually. We have relationships with the Times and with Channel 4 and with others that are really committed to challenging the injustice that exists for this for our community. And I think that's a real shift. If you take sort of part parliamentarians, the media, the press, the health service, social care service, people starting to speak up, that voice is going to get louder and that will lead to change. And I recognize it's not quick enough, it's not in the way that it should be, but we are getting there and we are seeing that change. You asked about research and I mean obviously we've seen some great results through decodemi study with, with the genetic hits, levels of replication through locomi and identification of drugs that potentially could be repurposed. The fact that you at Precision Life are able to expedite some of the work in terms of, um, you know, helping with clinical trials, all of those things are going to improve our scientific knowledge base and will accelerate research to lead to treatments and diagnostics. We have seen money come in to sequence. Me and Long Covid, we've got a whole group of funders and then the 4.75 million that has come through the government again, we can be really critical about that and say it's not enough, it's not gonna go far enough. They should have done more. But hey, we've gotta celebrate some of the wins. Otherwise people like me and others will just leave the field. We have to celebrate the things that we achieve and we have to use them to make us even more motivated to achieve more and to be more resilient and to be more persistent.

Speaker B: I mean, I think those are great points and you know, I'm particularly struck by the change in understanding of the disease from something that was almost unknowable and, you know, too complicated for clinicians or pharma companies to get engaged with. Through the DecodeMe study, we've collected enough data to now be able to identify a whole series of genes and mechanisms that are going wrong inside or are, uh, leading to an increased risk of particular symptoms associated with me and demonstrated an overlap with other post infectious conditions that, like Long Covid for example, I think that feels like a fairly major step forward because it gives us a very defined target to go after with many of these trials. Whereas perhaps one of the challenges that uh, the field has faced because of the complexity of the disease is that there is no one drug that's going to work for absolutely everybody. And therefore, if you assemble a clinical trial in the past, maybe only 20, 25% of patients have actually responded to that therapy. In many cases it's been transformational for them, but that signal gets swamped out by the other people that it doesn't work for, and therefore the drug is not approved and that area of research shuts down. It feels, and you know, I've recently been at a number of these, uh, of the research conferences. It feels like the research space is broadly energized now in a way that perhaps hasn't been true or, uh, wasn't true five years ago, 10 years ago, around the opportunities. And we've seen a lot of clinical trials starting to spin up now with designed around selecting patients because they have particular drivers of disease and maybe trying to use this as a way of improving the odds of success and also reducing cost. How do we communicate that effectively with patients, do you think? Or perhaps politicians and clinicians as well, to say, hey, look, know, we're making great strides here. There's lots of reasons to be optimistic. And actually the size of the prize is huge, and the amount of money that we need to get there to demonstrate success is actually relatively small.

Speaker A: I mean, the two bits is the sort of general kind of awareness, uh, and comms around that. And I think that's happening. You know, we're saying it, you're saying it. It's being talked about at, uh, conferences. There's articles in there are webinars that we do, podcasts, et cetera, that communicate that more broadly. And I think that is starting to be heard. There's a difference between the ME community and the need for hope and a feeling as though things are moving forward. But there's also that broader, uh, kind of public base that need to, you know, that's part of that chipping away. It's saying, actually we do need to take this seriously. Wow, there are genetic hits here. Who knew and why didn't I know much about this illness before? But I think there's a broader piece around that's linked back with the advocacy question you asked earlier, which is how do you develop a very concise, almost kind of, to use jargon, elevator pitch that links together the problem and the cost to the economy, if we want to use the language of our current government at the moment, to the potential solution, the savings, which will then help that overall picture in terms of lack of funding and capacity and demands from all kinds of different areas in terms of the budget and the Treasury. And I think that is a powerful argument to be made. My view is that the government should be undertaking a cost to the economy, exercise themselves so that it carries the level of validity and internal ownership that is needed. And I think that is absolutely something. It's Something we've been pushing for, I think it was. There were many gaps in the government delivery plan and lots of things that they're not delivering on despite promising they were going to. But I do think that would have. That could have been quite a significant piece of work which they could have managed internally, given the level of expertise that is held across the Civil Service. And I, uh, think the piece of work that, that we will publish through lacomi, in terms of costs, economy, socioeconomic costing, will be powerful and it's likely to be adopted, given the robustness of the work that went behind it. But actually having something that has come through the government department itself and through the Civil Service will give greater ownership.

Speaker B: Yeah. I mean, having spoken to a number of the protagonists in that space case about exactly this issue, I think you're absolutely right. I'm really impressed by the level of engagement that you're getting with parliamentarians. That feels like really significant progress and I wonder if it's reflective of a broad understanding, both of the impact of the disease on patients, but also on the nhs, on the economy. And the messages are very, uh, much getting out. I do wonder a little bit. I mean, we've seen, for example, Germany have a much stronger response, a much higher commitment to funding of post infectious disease research. What would it take, do you think, what are the missing pieces in the UK to connect those dots? So that, uh, at the end of the day, most of the great research that's going on at the moment through decodeme, through Leukomi, through a variety of other initiatives, is actually happening in the UK and it's happening with UK patient data. We're leading the world in many ways in the study of these diseases. What does it take us to lead the world in translation of that research into better therapies for patients, uh, better clinical practice, better diagnostics. What's the missing piece, do you think?

Speaker A: I mean, I guess you could say it's the obvious and the most easy answer. It's funding. So researchers need the funding to be able to undertake the research and we do not have the same level of response from the government that we've seen in Germany, the Netherlands and other places where there is designated money put out for research. And I think that's a, uh, failing for all the reasons that we've talked about. I think it's short sighted and I'm not going to knock what has happened so far, but it doesn't go far enough. But of course, that's not the only issue. We know that research into me and also long Covid and other illnesses to some degree has not been an attractive career choice. In fact, we've had very experience, researchers in this field advising people not to come into this area because of the challenges in being able to build a career, the negativity that they face within the kind of research community and um, field, the difficulty of getting grants, et cetera. Now of course, I'm sure if you had the funders and the civil servants sat here, they would be saying, well, we looked at this in the government delivery plan and there are all these things that we're going to do. And my question would be, well, so what, what has shifted? How have made the boat go faster by the actions that you've identified? What's changed? What impact have you had and what more could you have done to create greater impact and much more quickly? And I do think there needs to be some form of restricted funding to inject into this field to bring it up to a level playing field with other illnesses. And that is the only way that we're going to see substantial change, the speed that we need it to happen. And all of these kind of smaller, uh, kind of steps will have impact and it will move things forward, but it will just be far too slowly. The other thing that the government will say is, well, we don't do that well, we don't have dedicated pots of money. We don't put substantial amounts into different things. Well that's rubbish. We saw money go into the dementias platform, we saw money go into the mental health hub and we've seen money, you know, there have been, there were announcements over the last week for specific funding pots and investments. So if that can happen, why can it not happen for this group of people that are significantly neglected and um, are costing the economy? And I mean that's not directed at uh, the individuals themselves because people with me do not want to be in this situation. Absolutely nobody would for decades AIDS in that situation. But if we could move people out of that when they're well enough and prevent people spiraling into a position where they are physically unable to work, then that has got to be better for everybody, including the economy.

Speaker B: Yeah, I mean, as you know, we work a lot in ALS or motor neurone disease as well. And alongside the initiatives that you've described, a few years ago, £50 million was found to set up the motor Neurone disease, uh, research institute and to fund a series of translational studies in this space. Obviously the ALS community has also been exceptionally good at self organizing and Indeed, fundraising, including the Ice Bucket Challenge and various other things, other things that we can learn from, from those types of initiatives. And, you know, are there some lessons that we can, we can bring across for, to promote the awareness and the level of funding? For me, I mean, there are lots

Speaker A: of things to learn and believe me, myself and my team spend a lot of time looking at what would happen, learn from others. And, you know, the Ice Bucket Challenge is one of those phenomenal things that just started with an idea. Somebody said, we're just going to do this, and it took off. The time was right, it was very creative, it was engaging. You know, I sat in the garden during lockdown with my children being covered in ice water and, you know, all of those kinds of things. And so I think there are plenty of things that we can learn and we do speak to, as, you know, we speak to other leaders in the field and other teams to understand what they're doing and what we can do better. I think if we're really honest, what really shifts things is having somebody with the power, the influence and the access that puts their weight behind it and is able to secure that funding or the policy or whatever it may be. And that's what happens. You know, if we're really truthful, that's what happens. And we have not yet been able to secure that within the me and long Covid sphere. And that's despite having fantastic parliamentary civil service advocates that are pushing for that change. And so if anybody, if any of your listeners have the, you know, the suggestion around what could really kind of help us to move that forward and create the momentum needed, then we will happily listen to that. I do believe it will happen. It's just not happening quick enough.

Speaker B: I mean, just, I'm, um, going to slightly put you on the spot here, but, you know, against 23 and a half billion pounds per year, year potential savings, what do you think it would take to actually have an organized program that can start to bring the first effective therapies, the first effective diagnostics to market? Because my sense is that once we have one of those out there, a little bit like qual sodi in als, once you have something that works, works, it isn't an insurmountable problem anymore. And pharma companies are looking at a market with tens, hundreds of millions of patients with very little competition. Once you demonstrate that solutions can be found, this will snowball. But what's that quantum of money set against the 23.5 billion a year that would actually move the needle sufficiently far for this to be a self sustaining funding issue.

Speaker A: Well, I'm not in the best position to be able to answer that Steve, but I will. If you think about it in current terms, we've got data from Dakota, me and Locomi which could already start to uh, move things forward. We know that the NIHR have got a couple of, you know, are looking at clinical trials and we're talking small amounts of money, you know, a few million, couple of million, and not even that. And so I mean the piece of work that we did with uh, there was a whole group of us, other charities, researchers, people with lived experience who said if we had 50 million we'd bring this up to the level playing field and that could create real sustainable change. And if you Compare that to 23 and a half billion, that's a tiny drop in the ocean. We also have to be realistic in terms of where the country is financially and economically at the moment and the pressures uh, that are there. If the government turned around and said we're going to follow what Germany has done, then I think in the next couple of years we could see major change. £10 million a year would make a massive difference. There'll be many that argue it's nowhere near enough and I would agree with that. But actually it shouldn't take much to start moving that forward. And I think with all of the kind of novel techniques like the ones that you use and others are applying, then of course we get a level of acceleration in a way that we couldn't before we started to have that sort of stratification and insight that we are starting to gain. I know you and I have discussed sequence me and Long Covid and whole genome sequencing and how long that takes versus novel techniques. We need both of those things. We need to have that uh, genetic, what I would call basic science that sits there. And for the sequence, me and Long Covid, we need another 15 million to complete that program of work. And of course there'll be other pieces of work that come after that. So uh, I uh, do think when you put all of those things together, 50 million would give us a good starting point. But it has to be a starting point and not the end of the story. But we can't wait to for that. Even a smaller amount of money will enable your research and others research to be able to move forward much more quickly while we do those longer sort of um, m More in depth studies that pharma companies will need alongside the output from the novel techniques.

Speaker B: Yeah, I wanted to switch track a little Bit back to patients and you know, two things I, uh, have in mind. Number one is on the lacomi project we brought together Precision Life as a UK SME. We brought together UK academia through Professor Chris Ponting, University of Edinburgh and um, the decodeme M study, uh, that he and yourself were leaders on, we also brought in in some fantastic PPIE representation. So people with lived experience of the disease, both directly and as carers for uh, people with the disease. And I have to say from our perspective that was absolutely phenomenal. The level of insight, the guidance, the advocacy of what was really making a difference to patients and how to explain the science back to participants in the study was incredibly helpful. That I think is one of the roles that you relish the most for or uh, one of the things that Action4Me does most actively. Can you talk about the importance of PPIE in this context, especially in a disease that perhaps is misunderstood to the extent that ME is.

Speaker A: And of course just going back to your kind of bringing together SME academia, people with lived experience and the third sector, uh, through us actually. And that's a very powerful, I think that's a very powerful kind of system to create. And you're absolutely right that people with lived experience or patient public involvement and engagement, PPIE is critical. I mean we as an organization that is embedded in how we operate at all levels, including within the board. And actually that 30% of my staff team have personal lived experience of long term conditions mostly. And so it has to be at the center and at the heart of everything that we do. You know, how do we know that we're creating impact without the voice of the people that we're there to serve. And organizationally we have been a real, I think we've been a real champion of having PPIE at the heart of research. And you'll know from your own experience and we know from Decode Me, the science is so much better because of having people with lived experience heavily involved we with decodeme study. We could not have recruited 26, nearly 27,000 people to participate in that study without building the trust in the community. That was done not just because of us as a charity or Edinburgh University, but because of the involvement of people with lived experience helping us to refine what we were doing, how we were doing it, um, the communication that we had and ensuring that we challenged ourselves in a way that enabled us to do better. And I remember very early conversations with you Steve and the team around, well, what is PPE and how do you do it? And how you approach it, to see how you, uh, as an organization have grown through that involvement. And I have to say, the level of commitment, particularly from you, but from others in the team, to kind of listen and to ask and be challenged to shift your perspective is really positive. You have to have an openness to that. And for me, that's what science is. It should always be about debate. You know, I say to people, my experience as a mother and weaning a baby changes. Is it six months, three months, nine months? Mine was different from my mum's and my sister's and so on. And we'll debate it. And the evidence creates another kind of perspective. And I think one of the most important perspectives has to be people with lived experience of whichever disease or illness that you're or cause that you're studying or involved in. So I think there is huge value that is often missed by researchers by taking what I would call a more tokenistic approach. Here's the leaflet comment on it. Uh, rather than having people embedded in the design, the delivery, the communication and that kind of broader sphere of work. And I know because I see the emails that come in, that's continuing beyond the funding has finished with Lakomi. Those debates and discussion and value that's being created from that has continued. And I think that researchers within the field should demonstrate, have to demonstrate how they're doing that in a very meaningful way that not only reflects the national standards that exist, but actually demonstrates the value that's created by operating in the that way.

Speaker B: No, I totally agree. And it's been an incredibly positive experience from our side and for the wider team. One of the challenges for us is it's very easy to be given a data set and to delve into the science and the technology of all of this and potentially lose track of why you're doing this and what, what impact can be made. And I know a lot of our team have been very vocal about the benefit of the lived experience as part of design as well as interpretation and communication of results. I guess it sort of lends itself to, uh, another question, which is what do you think, ah, are the biggest priorities now for patients and the ME community in terms of things that they would like to see coming out of these types of research? What are the big gaps from a patient perspective particularly?

Speaker A: So, I mean, I would say that actually the me, um, community has already told us that, and clinicians working in the community through a priority setting partnership, we have the top 10 plus, which really is 11. Stefan, we wanted the top 10 but there were two that were tied. So the top 10 plus priorities that have come through there from a uh, research perspective and all the work that we've talked about today, the science we've talked about today is, are ah, covered within those priorities and the importance of thinking about those that are severely and very severely affected and making sure that research is kind of focused in that way and greater understanding around post exertional malaise, et cetera. I think there are other things that we know people with me, um, tell us, and I referred to our ah, big survey earlier on with over 5,000 people with not yet published results. I've seen the first cut of results. But once again isolation comes up as one of the major, major issues. And if you think about all those horrific symptoms that people are experienc, the challenges of being out of work, not being able to access healthcare, social care, stigma, all of those kinds of things. And yet isolation remains a massive issue, which is unsurprising given that people aren't well enough to be able to engage socially, go out of the home, you know, those kinds of things. But actually there are things that can be done. We need to challenge and push for more research and more research funding and greater understanding. We need to have better access to health and social care. But actually as a society we've got a responsibility to uh, help reduce isolation and to help reduce that invisibility and to actually see what people are experiencing, the impact of this illness and to have better understanding. And the number of people that I engage with that say I don't really know much about Emmy, but I did know somebody and they got ill and then I just didn't see them again. And you think so that person's become invisible to them. And I'm not blaming people. We're all busy and there's a lot of challenges in all our lives in lots of different ways. But actually when somebody becomes ill and disappears or becomes ill with cancer or other things, we see it differently. And I think as a human population, human race, we have a responsibility to, to be better in terms of understanding what people are experiencing and understanding that maybe somebody is so ill they're not able to come out or to have me to visit. But that doesn't stop me from just sending a message every so often, not expecting a reply, but just letting them know that I'm there, uh, and I'm thinking of them. And one of the most powerful services that we provide within action for Emmy, that always kind of strikes a chord with me is our Birthday card scheme for children. And I know as a parent of a child who had me at the age of 11, they're so isolated, they're not seeming, you know, for a child to not get a birthday card from another child is devastating. And that's just, you know, and the message, the impact that we hear from children who are just so joyous to get a birthday card from another child, even though that they don't know them doesn't matter, it just means they've been seen and that actually it creates a sense of belonging that something outside of their small room or their home or the little world that they've had to exist in because Emmy has shrunk it so significantly. So uh, I do think that there are many things that we can, can do as a society that actually can help improve lives while we're waiting for all of those other things to happen.

Speaker B: That's phenomenal. And it is I uh, know having you know, seen the patients with, who are living with more severe forms of the disease, you know, that social contact, especially with, you know, if it's with somebody who's had similar experiences can be incredibly, incredibly life changing. Just the knowledge that you're not alone, not having to live through this all alone is amazing. One last question if I may. I alluded to at least my perception that the science around me and um, uh, long Covid has changed significantly in the last four to five years. How do you looking forward to the Next, let's say five years, let's take us out. 20, 30, 20, 31. What are your hopes? What makes you optimistic about where we can go in the next five years or so? And where do you think realistically we're going to be by that stage?

Speaker A: So my hope would be that action for me doesn't exist or at least doesn't exist in its current form because we're not needed in the same way any charity leader should have. I really fundamentally, you know, if we do our jobs well and of course we, you know, there are limitations to what we can physically do, but we should exist to not exist because that uh, you know, we've changed things significantly. Being realistic in five years time that's not gonna be the case. But I do hope that we're starting to see a raft of drugs that you know, available from a repurposed perspective and, and we know that we connect the diet clinical trials. There needs to be a commitment to do that. There needs to be the funding, all of those things. But we should be seeing in five years time drugs coming through to market or at least that pipeline is there and it's in process. I would also hope that we'd be in a position for some form of diagnostic tool that goes beyond diagnosis of exclusion. And we know from other illnesses, whether it's M Ms. Polio that actually wants you get that diagnostic, it shifts the field significantly and it removes that kind of challenge and lack of diagnosis under diagnosis, et cetera. So I would hope that we would have those two things and I do think that being realistic, there is a level of possibility because of what we've seen over the last four or five years. And I would also hope that actually we have have much more openness and visibility around the impact of me long Covid pots. Those kinds of illnesses that do need to people talk about them having to come out of the shadows, they don't have to come out of the shadows. We have to take a responsibility to see what is happening behind closed doors and to take responsibility for being part of that solution. So I would hope that the general public will also help to play a part in making those things happen and ensuring that people with me aren't invisible and making sure that those most severely affected aren't those most severely neglected. Because we just don't see that in the same way in other illnesses and it's just not good enough.

Speaker B: Yeah, well, I think we absolutely echo all of those hopes. Hopes, you know, I think we can. We're seeing great strides moving towards that and you know, I think a collaboration. I said at one of my recent talks, it's going to take a village to absolutely to solve this. All of the people that we've talked about on this call have roles to play. And you know, I think I'm um, just incredibly impressed by the leadership of Action for a Me and the Decode Me project and the other initiatives that are going forward in corralling this research, in bringing lots of interests that wouldn't necessarily have come together and just focusing on the problem and the needs of patients. So thank you very much for your leadership in the space. Thank you for coming on and talking about me and where we've come from and hopefully where we're going to really appreciate your time. So thank you.

Speaker A: Thank you too.

Speaker B: If this episode changed the way you think about precision medicine and chronic disease, share it with someone who should be part of the conversation. For more discussions on how a deeper understanding of disease biology is reshaping healthcare. Follow Biology Matters wherever you listen. You can also learn more about precision life and the work that we're doing@PrecisionLife.com. uh, and remember, the better we understand disease, the better we can predict, treat and prevent it. Biology matters. Until next time.