67 - DecodeME - a chat with Prof Chris Ponting & Andy Devereux-Cooke

Episode 67 of the Long Covid Podcast is a chat with two wonderful people from the Decode ME genetics study – Professor Chris Ponting who is the lead on the study, and Andy Devereux-Cooke, co-founder of the Science for ME forum and also an investigator (PPI) on the DecodeME Management Group.

We discuss the study itself as well as some of the background behind it.

If you are interested in signing up (or would just like some more information about the study) please go to DecodeME.org.uk

Science for ME Forum

Action for ME

NICE guideline for ME/CFS

Transcript

Jackie Baxter  0:00  
Hello, and welcome to this episode of the long COVID Podcast. I am absolutely delighted to be joined today by two wonderful people involved in the Decode ME study. So I've got Professor Chris Ponting, who is the lead on the study. And Andy Devereux-Cooke, who is co founder of the science for ME forum, but also an investigator on the Decode ME management group. I hope I've got that right. So I'm really looking forward to this discussion and learning more about the study. So welcome both of you to the podcast. 

Andy Devereux-Cooke  0:33  
Thanks for having us.

Chris Ponting  0:34  
Thank you very much.

Jackie Baxter  0:36  
So to start with which you both mind briefly introducing yourselves a little and just saying a little bit about what you do, and maybe what brought you to the study, and you know where we are now,

Chris Ponting  0:48  
I have a good friend, Simon McGrath from 30 years back, who is, was, you know, a vibrant personality, but whose life since then has been devastated by ME. And I thought for many years, as a scientist, as I was doing my science, I wouldn't be able to help him in any way, because I was doing fairly fundamental biology. Until I sort of realized that it later in life that all the technologies were becoming available, and were within reach, and so I started engaging with what was then called the CMRC. Now, the MERC, to see what I could do, and that eventually, after a very long process, which Andy and others were very much part of, came to be the Decode ME genetics project that we're involved with. But that journey for me has been really interesting, because it enabled me to apply the science that I can do, in ways that I'd never perceived. So it's been a voyage of discovery, personally, as well as scientifically.

Andy Devereux-Cooke  2:03  
So well, the bottom line is that I'm the person living with ME. With ME. I suspect I've had it for 40 odd years, which ages me somewhat. And I say suspect, because it's only the last 15 years that I've had an actual diagnosis. But basically, I got through life with less energy than your average person in the population. And also, with the fact that as time went by, basically, weekends were recovery. So I've almost been the full extreme of being able to work full time, so that that's when weekends were a recovery for me, as much as they could be, through to I'm still housebound, to the large extent, at the moment, but there was certainly periods of time when I was couch bound at best, let's say. So, I'm sure that from what I can pick up from from reading, or, or what I do read about Long COVID, and such, like, I'm sure that that is quite familiar to a lot of your listeners, no doubt yourself as well. 

And it was, during my time living with that when I got my head around what I discovered once I dipped my toe into the patient community, not that long ago, 10 years ago now, you know, really was pacing, you know, of making sure that I didn't ove-exert, that, as frustrating as it was that I kept within my limits, which were quite drastically different to your average person in a healthy population. So as I say, roughly about 10 years ago, I started getting involved with the patient community and this coincided with really not being able to work any longer. I'd gone from full time to part time. And then eventually had to give that up. So started engaging the patient community and started just putting my hand up to get involved in small little tasks that build up to bigger tasks. 

And then with with a group of other people with ME and and carers for people with ME, we we founded the forum science for ME, which hopefully as the name suggests, we wanted to focus on the science, or lack of out the time. And we have a community there who within their limits, the vast majority, obviously are people with ME. And their carers, we tried to discuss the science that has happened is happening. And from there, I got involved in a number of the researchers that are out there looking into ME, this is really broad strokes. But following that Decode ME was the, the bare bones were being put into place, and I was invited on board as a patient representative. And obviously, my connection with the forum was, would be quite useful, really both ways, most importantly, in having a clear channel for patient representation. And that's how I ended up speaking to you now. So it's been an interesting time. Prior to this, I have no science background, just nosiness, really!

Jackie Baxter  6:06  
You know what, it's really interesting, isn't it? Because like you I am not a scientist or a medic in any way whatsoever. My background, I'm a musician. And suddenly we find ourselves reading research papers for fun, or not even for fun, just out of necessity, isn't it? So. Yeah. Thank you so, so much for that. 

And, you know, I'm coming at this from the lens of having long COVID. And my journey, compared to years is very short, so far, you know, I'm sort of looking down the barrel of sort of a third year, which is unthinkable to me. But you know, the idea that people have been ill for so much longer is just, well, this has really opened my eyes to it for sure. 

But this idea of patient representation in research, and how important it really is, and kind of building it up from the ground as well. What were your kind of experience of that - I guess, both of you?

Andy Devereux-Cooke  7:02  
So I think it's fair to say that ME research prior to recent years, has been done with minimal input from patients. I don't know how much you do know about the background of ME research or the history of ME research. Obviously, a big area of contention is what was previously recommended as treatments for ME, by NICE. The previous guideline, which came from 2007, if I remember right, recommended CBT and graded exercise. And I want to clear up something right now, when I say CBT - CBT can be helpful for many people, because it can potentially can provide a new lens on how to look at their situation. It can be how they approach their situation. But the CBT that was researched and was subsequently recommended for ME was basically along the lines of - ME people are deconditioned. So they need to do more. Now the graded exercises, and is an obvious route into that. The CBT was ME people just think that they can't do these things. They need to be convinced that they can. And that will get them right. 

And obviously, that's - well perhaps not obviously. But that's counter to the experience of the vast majority, I would suggest of the ME population. And when NICE redid their guidelines, which they published roughly about this time last year. They reassessed the evidence for CBT and GET (graded exercise) and found really, there wasn't the evidence to recommend it as a treatment, which we patients had been saying for quite a long time. So we broadly, the ME patient population, we were coming from a space where we felt ignored. We felt that our genuine attempts to alert people to the results of these what were meant to be treatments, were counter to what was being suggested. And we have had to persist in attempting to make our voices heard, particularly when we pointed out again as NICE found, that the evidence supporting these treatments was rather lacking. 

So I go through all of that just to give you an idea of when we come to Decode ME which recognize that, the people who were looking to put it in place recognize that this was the space that they were coming into, if you like, with the project, and that it was important, because of the numbers of people we were looking to engage. If we didn't, I say we, obviously as part of the project now. But if the project didn't have what was perceived by the community, as adequate representation of the community in it, then it would struggle even more than we have, well, not struggle, but the challenges of for recruitment will be even greater. 

And I think Chris will agree, it's also the right thing to do, you know, to have patients have as strong a voice as possible in a project is investigating them. So with all of that background, it's been rather nice, not fighting to get our voices to be heard. You know, and I say that as somebody intimately involved in it now. Other people may not agree with that who are listening in, because they don't have that advantage. But I and all the other people with ME and carers involved in the project, we honestly do give it our best shot to represent the community, rather than our personal points of view, if they are different to what we think the the community view is. An now Chris will tell you how difficult I've been!

Chris Ponting  11:35  
You've been lovely to work with Andy! The important thing I think to say is, that right at the beginning of this project, and before, we recognized one thing as being the principal aspect to this particular devastating disease - we know nothing. That's the key thing. We know not how to diagnose it properly. We don't have a biomarker, we don't have drugs. What we do have is lived experience. We have people's discussion. I mean, in Decode ME we've captured 150,000 years of lived experience from people through their questionnaires responses. So starting with essentially nothing that you could bet your mortgage on, that we know about this disease, you really, as a scientist have to start where every doctor starts, which is to ask about symptoms, and to listen, to hear about symptoms, to understand and believe symptoms. It's the cornerstone of clinical practice. 

Now, to be clear, I'm not a clinician, I'm a researcher, I've not got clinical qualifications. So I step away from all of that aspect. But I do know that there is no biomedical explanation of people's clinical symptoms. So once there is this realization, not just that it's the right thing to do. But scientifically, there is value and substantial value of working with people with lived experience. It's a no brainer to say we have to do it together. And your question started with representation as if there was a project and then the community has representation into that project. It's not that like that at all - we work together as people with lived experience, and like myself, I don't have any lived experience. And we make judgments and decisions together. Every aspect of the project has lived experience woven into it. Every group that meets has someone from the community. 

And we don't Lord it as scientists over anyone else. We try anyway. Andy may disagree with me in a minute. We try to listen most because of what I said at the beginning - that we know almost nothing. And particularly I don't know anything right now, as I said at the beginning, I've come from a far flung place in science to work in ME. And so I have to learn from others what are the best things to do, knowing the scientific method as I do, and that's probably my advantage, but to apply it in this particular instance. 

And just one last thing about the scientific value - We would not in Decode ME be where we are without that lived experience - we would not have so many people having volunteered their energy, their time, and I know how much that donation is, to this project. We would not have any of that without lived experience not just because the project is believed by others, but the value written into the questionnaire, for example, from lived experience was enormous. And so has enabled the project scientifically in ways that as a newbie into the area, I would not have been able to provide.

Jackie Baxter  15:14  
So it really is a collaboration in the truest sense of the word then? 

Chris Ponting  15:19  
it's a very flat structure.

Andy Devereux-Cooke  15:21  
One of the things that I thought it would be helpful for your listeners, is perhaps to describe what we're doing with Decode ME, and how we're doing it. So, again, taking a step back, we've designed the study to attempt to make it as low energy as is possible. And, you know, accepting that certain amount of energy investment, as Chris has just touched on, has to happen. So we have a primarily web-based questionnaire that we ask people who have a clinical diagnosis of ME, or any other name variants that people might have encountered, during their life, resident in UK and age 16 or over. So those are our requirements for initial involvement. 

So there's an online questionnaire that we ask the majority of people to take part to complete. For those people who are just so severe that they struggle with using screens. So quite a common issue for people who are particularly severe, who have severe ME is their difficulty in using computer screens, you know, even set the lowest setting, the brightness can often be too much for them, you know, so that kind of lighting tolerance can often be a thing. So we do have a paper version. So if people need to do it on paper version that is available, but obviously, where possible, we really appreciate when people can take part electronically on the website. So the questionnaire is completed. And that's that's where all of those hours of experience that Chris mentioned earlier. That's where that information comes from. 

And from the answers to that questionnaire, we then select people who we then ask them to give us a DNA sample. So that's done as a saliva sample. Most people, who match up with our requirements for people to donate their saliva, we will send them a saliva kit in the post, where they can in their own time, they can spit for science. And they don't even need to do it publicly they can. And I've done it as well. So I know, it's surprising how much saliva is required to fill quite a small tube. So if anybody listening to this is due to donate a saliva sample, take your time with it, there's no rush. So from home, you can generate enough saliva to filter the marker on the tube, seal up the tube, seal it all in the packaging, which comes , in the parcel that we send out and return in the box that we send out. And that can just go straight into any post box and that's it. 

And both phases of participation are incredibly valuable. So obviously, the thing that takes most people notice is that donating of saliva. And yes, we're hopeful that that will tell us something useful about ME. But we believe that, you know, the answers to the questionnaires - difficult to kind of map, measure one against the other, to say one is going to be more important than the other. I mean, if we found The Cause of ME, which is unlikely, but we can dream, then, you know, we'd say yes, it's the DNA samples, obviously. But those questionnaire answers are going to be, are going to be helpful, not just for us, but feeding into, you know, awareness to the charities, to not quite how to phrase it but there's a government review of ME, which I think Chris can probably speak to more clearly. There's a government review of ME going on at the moment, which the information from the questionnaire, that sort of thing can be fed into. 

So we appreciate everybody who goes along to the website. And I'll mention that now. DecodeME.org.uk. And you'll get information about the study, you can look up our frequently asked questions, you can read our blog, where we've highlighted different things,  which also has links to webinars that we've done. And obviously, there is a link to a signing up to take part and to join in what is currently the largest study of ME in the world.

Jackie Baxter  20:53  
And we were saying earlier how important the lived experience is. So you know, that the questionnaire is, is the lived experience, isn't it? You know, in a lot of ways, it's hearing people's stories. So, yeah. Are you able to talk - I don't know if you'll be able to, but you're sort of, I don't know if criteria is the right word. But the people that get asked to do the saliva sample, why do some get asked and some don't?

Chris Ponting  21:19  
So there are like, in any study, there's always criteria. And if we were to take all comers, then there would be quite a lot of pushback from other scientists to sort of say, Yes, you know,  you've included so many people, you're not going to get anything coherent from the answers. So we were always going to have to apply some criteria. And when we went to the funders, we had a good sense of what we wanted, which was the internationally based criteria called the Canadian Consensus and the IOM criteria. So absolutely. Either one of those is, is what we asked for. 

During peer review, when other scientists sort of chip in and say, you know, this aspect is good, this other aspect's less good. And they suggest things. They came through with some other criteria. And they said, you know, essentially, this is what we not just recommend, but we say to you, this is what you have to do, in not so many words. And so that's what we're doing. 

So then the next question is, well, why aren't we as Decode ME telling everyone what exactly the criteria are? And the answer to that is, well, we're not actually writing down a recipe for how people can participate in the study. If we were to write down and say, right step one, step two, step three, and then we will tell people how they would participate across both phases of the study, then the same scientists who would have pushed back on us at the beginning would come back and say, you know what, you've you've dabbled with the criteria by telling people, you've influenced the outcome of your study, which is not scientific. So weirdly, we can't tell people exactly now. 

But I pledge and I've said this before, on webinars, I pledge that everything will become clear. Most things are, let's be honest, you know, we put everything out that we can, and you can see this from the website and beyond. But this particular aspect is not abundantly obvious, but it is for scientific reason. And so that's why we've taken the exceptional decision. Not to make that so very clear at the beginning.

Andy Devereux-Cooke  23:39  
Something I think it's worth clarifying here, and which we've certainly addressed previously, if somebody isn't asked to donate a DNA sample, it's not that we querying their diagnosis. It's just that we need to select from all of those people who have ME who are taking part. You know, for reasons that Chris just covered, we have to select a smaller portion of all of those people. You know, and certainly as a patient, I can completely understand when we're coming from a background, from a place where we didn't feel listened to by the research community, where we didn't feel that our condition was taken seriously. 

And when people who do complete the questionnaire, have expended their precious energy and time to then not be asked to take part in the second phase, the DNA sample. I can understand that that can come across as we are rejecting them, in some sense, you know, that we're saying, frankly, that in some ways we saying that they are not good enough or that their ME is not of the right sort. And I personally would love it so much if we could include every single person who completed our questionnaire; for the community, for those who do expend, you know, their precious resources. And also for us, because it would make our life a lot easier, in some ways, in other ways it would make it more difficult. But in terms of our recruiting enough people, our life will be so much easier.

Chris Ponting  25:38  
But we wouldn't have been funded. And if we took all comers we would not be funded. And I know this, because recently, I tried to get some funding, and the peer review that came back, you know, and they're entitled to that view, the peer review said, This is too complex a disorder. The symptomology is so diverse and heterogeneous. And it's it fluctuates so much that that can come over to some clinicians as being that there are many different origins of ME. And that what we're studying under the ME umbrella are many things. 

And that may be true, but the more that we sort of whittle it down to sort of the majority core aspects, the more likely we are to find what we're looking for, which is genetics, genetic signals. And the sooner we are, therefore, to advise drug companies on re-positioning their drugs, for example, because that's - just be clear, Decode ME is not just some arcane project, we want to demonstrate that there are real biomedical causes. And that there is evidence for particular follow-on experiments to be done and prioritized over others. And that's the key thing. It is setting the scene for the future, and accelerating future research.

Jackie Baxter  27:15  
Yeah, so it really is this delicate balancing act between involving the most possible people but also actually getting the funding so you can do what you want to do, and what you need to do, isn't it,

Andy Devereux-Cooke  27:27  
I've called it previously, hopefully, a launch pad of a study. So, you know, just like, you know, when a rocket is sent in space, it needs to be put onto its launch pad. So it can then take off, because it needs to be put in the right position. And then from there, there's all things that happen after it. And with luck, and with the community taking part, by taking part, we can hopefully build that launch pad that will then see, you know, our understanding of ME grow. And, you know, everybody who does take part, whether it's with the questionnaire or whether it's with the questionnaire and the DNA sample, everybody's helping us essentially build that launchpad. So everybody take part. Well, everybody with ME

Jackie Baxter  28:29  
Yeah, absolutely. And I think what I've kind of discovered or learned over the last couple of years of looking into research, in a way that I never really expected I would be, is that one research study is not going to solve every question and every part of an illness or a problem, you know, it's all bits of the puzzle, isn't it? And one bit of research will then trigger the next, and then the next and the next. And I think that was something that I didn't really understand. I just assumed that you did one research study, and that was it. Which is kind of naive, isn't it? 

Chris Ponting  29:11  
Naiveity is a good thing, actually, in particular for ME, and also long COVID. If you say actually, we know very little. But let's ask the most general question like, What are the genetic factors that predispose people to diagnosis? That's essentially what we're saying, for ME, then it's surprising what answers can come out. And we should dwell on that, in that if we only do experiments which whose answers don't surprise us, we really won't make advances at the speed that we need to. We need to make sure that we can be surprised, we do experiments that can look at everything at once. And that's what genetics and DNA research can do. 

And there are two things that we never anticipated when we designed this study that I wanted to say - the first thing is that we have this ability to feed the results of the questionnaire responses back to government, to the Department of Health and Social Care in England. And that is exactly what we're going to do. And it's this huge opportunity to amplify the lived experience and the voices of people up and down the country. So that's the first thing. 

The second thing, of course, is COVID. We didn't anticipate the COVID pandemic. But when it came along, we didn't say, right, many people are going to be diagnosed with ME because of COVID. And therefore, we'll chip away at the 20,000 people that we're trying to recruit for the DNA study. We said, No, we're going to keep hold of those 20,000 pre COVID people. And we're going to add another 5000 with people who had been diagnosed with ME post COVID infection. 

And so if there's anyone out there, who's got an MECFS diagnosis, post COVID, because  you've got a COVID infection, we need you actually, to do the questionnaire. And you'll then be part of a cohort of people who are quite underrepresented at the moment in our study. And we would love it, if people could come to decodeME.org.uk and write down and submit your experiences.

Jackie Baxter  31:45  
That's wonderful that you've been able to sort of add that as an extra - I was gonna say string to your bow, because a music metaphor is the only one I know. But it's adding to rather than taking from, isn't it? Which is wonderful. So yeah, let's Yeah, definitely put another plug out for anyone with a MECFS diagnosis, and that includes post COVID, head off to the website. Absolutely. And that's absolutely wonderful as well, that you're able to feed back to the government too. It's really, really great.

Andy Devereux-Cooke  32:19  
I think, from the ME patient community side of things, we sadly weren't surprised to see long COVID emerge as a thing, if you like. And obviously, that's with recognition that currently long COVID is a broad thing. Sorry, words escape me there. But I'm meaning that long COVID can be people who have suffered lung damage, all the way through to and including long COVID, which looks very similar to ME, even if the particular person in question doesn't get a ME diagnosis. Certainly, I think teasing apart - and I know that there is vigorous discussion about whether long COVID as a thing, again using that technical term, should be teased apart or should be kept together. But it's one of the reasons why we added the second arm so that we could see whether the people who were diagnosed with ME post COVID, whether they looked genetically similar, or genetically different to people who had their ME diagnosis pre COVID. 

And personally, I think that will probably - not only will it advance ME research, but I think it will be a useful thing to add into the hopefully ongoing and continuing long COVID research. You know, because the question of whether what looks to be ME in people with long COVID - Is that ME or is that something else? is certainly a valid question. It's a valid research question. As far as I'm aware, I'm certainly no long COVID expert. I'm not aware of anything that has proven definitively one way or the other. 

And equally, ME is something that is diagnosed after many triggers when they can be identified. So, many viral triggers are thought to be behind ME, but equally other forms of infection, for example, in a bacterial infection, are identified as the start of ME symptomology. So figuring out, are there subgroups in ME? My personal opinion is there probably is, you know, or at least it wouldn't be surprising if if there is, but equally with what is seen as long COVID at the moment, in from an outsider's point of view, it seems quite clear that there is, you know, these different groupings of symptoms, that just more information about the different types can hopefully only help.

Jackie Baxter  35:37  
Yeah, that will be really interesting to see what comes out of that. I think, as far as I know, that, I think, and we mentioned biomarkers earlier. And I think speaking of someone with long COVID, that is what is quite difficult to, you know, get a, quote unquote, definitive diagnosis, because, you know, many people didn't even have a positive COVID test. So, you know, oh, well, you have long COVID. But could it be something else? Could it be something else? Could it be something else? There's no like biomarker to say definitively yes or no. And it seems that that's quite similar for ME. So it obviously then makes it really difficult to compare the two because neither has this biomarker, if I've kind of understood that correctly,

Chris Ponting  36:24  
Some of the science is very interesting. None of that which has led all the way through to testing in the clinical sphere. But some groups like Doug Kell, and this has been replicated independently, has shown that there are micro clots in every long COVID sample that has been tested. Now microclots, of course, occur with other diseases. So it's not distinctive, but it be part of the diagnostic toolkit or should be at least as soon as possible, in my view.

Jackie Baxter  36:57  
Yeah, absolutely. So we've spoken about the questionnaires and the sample collection. And that is kind of ongoing, isn't it? But what happens when you've kind of collected all of that together, that's when an awful lot of work has to go into sort of analyzing, I guess?

Chris Ponting  37:19  
It'll be downhill from there. Actually getting the DNA data on our servers securely, is the biggest step that we need to take. And we still need 1000s of people to sign up, we are about halfway to where we would wish to be. And so anyone who knows anyone or they themselves who wish to participate, then please do at decodeME.org.uk. 

But what happens is, we compare the DNA letters of people with ME and these narrow set of criteria with the DNA letters from general public, essentially. And if there is a higher frequency among people with ME than in the general public, we found something. And we found a genetic predisposition, meaning that there's a gene there that has been indicated, whose tweaks genetically matter to whether you're getting an ME diagnosis or not. And if it's a mitochondrial gene, or if it's an immune gene, or if it's a neurological gene, it will start to tell us what is going on. So that's where the genetics comes in.

Jackie Baxter  38:45  
Wow. So if you are able to spot the gene or the genes, you're actually able to kind of nail down what sort of a gene that is, so what it's going to say what it's going to influence - when you were talking about the different types. 

Chris Ponting  39:00  
Exactly. So we hope to find five of these things. We don't know, of course, we don't, we may find none, we may find 10. But let's say we find five, and three of them are pointing out mitochondrial genes. I mean, or if they're immune gene or if they're neurological genes, because to date, there are lots of theories, lots of data. But I wouldn't say that they were strongly held evidence based explanations of ME. Neither are there for long COVID. 

So it's really important that we go back to basics, back to the origins of disease and the genetic predispositions, not because it's just some sort of academic pursuit know that because we can find the origins, the causes, the why at heart some people are more predisposed to ME or long COVID than others are.

Jackie Baxter  40:03  
That is amazing. That's literally just blown my mind how like precise you can like be with with it. That's absolutely amazing. As a non scientist,

Chris Ponting  40:13  
We're 20,000 protein coding genes in you and 20,000 in me. So scientists are making up stories about each one of them. And saying, I think it's gene A that has to do with ME, and I'm going to hold to that. And another one will say Gene T. And never the twain shall meet. But what we're doing is we're testing every single one of the 20,000.

Jackie Baxter  40:37  
That's fantastic. And then, as Andy said earlier, hopefully that will sort of act as a springboard or a launchpad into the next thing,

Chris Ponting  40:52  
When this was done for acute COVID, people who are in ICUs with COVID infection, when this was done with with those people who were very severely ill, and unfortunately, several people, lots of people didn't come through. But when this was done for those that pinpointed a gene, for which there was already a drug known, which then applied, reduced mortality - it can work, it has worked, and it is the right thing to do now, but only so that it expedites future research in a very targeted way. 

Jackie Baxter  41:30  
Yeah, absolutely. Have you any idea of the sort of studies that this might be a springboard for? Or is that something that you just can't look at until you've got the results of this one?

Chris Ponting  41:42  
Well, if as what happened with the acute COVID - If there is a pre existing drug, because it's passed all the tests for efficacy and, and toxicity already, that can go directly into trials. Now, of course, that's unlikely, you know, reality is often disappointing. But we have to know what the root causes are, in order to set off in the right direction towards our ultimate goal.

Jackie Baxter  42:20  
Yeah, so laying that groundwork. 

Chris Ponting  42:22  
Yeah.

Andy Devereux-Cooke  42:23  
Again, from a patient community perspective, will that be as quickly as we would like? No, not as quick as the community would like, and not as quick as we within the decode ME team would like, in fact, our very own project will take longer than than we would like it to. But it's important, kind of with the selection criteria and all the steps that we've taken with the study, we have focused on establishing the science as best we can, so that the results that when we do report them, are as reliable as possible. 

And sadly, that takes time. Frustratingly, it takes time. So we're trying to do this as quickly as possible, but also as scientifically robustly as possible. So, as a patient, I would love it if we had the answers tomorrow, whatever those answers might be, so that we can then take the next steps. But you know, for me,  for everybody else I know in the community and everybody else I don't know. You know, we need to have - it's almost quality before speed if you like

Chris Ponting  43:55  
if anyone's listening and you've already contribute to decode ME in your questionnaire, your DNA sample, to just Thank you. You know, we know how important it is for people to participate, because we hear it every day actually. But we don't often get the opportunity to thank people directly. So thank you.

Jackie Baxter  44:15  
Well, thank you both so much for joining me today. It's been an absolute pleasure. So if you fit those three criteria of - correct me if I'm wrong here - and ME diagnosis, UK based and 16 Plus, if you fit that head to the website, decodeME.org.uk, which I will put in the show notes. Yes, I'm getting thumbs up that's awesome. Please do head there and and fill in the questionnaire. So yeah, all the best with the study, and maybe you'd be willing to chat to me again when you have some results - I'd be really excited to hear about it.

Chris Ponting  44:52  
I'd be delighted. Thank you.

Jackie Baxter  44:56  
Thank you so much. Both of you. 

Andy Devereux-Cooke  44:57  
Thank you. 

Chris Ponting  44:58  
Thank you, Jackie.

Transcribed by https://otter.ai