DecodeME questionnaire webinar: Taking part in DecodeME: the questionnaire


Hello, all. I’m just going to share my screen, and hopefully you’ll see my slides now. So my name is Chris Ponting. I’m a human genetics researcher at the University of Edinburgh, and I’m very excited because we’re now almost at the full launch of DecodeME and it feels as if we altogether have climbed several mountains to get to this exciting position.

So you may have followed previous webinars where we’ve talked about the DNA side of the decode in the project. So if you go to these other webinars, you’ll see how we have designed the project so that people who are selected to be part of that side of the project receive the sample collection kits and then donate the saliva sample, put it back in the regular post, and off it goes for the processing. And eventually, we in Edinburgh get the data and analyse them. We’ll be comparing people with M.E. and their DNA against control individuals whose data we already have from the UK BioBank.

So today I want to say something a bit different from that. I want to talk to you about three things. I want to talk about how taking part in DecodeME is more than donating DNA. That’s the first thing. Then the second thing I want to say is that your questionnaire answers are important to us and important beyond DecodeME. And finally, I want to say what a challenge it is to recruit the number of people – I’m going to say 50,000 people in the UK with M.E. – who we need to complete the new DecodeME questionnaire. So we’ll need everyone’s help, your help, please, to help us achieve this very difficult goal.

So let me start by talking about genetics and to say that we know already, we know that more than one gene is disrupted in people with M.E. There will be many genes, and each of those will contribute just a little to someone’s risk of being diagnosed with M.E.. This gives us a spectrum. We know that M.E. genetics, therefore, is not black or white. It’s a spectrum. And it gives us this scientific problem. Because it’s a spectrum, where does our study DecodeME draw the line? On one side will be people who are included in the study with respect to the DNA, and everyone is included in the study with respect to the questionnaire and questionnaire answers. We have to draw a line between those two, we have to draw a line somewhere. And the reason is that all scientific studies are based on criteria and we have to stick to the science.

So the obvious question is, well, what criteria? Well, this was decided a long time ago, November 2019 altogether in a room, scientists, people with M.E., carers, funders, we all met and decided to use the IOM and CCC criteria for people who have been clinically diagnosed. And that went off to peer review and peer reviewers said that that is exactly the right approach. So people with M.E. will be on one side of the line, we will be asking you for your DNA sample. What we never knew, given the criteria, was what fraction of people we would ask for their DNA. We didn’t know this until we started asking people questions through the new DecodeME questionnaire. So that fraction that we asked the DNA could be any number, it could be a small fraction or it could be a much larger fraction. We actually never knew. Turns out from the testing that Sonya was talking about, it’s about 60% and 60% of you who complete questionnaire and consent to participate will split the science spit for DecodeME and donate your saliva sample for DNA, that will be read out and we can then compare against healthy controlled DNA.

But my message really today is for everyone, everyone in this circle, not just for those who donate their DNA to DecodeME. We actually need about 50,000 people, and actually probably more. 50,000 people in the UK with M.E. to successfully complete DecodeME and its objectives. So by taking part, every single person who completes our questionnaire provides information that I think will be hugely valuable to science. Well, why? Well, it could reveal subgroups. As I said, it’s a spectrum. So it may be that there will be subgroups where there’ll be one group will have a particular genetic cause and another group will have another genetic cause or set of causes. And your answers to the questionnaire would enable us to do that analysis. And then also your answers are a powerful record of your symptoms and your life experience, which we don’t take for granted.

So if you provide consent, we then have a vast database with thousands of people’s life experience which will be available to researchers to better understand what your lives are, what living with M.E. means to you. When I say that, I have to say that you will perhaps always remember that we will always protect your data and provide your data to researchers in an anonymous way, and that’s very important to us and to you. So many people, researchers, clinicians, government, society, large friends, families; I’ve heard that they misunderstand what it means to live with M.E. Single anecdotes provide powerful testimonies. But it’s the big data, in my view, that counts. And it’s the transformative power of that data, the tens of thousands of people living with M.E. that together, I don’t think we should underestimate. So, for example, with this vast data set in hand, DecodeME can provide more precise evidence on the scale, the demographics, the comorbidities, the severity and the impact of living with M.E. for people in the UK, who will help us create the world’s biggest set of data on M.E., helping researchers and other researchers understand the disease better. It might help also to show politicians and doctors who often misunderstand the illness, how disabling the illness is. So my message is taking part in DecodeME is more than donating your DNA, and as I said, 60% of you will be asked to donate your DNA. But this is a large number. 50,000 people of people in the UK with M.E. is about one fifth of all people with M.E. in the UK. Now, one thing I’ve learned about you all, is how committed and tenacious you are, and without you, DecodeME will be nothing. So this is your study, it’s about you, with you, and we as scientists will deliver the best possible project to provide the best chance of providing new research directions leading to effective therapies.

When you take the questionnaire, on average, when you complete it, it will take you about twelve minutes to complete if you’re mildly affected, and 20 minutes if you’re severely affected, on average. It may take some people much longer than that so we also have people on standby to help with completion of the questionnaire. And it would help us enormously if you could try out the online questionnaire first. And if this doesn’t work for you, that’s fine. Please ask for a paper questionnaire or ask for someone from the 25% group to help you to complete the question. So when we launched fully in September, please do complete the question and tell everyone you know and ask them to do so too. We need a snowball effect where everyone from up and down the country know about DecodeME and participate, and know why it’s important to participate. Thank you very much.



Thank you, Chris. I just want to remind everybody that you can ask us questions. We’ll try our very best to be able to answer them. We’ve got 200 participants here on Zoom and we’ve got others that have joined us on Facebook Live, and you’ll be able to share this or view this afterwards, particularly if an hour is too much for you to watch, all in one go.

So, before we go to Questions and Answers, I’m going to hand over to Sian, who’s going to tell you a bit more about the questionnaire.