DecodeME Winter Webinar (Part 2)

Below is the transcript for the next 15 minutes of the DecodeME Winter Webinar.

Part 1 (the first 15 minutes of the Webinar) is already available.

More information, including how to sign up, can be found at

Benefits of Solve ME‘s involvement and their Registry

Sadie: So just to answer Chris’s question [final question from Part 1 transcript] about being able to package up the information and giving it to your doctor or your healthcare team. It’s something that’s really important to us in the designing of the Registry. We’ve actually been able to do that for a few individuals in the Registry, where we take all of their data that they’ve entered and were able to package it up. It really provides something that’s seen as a little more objective and is well received by doctors and healthcare teams. It’s definitely something that can help with diagnosis.

In terms of the symptom tracking app – how it works is that you can enter symptoms that you’re experiencing. You can track them on a frequent basis. The default is every three days but you can change it to whatever frequency you want. And you can overlay that with what’s happening in your life. You can track whether you’ve had a stressful day, or whether you’ve taken too much exercise. And then you can graph all of that together. There’s a functionality where you can look at how your symptoms change over time, but you can also monitor what things have happened in your life that may be affecting your symptoms. You can look at Post Exertional Malaise. What led up to it, how long it lasted. You can start to look at patterns.

And the feedback we’ve had from the community is that it’s a really compelling way for them to be able to monitor what’s going on with their health and maybe make adjustments. I’m excited for the community to be able to play around with it. People are really enjoying using it.

Opportunities for people with ME who aren’t eligible for the study.

Sonya: Something to say around the inclusion and exclusion that Andy mentioned earlier on [see Transcript from Part 1]. We know that there will be some people who have a diagnosis of ME, have symptoms of ME, and have ME, but may not be sent a spit kit through this study. That doesn’t mean people don’t have ME. But there are specific research criteria that we need to apply to this study. And so we will have to be a bit selective, and that’s a really important part of what we’ll be doing as a team. But there is still an opportunity for you to be involved in lots of research. So we’re really encouraging everybody, even if you haven’t had a diagnosis, you can still go to the app when it’s launched with the DecodeME study, you can fill in our questionnaires, you can access the symptom tracker, and your data (if you consent) will still be hugely invaluable. So everybody can participate in this even if you’re not selected specifically to receive a spit kit.

How did you get involved in this study and ME research?

Andy: I’m the most obvious really. I’m a patient, so all of this is very personal to me. While I’m largely housebound (even more so obviously due to covid) I was able to get out occasionally, but most of my time is housebound. Obviously I have a better level of functioning than some of the many housebound patients out there. So I was able to get involved in various little projects, and along with a small team of other like-minded patients. I’m a co-founder of the Science for ME forum, where we look to, as the name suggests, focus on the science of ME. And from there I basically started reaching out to researchers and that led me to where I am today. What I’d ask other patients out there – we can all get involved in one form or another. So those with better functioning can get involved more deeply but even just on social media. Shares and likes can be so valuable so please do your bit.

Chris: So I knew this guy at university called Simon McGrath. I knew him when he was well. And he didn’t stay well. He got ill, very badly ill, with ME. I felt I could do nothing. I was a scientist, sure, but I wasn’t really able to help him. Afterall I’m not a clinician. How can I help someone like him and so many others across the world? Well eventually I found myself doing human genetics and the technology has changed so dramatically in the last ten/fifteen years that identifying and pinpointing the genetic factors that tip the balance towards whether someone gets ME or not – that technology has been applied to so many different diseases. And it just appeared to me quite obvious that it should be applied here to ME.

And around about that time, or just before, I joined Stephen Holgate’s CMRC [UK CFS/ME Research Collaborative] and eventually together we kept on knocking on the door of all the funders, and answering all their questions, and sending them documents, and arguing the case for a genetic study of ME. And finally last year they said to us “Well put it in an application”. And by that time we had been working alongside everyone here and we had all of the expertise to hand to do that study. And so this is where we are now. And I’m all in on this project. I want it to work. I want it to work fast. For all of the reasons that everyone out there knows about. And everyone I talk to about this project, who are in this project, are of the same mind and so it’s importance cannot be understated and we know that.

Sadie: For those of you who don’t know, I come from Pharma. I worked in clinical development in Pharma, predominantly in the cancer setting. And I saw over the last ten or fifteen years how dramatic the change in our understanding of cancer has been as a result of big data. Breast cancer used to be a single disease and now people know that it’s ten or fifteen different diseases. And that’s really because of the amount of information that was available; to be able to look at the different types and identify where different treatments could work.

Coming to this organisation and really being horrified at how little attention was being paid to this disease, and seeing some of the heterogeneity, and seeing that some people may be responding to a treatment but when you test it in a clinical study it doesn’t play out, that to me just speaks to heterogeneity. You saw that in cancer in the early days. In the setting up the Registry, my goal was really to just be able to have enough information to be able to see what was going on. And be able to understand why some people respond to a certain therapy or why some people recover slightly or why some people don’t. You just need information. It’s really exciting to see it come to life. We have 2000 people in the Registry as of this week. And we have more than a million data points. It’s going to become such a powerful piece of information, that when you start to work with researchers like Chris, to then take all of that information and look at the genetics, it’s just going to be incredibly powerful and unlock a lot of the mysteries that have surrounded this disease for too long.

Sonya: And from my perspective, I started as Chief Executive at Action for ME just over eight years ago. I think it was my second week when I had a phone call from Sir Stephen Holgate saying ‘We’re setting up this research collaborative. Your predecessor was helping me. You’re in now. Who are inviting?’ I’d never been involved in science before and was highly intimidated by this whole new academic world that I was dipping my toe into.

But over the last seven/eight years it’s been fantastic to work with people like Stephen and Chris, and with the patient advisory group that’s been set up for the Research Collaborative, to actually drive this research agenda forward. I think it’s appalling that people with ME have been left without research. The funding hasn’t been there. And we have had lots of meetings and discussions behind closed doors advocating for the opportunity to have a study like DecodeME. So to get to the point where we were invited to develop a partnership, and then be asked by Stephen and Chris to be involved in the partnership, is a great opportunity.

Some of you will also know that I have a son who turned 18 this year who was diagnosed with ME the year after I joined the charity. So whilst I was hugely passionate before about ME, research, and supporting people with ME, and creating change for the future, it has become my life. So I cannot tell you how excited I am that we’re at the point now of being able to start talking about recruiting people into this study.

How and when will people be able it access the Solve ME app?

Sadie: So you might have noticed that currently within the Registry, which is the gateway to the app, enrolment has been limited to the US [United States]. That’s partly because we wanted to work collectively with this team in the U.K. to figure out how the DecodeME study was going to work and how our partnership was going to work. I think the plan is to open the Registry globally in the first part of 2021, so probably within the first quarter. And access to the app will be available then. But that’s still in discussion with this team as to how we’ll coordinate with enrolment for DecodeME, because obviously this study is the priority and we want to make sure that individuals are signing up for this study and we can get to that 20,000 [participants] number as soon as possible.

Sonya: And what we’ll be doing in May is launching the recruitment. So if you’ve signed up for updates you’ll get information straightaway. We’re really hoping that as many people go through the app process and enter their details so that we can get ‘spit kits’ out and hopefully start the analysis sooner.

Will the app keep my personal data safe, and will Brexit at affect that?

Chris: The app will be under the jurisdiction of the United Kingdom. It will be used under GDPR, so we’re all okay with the spectre regulations. The data transfer into the University of Edinburgh is under those regulations, and we will be compliant to those regulations inside the University of Edinburgh. We’ve worked all of this out. It will be safe. We have data protection protocols that we work to, which we’ve been writing up in the last few days actually. And so we take this issue incredibly seriously and I know that Sadie does too because we’ve already had discussions about this point with respect to the Registry and the app.

Sadie: Yes exactly. The registry and the app are GDPR compliant. Also we have, and Chris will have for this study, IRB approval. You call it Ethics Committee, I think. But it’s the group of people who review the research and determine whether or not everything is secure and aligned with the privacy laws and regulations. We take it incredibly seriously. And although we’re a US organisation we have legal counsel in the U.K. who we have worked with in the development of the platform to make sure that all of the local privacy laws are met with how we secure the data.

Andy: On a connected point, in case there’s anybody out there thinking [they] want to take part in DecodeME but [they’re] not so convinced on the Registry (we hope that you will be in time) it is possible to go through the registration process for DecodeME and not take advantage of the further registry app. You can just simply register for DecodeME and that can be your lot if that’s all you want to do. Obviously one of the reasons why we’re teaming up with Sadie is that we believe in what they offer via the Registry and the connected app.

I was talking about patients getting involved. Getting involved in the Registry as a further step just enhances the impact that you can have. And while it may not be immediately apparent to you, the build-up of data is extremely valuable. So for those people that were perhaps thinking that’s a bit much for [them] that’s fine you can just apply for the study and leave it there. But for people who are thinking that’s something of interest, we’d very much encourage you to take that additional step. Sign up to the Registry and join the global effort that way.

Published by Anna Redshaw

Blogging about life in the slow lane with an invisible, chronic illness. I wasn't always a sick chick so this is somewhat of a life changing experience!

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