Updates
(SONYA) Thank you, Sian. And thank you, Chris. We’ve got lots of questions coming in, which is fantastic. As always, we’ll try our best to answer as many of them. But just to remind you as well, we do have a Frequently Asked Questions on the DecodeME website, so if you want to, you can…
Read More(SIAN) Hello, everyone. Fantastic to be speaking to you all today and see so many people watching. My name is Sian Leary and I’ve lived with M.E. for over nine years now. I spent the first four to five years severely affected, but I’m fortunate to be in a better period at the moment, and…
Read More(CHRIS) 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…
Read More(SONYA) Hi, everybody. Welcome to another DecodeME webinar. My name is Sonya Chowdhury. I’m Chief Executive of Action for M.E., and I’m also part of the DecodeME team, so I’m going to be sort of chairing the webinar today. I’m going to start off by giving you a bit of an update and then I’m…
Read MoreThe DecodeME study protocol has been accepted for publication by BMC Neurology. By publishing our study protocol in this way, we make sure that the design is transparent. This allows other researchers around the world to replicate and build upon the study with their own cohorts. What is a protocol? The study protocol is an…
Read MoreBy Professor Chris Ponting and Simon McGrath An audio recording of this blog post can be found below: DecodeME the ME/CFS study · A Treasure Map “What is ME?” and “How can it be treated effectively?” Everyone in DecodeME desperately wants answers to these questions. At DecodeME we have always thought that this study…
Read MoreAn audio recording of this blog post can be found below: DecodeME the ME/CFS study · DecodeME’s online testing phase We want to let you know the good news that DecodeME is beginning the online testing phase. Quick summary: Our new DecodeME questionnaire has received ethical approval. We start online testing on June 15th 2022 with 500 participants selected…
Read MoreME/CFS advocacy is a non-stop effort. Many advocates and online campaigners work tirelessly year-round to raise awareness of this significantly debilitating medical condition, and some have done so for decades. However, the annual ME Awareness Week in May is a time when the whole ME community and ME charities band together to advocate for change…
Read MoreBy Claire Tripp and Sian Leary (patient and public involvement team members) [An audio recording of this blog post is provided below] DecodeME the ME/CFS study · DecodeME puts people with ME/CFS at the heart of all its decisions [blog post recording] Believe it or not, there’s no minimum standard for patient and public involvement…
Read MoreChris Ponting and Shona Kerr talk about the science behind the DecodeME study and their roles in the project. Chris explains the purpose of genome-wide association studies (GWAS) and how DecodeME will benefit ME/CFS research. Chris and Shona then answer your scientific questions about the study. Watch the recording: Direct link: Watch the webinar recording…
Read MoreWatch our webinars to find out more
A partnership between
