Blog
DecodeME participation and criteria for the DNA stage
An audio recording of this blog post can be found below: DecodeME the ME/CFS study · DecodeME participation and criteria for the DNA stage blog audio We know how important DecodeME is to people with ME/CFS and we are grateful to the patient community for such a positive reaction to our launch. We have…
Read MoreWeek One of DecodeME’s Launch
Over 10,000 people signed up to take part in our first week with over 7,000 already completing the questionnaire. We’re delighted by the huge number of people supporting the study in this first week and we’d like to thank you for your patience as we work to respond to emails and phone calls. …
Read MoreStatement on Launch Day
We want to let you know that DecodeME has launched and fully opened recruitment. In light of Her Majesty Queen Elizabeth II’s death and this period of national mourning, we seriously considered how best to proceed with the planned launch of this study today. We recognise how much this study means to people…
Read MoreWebinar recording and transcript – The DecodeME Questionnaire
DecodeME webinar from August 2022 on the DecodeME questionnaire. Sonya Chowdhury, Chris Ponting and Sian Leary discuss the study launch and the process of taking part. Learn all about the questionnaire stage and the work that has been done with PPI to design it. The webinar also includes a Q&A session towards the end. Watch…
Read MoreDecodeME study protocol published in BMC Neurology
The 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 MoreDecodeME – A ‘Treasure Map’
By 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 MoreDecodeME’s online testing phase
An 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 MoreWhy DecodeME Matters To People With ME/CFS
ME/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 MoreDecodeME puts people with ME/CFS at the heart of all its decisions
By 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 MoreWebinar recording and transcript – The science behind DecodeME
Chris 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 More