DecodeME 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 More

DecodeME – 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 More

DecodeME’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 More

Why 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 More

DecodeME 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 More

Webinar 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

DecodeME project update

Quick summary:  DecodeME has welcomed its first test participants and has received valuable feedback from them. We are working to make improvements to the questionnaire after receiving feedback from these participants in the testing phase. We are creating a new online system for the online questionnaire as we are no longer working with the questionnaire system adapted…

Read More

Why do we need a genetic study like DecodeME?

People with ME/CFS want effective treatments. To find treatments, researchers must first find the causes of ME/CFS. Despite having several promising lines of enquiry, the causes of ME/CFS remain unknown. A genetic study can help because DNA studies are particularly good at identifying the root causes of disease. The problem: biological differences might not reveal…

Read More

DecodeME testing phase has launched!

Since DecodeME – the biggest ever study into ME/CFS – was announced, tens of thousands of people have been patiently waiting to take part. A project of this size and nature takes an extraordinary amount of work. Delays and setbacks are inevitable but, in January 2022, we launched the study – starting with a small…

Read More