Blog
A visit to the UK Biocentre
Claire Tripp – Patient and Public Involvement Team Member Last month, I visited the UK Biocentre in Milton Keynes, along with Prof Chris Ponting and Dr Diana Garcia, the DecodeME project manager at the University of Edinburgh. The purpose of the visit was to personalise the work they are doing at the Centre for…
Read MoreWhat We Achieved in 2022
As we resume work for the year ahead, we want to take the opportunity to look back on 2022 and see all we have achieved so far in this study. Summary: We opened phase 1 to a few hundred paper participants in January. Their feedback led to us rewriting and improving the study questionnaire. …
Read MoreWebinar recording and transcript – Taking part in DecodeME
Taking part in DecodeME – 16th November 2022 webinar. With Sonya Chowdhury and Chris Ponting. This webinar updates on the study’s progress since recruitment was launched in September 2022, talks through every step to participating, and includes a Q&A session. Watch the recording: Direct link: Watch the recording on YouTube Listen to the audio: DecodeME…
Read MoreDecodeME Questionnaire – Shining a light on the ME/CFS community
The DecodeME questionnaire is creating a large dataset from tens of thousands of people with ME/CFS like you. It is collecting a wealth of information on important aspects such as common symptoms, length of illness, comorbid health conditions, severity and age to name only a few. The information collected from people’s responses is invaluable…
Read MoreDecodeME 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…
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