Updates

Inviting More Participants to Donate DNA

June 16, 2023

26 June 2023   An audio recording of this blog post can be found below: DecodeME the ME/CFS study · Audio blog recording – Inviting more participants to donate DNA   DecodeME can now invite even more people to donate their DNA.   This is because we will apply an additional scientific method to ensure…

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Our GWAS data analysis plan

March 27, 2023

Our GWAS data analysis plan  Please note this blog was updated on 26 Apr 2024, after the release of DecodeME GWAS data analysis plan version 2. For details, please see end of this blog.   What is a GWAS data analysis plan? A data analysis plan outlines, in detail, how we intend to conduct our…

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A visit to the UK Biocentre

February 20, 2023

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…

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What We Achieved in 2022

January 31, 2023

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.  …

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Webinar recording and transcript – Taking part in DecodeME

December 8, 2022

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…

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DecodeME Questionnaire – Shining a light on the ME/CFS community

September 30, 2022

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…

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DecodeME participation and criteria for the DNA stage

September 23, 2022

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…

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Week One of DecodeME’s Launch

September 16, 2022

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.  …

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Statement on Launch Day

September 12, 2022

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…

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Webinar recording and transcript – The DecodeME Questionnaire

August 19, 2022

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…

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