DecodeME completion date extended to August 2025

07 March 2024   DecodeME was due to be completed by August of this year Extraction of the DNA from samples has taken far longer than anticipated Our funders have agreed to a funded timeline extension DecodeME will now be completed before August of 2025 – results will be released as soon as possible before…

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Webinar recording and transcript – Second questionnaire and data access process

14 December 2023 – Second questionnaire and data access process webinar With Sonya Chowdhury, Chris Ponting and Andy Devereux-Cooke This webinar reviews the study’s progress in 2023, plans for a second questionnaire and data access process, and includes a Q&A session. Watch the recording: Direct link: Watch the recording on YouTube Listen to the audio:…

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Coming soon – DecodeME’s Second Questionnaire

05 December 2023   We wanted to give you a quick heads-up on our plans for a second questionnaire.   We would like to thank all participants for their amazing help to date and to ask for their continuing support with this additional activity.   All existing participants, who have already completed the first questionnaire,…

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Closing participant recruitment – Thank you!

15 November 2023   An audio recording of this blog post can be found below: We have now closed all participant recruitment and would like to thank everyone who has given of their precious time and energy to become a participant in DecodeME.   Over 26,000 people have signed up and completed their questionnaire, and…

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Webinar recording and transcript – Initial questionnaire analysis and deadlines

12 October 2023 – Initial questionnaire analysis and deadlines webinar With Sonya Chowdhury, Chris Ponting and Sian Leary. This webinar updates on the study’s progress, some preliminary findings from initial questionnaire analysis and includes a Q&A session. Watch the recording: Direct link: Watch the recording on YouTube Listen to the audio: DecodeME the ME/CFS study…

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Initial findings from the DecodeME questionnaire data published

24 August 2023   We’ve analysed questionnaire answers from the first 17,000 DecodeME participants and the results have been published by NIHR Open Research – read the paper HERE. We are still recruiting participants and will continue to collect information as more join the study – take part HERE. Main findings from our analysis: Being…

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Inviting More Participants to Donate DNA

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

DecodeME’s GWAS data analysis plan (version 1) is available to read on our website (here). What is a GWAS data analysis plan? A data analysis plan outlines, in detail, how we intend to conduct our DNA analysis (our Genome-wide association study – GWAS). Over the coming months, we will continue to refine our data analysis…

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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…

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What 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.  …

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