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

Initial questionnaire analysis and deadlines – 12th October 2023 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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Webinar 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…

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DecodeME 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…

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