DecodeME launches data access process

29 April 2024 With your help, DecodeME has built the world’s largest data set on ME/CFS. 86% of DecodeME participants consented to sharing their de-identified data with other researchers and 95% of participants consented to being recontacted for new research projects. By allowing other researchers to access this data, we hope to accelerate research towards…

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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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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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