Document is current

Article History

Received: 25 March 2022

Accepted: 17 June 2022

First Online: 19 July 2022

Declarations

:

: The DecodeME study is sponsored by the University of Edinburgh and has been reviewed and given a favourable opinion by the North West – Liverpool Central Research Ethics Committee (21/NW/0169). In the consent form, participants can choose to allow DecodeME (i) to receive medical record data from the NHS, for DecodeME use only; (ii) to share some of their questionnaire responses and DNA data with researchers doing other worthwhile studies (researchers analysing the data would not know participants’ identity); and (iii) to contact them in future about DecodeME-approved studies that require data and/or samples. Participants can withdraw from further involvement of the study at any time, without giving a reason, by contacting DecodeME by phone, email or letter and asking for no further use of their data and sample.

: Not applicable.

: ADC is a committee member of the Science for ME online support discussion forum. CD is employed by Action for ME. CPP is Deputy Chair of the ME/CFS Research Collaborative and has PhD studentships funded by Action for ME & the Chief Scientist Office (Scotland), and by ME Research UK. CS is Medical Adviser to the ME Association (unpaid). DBo is a Director (unpaid) of Beyond Bare Minimum CIC that helps disabled people get and maintain remote jobs. JW is on the ME/CFS Research Collaborative Patient Advisory Group and receives travel expenses for participation in Board Meetings. MA holds shares in Pfizer, BioTech, Merck and AstraZeneca. PM served as Trustee of Action for ME (November 2018 – January 2022). SC is CEO of Action for ME; Chair, World ME Alliance; and, Non-Executive Director, Curo Group.