DecodeME

DecodeME is a very large UK-based study to investigate DNA profiles of people with myalgic encephalomyelitis/chronic fatigue syndrome, in comparison to healthy controls. DecodeME is also known as the ME/CFS Biomedical Partnership, and is a collaboration between researchers, people with ME/CFS, their carers and the general public.

DecodeME is the largest ever study investigating biological differences in people with ME/CFS, and will look at any genetic factors that may be linked to the causing ME and how the illness works.

Funding
It is funded by the £3.2 million from the UK's Medical Research Council and the National Institute for Health Research

Patient criteria
DecodeME planned to recruit 20,000 ME/CFS patients, initially from the UK, for a genome-wide association study (GWAS). Recruitment was planned to begin in 2021, but then delayed until 2022. Patients were encouraged to give their contact details in advance, including before the study received funding or ethics approval.

Multiple selection criteria will be used to decide which patients to enrol in the study; patients must meet either the Canadian Consensus Criteria for ME/CFS, or the broader Systemic exertion intolerance disease criteria. Other criteria include that patients will need to be adults aged at least 16, and will need to have post-exertional malaise.

Patients who only meet the former UK NICE diagnostic criteria (2007-2021), the Oxford criteria (which has been recommended for retirement), or the Fukuda criteria, and people who have idiopathic chronic fatigue will not be included. People who have previously recovered will also not be included.

Partners
The UK charities involved as partners are Action for ME and Forward-ME. The other partners are the Medical Research Council Human Genetics Unit, and the UK's National Institute for Health Research.

Timeline
21/NW/0169 Date of REC Opinion
 * Jan 2022, phase 1 due to begin on Jan 31st with 50 severe and very severe ME patients plus 500 randomly selected from online participants
 * Jun 14, 2021, Ethics approval granted. REC reference 21/NW/0169.
 * 2021, Beyond the scenes update states that data will be analyzed by Thermo Fisher, first set due back by end of 2022. Data will takes months to analyze, possibly some by "halfway through 2023". Funding has beeb increased to add an extra 5000 people to the study who got ME/CFS following Covid.
 * Nov 2020, DecodeME announces that London School of Hygiene and Tropical Medicine will no longer be involved. Co-Principle Investigator Dr Luis Nacul of LSHTM will no longer be an investigator, and Dr Eliana Lacerda wil no longer be on the Trial Management Group.
 * Nov 2021, Announcement that recruitment has been delayed until 2022, and will start with a small invited group first


 * Aug 26, 2020, Official start expected in "very early 2021".
 * Jul 2020, DecodeME website launched, patients able to sign-up for news and give contact details, study recruitment planned to start on Mar 2021

Investigators

 * Chris Ponting - Principle investigator
 * Sonya Chowdhury - Co-investigator (PPI), CEO of Action for ME

Patient and Public Involvement Steering Group

 * Sonya Chowdhury, Action for ME CEO, co-investigator (PPI) on the DecodeME Trial Management Group, founding charity member of the UK CFS/ME Research Collaborative (CMRC)
 * Andy Devereux-Cooke, co-founder of the Science for ME
 * Margaret of Mar, 31st Countess of Mar, representing Forward-ME
 * Jim Wilson, parent and carer, Associate Member of the CMRC, and former Convenor of the CMRC Patient Advisory Group
 * Emma Northwood, ME Association
 * Sian Leary, advocate with Sheffield ME & Fibromyalgia Group, the ME/CFS Priority Setting Partnership (PSP) and MEActionUK
 * Claire Tripp, parent and carer involved with MEActionUK

Trial management group

 * Professor Chris Ponting, Principal investigator
 * Sonya Chowdhury, Action for ME CEO, co-investigator (PPI)
 * Andy Devereux-Cooke, from the PPI

Science Advisory Board

 * Professor Stephen Holgate
 * Professor Martin Tobin
 * Professor Julia Newton
 * Professor Brian Hughes
 * Professor Benedicte Alexandra Lie

Publications
None yet.

News and articles

 * Jun 2020, UK to launch genetic study of Chronic Fatigue Syndrome - The Guardian
 * Jun 2020, Chronic Fatigue Syndrome - search for genetic clues - The Times
 * Jun 2020, Patients, scientists and advocates celebrate £3.2m funding for DecodeME, the largest ever ME/CFS DNA study - 25% ME Group
 * Jun 2020, £3.2 million for largest ME/CFS DNA study ever - #MEAction
 * Jun 2020, DecodeME – the largest ever ME/CFS DNA study - ME Research UK

Webinars

 * 18 Dec 2020, DecodeME Winter Webinar
 * 14 Apr 2021, DecodeME April Webinar

Online presence

 * Website
 * Facebook
 * Twitter

Learn more

 * FAQs - DecodeME
 * UK Biobank genetic and biomolecular ME/CFS study