DecodeME



DecodeME is a very large UK based study to investigate DNA profiles of people with myalgic encephalomyelitis and 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

Recruitment
DecodeME plans to recruit 20,000 ME/CFS patients, initially from the UK, for a genome-wide association study (GWAS). Recruitment will begin in 2021, but patients are encouraged to give their contact in advance.

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 current UK NICE diagnostic criteria, 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.

Investigators

 * Chris Ponting

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 MEAction UK
 * Claire Tripp, parent and carer involved with MEAction UK

Trial management group
Sonya Chowdhury, Action for ME CEO, co-investigator (PPI) on the DecodeME Trial Management Group,

Management Group

 * Professor Chris Ponting
 * Sonya Chowdhury
 * Andy Devereux-Cooke

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