MRC Human Genetics Unit
Medical Research Council Human Genetics Unit

DecodeME study protocol published, a template for Myalgic encephalomyelitis research

DecodeMe, the largest genetic study for Myalgic encephalomyelitis (ME), publishes its protocol outlining the design of the research study: July 2022


Myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) is a devastating long-term condition which, according to last estimates, affects about 250,000 people in the United Kingdom. Disabling symptoms worsen after minimal physical activity and include excruciating pain, extreme fatigue, poor memory and concentration. It is not known what causes the condition or how it can be treated efficiently.

DecodeME is a co-production between the University of Edinburgh, with Professor Chris Ponting as Chief Investigator, Action for M.E., other charities, and people with lived experience of ME/CFS.  

I have been waiting for years for a top-class study like this that can help get us real answers

Simon McGrathseverely ill with ME/CFS since 1994 and ME research blogger

Scientists and people with lived experience of ME/CFS worked side-by-side to design this study, make it accessible for people with a wide range of symptoms, and support participants throughout their journey, from signing up to participate until providing their DNA samples.

The study has been awarded funding by the Medical Research Council and National Institute for Health Research and was launched earlier this year.   

The DecodeMe study protocol is outlined and made public for the first time in a paper published recently in BMC Neurology.

About the study

The study aims to collect DNA and information from more than 25,000 people with ME/CFS. Of these participants, 20,000 will be those who had a clinical diagnosis prior to the COVID-19 pandemic and the other 5,000 will be diagnosed cases as a result of SARS-CoV-2 infection.

Genetic information donated by the participants will be compared to that of unaffected individuals in the UK Biobank to search for significant genetic differences within the group.

The DecodeME Study has been driven by people with lived experience of ME and publication of our protocol provides an opportunity to really outline how this has driven the science. There have been many changes to what we do and how we do it as a result of this patient and public involvement and the impact is more than apparent in the quality of the study design.

Sonya ChowdhuryCo-investigator and CEO, Action for M.E.

The protocol contains the full description of the study and outlines its objectives and how it is being carried out. It would serve as a ‘manual’ for the research team and ensure they follow the same method.  

By publishing the DecodeME protocol we ensure that other researchers can replicate our genetics study.

Professor Chris PontingChief Investigator and Chair of Medical Bioinformatics, University of Edinburgh

The information gathered from this study has the potential to uncover the genes, cells and pathways that play a role in causing ME/CFS, helping researchers, clinicians and people living with the condition finally understand the disease and ultimately find treatments.


Protocol on BMC Neurology

About DecodeME