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  • Research type

    Research Study

  • Full title

    DecodeME: A genome-wide association study of myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS)



  • Contact name

    Chris P Ponting

  • Contact email

  • Sponsor organisation

    University of Edinburgh

  • Duration of Study in the UK

    4 years, 0 months, 0 days

  • Research summary

    Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a chronic disease characterised by substantial reduction or impairment of activity levels associated with high levels of disability and poor quality of life. It affects an estimated 250,000 people in the UK and has a high cost to patients, the economy and the NHS. Nevertheless, we know less about the causes of ME/CFS and how to treat it effectively than we do about many rarer and less disabling diseases.

    Our project seeks to reveal differences in a person’s DNA (including their genes) that alter their risk of developing ME/CFS. These changes in risk are typically small and so to find them we need to study a large number – at least 20,000 – of people with ME. We use a genome-wide association study (GWAS) design because it has already helped uncover the biological roots of many other complex diseases and it is ideal for discovering genetic causes of disease and new biology. We will find out whether the genetics of ME/CFS overlaps with other diseases, and also predict genes, biological pathways and cell-types directly implicated in ME/CFS. In this way we intend to generate strong scientific leads that researchers can pursue with new experiments. We hope this work will ultimately lead to the development of diagnostic tests and targeted treatments.

    Using orchestrated marketing and PR campaigns developed with Patient and Public Involvement (PPI), we will build a research cohort of 20,000 people – each clinically diagnosed with ME/CFS and who meet the widely-used Canadian Consensus or IOM/NAM criteria. A system will give researchers easy access to DNA data, questionnaire answers and other information on this large number of people, to allow them to design better and cheaper experiments. The data will be appropriately anonymised and held safely and securely.

  • REC name

    North West - Liverpool Central Research Ethics Committee

  • REC reference


  • Date of REC Opinion

    14 Jun 2021

  • REC opinion

    Further Information Favourable Opinion