Volunteering for Medical Research

The DecodeME Genetics Study 2020/21

This is the largest study of its kind anywhere in the world and it received a £3.2 million grant from the Medical Research Council and National Institutes of Health Research.

  • The ME Association has produced a free 2-page leaflet about this exciting new study.
  • We hope it will be shared with anyone who has M.E. and might be interested in taking part.
  • Please register your interest now by visiting the DecodeME website.

We need to recruit at least 20,000 people with M.E. who will be asked to complete a clinical questionnaire and then to provide DNA samples via a ‘spit and post' system. You do not need to travel to take part in this research project.

The study will begin in September 2020 with recruitment from March 2021. Full details about the study’s launch, with comment from all involved, was made available in the press release that announced the funding agreement.

You can also read a more recent interview with lead scientist, Professor Chris Ponting, who explains the importance of this study, and how it will help us to discover the cause of M.E.


Most of the research studies and clinical trials that we fund through the Ramsay Research Fund, or are being funded by other research funding organisations such as the Medical Research Council, make use of people with ME/CFS who are already attending clinics within the hospital they belong to, or a hospital that they have links with.

There are, however, occasions where the ME Association is asked to help find research volunteers. When this occurs we make an announcement on our website and in ME Essential – our members magazine – and on our social media platforms.

Please note that inclusion of a study does not necessarily mean ME Association endorsement or funding support.


Visit the other pages in this section:

  • Research Projects:
    RRF investment in infrastructure and laboratory research. Also, position statements on long-term initiatives like the Rituximab clinical trial and the Post-Mortem Tissue Bank and how you can donate tissue after death.
  • Published Research:
    RRF studies from 2000 to present; PACE Trial reanalysis and critical commentary, and MEA illness management reports and critical trial reviews; MEA research summaries and research updates.
  • Volunteering for Research:
    ME/CFS research requiring volunteers.
  • CFS/ME Research Collaborative:
    The ME Association is an active member of the Executive Board of the CMRC. Here you can learn more about this organisation, become a member, read the conference reviews, and meeting summaries.

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