DecodeME – A New Genetics Study into ME


In this free leaflet we explain the £3.2 million grant from the Medical Research Council and National Institutes for Health Research, that launched the largest ever study into genetics and M.E. We also explain how it will work and how you can take part.


Having been involved in the planning and development of the DecodeME study
the ME Association were delighted to learn that the Medical Research Council and the National Institute for Health Research had agreed to provide a massive grant of over £3 million to ensure that this research can now commence.

This type of ‘genetic fingerprint’ study is already providing important information about the cause of some types of eye disease, Parkinson’s disease and prostate cancer. Finding the genetic fingerprints for M.E. could therefore provide us with vital clues to help with diagnosis, treatment and even the prevention of this devastating condition.

Anyone with M.E. can register their interest to take part in the study, which will collect clinical data via questionnaire and genetic samples through a ‘spit and post’ system. This means you don’t need to leave your home to contribute.

The study needs to recruit at least 20,000 people and represents a major research initiative, so please take part if you can. Download this leaflet and then visit the DecodeME website to learn more and to register your interest in taking part.

The study begins in September 2020 with recruitment taking place from March 2021.

Telephone Helpline

The ME Association telephone helpline – ME Connect – is available every day of the year, during the hours of 10am-12noon, 2pm-4pm and 7pm-9pm. Please phone: 0344 576 5326 if you have any questions or would simply like to talk to someone who is there to listen.

Please note this leaflet is a download. You can read it on-screen and save to your computer, phone or other device and can attach it to any email you might need to send. But you will need access to a printer if you wish it printed.


0344 576 5326

Available every day of the week between these times: 10am - 12noon, 2pm - 4pm and 7pm - 9pm.

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