Recruiting so many people with ME/CFS will be a huge challenge, particularly as the disease is not as common as, for example, diabetes (around 1 in 250 people have ME/CFS, compared to 1 in 16 for diabetes). Also, many people with ME/CFS do not have a clinical diagnosis.

We plan to have:

  1. a ‘big splash’ PR campaign when we launch, with press releases and TV and radio interviews;
  2. a patient-led social media campaign on Facebook, Instagram, Twitter and so on;
  3. digital advertising;
  4. a campaign that encourages people with ME/CFS, their supporters and carers to reach out to every patient they know to recruit them to the study;
  5. engagement with advocacy groups, groups of people with ME/CFS, charities and the NHS;
  6. word of mouth.

We will actually need more than 25,000 people to take part, because although we will be encouraging all our participants to complete the process, not everyone will meet the criteria, finish the DecodeME questionnaire or return a saliva sample. We, therefore, need as many participants as possible to make sure we get 25,000 right to the end!

If you’d like to take part or help find patients, please help us spread the word about DecodeME on your social media and in our community.

The largest ever DNA study of ME/CFS

A partnership between

Action for ME logo
Forward ME Logo
UKRI MRC Human Genetics Unit logo
National Institute for health research