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 in early 2021, 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 actually will need more than 20,000 people to take part, because not everyone will pass the criteria, complete the online questionnaire or return a saliva sample. We need as many participants as possible!

If you’d like to take part or help find patients, please indicate your interest via our homepage.

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