Frequently Asked Questions

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How will the study manage to recruit so many participants?

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.

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The largest ever DNA study of ME/CFS

A partnership between

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UKRI MRC Human Genetics Unit logo
National Institute for health research