Frequently Asked Questions

The Q&A below was created by people with ME/CFS working with the project team and science blogger and patient, Simon McGrath. It will be updated as the project progresses.

Frequently asked question topics:

Clicking on a question reveals the answer.

The science/research

A genome-wide association study (GWAS) is a very large genetic study that seeks to uncover some of the biological roots of ME/CFS. By probing small DNA differences between people, a GWAS can help to pinpoint the genetic causes of disease and guide drug development. This design has previously been helpful in identifying genes together with molecular and cellular pathways that contribute to disease risk. (Read more about the science of GWAS.)

To work well, the study needs to recruit around 20,000 people with an ME/CFS diagnosis whose DNA will be compared with that of a similar number of non-ME/CFS matched controls. These will be people from a similar population who do not have ME/CFS drawn from the half-million-strong UK Biobank.

The largest ever DNA study of ME/CFS

Recruitment and taking part

You can register your interest to take part and keep updated on our homepage. We will notify all who have registered their interest once our participant selection process is open.

Public and patient involvement

Patient and public involvement (PPI) has been central to the development of the study, via our PPI Steering Group. We also incorporated feedback and ideas from the wider community into the study design. Some examples:

  1. We consulted on the criteria for inclusion in the study and decided to use the Canadian Consensus or Institute of Medicine and not Fukuda criteria as a result.
  2. We gained lots of ideas to help recruit 20,000+ participants.
  3. We used discussion on the Science for ME forum to inform our plans about recruiting from anywhere in the world, and what impact this might have.
  4. We recognised the need for a paper-based questionnaire, as well as an online one, for people wanting to participate.
  5. We’ve used the expertise of people with ME/CFS to develop our marketing strategy and budget.

The largest ever DNA study of ME/CFS

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