The research you can get involved with
People with ME often ask us how they can get involved with research. If you haven't registered your interest to potentially take part in DecodeME, the world's largest ME DNA study, please do so: it's open to over-18s in the UK with an ME diagnosis, and you can take part from home.
Below we offer details of other research projects whose researchers have asked us to promote recruitment. Each one gives contact information for the person you will need to speak to for more information. There is also an extensive list of ME/CFS studies that are currently recruiting on the Science for ME website.
Please note that by listing research projects here Action for ME is not endorsing them. The studies on this page have all obtained ethics approval (if such approval is required) and all are being undertaken at a medical, research or academic institution.
For more information about what getting involved in research and/or clinical trials might mean, please visit NHS Choices.
What is the experience of making online connections for people with ME and what is the relationship between these online connections and offline lives?
Research question and details: How are online connections formed, in what capacity do they exist, and how are they maintained? Why are online connections sought and what effect do they have on people with ME? What, if any, is the relationship between online connections and participants' offline lives?
What's involved: To take part, participants are asked to chat about their experiences in an informal online/phone interview lasting approximately 30-60 minutes. If you require interviews of shorter durations, multiple sessions can be accommodated, as too can any other reasonable adjustments. Interviews will take place via Zoom or Teams, with camera on or off, as you prefer, or over the phone.
Participant eligibility criteria: Participants must have a diagnosis of ME/CFS and have used the internet in the last 6 months to connect with other people.
Ethical approval: Ethical approval for this study has been granted by the ethics committee at the University of Birmingham faculty of medicine and applied health research.
Contact details: To take part in the survey, please visit contact Diane Shortland on DLS760@student.bham.ac.uk.
Deadline for taking part: recruitment will run in 8-week blocks and will continue into 2025 until enough suitable participants have been found.