Our research work

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Get involved in research

The research you can get involved with

People with M.E. 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 M.E. DNA study, please do so: it's open to over-18s in the UK with an M.E. 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 M.E./CFS studies that are currently recruiting on the Science for ME website.

Please note that by listing research projects here Action for M.E. 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.

The Ethics of Inclusion: exploring whether people of working age with invisible illnesses and chronic conditions feel they belong in their church communities

Research question and details: How are people of working age with invisible illnesses and chronic conditions (particularly those with ME, Long COVID or the immunocompromised (due to chemotherapy treatment) included in their C of E church communities, whether in-person, hybrid and/or online, and how much do they feel they really matter and belong?

What's involved: To take part, people need to answer a questionnaire online, which has been described by participants as "short" and "very ME friendly". Please visit: www.ethicsofinclusion.study

If participants wish to take part further, they can put themselves forward to be one of the ten people interviewed over Zoom to gather deeper insights. This second step is purely voluntary.

Participant eligibility criteria: Participants must be of working age (defined as 18 - 65 inclusive for this study), members of a Church of England church (to some extent) and living with an invisible illness or chronic condition, such as ME or Long COVID.

Ethical approval: This project has received ethics approval from Yorkshire Theological Education Partnership (YTEP) and St Hild College, as part of my Durham University MA research.

Contact details: To take part in the survey, please visit: www.ethicsofinclusion.study

The researcher's email is penny@pennypullan.com

Deadline for taking part: The survey will close in March 2024.

Male ME/CFS Patient Experiences of the Healthcare System

Details of the project: This research is exploring how social stigma of chronic illness, public focus on female ME/CFS sufferers, and gender constructs have impacted the healthcare experiences of males with ME/CFS. The lack of research of ME/CFS in men can lead to failure of diagnosis, management, and support for sufferers. Outcomes of this project aim to address health policy and medical training to improve patient experiences of this very debilitating condition.

What's involved: If you choose to participate, we will conduct an interview online, led by you, about your experiences with ME/CFS and with healthcare practitioners.

Participant eligibility criteria: Men who have once received a diagnosis of ME/CFS, and are not currently enrolled in other clinical trials, studies, or care.

Ethical approval: Approval has been granted by the UCL ethics committee. ID: SHSAnth-2324-025-1.

Contact details: Please email rosaline.koning.22@ucl.ac.uk with any further questions about the project and eligibility if you are interested in taking part.

Deadline for taking part: 1st of March, 2024

The secondary school experiences of pupils with chronic fatigue syndrome; A retrospective account from young adults aged 18-25 (Winter 2020-2021)

Details of the project: The University of Nottingham is conducting a study to consider the experiences of young adults who had symptoms of M.E./CFS while at secondary school. You can still participate if you no longer have M.E./CFS symptoms.

The study will involve a video interview lasting approximately an hour to describe your experiences of having M.E./CFS while at secondary school. There will be an optional follow up interview to discuss the study results.

The university are looking for volunteers:

  • Aged between 18-25
  • Who had a diagnosis and symptoms of M.E./CFS during secondary school
  • Able to complete a video interview with a researcher (this can be completed over multiple sessions if needed).

Ethical approval: The study has been approved by the University of Nottingham School of Psychology Ethics Committee.

Contact details: Please contact the researcher, Charlotte Davies, via charlotte.davies@nottingham.ac.uk for further details.

Deadline for taking part: Recruitment was initially scheduled to run until the end of January 2021. We will remove this advertisement when we've had confirmation from the researcher that recruitment has concluded.