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 seeking participants. Each one gives contact information for the person you will need to speak to for more information.
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.
CHAMPION - Children and Young People’s Meta-ethnography on Pain (Autumn 2020)
Details of the project: The CHAMPION project is investigating how young people living with chronic pain and their families experience and think about chronic pain and health care, and what they would like from treatment services. Researchers will carry out a meta-ethnography, which involves reading and pulling together research studies that have asked children with chronic pain and their families about their experiences and views. The team will then come up with new findings to help improve health care.
There are different ways you can be involved: 1. Researchers can ask about your views and experiences on chronic pain. 2. You can participate in two online workshops, for example, to help researchers decide which studies to include and help them to understand the findings. 3. You would help researchers work out the best ways to tell people about the CHAMPION project and its findings. 4. You choose when, how often and how much to contribute. 5. You choose how to receive contact, for example, over the telephone or online. 6. You will receive vouchers for your time helping with the CHAMPION project.
Ethical approval: Ethical approval is not required because these are patient and public involvement activities (PPI) which are exempt from research ethics approval. For details, please see the FAQs page of the NIHR website.
Contact details: For more information please contact May Silveira
Deadline for taking part: Recruitment is set to run until November 2020.
School support for adolescents with M.E./CFS (September 2020)
Details of the project: The purpose of this study is to explore the school support for adolescents (aged 11-18) attending secondary schools in England with a medical need, such as M.E./CFS. Informed by the voice of young people and their families, the research aims to contribute to improved support and academic outcomes of this population. Participation involves the completion of an online survey (10 minutes) with the option to participate in a follow up interview using an online platform. All research is online with no face-to-face contact. View the study information sheet to find out more.
Ethical approval: This project has been approved by the Doctorate for Educational, Child and Adolescent Psychology Department of the UCL Institute of Education and has been registered with UCL Data Protection Office.
Contact details: For further information about the research, please email Erika Payne.
Deadline for taking part: Erika would like to finish data collection by October half-term. The pandemic and the lockdown has made it difficult to find participants, so if you see this after October, please do still get in touch.
The experiences of young adults with M.E./CFS (summer 2020)
Details of the project: The purpose of this study is to explore the experiences of young adults (aged 18-25) with M.E./CFS, with the aim of contributing to a better understanding of how it impacts their lives and what it means to be chronically ill during young adulthood. For more information, see this flyer.
Ethical approval: This project has been approved by the College of Social Sciences and International Studies Ethics Committee at the University of Exeter.
Contact details: For further information about the research, please email Louise Toller at write to her at Sociology, Philosophy and Anthropology, University of Exeter, Amory Building, Rennes Drive, Exeter EX4 4RJ.
Deadline for taking part: Louise got in touch on 3 September 2020 to let us know that she has all the participants she needs for this study.