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.
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 email@example.com for further details.
Deadline for taking part: Recruitment is currently scheduled to run until the end of January 2021
towards people with a diagnosis of Chronic Fatigue Syndrome/Myalgic
Encephalomyelitis: A Q methodology study (Winter 2020 - 2021)
Details of the project: Anna Rickard at the University of Leicester has put together a project aimed at further developing our understanding of attitudes towards people who haveM.E./CFS, among stakeholders of the condition. This can include people who are or have been ill, friends, family and colleagues of someone who is ill and healthcare professionals who work or have worked with people who are ill.
Taking part would involve speaking to Anna over video call, where she will show you a set of around 70 statements, about lots of different things that different people might think about M.E./CFS. She will ask you to put them in order of the ones you agree with most to least. This usually takes about an hour, although there will be breaks as needed.
Ethical approval: This study has received ethical approval from the School of Psychology Research Ethics Committee at the University of Leicester.
Contact details: For further information please contact Anna Rickard at firstname.lastname@example.org
Deadline for taking part: This study is ongoing with no specific deadline given at this time.
Research Consultation Activity: Transforming Healthcare for People with ME/CFS through an Arts-based Community of Practice (Winter 2020 - 2021)
Details of the project: Dr Helen Johnson at the University of Brighton is putting together a funding bid to carry out some research that aims to improve the experience people with ME/CFS have in the UK healthcare system. She hopes to do this by running a series of online and face-to-face workshop activities in which GPs and people with ME/CFS use creative writing and other creative methods to share their experiences with one another. The accounts they produce will then be used as the basis for training materials for new and existing GPs.
Helen would like to ensure that the views of people with M.E./CFS are central to this study from the start. She received some funding from the National Institute for Health Research to run some focus groups with people living with M.E./CFS. These focus groups quickly became over-subscribed, however, it became clear that this method is not suitable for many people living with more severe M.E./CFS. Helen is now opening up the consultation to people who are unable to participate in the focus groups. This alternative route will involve completing several creative activities and emailing written feedback on a summary of the research proposal in your own time.
Ethical approval: This is a patient consultation activity, rather than a research study and it does not therefore require ethical approval.
Contact details: For further information please contact Dr Helen Johnson email@example.com
Deadline for taking part: If you are interested in participating, please email Helen Johnson by Friday 22nd January. Feedback is due by Friday 29th January 2021.
Brain processes involved in sensory experiences of individuals with ME/CFS (Winter 2020 - Spring 2021)
Details of the project: There is evidence that some people with ME / CFS experience visual, auditory or other sensory issues. Taking place at Oxford Brookes University, the purpose of this study is to investigate the presence and nature of these potential problems in people with M.E./CFS, compared to those without diagnosis of M.E./CFS. Researchers will use EEG and neuropsychological tests in order to help them understand the potential link between sensory processing and brain function in people with ME/CFS.
Wanted for the study are 40 participants with M.E./CFS diagnosis and 40 participants without diagnosis of M.E. (nor any history of neurological or psychiatric conditions) in the age range of 18+ to 65 years.
This study will take place at the University Psychology Department. You will be given an appointment that suits you. The overall procedure is estimated to take 2.5 hours which includes 45 minutes for setting up the EEG equipment, 30-45 minutes for the actual computer-based activities whilst EEG is being recorded, and around 60 minutes for pen and paper tests, neuropsychological assessment and interview. EEG is used to measure ongoing brain activity in a non-invasive way. Participants will receive a £30 Amazon Voucher for their trouble. Travel expenses are reimbursed up to 30 pounds for individuals with M.E. and up to 10 pounds for individuals without M.E.
Ethical approval: This study has been approved by the University Research Ethics Committee at Oxford Brookes University. If you have any concerns about the way in which the study has been conducted, you can contact the chair of the ethics committee firstname.lastname@example.org.
Contact details: For further information please contact Dr. Alfred Veldhuis (email@example.com).
Deadline for taking part: Currently there is no specific deadline for taking part as the study will remain active until the end April 2021 at least, or until 80 participants have been recruited.
CHAMPION - Children and Young People’s Meta-ethnography on Pain (Autumn/Winter 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 ongoing with no set deadline.