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Get involved in research

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.

Living with complex, poorly-understood medical conditions: Experiences of stigma and shame.

Details of the project: The study, based at Durham University, is a Medical Humanities project and aims to understand the ways in which women with conditions, such as M.E., face shame and stigma and how these might be reduced for patient communities.

This research focuses on complex, poorly-understood medical conditions, like M.E., that can cause severe and disabling symptoms, but for which there is currently no accepted biomedical explanation.

Women with lived experience of complex, poorly-understood medical conditions are invited to participate in the study.

What's involved?

  • Those meeting the criteria can express interest in participating by completing this online survey, or view more information on the study here.

Ethical approval: The study has received ethical approval from Durham University's Department of Anthropology ethics committee.

Contact details: Anyone with questions or comments about the project should contact the researcher via Katharine.a.cheston@durham.ac.uk

Deadline for taking part: Midnight, Monday 21 June 2021

Genome-wide association study (GWAS) of the risk genes associated with ME/CFS.

Details of the project: This study is a small-scale, 4-month project for a master's dissertation, conducted in association with the University of Edinburgh under the supervision of Prof. Chris Ponting.

It is a genome-wide association study of the risk genes associated with ME/CFS and will use DNA data from the UK Biobank, for which ethical approval has been obtained.

The researchers are inviting a handful of volunteers to contribute their views on the research, in order to incorporate their views at all stages of the project, helping to ensure the research is of high-quality through Patient and Public Involvement (PPI).

You can take part if:

  • You are aged 18 or over
  • You have lived experience of M.E./CFS (have M.E./CFS or care for someone who does).

What’s involved?

  • Two short interviews (approx. 30 mins each), held over Zoom or Microsoft Teams
  • The first interview will take place at the beginning of the project, in July, and will seek people's views on this kind of research.
  • The second will take place at the end of August and will conclude the project.
  • Completion of an online, open-ended questionnaire asking for feedback/thoughts on the study's findings. This will be sent in advance, in the form of a short 5-minute video, at the end of July/beginning of August.

Days and times of the interviews will remain flexible to suit the individual needs of participants and rest breaks can be incorporated if required.

Ethical approval: Involvement will be fulfilled in concordance with the National Standards set out by the National Institute for Health Research (NIHR). Interviewees will be provided with information on the project prior to interviews, along with a list of questions which will be asked. Permission to quote comments made by interviewees will be sought; confidentiality will be maintained at all times.

Contact details: Please contact the researcher, Gemma Samms via g.l.samms@sms.ed.ac.uk to register your interest.

Deadline for taking part: Closing date for applications is 2nd July 2021.

The relationships between personality, coping and psychological wellbeing in individuals with Chronic Fatigue Syndrome (CFS).

Details of the project: This study aims to investigate whether certain personality traits influence coping, mental wellbeing and how individuals with CFS/ME feel about themselves.

What's involved?

  • Participants are invited to take part in an anonymous, online survey
  • They will be asked to complete short questionnaires, prior to taking part in a brief task, which involves thinking about their recent experiences of having CFS/ME
  • The entire study is completed online and can be completed at one's own pace, though completion time is approximately 25-30 minutes.
  • Participants will have the chance to win one of two £25 Amazon vouchers.

Participants must:

  1. Currently have a diagnosis of CFS/ME, provided by a medical professional
  2. Be over the age of 18
  3. Have no other significant health diagnoses, including memory or cognitive impairment
  4. Speak fluent English.

Ethical approval: This study has been granted ethical approval by the Department of Psychology Ethics Committee at the University of Sheffield.

Contact details: If you would like any more information or are unsure about any of the criteria, please contact the researcher, Alexandra Houston via ahouston3@sheffield.ac.uk

Deadline for taking part: December 2021.

Improving Access to Treatment and Support (IMPACTS) – An exploration of the barriers and facilitators to accessing support services for students with symptoms of CFS/ME (Spring/Summer 2021)

Details of the project: Under the guidance of Dr. Laura Gibbon at University College London (UCL), this peer research project aims to explore the various barriers and facilitators students with symptoms of M.E./CFS may experience in accessing support services. Because students also tend to be at an increased risk for mental health problems, this study aims to look at the holistic needs of this group and inform universities on how to best support their students.

Therefore, in order to take part, participants must meet the following criteria:

  • Are 18 years or older
  • Are a student (e.g. undergraduate/postgraduate/professional etc) at any UK university
  • Have experienced symptoms of M.E./CFS at some point while at university
  • Have experienced mental distress at some point while at university

What's involved?

  • An online survey (approx. 10 minutes). You will be entered into a prize draw to win 1 of 30 £15 vouchers at the end of the peer researchers projects (expected August 2021).
  • An optional follow-up online interview (approx. 1 hour). All interviews will receive a £20 voucher.

Ethical approval: The study has been approved by the University College London (UCL) Ethics Committee.

Contact details: Email PaLS.IMPACTS@ucl.ac.uk for more information. You can complete the survey on the UCL website:

Deadline for taking part: This study will remain active until the end of June 2021.

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.

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 h.f.johnson@brighton.ac.uk

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. We will remove this advertisement when we've had confirmation from the researcher that recruitment has concluded.

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 ethics@brookes.ac.uk.

Contact details: For further information please contact Dr. Alfred Veldhuis (aveldhuis@brookes.ac.uk).

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.