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Get involved in research

1.Have provided or be providing care for a family member, partner, or friend with ME/CFS

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.

ME/CFS Anonymous Survey

Details of the project: I am a Durham University student conducting my dissertation. I am conducting an Anthropological investigation into the experience of M.E through both sufferers and their carers/ loved ones. Please see this flyer for more information.

What's involved?: There is a short anonymous survey to fill out, at the end of which you will be asked if you would be interested in talking more about your experiences of M.E, if so you will be asked to partake in one, hour-long informal and virtual interview. The anonymous survey includes information such as age, gender and how long you, or a person you care for, has been affected my M.E. It is important to note that all questions are optional.

Participants must: Fill out the anonymous survey by clicking on the link and express interest in partaking in an informal interview if they so wish/ are able to. Participants must only express interest in the interview if they are able to/ comfortable talking about how M.E has affected them.

Ethical approval: My research has undergone thorough ethical review from the ethics committee in the Durham Anthropology Department and has been approved.

Contact details: Please contact Eleanor Murphy-Jameson, email: eleanor.p.murphy-jameson@durham.ac.uk or my mobile: 07463177694

Deadline for taking part: 1 October 2021.

GW4 ME/CFS Family Carers Study

Details of the project: The overall purpose of the project is to develop research to better support family carers of people with ME/CFS. To do this, we will be holding a series of consultations with ME/CFS, family carers, and health and social care professionals. This will be a chance to share your experiences of giving or receiving care, and have a say on new research. The project is led by Dr Siobhan O’Dwyer, Senior Lecturer in Ageing and Family Care, University of Exeter, and funded by GW4. The team includes researchers from Bristol and Cardiff Universities, as well as people with ME and family carers.

What's involved?:

  • The study will involve a one-to-one, online consultation, which has been co-designed by people with ME/CFS and carers. Dr Georgia Smith will ask you about your experience of giving or receiving care and invite you to offer your opinions on new research on ME/CFS carers. There will also be an opportunity raise and explore issues that are important to you.
  • The consultation can happen at a time that suits you, and will take approximately one hour (although it can also be completed over multiple shorter sessions if needed).
  • All participants will receive a small thank you payment for their time.

If you’re interested in the research, you’ll also have the option of staying involved as we go on to the next stages.

All participants must be:

  • Aged 18 or over
  • Willing to take part in an online consultation

People with ME/CFS must:

  • Have a diagnosis of ME/CFS, provided by a medical professional
  • Have received or be receiving care from a family member, partner, or friend

Carers must:

  • Have provided or be providing care for a family member, partner, or friend with ME/CFS

We’re particularly keen to ensure that we hear the voices of male carers, LGBT carers, and carers who are Black, Asian, or from a minority ethnic group.

Ethical approval: As this is Patient and Public Involvement, ethical approval is not required. The consultations have been designed in partnership with people with ME and carers, to ensure they are sensitive and supportive.

Contact details: To get involved or find out more, please contact Dr Georgia Smith at g.smith5@exeter.ac.uk.

Deadline for taking part: Recruitment is scheduled to run until October 2021. We will remove this advertisement when we’ve had confirmation from the researchers that recruitment has concluded.

Pain Forecast: How to Predict Chronic Pain

Details of the project: The overall purpose of the research is to help reduce uncertainty in individuals living with chronic pain, by providing them with a personalised pain forecast. This will be done by analyzing data collected in a previous study, Cloudy with a Chance of Pain, which investigated the relationship between pain and the weather.

The present study aims to understand the information individuals living with chronic pain would want to receive from a pain forecast.

What's involved?

  • Participants are invited to take part in a 90-minute focus group
  • They will be asked to complete a questionnaire following the focus group

Participants must:

  1. Have a chronic pain condition
  2. Be aged 18 or over
  3. Be willing to attend a focus group on Zoom (assistance will be provided)

Ethical approval: This Project Has Been Approved by the University of Manchester Proportionate Ethic Committee, [UREC reference number 2021-11862-19751]

Contact details: If you would like any more information or are unsure about any of the criteria, please contact the researcher, Claire Little at claire.little@postgrad.manchester.ac.uk

Deadline for taking part: Tuesday 10 August for the focus group, ongoing for the questionnaire.

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.

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.