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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.

Personal experience with ME/CFS

Details of the project: The aim of the project is to enhance research surrounding ME/CFS. The onset of ME, or in other words its causes remain unknown. There is much debate over the causes in research. Unfortunately this impacts other areas:

  • Treatment options
  • Early intervention
  • Lack of diagnostic criteria

This study provides an opportunity to discuss personal experience with ME/CFS from its beginning to its impact in the present day. It aims to further understand potential causes of ME and how this could impact the course of ME for individuals.

What's involved?:

  • An online discussion over Zoom that will take no longer than 30 minutes.
  • Booking an interview from 7am-10pm with the researcher, any day of the week.
  • Answering 7 questions about personal experience with ME/CFS.
  • Concluding with a debrief.

Participants must:

  • You must be 18+.
  • Willing to discuss your experience with ME/CFS.
  • Participate in an audio-recorded online discussion.
  • Provide consent to take part in the study and for the audio recording.
  • Any gender, race, sexuality or religion are welcomed.

Ethical approval: The study has received full Ethical Approval from the Northumbria University Research and Ethics department.

Contact details: Please contact Annabelle Julia Noble at a.j.noble@northumbria.ac.uk. You will receive a link to a consent form and can book a time slot.

Deadline for taking part: Friday 1st April 2022

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 analysing 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.