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Get involved in research

Research you can get involved with

People affected by M.E. often ask us how they can get involved with research. While we are not a research organisation ourselves, we are sometimes made aware of research projects that are looking for participants who have M.E.

This page will provide an overview of any such research projects, who is running them and what taking part will involve for someone who has M.E. Each entry also includes 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.

An investigation in to the diagnostic process for M.E./CFS

The study is investigating the diagnostic process for M.E./CFS, with a particular focus on:

  • How the condition is communicated to patients by those working in medicine
  • What was offered to them in terms of treatment and advice
  • How these interactions have affected them as a sufferer and an individual

What does the study involve?

The study involves an interview at the convenience of the participant; the interview will be conducted on an online video communication platform (such as Skype) or on the telephone depending on what the participant is comfortable with. All data collected will be transcribed and kept in a password protected computer file, and at the end of the study destroyed. All participants will be anonymised at all times, and if they would like I am more than happy to share the finished thesis with them. This study will be lead by Medical Sociology master's degree student Lucy Skingle with the support of the University of Amsterdam and her supervisors.

Who can participate?

  1. Live in the United Kingdom
  2. Adults over the age of 18 and have a diagnosis for M.E./CFS.

If you are interested in taking part or have any questions, please contact Lucy Skingle at lucyskingle6@gmail.com. The deadline for contacting about participation is the 25 March 2019.