Stigma and Marginalisation: Research opportunity for people with ME living in the UK | 17 February 2020

February 17, 2020

Joanne Hunt and Dr Charles Shepherd

Thank you to all who responded so positively to this study. Jo Hunt has received sufficient applications to now proceed and doesn't require any more inquiries at this point. 18th February 2020.

If you are an adult who has been diagnosed with ME/CFS you are invited to take part in a research study that Jo Hunt is conducting as part of her studies at the University of Derby.

The study is now open to anyone in the UK (it was previously limited to Gloucestershire) and interviews will be conducted by phone or Skype. Jo is especially interested in hearing from people who are (or have been) severely affected.

Study Title

Stigma and marginalisation in the healthcare encounter and perceived impact on illness burden: The lived experiences of people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

What is the study about?

  • The study aims to explore the experiences of people with ME/CFS regarding stigma and marginalisation in healthcare, in both primary and secondary care.*
  • It will also explore how such experiences impact on illness burden (physical and emotional health, overall well-being) from the perspective of people with ME/CFS.
  • Finally, it will explore what factors might contribute to more positive healthcare encounters, again from the perspective of people with ME/CFS.

Participation in this study is entirely voluntary and, if you wish to take part, you will be asked to meet with the researcher to talk about the above topics. This is referred to as an interview. There are no right or wrong answers to questions; rather, the emphasis is on allowing you to respond to the researcher’s broad questions in a way that is meaningful to you.

The duration of the interview can vary, but is generally expected to take around 60 minutes. Interviews can be conducted over more than one meeting if your health will not allow you to participate otherwise. They can be offered by Skype or by phone and in some cases (depending on location) they can also be offered face-to-face.

Who can take part?

You can take part in this study if:

  • You have a medical diagnosis of ME/CFS
  • You are 18 years of age or over
  • ME/CFS is your primary (main) diagnosis and health concern
  • You are fluent in English
  • You have experience of both primary and secondary healthcare for ME/CFS*

*Primary care would include your GP, whilst secondary care would include ME/CFS specialist services, and, for example, cognitive behavioural therapy (CBT) and graded exercise therapy (GET).

Who cannot take part?

There are a few cases where you will not be able to take part in this study. This is in order to protect participants from harm, and to ensure that the study explores experiences of people with ME/CFS as opposed to other health conditions. You cannot take part in this study if:

  • You have a diagnosed mental health condition (for example, depression, anxiety, or any other mental health diagnosis).
  • You have a medical diagnosis of fibromyalgia.
  • You consider yourself to be a vulnerable adult or adult at risk.

What should I do if I would like to know more?

If you are interested in taking part in the study, please contact the researcher, Jo Hunt, via email:

What is the researcher’s interest in conducting this study?

Jo’s interest in ME/CFS is primarily derived from living with it herself and from working with people with ME/CFS in a clinical context. Her current studies are in psychology; however, she does not subscribe to a psychological understanding of ME/CFS.

Rather, Jo’s interest arises from a critical psychology perspective; critical psychology seeks to challenge mainstream psychological assumptions, especially with regards to use and abuse of power in social contexts (including healthcare). Her beliefs about causation and management of ME/CFS are very much in line with those of the ME Association.

The ME Association

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