Open Research opportunity for people with ME living in Gloucestershire | 16 January 2020

[John Mac]

From ME Association website

If you are an adult who has been diagnosed with ME/CFS, and you live in Gloucestershire, 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 will, at least initially, be confined to Gloucestershire because of Jo’s limited mobility and her desire to interview local people in person or by Skype or phone.

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).

https://www.meassociation.org.uk/20...me-living-in-gloucestershire-16-january-2020/

 

[rvallee]

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)

This is important research. Hopefully it is competent and thorough. It's beyond obvious that most physicians' perception of the lived reality of ME is about as far from reality as it can get, a deeply shameful dereliction of duty.

 

[It's M.E. Linda]

Further information about the study:


“Study Title:

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

From personal knowledge, I am aware that Jo Hunt has been getting volunteers.

 

[InfiniteRubix]

Extended beyond Gloucestershire