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https://www.sciencedirect.com/science/article/abs/pii/S0277953620305888
Some of these have been involved with annoying papers in the past
Social Science & Medicine
Available online 16 September 2020, 113369
In Press, Journal Pre-proof
Some of these have been involved with annoying papers in the past
Social Science & Medicine
Available online 16 September 2020, 113369
In Press, Journal Pre-proof
A relational analysis of an invisible illness: A meta-ethnography of people with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) and their support needs
Karen Pilkingtona
Damien Ridge b
Chinonso N. Igwesi-Chidobe c
Carolyn Chew-Graham d
Paul Little e
Opeyemi Babatun ded
Nadia Corp d
Clare McDermott f
Anna Cheshire g
a
School of Health Sciences and Social Work, University of Portsmouth, Portsmouth, UK
b
College of Liberal Arts & Sciences, University of Westminster, London, UK
c
Department of Medical Rehabilitation, College of Medicine, University of Nigeria, Nigeria
d
School of Primary, Community and Social Care, Faculty of Medicine and Health Sciences, Keele University, Staffordshire, UK
e
Medicine, University of Southampton, Southampton, UK
f
Primary Medical Care, University of Southampton, Southampton, UK
g
School of Social Sciences, University of Westminster, London, UK
Revised 17 August 2020, Accepted 12 September 2020, Available online 16 September 2020.
Highlights
•
Meta-ethnography on ‘support’ synthesises 47 studies of people living with CFS/ME
•
Integrates patient and public involvement throughout entire review process
•
‘Goods’ framework shows concerns of people with CFS/ME produced by relations
•
Shifts the focus from individuals to co-creation of ‘goods’ like ‘recognition’
•
Points to novel ways to support people with condition where views highly polarised
Keywords
Chronic fatigue syndrome
myalgic encephalomyelitis
meta-ethnography: qualitative
relational good
social support
Users' Experiences
Fatigue
Exhaustion
Systematic Reviews
Well-Being
Chronic
Abstract
Chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (ME) is indicated by prolonged, medically unexplained fatigue (amongst other symptoms), not alleviated by rest, and causing substantial disability.
There are limited treatments on offer, which may not be effective and/or acceptable for all people, and treatment views are polarised.
We, thus, aimed to take a step back from this debate, to explore more broadly preferences for formal and informal support among people with CFS/ME.
We used a meta-ethnography approach to examine the substantial qualitative literature available.
Using the process outlined by Noblit and Hare, and guided by patient involvement throughout, 47 studies were analysed.
Our synthesis suggested that to understand people with CFS/ME (such as their invisibility, loss of self, and fraught clinical encounters), it was useful to shift focus to a ‘relational goods’ framework.
Emotions and tensions encountered in CFS/ME care and support only emerge via ‘sui generis’ real life interactions, influenced by how social networks and health consultations unfold, and structures like disability support.
This relational paradigm reveals the hidden forces at work producing the specific problems of CFS/ME, and offers a ‘no blame’ framework going forward.
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