A relational analysis of an invisible illness

A meta-ethnography of people with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) and their support needs

Bibliographic Data

ID4595061
AuthorsKate Pilkington (0000-0002-6914-3347, University of Portsmouth), Damien Ridge (0000-0001-9245-5958, University of Westminster, corresponding author), Chinonso N Igwesi-Chidobe (0000-0001-8021-0283, University of Nigeria), Carolyn A Chew-Graham (0000-0002-9722-9981, Keele University), P Little (0000-0003-3664-1873, University of Southampton), Opeyemi Babatunde (0000-0002-5064-6446, Keele University), Nadia Corp (0000-0002-6758-9513, Keele University), Charlene Mcdermott (0000-0001-7389-2116, University of Southampton), Anna Cheshire (0000-0001-7920-6850, University of Westminster)
Year2020
Volume265
Pages113369
Publication date2020-11-01
Peer ReviewedYes
Open AccessYes
TypeARTICLE
VenueSocial Science & Medicine (JOURNAL)
Journal identifiersISSN: 0277-9536 • E-ISSN: 1873-5347
PublisherElsevier BV (PUBLISHER)
DOI10.1016/j.socscimed.2020.113369
PMID33039734
OpenAlexW3085233623
LanguageEN
Citations received10
References cited83

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, as well as 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

Blame · Chronic fatigue syndrome · Ethnography · Psychiatry · Social support · Sociology · Amyotrophic Lateral Sclerosis Research · Fibromyalgia and Chronic Fatigue Syndrome Research · Health, psychology, and well-being · Medicine · Psychology · Social Psychology

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