A relational analysis of an invisible illness: A meta-ethnography of people with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) and their support needs, by Karen Pilkington, Damien Ridge, Chinonso N Igwesi-Chidobe, Carolyn Chew-Graham, Paul Little, Opeyemi Babatunde, Nadia Corp, Clare McDermott, Anna Cheshire in Social Science & Medicine, 16 September 2020 [doi.org/10.1016/j.socscimed.2020.113369]
- 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
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.