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A relational analysis of an invisible illness: A meta-ethnography of people with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) and their support needs

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  • Pilkington, Karen
  • Ridge, Damien T.
  • Igwesi-Chidobe, Chinonso N.
  • Chew-Graham, Carolyn A.
  • Little, Paul
  • Babatunde, Opeyemi
  • Corp, Nadia
  • McDermott, Clare
  • Cheshire, Anna

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, 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.

Suggested Citation

  • Pilkington, Karen & Ridge, Damien T. & Igwesi-Chidobe, Chinonso N. & Chew-Graham, Carolyn A. & Little, Paul & Babatunde, Opeyemi & Corp, Nadia & McDermott, Clare & Cheshire, Anna, 2020. "A relational analysis of an invisible illness: A meta-ethnography of people with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) and their support needs," Social Science & Medicine, Elsevier, vol. 265(C).
    • Handle: RePEc:eee:socmed:v:265:y:2020:i:c:s0277953620305888
    DOI: 10.1016/j.socscimed.2020.113369
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    References listed on IDEAS

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    1. Travers, Michele Kerry & Lawler, Jocalyn, 2008. "Self within a climate of contention: Experiences of chronic fatigue syndrome," Social Science & Medicine, Elsevier, vol. 66(2), pages 315-326, January.
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    3. Glenton, Claire, 2003. "Chronic back pain sufferers--striving for the sick role," Social Science & Medicine, Elsevier, vol. 57(11), pages 2243-2252, December.
    4. Whitehead, Lisa Claire, 2006. "Quest, chaos and restitution: Living with chronic fatigue syndrome/myalgic encephalomyelitis," Social Science & Medicine, Elsevier, vol. 62(9), pages 2236-2245, May.
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