Knowing ‘ME’ Knowing You: The Discursive Negotiation of Contested Illness within a Family

Abstract

Although CFS/ME (Chronic Fatigue Syndrome/Myalgic Encephalomyelitis) has been heavily researched and contested, there is a distinct absence of studies which consider the relationship between the illness and family process. This is a striking omission given the centrality of the family to the proximal management of the illness. This study used a discourse analytic methodology to consider how talk about illness is locally negotiated by a family in the context of a single family interview. The individual in the family who had been diagnosed with CFS/ME was a sixteen yearold adolescent girl who had experienced symptoms for 18 months. Our findings suggested that family discourses about CFS/ME were polarized around the issue of intentionality. Two family members deemed the illness to represent 'genuine illness' and two regarded the illness to be intentionally used for advantage. These illness accounts were considered as both constitutive-off and constituted-by family conflict. We consider the implications of these findings in developing clinical formulations of the illness and in determining how best to support recovery.

Children's experiences of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME): a systematic review and meta-ethnography of qualitative studies

“…Seven of the ten studies were based in the UK, two in Norway and one in South Africa. One study employed a family interview,46 all others used individual interviews (in-depth and semistructured). Two studies included specific populations: recovered patients47 and those with high anxiety 48…”

“…The CASP scores ranged from 3 to 10 with only one study49 scoring below 5 (table 2). We undertook a sensitivity analysis and removed constructs from three studies with the lowest CASP scores (<6)46 49 50 from the synthesis. The constructs emerged as supportive as they were also reported in other studies.…”

“…Crix et al 46 discourse analytic study found that family discourses about CFS/ME were divided. Two family members constructed CFS/ME as a ‘genuine illness’ using medical discourse, whereas two constructed the illness as ‘laziness’ used intentionally for advantage.…”

“…This can add to the strain already experienced in families due to the illness.

50 Mother: …you got a viral illness and hh(1.8) you just sort of turned from being a really strong (3.7) healthy person, to into someone who couldn't do anything didn't you? 53 Daughter : yeah em46

…”

How Families Make Sense of Their Child’s Behaviour When on an Autism Assessment and Diagnosis Waiting List

“…Families can be understood as systems that produce and orientate to different difficulties in specific ways. For example, Crix et al (2012) and Stuart et al (2015) illustrated the difficulties for families of a young person with a diagnosis of Chronic Fatigue Syndrome (CFS) in managing discourses of illness and laziness, and the particular sensitivities for these families around mentioning or including psychological explanations in family sense making. Dale et al (2006) also noted how parental sense making affects parenting.…”