Chronic Fatigue Syndrome: An Evaluation of a Community Based Management Programme for Adolescents and their Families

Abstract

Background: Young people with chronic fatigue syndrome (CFS), families and clinicians may differ in their attributions about CFS and consequently in their approach to treatment. Research that clarifies the best treatment approaches is clearly needed. We have sought to develop a model that engages young people and their families in a collaborative way. The approach adopts an optimistic and holistic stance using an active rehabilitation model paying attention to the integrated nature of the physiological and psychological aspects of the illness. Method: This small study set out to evaluate this approach from a service user perspective. Semi‐structured interviews were carried out with young people and their parents separately in order to elicit their views on key treatment elements and their perceived degree of recovery. Results: Improvements are indicated in all key areas addressed and qualitative information suggests that families value this approach. Conclusion: Further research is needed to address treatment issues for families who choose not to opt into the service model.

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

“…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.…”

“…The synthesis revealed that children develop narratives of physical and psychological attributions to gain legitimacy. Most children attribute physical reasons such as infection as a key factor in developing CFS/ME,49 53 54 some children have a multicausal understanding of their condition as physical and psychological in origin. Psychological difficulties, such as experiencing stressful events, were perceived by children as causing their condition 46…”

Interventions to treat pain in paediatric CFS/ME: a systematic review

“…In total, we identified 26 RCTs or observational studies that investigated treatment interventions in paediatric CFS/ME. However, 19 of these studies did not measure pain at any time point,24–43 and two studies measured pain at a single time point only 10 44. They were therefore excluded from this review.…”

“…They were therefore excluded from this review. Four of the studies included the prevalence of self-reported symptoms, for example, muscle aches, abdominal discomfort and tender lymph nodes, but did not include measures of pain severity 24 25 31 41. The remaining studies did not discuss pain at all.…”

Pervasive Refusal Syndrome

“…The mental health professionals bring the biopsychosocial model (Wright & Cottrell, 1999) to the fore providing a formulation that brings the attributional, systemic, emotional, social and psychological together with the physical. Good communication and care planning can be systematically discussed with problems being worked through as they arise (Ashby et al, 2006) Finally, it may well be worth the medical community considering new terminology in the place of pervasive refusal syndrome. Families we have seen report that whilst they value the sensitive way in which the label is applied by clinicians, they can feel stigmatized by it.…”