title: Adolescents and mothers value referral to a specialist service for chronic fatigue syndrome or myalgic encephalopathy (CFS/ME).
abstract: BACKGROUND
  Paediatric chronic fatigue syndrome or myalgic encephalopathy (CFS/ME) is relatively common and disabling. Current guidance recommends referral to specialist services, although some general practitioners believe the label of CFS/ME is harmful and many are not confident about diagnosing CFS/ME. Aim Explore whether or not adolescents and their mothers value referral to a specialist service for young people with CFS/ME.
  
  
  METHODS
  A qualitative study nested within a feasibility study of interventions for CFS/ME [Specialist Medical Intervention and Lightning Evaluation (SMILE)]. In-depth interviews were undertaken with 13 mothers and 12 adolescents participating in the SMILE study. Transcripts were systematically assigned codes using the qualitative data organisation package NVivo and analysed thematically using techniques of constant comparison.
  
  
  RESULTS
  Gaining access to the specialist service was difficult and took a long time. Mothers felt that they needed to be proactive and persistent, partly because of a lack of knowledge in primary and secondary care. Having gained access, mothers felt the CFS/ME service was useful because it recognised and acknowledged their child's condition and opened channels of dialogue between health-care professionals and education providers. Adolescents reported that specialist medical care resulted in better symptom management, although some adolescents did not like the fact that the treatment approach limited activity.
  
  
  CONCLUSIONS
  Adolescents and their mothers value receiving a diagnosis from a specialist service and making progress in managing CFS/ME. General practitioners should support adolescents with CFS/ME in accessing CFS/ME specialist services, consistent with current guidance.
authors.affiliation: 1 School of Social & Community Medicine, Centre for Child & Adolescent Health, University of Bristol, Oakfield Grove, UK.
authors.forename: Lucy
authors.initials: L
authors.lastname: Beasant
authors.affiliation: 2 School of Social and Community Medicine, University of Bristol, Canynge Hall, 39 Whatley Road, UK.
authors.forename: Nicola
authors.initials: N
authors.lastname: Mills
authors.affiliation: 1 School of Social & Community Medicine, Centre for Child & Adolescent Health, University of Bristol, Oakfield Grove, UK.
authors.forename: Esther
authors.initials: E
authors.lastname: Crawley
mesh_terms: D000293:Adolescent; D002648:Child; D015673:Fatigue Syndrome, Chronic; D005240:Feasibility Studies; D005260:Female; D006297:Health Services Accessibility; D006801:Humans; D008297:Male; D009035:Mothers / Q000523:psychology*; D057240:Patient Preference / Q000523:psychology*; D036301:Qualitative Research; D012017:Referral and Consultation; D013038:Specialization