title: Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) in adults: a qualitative study of perspectives from professional practice.
abstract: BACKGROUND
  Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) can cause profound and prolonged illness and disability, and poses significant problems of uncertainty for healthcare professionals in its diagnosis and management. The aim of this qualitative study was to explore the nature of professional 'best practice' in working with people with CFS/ME.
  
  
  METHODS
  The views and experiences of health care practitioners (HCPs) were sought, who had been judged by people with CFS/ME themselves to have been particularly helpful and effective. Qualitative semi-structured interviews following a topic guide were carried out with six health care practitioners. Interviews were audio-recorded, transcribed and subject to thematic analysis.
  
  
  RESULTS
  Five main themes were developed: 1) Diagnosis; 2) Professional perspectives on living with CFS/ME; 3) Interventions for treatment and management; 4) Professional values and support for people with CFS/ME and their families; 5) Health professional roles and working practices. Key findings related to: the diagnostic process, especially the degree of uncertainty which may be shared by primary care physicians and patients alike; the continued denial in some quarters of the existence of CFS/ME as a condition; the variability, complexity, and serious impact of the condition on life and living; the onus on the person with CFS/ME to manage their condition, supported by HCPs; the wealth of often conflicting and confusing information on the condition and options for treatment; and the vital role of extended listening and trustful relationships with patients.
  
  
  CONCLUSIONS
  While professional frustrations were clearly expressed about the variability of services both in primary and specialist care and continuing equivocal attitudes to CFS/ME as a condition, there were also strong positive messages for people with CFS/ME where the right services are in place. Many of the findings from these practitioners seen by their patients as helping them more effectively, accord with the existing literature identifying the particular importance of listening skills, respect and trust for establishing a therapeutic relationship which recognises key features of the patient trajectory and promotes effective person-centred management of this complex condition. These findings indicate the need to build such skills and knowledge more systematically into professional training informed by the experience of specialist services and those living with the condition.
authors.affiliation: University of East Anglia, Norwich, UK. s.horton@uea.ac.uk
authors.forename: Simon M C
authors.initials: SM
authors.lastname: Horton
authors.forename: Fiona
authors.initials: F
authors.lastname: Poland
authors.forename: Swati
authors.initials: S
authors.lastname: Kale
authors.forename: Maria de Lourdes
authors.initials: Mde L
authors.lastname: Drachler
authors.forename: Jose Carlos
authors.initials: JC
authors.lastname: de Carvalho Leite
authors.forename: Maggie A
authors.initials: MA
authors.lastname: McArthur
authors.forename: Peter D
authors.initials: PD
authors.lastname: Campion
authors.forename: Derek
authors.initials: D
authors.lastname: Pheby
authors.forename: Luis
authors.initials: L
authors.lastname: Nacul
mesh_terms: D000328:Adult; D001291:Attitude of Health Personnel; D015673:Fatigue Syndrome, Chronic / Q000175:diagnosis / Q000628:therapy*; D005260:Female; D006304:Health Status; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D010817:Physician-Patient Relations; D010821:Physicians, Family / Q000523:psychology / Q000706:statistics & numerical data; D010818:Practice Patterns, Physicians'; D036301:Qualitative Research; D011788:Quality of Life