title: Developing resources to support the diagnosis and management of Chronic Fatigue Syndrome/Myalgic Encephalitis (CFS/ME) in primary care: a qualitative study.
abstract: BACKGROUND
  NICE guidelines emphasise the need for a confident, early diagnosis of Chronic Fatigue Syndrome/ Myalgic Encephalitis (CFS/ME) in Primary Care with management tailored to the needs of the patient. Research suggests that GPs are reluctant to make the diagnosis and resources for management are currently inadequate. This study aimed to develop resources for practitioners and patients to support the diagnosis and management of CFS/ME in primary care.
  
  
  METHODS
  Semi structured interviews were conducted with patients, carers, GPs, practice nurses and CFS/ME specialists in North West England. All interviews were audio recorded, transcribed and analysed qualitatively using open explorative thematic coding. Two patient involvement groups were consulted at each stage of the development of resources to ensure that the resources reflect everyday issues faced by people living with CFS/ME.
  
  
  RESULTS
  Patients and carers stressed the importance of recognising CFS/ME as a legitimate condition, and the need to be believed by health care professionals. GPs and practice nurses stated that they do not always have the knowledge or skills to diagnose and manage the condition. They expressed a preference for an online training package. For patients, information on getting the most out of a consultation and the role of carers was thought to be important. Patients did not want to be overloaded with information at diagnosis, and suggested information should be given in steps. A DVD was suggested, to enable information sharing with carers and family, and also for those whose symptoms act as a barrier to reading.
  
  
  CONCLUSIONS
  Rather than use a top-down approach to the development of training for health care practitioners and information for patients and carers, we have used data from key stakeholders to develop a patient DVD, patient leaflets to guide symptom management and a modular e-learning resource which should equip GPs to diagnose and manage CFS/ME effectively, meet NICE guidelines and give patients acceptable, evidence-based information.
authors.affiliation: School of Community Based Medicine, University of Manchester, Manchester, UK. kerin.hannon@manchester.ac.uk
authors.forename: Kerin
authors.initials: K
authors.lastname: Hannon
authors.forename: Sarah
authors.initials: S
authors.lastname: Peters
authors.forename: Louise
authors.initials: L
authors.lastname: Fisher
authors.forename: Lisa
authors.initials: L
authors.lastname: Riste
authors.forename: Alison
authors.initials: A
authors.lastname: Wearden
authors.forename: Karina
authors.initials: K
authors.lastname: Lovell
authors.forename: Pam
authors.initials: P
authors.lastname: Turner
authors.forename: Yvonne
authors.initials: Y
authors.lastname: Leech
authors.forename: Carolyn
authors.initials: C
authors.lastname: Chew-Graham
mesh_terms: D000328:Adult; D000368:Aged; D001291:Attitude of Health Personnel; D017028:Caregivers; D003142:Communication; D003194:Computer-Assisted Instruction; D004739:England; D015673:Fatigue Syndrome, Chronic / Q000175:diagnosis / Q000628:therapy; D005260:Female; D058006:General Practice; D006301:Health Services Needs and Demand; D006801:Humans; D008297:Male; D008503:Medical Staff; D008875:Middle Aged; D009740:Nursing Staff; D057240:Patient Preference; D010817:Physician-Patient Relations; D011320:Primary Health Care / Q000379:methods*; D036301:Qualitative Research