title: What is the current NHS service provision for patients severely affected by chronic fatigue syndrome/myalgic encephalomyelitis? A national scoping exercise.
abstract: BACKGROUND
  Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME), in its most severe clinical presentation, can result in patients becoming housebound and bedbound so unable to access most available specialist services. This presents particular clinical risks and treatment needs for which the National Institute for Health and Care Excellence (NICE) advises specialist medical care and monitoring. The extent of National Health Service (NHS) specialist provision in England for severe CFS/ME is currently unknown.
  
  
  OBJECTIVE
  To establish the current NHS provision for patients with severe CFS/ME in England.
  
  
  METHODS
  All 49 English NHS specialist CFS/ME adult services in England, in 2013.
  
  
  METHODS
  Cross-sectional survey by email questionnaire.
  
  
  METHODS
  Adherence to NICE guidelines for severe CFS/ME.
  
  
  RESULTS
  All 49 services replied (100%). 33% (16/49) of specialist CFS/ME services provided no service for housebound patients. 55% (27/49) services did treat patients with severe CFS/ME and their interventions followed the NICE guidelines. The remaining services (12%, 6/49) offered occasional or minimal support where funding allowed. There was one NHS unit providing specialist inpatient CFS/ME provision in England.
  
  
  CONCLUSIONS
  Study findings highlight substantial variation in access to specialist care for patients with severe presentation of CFS/ME. Where treatment was provided, this appeared to comply with NICE recommendations for this patient group.
authors.affiliation: Department of Primary Care and Population Science, University of Southampton, Southampton, Hampshire, UK.
authors.forename: Clare
authors.initials: C
authors.lastname: McDermott
authors.affiliation: Faculty of Medicine, University of Southampton, Southampton, Hampshire, UK.
authors.forename: Atheer
authors.initials: A
authors.lastname: Al Haddabi
authors.affiliation: Leeds and West Yorkshire CFS/ME Service, Seacroft Hospital, Leeds, Yorkshire, UK.
authors.forename: Hiroko
authors.initials: H
authors.lastname: Akagi
authors.affiliation: Dorset CFS/ME Service, Wareham Hospital, Wareham, Dorset, UK.
authors.forename: Michelle
authors.initials: M
authors.lastname: Selby
authors.affiliation: University of Cumbria, Lancaster, UK.
authors.forename: Diane
authors.initials: D
authors.lastname: Cox
authors.affiliation: Department of Primary Care and Population Science, University of Southampton, Southampton, Hampshire, UK.
authors.forename: George
authors.initials: G
authors.lastname: Lewith
mesh_terms: D003430:Cross-Sectional Studies; D015673:Fatigue Syndrome, Chronic / Q000628:therapy*; D006296:Health Services / Q000600:supply & distribution*; D006801:Humans; D012720:Severity of Illness Index; D013222:State Medicine; D011795:Surveys and Questionnaires; D006113:United Kingdom
keywords: Neurology; Primary Care