title: Use of an online survey to explore positive and negative outcomes of rehabilitation for people with CFS/ME.
abstract: OBJECTIVE
  First, to explore the experiences of people with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) of rehabilitation therapies so as to build an understanding of reasons for the discrepancy between the notably mixed experiences regarding effectiveness reported in patient surveys and the RCT evidence about the efficacy of Graded Exercise Therapy (GET). GET is a form of structured and supervised activity management that aims for gradual but progressive increases in physical activity. Second, to review patient experiences of two related rehabilitation approaches, Exercise on Prescription (EoP) and Graded Activity Therapy (GAT).
  
  
  METHODS
  An online survey conducted by the charity Action for ME generated qualitative data about 76 patient experiences of rehabilitation undertaken during or after 2008, examined using thematic analysis.
  
  
  RESULTS
  Both positive and negative experiences of rehabilitation were reported. Positive themes included supportive communication, the benefits of a routine linked with baseline setting and pacing, the value of goal setting, and increasing confidence associated with exercise. Negative themes included poor communication, feeling pushed to exercise beyond a sustainable level, having no setback plan, and patients feeling blamed for rehabilitation not working.
  
  
  CONCLUSIONS
  The negative themes may help explain the negative outcomes from rehabilitation reported by previous patient surveys. The negative themes indicate rehabilitation processes which contradict the NICE (National Institute for Health and Clinical Excellence) Guideline advice regarding GET, indicating that some clinical encounters were not implementing these. These findings suggest areas for improving therapist training, and for developing quality criteria for rehabilitation in CFS/ME. Implications for Rehabilitation The insensitive delivery of rehabilitation support for people with CFS/ME can explain negative outcomes reported in patient surveys. Therapist-patient collaboration, establishing a sustainable baseline and agreeing a setback plan are all examples of higher quality rehabilitation indicated by this research. Greater awareness of the positive and negative experiences of rehabilitation therapies should enable avoidance of the potential pitfalls identified in this research. Positive experiences of rehabilitation therapies include supportive communication with a therapist, treatment which included routines and goals, and value attached to baselines and controlled pacing. By contrast, factors leading to negative experiences include poor communication and support, conflict in beliefs about CFS/ME and rehabilitation, pressure to comply with treatment, worsening of symptoms, baselines experienced as unsustainable, and feeling blamed for rehabilitation not working.
authors.affiliation: North Bristol NHS Trust , Bristol , UK .
authors.forename: Peter William
authors.initials: PW
authors.lastname: Gladwell
authors.forename: Derek
authors.initials: D
authors.lastname: Pheby
authors.forename: Tristana
authors.initials: T
authors.lastname: Rodriguez
authors.forename: Fiona
authors.initials: F
authors.lastname: Poland
mesh_terms: D000328:Adult; D001291:Attitude of Health Personnel; D003625:Data Collection; D005081:Exercise Therapy / Q000379:methods / Q000523:psychology / Q000706:statistics & numerical data; D015673:Fatigue Syndrome, Chronic / Q000453:epidemiology / Q000523:psychology / Q000534:rehabilitation; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D020380:Needs Assessment; D017063:Outcome Assessment, Health Care / Q000379:methods / Q000592:standards / Q000706:statistics & numerical data; D057240:Patient Preference; D059825:Physical Therapists / Q000523:psychology* / Q000592:standards; D011369:Professional-Patient Relations; D016032:Randomized Controlled Trials as Topic / Q000706:statistics & numerical data*; D057566:Self Report; D013192:Staff Development; D016896:Treatment Outcome; D006113:United Kingdom