ArticleBMC health services research2017
Adult patients' experiences of NHS specialist services for chronic fatigue syndrome (CFS/ME): a qualitative study in England.
Article in BMC health services research, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 9 papers, 2 of them syntheses that pooled it.
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Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
9 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Patients' experiences and effects of non-pharmacological treatment for myalgic encephalomyelitis/chronic fatigue syndrome - a scoping mixed methods review.International journal of qualitative studies on health and well-being · 2020Pooled it
- Behavioural modification interventions for medically unexplained symptoms in primary care: systematic reviews and economic evaluation.Health technology assessment (Winchester, England) · 2020Pooled it
- Qualitative study of the acceptability and feasibility of acceptance and commitment therapy for adolescents with chronic fatigue syndrome.BMJ paediatrics open · 2021Trial
- ME/CFS and the emotional toll of persistent disbelief: from epistemic to affective injustice.Medicine, health care, and philosophy · 2026Article
- Re-visiting professional ethics in psychotherapy: reflections on the use of talking therapies as a supportive adjunct for myalgic encephalomyelitis/chronic fatigue syndrome and 'medically unexplained symptoms'.Journal of medical ethics · 2026Article
- [Systems thinking, subjective findings and diagnostic "pigeonholing" in ME/CFS: A mainly qualitative public health study from a patient perspective].Deutsche medizinische Wochenschrift (1946) · 2024Article
- Nursing Diagnoses of Individuals with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Research Protocol for a Qualitative Synthesis.Healthcare (Basel, Switzerland) · 2022Article
- Experiences of Living with Severe Chronic Fatigue Syndrome/Myalgic Encephalomyelitis.Healthcare (Basel, Switzerland) · 2021Article
- Specialist treatment of chronic fatigue syndrome/ME: a cohort study among adult patients in England.BMC health services research · 2017Article
Corrections and comments
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Authors and funding
5 authors.
Funding
Abstract
backgroundFew studies have explored patients' experiences of treatment for CFS/ME. This study aims to fill this gap by capturing the perspective of patients who have been treated by NHS specialist CFS/ME services in England.
methodsSemi-structured interviews were conducted during the period June-September 2014 with 16 adults who were completing treatment at one of three outpatient NHS specialist CFS/ME services. Interviews were analysed thematically using constant comparison techniques, with particular attention paid to contrasting views.
resultsThree themes were identified: 'Journey to specialist services'; 'Things that help or hinder treatment'; and 'Support systems'. Within these themes nine sub-themes were identified. A wide range of factors was evident in forming participants' experiences, including personal characteristics such as perseverance and optimism, and service factors such as flexibility and positive, supportive relationships with clinicians. Participants described how specialist services played a unique role, which was related to the contested nature of the condition. Many participants had experienced a lack of validation and medical and social support before attending a specialist service. Patients' experiences of life before referral, and the concerns that they expressed about being discharged, highlighted the hardship and obstacles which people living with CFS/ME continue to experience in our society.
conclusionsThe experiences of CFS/ME patients in our study showed that NHS specialist CFS/ME services played a vital role in patients' journeys towards an improved quality of life. This improvement came about through a process which included validation of patients' experiences, acceptance of change, practical advice and support, and therapeutic outcomes.
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