A UK based review of recommendations regarding the management of chronic fatigue syndrome
Introduction
Chronic fatigue syndrome (CFS), also named myalgic encephalomyelitis (ME), is a condition that still creates debates regarding definition, aetiology, diagnosis and treatment [1]. The condition is found world-wide, with a meta-analysis suggesting a prevalence of 0.76% [2]. Treatment trials have focused on rehabilitation therapies [3]. People with CFS/ME can receive conflicting treatment options from medical sources and patient support organisations.
The National Institute of Health and Care Excellence (NICE) guidelines on CFS/ME [4] have been subject to criticisms from some patient organisations on the basis that they consider the main treatments recommended by NICE, namely cognitive behaviour therapy (CBT) and graded exercise therapy (GET), as either unsafe or unhelpful. [5], [6]. Some CFS/ME patient support organisations have claimed that NICE has overlooked the physical component of the illness [6]. Of relevance to this, Hossenbaccus and White found that patient support organisations considered CFS/ME to be a physical disease, whereas medical authorities were more likely to consider CFS/ME as being a combination of physical and psychological factors [7].
The UK based PACE trial agreed with the NICE guidelines [4], finding that CBT and GET, when combined with specialist care, were safe and effective treatments for CFS/ME, whereas pacing was ineffective [3]. Some patient support organisations have continued to promote a pacing approach [5], [7], [8], [9].
Stories about CFS/ME are often reported in the media and online forums are expanding [1], [7], [10]. For illnesses such as CFS/ME, where recommended treatments are not universally supported, patients can search for alternative treatments through forums and patient organisations.
Knudsen et al. [1], found that newspaper articles in Norway were generally positive towards alternative treatments and negative towards evidence-based treatments (mainly CBT and GET); patients preferred alternative treatments; physicians favoured evidence based treatments; and the Norwegian ME association was critical of evidence-based treatments [1].
We are not aware of any published studies of views of treatments comparing patient support groups and medical sources. This study aimed to determine whether there were significant differences between which treatments were recommended, or discouraged, between these two groups. We predicted that patient groups would favour pharmacological, complementary and alternative (CAM) treatments, and pacing, whereas medical sources would prefer rehabilitative based therapies.
Section snippets
Methods
A database was created using both internet searches and a catalogue of CFS/ME patient organisations previously used in the study by Hossenbaccus and White (see supplementary material) [7]. The medical sources group was comprised of websites from medical Royal Colleges, the UK National Health Service, NICE, the Department of Health and British United Patients Association, together with textbooks found in the medical school library of Barts and the London. The appendix contains all sources
Results
The total number of sources used for analysis was 95, with 60 medical authorities and 35 CFS/ME patient support organisations surveyed. Not all sources mentioned every treatment group; so numbers of sources for each treatment group were 48, 65, 81 and 38 for CAM, pharmacological, rehabilitative and pacing respectively. The two raters sought and achieved consensus for 37 mean scores out of 380 (10%). The intra-class correlation between independent raters' scores was 0.96 (p < 0.001) with a median
Discussion
There were significantly different recommendations between CFS/ME patient support organisations and medical sources across all four treatment groups. Whilst patient support organisations favoured CAMs, pharmacological and pacing therapies, about half were against rehabilitative therapies. The medical authorities viewed CAMs negatively, and recommended rehabilitative treatment.
These findings support our hypotheses and support the finding from Knudsen et al. [1]. Together with the study by
Conflicts of interest
PDW is an appointed member of the Independent Medical Experts Group, which advises the UK Ministry of Defence regarding the Armed Forces Compensation Scheme. PDW provides advice to the Department for Work and Pensions and does consultancy work for a re-insurance company. The other co-authors declare no conflicts of interest.
Acknowledgements
We are grateful for feedback on a previous version of this paper.
References (14)
- et al.
Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial
Lancet
(2011) - et al.
Antiscience and ethical concerns associated with advocacy of Lyme disease
Lancet Infect. Dis.
(2011) - et al.
Chronic fatigue syndrome in the media: a content analysis of newspaper articles
JRSM Short Rep.
(2011) - et al.
The prevalence of chronic fatigue syndrome/myalgic encephalomyelitis: a meta-analysis
Clinical Epidemiology.
(2013) Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (or Encephalopathy): Diagnosis and Management of CFS/ME in Adults and Children. (Clinical Guideline CG53)
(2007)CBT, GET, Pacing Report
ME/CFS Illness Management Survey Results: “No Decisions About Me Without Me”
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2018, Probiotics in Mental HealthAdult patients’ experiences of NHS specialist services for chronic fatigue syndrome (CFS/ME): a qualitative study in England
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