The role of acceptance in chronic fatigue syndrome
Introduction
Chronic fatigue syndrome (CFS) is a disorder defined by persistent severe fatigue, unrelated to exertion and not relieved by rest, lasting at least 6 months [1], [2]. People with CFS generally experience muscle and joint pain; difficulties in cognitive and psychological functioning; disturbed sleep; and mental and physical exhaustion. These symptoms are associated with impaired physical and social functioning.
The present study considers CFS in the context of a cognitive behavioural approach, which focuses on how cognitive, behavioural, physiological and social factors interact to perpetuate the condition [3]. One aspect of this model suggests that unhelpful beliefs or thinking patterns such as catastrophising lead to a reduction in activity which worsens symptoms of CFS and creates a ‘vicious circle’ perpetuating fatigue and disability. It has been suggested [4] that the desire to meet responsibilities and high standards may be hindered by symptoms of fatigue, and the perceptions of actual or feared failure may then exacerbate the symptoms and cause further distress, thus creating another ‘vicious circle’. This desire to meet high standards may well be an aspect of perfectionism, which will be discussed further below.
One of the main interventions for CFS is Cognitive Behaviour Therapy (referred to hereafter as CBT), a collaborative treatment in which patient and therapist work together using a variety of techniques to improve fatigue and functioning. Therapy is adapted to the needs of the individual and may include: pacing (establishing a consistent pattern of activity and rest); gradual increase in activity levels; sleep management; and addressing unhelpful thinking patterns including perfectionism. Systematic reviews have shown CBT to be effective in improving functioning and reducing fatigue in CFS patients [5]. CBT, along with Graded Exercise Therapy, has also been shown in a non randomised trial to significantly improve “action-proneness” (cognitive and behavioural tendency towards direct action), although not to pre-morbid levels [6].
Research on patients with chronic pain has suggested that attempting to control pain which is uncontrollable (lack of acceptance) is associated with distress and frustration [7], [8], reduced physical functioning [9], higher pain identity and more serious perceived consequences [10]. Lack of acceptance has also been shown to be inversely related to the ability to undergo positive, personal change for better health and wellbeing [11]. Conversely, increased acceptance – giving up attempts to control pain – has been associated with less psychological distress and better wellbeing and adjustment [9], [12].
Despite the wealth of research into acceptance and chronic pain, the concept of acceptance in relation to chronic fatigue is discussed much less. One study which does consider the relationship between acceptance and CFS symptoms found that higher levels of acceptance were associated with greater psychological wellbeing and less distress in patients with CFS [13]. Another study, using an imagery paradigm, found that ‘acceptance imagery’ was associated with less hyperventilation in CFS patients than imagery of hostile resistance [14]. Analysis of qualitative interviews with CFS patients has suggested that acceptance may be a mechanism for integration of CFS as part of a new identity with adjusted values and re-conceptualised goals, which helps to restore a sense of personal control, self-esteem and self-worth [15]. There is however a gap in this literature regarding the relationship between acceptance and disability in sufferers of chronic illnesses.
It has been suggested [16] that perfectionism comprises two factors – ‘personal standards’ (striving to achieve high standards) and ‘evaluative concerns’ (self-doubt and criticism). It has also been argued [17] that there are two types of perfectionism – ‘positive’ and ‘negative’. The role of perfectionism in the aetiology of clinical disorders has been explored – for example, eating disorders [18]; depression [19]; and anxiety disorders [20]. However there is relatively little research about perfectionism and CFS: one study [21] found that CFS patients self-report as having high standards, while several others [22], [23], [24] found a link between CFS and negative aspects of perfectionism (doubts about actions, concern over mistakes). More specifically, ‘self-critical’ perfectionism has been shown to be related to increased stress sensitivity and depression in CFS patients [25].
The relationship between perfectionism and acceptance in CFS has hitherto not been explored. It is possible that participants with higher levels of perfectionism are more intolerant of symptoms and therefore less likely to be accepting of them. We hypothesise that lack of acceptance will be correlated with perfectionism, and aspects of perfectionism related to personal standards will improve after CBT as CBT addresses unhelpful perfectionistic beliefs if necessary.
This study aimed to extend the research of Van Damme et al. [13], exploring the relationship between acceptance and wellbeing using a larger cohort, and then considering the relationship between acceptance and aspects of perfectionism, and their relative contribution to fatigue and functioning in people with CFS. A further aim of this paper was to examine whether acceptance and perfectionism improved over time in CFS patients who received CBT, by comparing baseline, discharge and 3-month follow-up questionnaires.
We hypothesised that 1) increased acceptance would be related to improved fatigue and improved psychological wellbeing; 2) there would be a significant relationship between lack of acceptance and perfectionism and that they would be associated with fatigue and disability; 3) that acceptance and aspects of perfectionism related to the individual such as concern over mistakes and doubts about actions would improve after a course of CBT.
Section snippets
Participants
Participants were patients referred by their GP or hospital consultant to a specialist CFS Research and Treatment Unit in London to assess whether they fulfilled the CFS diagnostic criteria. A thorough assessment was completed and routine investigations as recommended by the NICE guidelines [26] ensured that other causes for fatigue were excluded. A total of 283 patients were assessed.
Treatment
Eleven trained cognitive behavioural psychotherapists, nurses, or clinical psychologists delivered CBT to
Demographics
Of the 283 patients initially recruited for the cross-sectional study, 259 (91.5%) completed the measures. Reasons for not completing included: no response from the patient (n=21); the patient moving away from the area (n=2); and the patient being referred elsewhere (n=1).
The final sample (those who completed baseline questionnaires) consisted of 195 female patients and 64 male patients, with a mean age of 39.2 years (mode: 33; SD=11.907; range: 18–80). Mean duration of CFS was 87 months (mode: 60
Discussion
This is the first study to our knowledge which shows a change in acceptance after CBT and also the first to show a relationship between lack of acceptance and aspects of perfectionism.
We found positive associations between lack of acceptance and fatigue, physical functioning and work and social adjustment. In regression analyses, the model with the best fit showed lack of acceptance to be the only factor significantly predicting physical functioning and the most important predictor of physical
Competing interests
Professor Chalder receives research support from the Biomedical Research Center for the South London and Maudsley NHS Foundation Trust and the Institute of Psychiatry. T Chalder is the author of the following books: Chalder T. (1995) Coping with Chronic Fatigue. Sheldon Press. London; Chalder T & Hussain K. (2002) Self help for Chronic Fatigue Syndrome. A guide for young people. Blue Stallion Publication. Oxon; Burgess M & Chalder T. (2005) Overcoming Chronic Fatigue. Constable & Robinson.
Acknowledgments
We thank the patients who participated in the study; the research assistants who entered the data (Julia Brown and Mary Ridge) and all therapists involved in collecting the data (Mary Burgess, Suzanne Roche, Barbara Bowman, Sue Wilkins, Antonia Dittner, Henry Prempeh Adu Bobi, Brendan Thomas, Tracey Turner, Stephen Perry, Sam Harvey and Caroline Heading). Katharine Rimes and Trudie Chalder acknowledge financial support from the Department of Health via the National Institute for Health Research
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