Sly Saint
Senior Member (Voting Rights)
very long Abstract
https://link.springer.com/article/10.1007/s42087-020-00123-9Abstract
Mindfulness-Based Cognitive Therapy (MBCT) was lightly adapted for participants diagnosed with chronic fatigue syndrome (CFS). The aim of the study was to explore participants’ experiences of the MBCT course, with a particular focus on how they applied MBCT to living with and coping with the symptoms of CFS. Nine participants with CFS who completed the MBCT course were interviewed using semi-structured interview methods. Inductive thematic analysis, a methodology designed to generate themes from the “bottom up,” was used. Four superordinate themes were generated from the data: (1) awareness of unhelpful behavioral patterns associated with CFS, (2) benefits of group solidarity, (3) use of mindfulness tools to facilitate shifts in behavioral patterns, and (4) a sense of change and agency. Participants became aware of three specific transformative changes that contributed to a more skillful way of living with CFS: development of acceptance, improved self-care and self-compassion, and reduction in heightened stress response. MBCT appears to enable people with CFS to actively work with their symptoms, and make transformative changes in their behavioral patterns, resulting in benefits to well-being.
Chronic fatigue syndrome (CFS) is a poorly understood condition characterized by a minimum of 6 months of persistent, medically unexplained, debilitating fatigue, not caused by on-going exertion or relieved by rest, and which substantially interferes with activities of daily living (Centers for Disease Control and Prevention 2014; Fukuda et al. 1994). The syndrome, frequently triggered by a viral infection, often has a heterogeneous presentation, an unclear etiology, which may be of genetic, immunological, endocrinological, and/or neurological origin, and is associated with premorbid psychological personality traits (Carruthers et al. 2003).
Primary care practitioners are often reluctant to diagnose CFS, due to a poor knowledge about the condition and a lack of a clear management plan (Chew-Graham et al. 2010). As a result, patients with CFS frequently experience misunderstanding, judgment, and skepticism around their illness from both healthcare providers and their own social networks. This judgment is frequently perceived as an implication that they are malingering, lazy, or even lying about the severity of their symptoms (Åsbring and Närvänen 2002; Larun and Malterud 2007).
The experience of stigma from healthcare providers and their own social networks (Dickson et al. 2008; Larun and Malterud 2007) powerfully jars with a characteristic set of personality traits typically found within the CFS population: perfectionism, a conscientious and driven working style, and self-criticism (Asbring 2001; Whitehead 2006). These traits seem to serve as both etiological factors and on-going drivers of the condition as people with CFS make great efforts to maintain their premorbid active status, which often results in exhaustion (Hambrook et al. 2011; Van Houdenhove and Luyten 2008).
Moss-Morris and Chalder (2003), Larun and Malterud (2007), and Van Houdenhove and Luyten (2008) found that most people with CFS had deeply held beliefs that their condition was purely physical in etiology and as a result were strongly resistant to suggestions of any emotional or psychological component to CFS. These beliefs correlated with poorer outcomes in terms of on-going fatigue, impairment, resistance to adjustment, and slower recovery. In contrast, people with CFS who are willing to accept some degree of psychological etiology were then able to take steps to actively manage their condition, such as attempting realistic activity within the constraints of their fatigue, and this is associated with improvement in CFS symptoms (Heijmans 1998; Moss-Morris and Chalder 2003).
Stress appears to be part of the mechanism of origin and perpetuation of CFS, and may explain some of the symptomatology (Van Houdenhove and Luyten 2008). Luyten et al. (2011) and Clements et al. (1997) found that half of their participants with CFS acknowledged that stress, albeit as an external experience and therefore out of their control and responsibility, was an etiological factor contributing to their CFS symptoms. People with CFS have a tendency to over-think, especially with regard to their CFS symptomatology, which can relate to strong beliefs that increased activity would have highly negative effects on their CFS. This can lead to an avoidant, disengaged, and passive attitude to recovery, particularly around kinesiophobia, a fear of movement (Moss-Morris et al. 2005; Van Houdenhove and Luyten 2008).
There appears to be a typical behavioral pattern associated with people suffering from CFS. Over-activity geared towards striving to maintain a premorbid high-functioning status, followed by excessive rest periods driven by a fear that any activity could aggravate symptoms seems to underpin, perpetuate, and aggravate CFS (Åsbring and Närvänen 2002; Van Houdenhove and Luyten 2008; Whitehead 2006). This is the cognitive theory of CFS (Surawy et al. 1995). This Cognitive Behavioral model, sometimes known as the “boom and bust” cycle, clearly provides openings for the application of Cognitive Behavioral Therapy (CBT), which can be utilised to alter the beliefs, cognitions, and behavior that perpetuate CFS.
Several quantitative studies report beneficial effects of CBT for people with CFS: reduced fatigue, return to daily activities and work, and improved quality of life and mood (Chambers et al. 2006; Knoop et al. 2007). These improvements may be due to CBT increasing participants’ awareness of self-perpetuating illness-related cognitions such as perfectionist tendencies, alongside encouragement of an active rather than passive coping model. CBT may also help to alter the maladaptive and illness-perpetuating oscillation between extreme over-exertion and extreme avoidance of exertion (Sharpe et al. 1996; Surawy et al. 1995; Wiborg et al. 2010).
Given the characteristics of CFS, training in mindfulness, characterized as “intentional self-regulation of attention from moment to moment” (Kabat-Zinn 1982, p. 34), has the capacity to further increase self-awareness with the potential to augment the benefits of CBT. A recent cross-sectional study reported that in the general population, higher fatigue was associated with lower dispositional mindfulness, and the authors reported that MBPs may have the potential to alleviate fatigue among general populations (Whitaker et al. 2019).
There is emerging research interest in adapting Mindfulness-Based Programmes (MBPs) for people with CFS, albeit the area is in its infancy. We could find just three quantitative studies exploring MBPs for people with CFS. Surawy et al. (2005) assessed three exploratory studies which evaluated the benefits of Mindfulness-Based Cognitive Therapy (MBCT) and Mindfulness-Based Stress Reduction (MBSR) in people with CFS and reported improvements in levels of anxiety (effect size 0.84–1.32), subjective experience of fatigue (effect size 0.84–1.6), and enhanced quality of life (effect size 0.68–0.86). Sampalli et al. (2009) explored the changes in symptomatology of CFS patients after attending an MBSR course, and found statistically significant improvements in global scores of somatization, depression, and anxiety. Rimes and Wingrove (2013), in a study with participants still experiencing excessive fatigue after CBT, additionally found statistically significant improvements in unhelpful cognitions (p = .012) and all-or-nothing behavior (p = .017) after attending an MBCT course.
The question of the mechanism of how the MBP led to the observed improvements was postulated in the three studies, but not explored directly. Each research team attributed these improvements to a similar mechanism that mindfulness, through its cultivation of awareness, increased consciousness of maladaptive patterns of thinking and behavior (Rimes and Wingrove 2013; Sampalli et al. 2009; Surawy et al. 2005). This in turn appeared to lead to improved regulation in the form of response and relationship to unhelpful thought processes, both the over-focus on illness-related CFS symptomatology and hyper-vigilant, catastrophizing thinking. In addition, researchers proposed a potential shift in perspective towards acceptance and adaptation. However, the mechanisms proposed are putative; to date there are no studies that examine the mechanisms of MBPs in this population.
The aim of the study was, to explore, the participants’ experiences of the MBCT course, with a particular focus on how they applied MBCT to living with the symptoms of CFS, and the putative mechanisms by which MBCT might help people with CFS manage their symptomology.
