Reviewing the Impact of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome on Daily Functioning Using a Holistic Model It’s Implication on Intervention

Emotional, mental and physical fatigue resulting from the effects of ME/CFS is accompanied by biological and psychosocial problems [13]. Memory problems, difficulties with concentration and sleep problems are often resulted from depressive moods, stress and/or emotional triggers, which contribute to a diminished ability to participate in occupation [14]. For example, a person may have difficulty with relationships, social activities and/or experience educational and vocational losses. Attree et al., [13] discussed how prospective memory affects the daily lives of people with ME/CFS. Remembering to pass a message to a friend or turn off the stove after cooking a meal or take medication may be disrupted by cognitive failures. Multiple or detailed tasks may increase the individual’s fatigue and result in poorer performance, this in turn affects the individual’s view of their self.

Lopez et al., [15] tested a group-based intervention called Cognitive Behavioural Stress Management (CBSM). This intervention addressed the individual’s stress, quality of life and symptoms of ME/CFS. Recognizing that stress may further dysregulate the immune system, the CBSM incorporates relaxation techniques, cognitive restructuring and interpersonal skills such as assertiveness and anger management. Group participation may also improve perceptions of social support. In the past, findings have indicated that CBSM reduce the symptoms of ME/CFS and improve individual’s quality of life [15]. Practical life skills that aid the person in developing self-regulation skills can be taught and practiced when the individual’s are engaged in occupation. Skills that contribute to successful engagement may improve the person’s perceived quality of life and ultimately the person’s affect. In addition, Attree et al., [13] suggestion of management programs that focus on factors such as self-efficacy is in line with the CMOP-E framework. Identifying rehabilitation assessment tools and interventions that address the person’s belief in their ability to participate in meaningful occupation may improve the life quality of individual’s with ME/CFS.

Physical symptoms of ME/CFS include post-exertional malaise, headaches, sore-throats, tender lymph nodes and generalized pain [7]. In addition to overwhelming fatigue, the implications of these physical symptoms drastically reduce an individual’s ability to participate in daily activities. The legitimacy of these physical symptom reports by people with ME/CFS have been scrutinized by the medical model resulting in improper diagnosis, treatment and recommendation for people with ME/CFS. These prominent features of ME/CFS have been found to impair individual’s participation in activity and their ability to maintain previous roles [16].

Review of the literature indicates that commonly recommended interventions to address the physical symptoms such as Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET) have mixed results. There are discrepancies between patient reports of the effectiveness of GET and Randomized Control Trials (RCT) evidence supporting the efficacy of GET. For example, some studies have found a moderate improvement with GET and CBT using quality of life measures [17,18]. However, self-report measures showed that individuals who participated in GET perceived themselves as worse [17,18]. Some patients have described clinical encounters when receiving CBT and GET as “harmful”, stating a feeling of being ‘pushed’ to exercise and feeling blamed when the recommendations are not working. In addition, individuals with ME/CFS reported that the effectiveness of CBT and GET often contradict with the National Institute for Clinical Excellence (NICE) guideline [19] which recommends the need for psychological therapy and physical activity [8].

Other interventions that are more accepted by individuals with ME/CFS include adaptive pacing therapy which teaches them to stay in within their “energy envelope” [18]. A rehabilitation management tool that teaches clients to self-monitor and self-regulate their energy expenditures is described by Jason et al., [18]. This provides an alternative approach to the more commonly prescribed treatments and may be more suitable for individuals with ME/CFS. Since the energy level of people with ME/CFS can fluctuate on a given day, it is more important to provide interventions that teach individuals with ME/CFS to self-monitor and self-regulate their energy. Studies have demonstrated that teaching a person with ME/CFS to stay within their “energy envelope”, pace activities and manage symptoms can remarkably improve their quality of life [20]. However, it is important to note that while the energy envelope theory and adaptive pacing therapy seem beneficial, some findings were not supportive of these techniques. For example, White et al., [17] found that adaptive pacing did not show more effective outcome than standard medical treatments, and others have reviewed mixed findings for patients with ME/CFS applying the pacing techniques [21-23]. Some reports also commented that research supporting the envelop theory was weak and that energy conservation techniques, e.g., asking patients to stay within their energy envelop, might lead to reduced level of activity or function or even negatively promote a state of "staying in an envelope of ill health" [19,21,23,24].

The energy envelope approach is a rehabilitation method that originally appeared in 1997 for teaching individuals with ME/CFS to assess their perceived available energy to aid in avoiding overexertion [18]. It proposes that individual’s with ME/CFS who overexert themselves cut back on activity to prevent relapses. When conserving energy they are able to regain tolerances to activity over the long-term [18]. By using client-centred tools such as teaching self-regulation and self-monitoring within a context meaningful to the individuals, these individuals would be able to sustain their mental and physical functioning while minimizing relapses and reducing symptom severity. The CMOP-E framework embraces the concepts of these techniques because the therapeutic process focuses on having patients to identify their treatment goals and encourages patients to actively participate in daily activities. For example, the CMOP-E can be used for people with ME/CFS to identify areas of deficits in occupational performance, e.g., what activities are important to him/her and what tasks that he/she would like to complete, and then monitor his/her energy expenditure to prevent set-backs and take reasonable steps towards completing his/her goal(s). Hence, using the CMOP-E, therapists encourage patients to engage in activity by enabling individuals affected with this illness to prioritize what is meaningful to them. However, given the inconclusive evidence of these techniques, i.e., adaptive pacing and staying within energy envelope, the application of these techniques remains cautious and patients who use these techniques should be continuously monitored to determine effectiveness or identify adverse effects.

Individuals with ME/CFS have cognitive difficulties including difficulties with memory, information processing speed, sustained and/or divided attention [25]. According to Komaroff and Buchwald [26] and Grafman [27] as cited in Shanks et al., [25], 85-95% of people with ME/CFS have cognitive problems which affect daily functioning. In addition, physical exertion can result in reduced cognitive function and debilitating malaise [28]. The “overload phenomena” brought on by the persons’ hypersensitivity to environmental stimuli, e.g., odors, temperature extremes and noise, causes worsening of cognitive and other symptoms. This worsening of symptoms can result in what has been described as a “crash”. The person with ME/CFS is immobilized by physical and/or mental exhaustion and the recovery process from these periods is slow [29].

The multitude of symptoms experienced by a person with ME/CFS demands the need for a comprehensive client-centred rehabilitation plan. In a large randomized research trial, the effectiveness of four treatments for individuals with ME/CFS was tested [17]. They compared treatment outcomes on patients who received Specialist Medical Care (SMC) alone or with Adaptive Pacing Therapy (APT), Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET). Findings from this study supported CBT and GET as a reliable form of therapy for individuals with ME/CFS. The trial did not support APT for ME/CFS. Since some individuals with ME/CFS have reported these therapies as being non-effective, there is a need for qualitative research including narratives or description of experiences from individuals with ME/CFS.

In the CMOP-E model, meaningful occupation is defined by the client [10]. Tools to assess the person’s function and participation in interventions that are deemed important by the client may be necessary for developing a meaningful treatment program. Meaningful occupation may increase individuals’ participation and/or compliance with the treatment plan.