Journal of Alternative Complementary & Integrative Medicine Category: Medicine Type: Review Article
Reviewing the Impact of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome on Daily Functioning Using a Holistic Model It’s Implication on Intervention
- Tracy Procknow1, Ada WS Leung2*
- 1 Department Of Occupational Therapy, University Of Alberta, Edmonton, Alberta, Canada
- 2 Department Of Occupational Therapy, Faculty Of Rehabilitation Medicine, University Of Alberta, Edmonton, Alberta T6G 2G4, Canada
*Corresponding Author:Ada WS Leung
Department Of Occupational Therapy, Faculty Of Rehabilitation Medicine, University Of Alberta, Edmonton, Alberta T6G 2G4, Canada
Received Date: Jul 15, 2015 Accepted Date: Jul 16, 2015 Published Date: Jul 31, 2015
This review examines the disruption to individual’s life quality by recognizing the symptoms of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and their impact on a person’s occupational performance. The Canadian Model of Occupational Performance and-Engagement (CMOP-E) provides a holistic theoretical framework to analyze the impact of ME/CFS on occupational performance and assists in the identification of non-pharmacological interventions. Discussion on the importance of engagement to persons’ health and well-being is reviewed and barriers to participation are highlighted. The CMOP-E framework is recognized as a useful tool in the assessment and treatment for individual’s with ME/CFS. This paper illustrates how occupational therapy practice applies the CMOP-E to help persons with ME/CFS participate actively in daily living tasks and improve function. Additionally, the CMOP-E framework, which is widely adopted in occupational therapy practice, can be applied in multidisciplinary rehabilitative treatments to improve patients’ health and quality of life. The review also proposes some recommendations/guidelines for designing treatment interventions for ME/CFS.
Myalgic Encephalomyelitis, more commonly known as Chronic Fatigue Syndrome (ME/CFS), is a debilitating condition characterized by intrusive fatigue exacerbated by physical or cognitive exertion. This kind of fatigue does not improve with rest and is presented along with a cluster of other various cognitive and physical symptoms. Post-exertional malaise, impaired concentration and memory, and unrefreshing sleep are characteristics of this illness [1,2]. In an overview of the Canadian Consensus Document on ME/CFS, Carruthers and van de Sande  provide a clinical case definition, describing the disorder as an “acquired organic, pathophysiological, multisystemic illness” emphasizing the connection between activity and fatigue. However, some of the works from Fukuda et al.,  have shown that diagnostic tests or pathognomonic signs of ME/CFS are not well validated. There have been numerous reports discussing the confusion of evidence on the aetiology of ME/CFS . In particular, the symptoms of ME/CFS have been classified in the fifth edition of the Diagnostic and Statistical Manual of Mental Disorder (DSM-IV) as somatic symptoms disorders , indicating the importance of using a biopsychosocial approach to prevent over-sight on the severity of the condition and warrant repeated medical referrals to address patients’ psychosocial symptoms . Overall, these reports demonstrate evidence of the physiological and biochemical abnormalities in patients with ME/CFS and suggest that the symptoms of ME/CFS are resulted from the underlying biological and physiological mechanisms of ME/CFS. The commonalities between these abnormalities are debilitating fatigue that is not recovered with rest, lightheadedness, sore-throats, muscle pain, tender glands and headache.
The illness affects all ages, races and socio-economic groups. It has a significant impact on the individual’s lives, their families and caregivers. According to Friedberg et al., , at least one million Americans have been diagnosed with ME/CFS. The disorder most commonly occurs between the ages of 20 and 50 though children and adolescents have been affected. There are approximately .42% of the adult population in the United States affected by ME/CFS and approximately 70% of them are female . In children it appears equal number of boys and girls are affected . In Canada, 411,500 people have been diagnosed with ME/CFS, which is almost 4 times more common than Multiple Sclerosis . The illness also has serious effects on a person’s ability to perform their pre-morbid roles. Reduction in a person’s ability to carry out activities of daily living may result in a lower sense of competence and poor quality of life . Despite the multitude of information available, there continues to be barriers to diagnosis, assessment and intervention for individual’s afflicted with ME/CFS. These barriers ultimately impede the rehabilitation plan and occupational adaptation and in some cases recovery from the illness. This review will examine and discuss different aspects of functional deficits and their most updated treatment strategies for people with ME/CFS using the Canadian Model of Occupational Performance and-Engagement (CMOP-E) framework. The review will also propose potential intervention strategies to facilitate daily performance and improve quality of life of these individual’s.
ME/CFS: A CMOP-E PERSPECTIVE
The CMOP-E framework is an encompassing approach, which recognizes treatment at the individual level and the importance of providing environmental supports to facilitate successful occupational engagement and promote optimal function. Recognition of individual’s ME/CFS experience and knowledge and involving the person in identifying interventions supports a client-centred approach, which is the foundation of occupational therapy practice . According to the framework, individual’s successful function is based on the interplay between the person, environment and occupation. Hence, incorporating the person’s values and experience, the therapist’s clinical skills and experience, and evidence-based research will provide a holistic approach to care for individual’s with ME/CFS.
CONSIDERATION OF PERFORMANCE COMPONENTS UNDER THE CMOP-E
The difference in the level of reported cramping as also statistically significant, p = 0.017.
Lopez et al.,  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 . 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.,  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.
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  which recommends the need for psychological therapy and physical activity .
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” . A rehabilitation management tool that teaches clients to self-monitor and self-regulate their energy expenditures is described by Jason et al., . 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 . 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.,  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 . 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 . 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.
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 . 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 . 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.
CONSIDERATION OF ENVIRONMENTAL FACTORS UNDER THE CMOP-E
Staying within the individuals “energy envelope” is a client-centred approach to managing ME/CFS, which emphasizes that maintaining energy levels may improve clients’ perceived energy and thereby increase their capacity to engage in more activity. Goudsmit et al.,  proposed that pacing could stabilize ME/CFS and help avoid post-exertional malaise. If the person with ME/CFS is performing at their maximal functional level, then pacing can be incorporated into a multi-disciplinary rehabilitation program tailored for the person. This strategy differs from GET, which emphasizes maintaining and increasing activity despite symptoms.
Participants in a study completed by de Carvalho Leite et al.  further emphasized the need for social supports to improve quality of life and alleviate the impact of the illness. They described the need for client-centred care from health and social services. Illness management, social and financial supports were expressed needs. Barriers to these supports stemmed from social, cultural, organizational and professional norms. Since quality of life influences a person’s functional status and their ability to engage in their environment, health and social programs, which support social inclusion such as work roles, leisure participation and performance and self-care are necessary supports for illness management and a person’s overall well-being.
Taylor et al.,  state that ME/CFS symptoms can make it extremely difficult or impossible for the persons with this illness to perform activities of daily living. Therefore, maintaining daily routines and meeting role expectations can be significantly impaired in individuals with ME/CFS. The fluctuation of the symptoms makes it difficult for individuals to predict their abilities and be reliable for others. Significant losses in social life, family, school and work roles may result from impairments. Sustained attention, concentration and physical activity are particularly difficult and can result in increased symptoms, which disrupts individuals’ ability to perform previous roles. Pacing and energy conservation strategies may assist with helping individuals with ME/CFS maximize their role functioning.
Implication for intervention
TREATMENT RECOMMENDATIONS FOR PEOPLE WITH ME/CFS
- Professional and peer-facilitated programs are necessary to improve quality of life by enabling individuals to engage more successfully in occupation. These programs may include professional education, lifestyle management skills, mutual support and health-care client collaboration. For example, the therapist may educate the clients on the nature of the illness and the clients may wish to participate in defining their illness and describing their experience of the illness. Lifestyle management suggestions or recommendations can be made and clients can share their suggestions, encouraging group engagement while simultaneously enabling them to participate in health decision making and emphasizing empowerment. These programs provide social benefits and encourage goal attainment which has been found to be one of the only significant predictors of quality of life improvement .
- Knowledge base in environmental modifications, body awareness and exercise programs are important for empowering individuals with ME/CFS. Facilitation in home adaptations, proper body biomechanics and pacing/energy conservation strategies are essential factors in achieving a positive outcome . Providing education on equipment and teaching lifting, pushing and pulling techniques, proper body biomechanics and alternate methods of completing activities to conserve energy may empower individuals to increase their functional abilities and sustain occupational roles. In addition, graded exercise groups including strengthening and stretching programs can increase a person’s ability to become more functional .
- Using Cognitive Therapy (COG) to enable individuals with ME/CFS to learn to balance between activity, rest and leisure may be useful. This may lead to healthier social relationships, reduce stress and alleviate maladaptive cognitions. For example, the therapist may wish to teach relaxation techniques, self-regulation skills and pacing skills that will ultimately influence nervous system dysregulation and improve the immune system.
- Functional evaluations in the home and work site evaluations for those who continue to be employed is important for identifying occupational barriers such as environmental, personal and task-related barriers. Therapists should assess individuals’ ability in engaging in occupation and evaluate how the person’s surroundings, habits and behaviours and performance skills may contribute or hinder successful engagement. Therapist may also recommend work accommodations by collaborating with the client and employer and providing education, recommending adaptive equipment or modifications in the home or workplace to reduce symptoms of ME/CFS and facilitate successful engagement.
LIMITATIONS TO CURRENT PRACTICE AND RESEARCH
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Citation:Procknow T, Leung AWS (2015) Reviewing the Impact of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome on Daily Functioning Using a Holistic Model: It’s Implication on Intervention. J Altern Complement Integr Med 1: 002.
Copyright: © 2015 Tracy Procknow, et al. This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.