Severe Chronic Fatigue Syndrome (CFS/ME): Recovery is Possible

Transcription

1 Practice Evaluation The recovery of individuals with very severe chronic fatigue syndrome/ myalgic encephalomyelitis (CFS/ME) is possible with successful multidisciplinary management. This case vignette aims to highlight the beneficial outcome of using occupational therapy lifestyle management and the Canadian Occupational Performance Measure to identify perceived problems in occupational performance and indicate change. The current management strategies in CFS/ME are discussed briefly and the challenges of the management of severe CFS/ME are described, indicating a need for a supportive team and specialist inpatient services. In 2003, the Department of Health released funds in England to develop more widely accessible CFS/ME services. This case study illustrates a positive outcome for one individual with severe CFS/ME, following admission to a specialist inpatient facility. It is hoped that it may aid other therapists working with and developing services for people with severe presentations of CFS/ME. Severe Chronic Fatigue Syndrome (CFS/ME): Recovery is Possible Lucy Burley, 1 Diane L Cox 2 and Leslie J Findley 3 Introduction Chronic fatigue syndrome (CFS) has been described as a complex illness defined by unexplained disabling fatigue and a combination of non-specific accompanying symptoms (Reeves et al 2003, p26). The term myalgic encephalomyelitis (ME) is often used by patients and patient organisations, particularly in the United Kingdom. Therefore, in line with the recommendations of the CFS/ME Working Group (2002), the abbreviation CFS/ME is used here. Most of the literature, current research (Medical Research Council 2004) and national initiatives (Department of Health 2003) on the services for and the management of CFS/ME do not consider the more severe expressions of 1 Formerly at CFS Diagnostic and Management Service, Essex Centre for Neurological Sciences, Oldchurch Hospital, Romford, Essex. 2 University of Cumbria (St Martin s College), Lancaster. 3 CFS Diagnostic and Management Service, Essex Centre for Neurological Sciences, Oldchurch Hospital, Romford, Essex. Corresponding author: Lucy Burley (née Moore), Senior Occupational Therapist, Community Rehabilitation Service, Stratton Road, Swindon, Wiltshire SN1 2PN. lucyburley@yahoo.co.uk Submitted: 9 November Accepted: 19 May Key words: Chronic fatigue syndrome, case report, rehabilitation programme, fatigue intervention. Reference: Burley L, Cox DL, Findley LJ (2007) Severe chronic fatigue syndrome (CFS/ME): recovery is possible. British Journal of Occupational Therapy, 70(8), the condition. Cox (2000) and Cox and Findley (2000) have indicated that people with severely impaired levels of function may need inpatient management. This paper, therefore, aims to draw attention to the complexities of inpatient management of very severe CFS/ME by describing a typical case seen at a specialist centre. The case also illustrates two apparent contradictions: the need to be directive with patients whilst espousing a client-centred approach, and the use of a combination of physical and psychological therapies with patients who may believe that their illness is solely physical. CFS/ME What is CFS/ME? The most widely accepted international case definition requires a substantial reduction in previous levels of occupational, educational, social and personal activities from new fatigue in excess of 6 months, with all other recognised causes of fatigue, including pre-existing psychiatric diseases, excluded by thorough evaluation (Fukuda et al 1994). To fulfil the definition of CFS, the person must have persistent or relapsing debilitating fatigue, with no previous history of similar symptoms that are disabling and affect physical and mental functioning. The categories of mild, moderate, severe and very severe have been previously proposed to indicate the spectrum of severity and functional impact of CFS/ME on daily life (Cox 1998, CFS/ME Working Group 2002). British Journal of Occupational Therapy August (8) 339

2 Management of CFS/ME The current evidence in the management of CFS/ME is based primarily on outpatient cognitive behaviour therapy and graded exercise therapy for people with a mild to moderate presentation (Chambers et al 2006). Cognitive behaviour therapy uses a combination of a rehabilitative approach of a graded increase in activity with a psychological approach which addresses thoughts and beliefs about CFS which may impair recovery (Price and Couper 1998, p1). Within the case presented, the occupational therapists use the principles of cognitive behaviour therapy to assess illness beliefs and coping strategies. Occupational therapists have an in-depth understanding of occupational performance disruption, adaptation and participation; activity analysis; and the use of a client-centred approach in the management of CFS/ME (Moore 2000, Cox 2002, Hughes 2002, Gray and Fossey 2003, Taylor et al 2003, Roche and Taylor 2005). Occupational therapy lifestyle management (see Appendix 1, Cox 2000, 2002) incorporates all the above elements in order to assist a person to reformulate lifestyle behavioural patterns that may have developed due to long-term symptoms and disability. Client-centred occupational therapy has been described as a partnership between the client and the therapist that empowers the client to engage in functional performance and fulfil his or her occupational roles in a variety of settings (Sumsion 2000, p308). In practice, although occupational therapists endeavour to seek a client-led therapy approach, in the initial stages of working with someone who has a long-term condition it is often the therapist who leads, with the client taking control of the therapy as techniques are learnt and understood. Collaboration in this process is fundamental. The Canadian Occupational Performance Measure (COPM) has been shown to be a reliable, valid, clinically useful and responsive outcome measure, with a wide variety of clients to engage in client-centred therapy (Carswell et al 2004). The COPM captures this perspective by helping clients to identify problems, establish priorities and set goals (McColl and Pollock 2001) and it was therefore used with this client. The CFS service The service for the case described has been a dedicated CFS/ME national service since It is now regarded as one of the established centres for the diagnosis and management of CFS/ME in the United Kingdom. The roles of the other team members have been described elsewhere (Cox 2000, Cox and Findley 2000). Case vignette Alice (a pseudonym) has given full consent for her information and photographs to be used for this case illustration. Brief history of illness During postgraduate studies, Alice s CFS/ME commenced after a glandular fever type illness. By the time of her admission to the unit, Alice had been ill for 8 years and completely bed-bound for 3 years. Table 1 and Fig. 1 illustrate her occupational performance level on admission to the unit. Management approach and rationale Although the focus of this case report is detailing the role of the occupational therapist, it is important to emphasise Table 1. Occupational performance level on admission Occupational performance component Alice was intolerant to light She was intolerant to noise She was touch sensitive She was completely dependent in all levels of self-care Occupational performance consequence Alice had her blinds and curtains drawn 24 hours a day She wore earplugs on a constant basis and was only able to manage a conversation of approximately 3 minutes at any one time throughout her day She was unable to tolerate heavy bedclothes or daily washing and dressing Washing: District nurses came into her home three times a week to wash parts of Alice s body because she was unable to tolerate a full body wash Toileting: Alice used a bedpan for toileting Brushing her teeth: She was dependent on her father for this activity Hairwashing: Because of the amount of time this activity required and her touch sensitivity, Alice had had her hair washed only three times in the previous 3 years She was unable to tolerate visitors She was unable to sit up while eating and it was difficult for her to chew solid foods She had an abnormal sleep pattern Even though her friends were still writing, Alice was unable even to hear about this correspondence Alice s father used to mash her food; she used to eat while lying on her side, using plastic cutlery to decrease noise and the weight of utensils She used to sleep a maximum of 3 hours a night 340 British Journal of Occupational Therapy August (8)

3 Fig. 1. Alice on admission. that the successful management of people with severe CFS/ME is undertaken with the involvement of an entire multidisciplinary team. The bio-psycho-social model underpins the philosophy of the present team (Engel 1980). Assessment The team case coordinator (predominantly the occupational therapist) initially identified Alice s essential care needs. This enabled Alice to regain some control over her environment by working on a care plan with the dedicated nursing staff. The level of care needed also provided an indication of Alice s functional baseline. Assessment interview The process of the narrative assessment interview (Hughes 2002) was staggered in short periods of time over the first few days, owing to the severity of Alice s condition. Giving Alice a chance to share her experience enabled the occupational therapist to elicit her interest in and cooperation with the programme (Hughes 2002, Gray and Fossey 2003) and started to give a picture of her overall occupational performance (Hammell 2004). The interview process also provided the team with information on psychological and social factors that may have complicated intervention. At this stage, Alice had high levels of anxiety, fixed beliefs regarding her illness and extremely complicated family dynamics. Assessment from this point became an ongoing process parallel with treatment. Intervention: education The lifestyle management programme initially focuses on breaking the peaking and troughing activity cycle seen in CFS/ME in response to fluctuating symptoms (Cox 2000, 2002). Daily diaries were used for Alice to see when symptoms were lower; she often increased her activity level too much and therefore caused a cycle of further symptoms and a boom and bust pattern. This pattern of illness can often perpetuate CFS/ME and can limit engagement in therapy through fear of further relapse. It was explained that by balancing activity and rest throughout the day, Alice s functional levels could subsequently improve. In the initial phases of her illness she reported that she used to push on regardless but, as she deteriorated in response to this, she would avoid activity. A very basic programme was established, incorporating one-hour activity periods alternated with half-an-hour of relaxation (Cox 1999). Through task analysis, essential care needs were first completed on a daily basis. Later, other activities were incorporated into this programme to establish a routine and to help Alice to pace her energy throughout her day. Specific times were allocated for physiotherapy, occupational therapy and counselling within her daily programme. Further education was given on relaxation techniques, resting positions and the need for a consistent daily routine (Cox 2000). Goal setting Goal setting played a major role and was a consistent part of Alice s rehabilitation. Collaborative goal-setting sessions were held weekly with Alice, the occupational therapist and the physiotherapist. The COPM (Law 1998) was used to encourage Alice to decide on the difficulties in and priority areas for intervention. Long-term goals were subsequently identified and, by breaking down these goals through activity analysis, short-term goals were established, so that activity could be increased without exacerbating symptoms (Cox 1999). Although the team strongly believed in a client-centred approach (Law 1998, Sumsion 2000), initially goal setting was therapist led because Alice had very high levels of anxiety and was unsure of her ability to recover. With Alice s cooperation and collaboration, the therapists agreed certain guidelines. For example, her curtains would be opened for all activity periods, and she would work on at least one or two self-care goals together with a choice of two activities from the identified priority areas. This process was evaluated on a weekly basis. At this time, it was necessary to be in constant communication with the team counsellor, because Alice s emotional state was an indicator of whether to consolidate or increase goals. By the end of her admission, the goal planning was led entirely by Alice and needed very little input by therapists. Alice had started to function independently from the team. Discharge planning The team commenced planning discharge from the day of Alice s admission. In its experience, an early referral to community services or an appropriate rehabilitation placement is often essential for someone with this severity of illness. Due to parental ill health, Alice was unable to return home. The identification of a further community rehabilitation service was required, supported British Journal of Occupational Therapy August (8) 341

4 by funding from her local National Health Service trust. Liaison and training between the team and the staff of the rehabilitation service were undertaken to achieve continuity of care. Alice was an inpatient for 8 months. Her occupational performance level on discharge is illustrated in Table 2 and Fig. 2. Table 2. Occupational performance level on discharge from inpatient unit Occupational performance Occupational performance component consequence Self-care Independently bathing, dressing and grooming Mobility Cognitive function Social activity Leisure and productivity Finance Fig. 2. Alice on discharge. Walking independently to toilet, sitting out for all activity sessions and mealtimes, going outside in a wheelchair four times a week and going shopping once a week Reading a book every 2 weeks Having visitors regularly, using the telephone once a week, and corresponding using mail and text Making her own cards and photo frames, beading bracelets, and carrying out horticultural activities Beginning to take control of own finances Progress Alice has continued to maintain her recovery and has relocated to her own flat, where she is living independently. She remains independent in all activities of daily living, leads an active social life and is considering the options of returning to work or study and driving in the near future. Alice has progressed from a very severe to a mild functional presentation and she anticipates continuing to make progress towards a complete recovery. On discharge, Alice evaluated her time within rehabilitation and suggested to occupational therapists working with people with CFS/ME that they: need to have a lot of patience If the OT is five minutes late, it can throw your entire day, you can be completely hysterical but what s important is that the OT does not play into the patient s hands but being compassionate to know that small things have a big effect. Discussion The management of severe CFS/ME is a challenge for both therapist and client but, as illustrated, recovery is possible. Although this case outlines an occupational therapy perspective, teamwork is essential because the condition is multifactorial and complex in nature (Cox and Findley 1998, 2000). Teamwork is also vitally important in providing support and effective debriefing to staff when interacting with the complexities of CFS/ME. Occupational therapists are well placed with undergraduate education and training in both physical and mental health skills to enable the successful management of patients with severe CFS/ME. This case aimed to illustrate that recovery can be achieved. Alice appeared to benefit from a combination of physical and psychological approaches within a wider team framework of occupational therapy, physiotherapy and counselling, and an initial therapy-directed and then client-led approach. It is important for individuals to become aware of personal barriers to recovery and the perpetuating factors, such as activity patterns (boom and bust), that develop in response to the symptoms experienced (Cox 2000). Equally, a fear of progress is real for some patients because, following a lengthy illness, their habits, life roles and relationships may have diminished or ceased. As life experiences cease at the onset of severe CFS/ME, young people especially may lack social development opportunities and find the future recovery plans daunting. Throughout Alice s admission, it was important to utilise a cognitive behavioural approach and not to underestimate the effective use of the therapeutic self to overrule the negative illness patterns that had developed (Cox 2000, Moore 2000). The COPM was an effective tool to facilitate goal setting and enable Alice to progress in all spheres of life. New CFS/ME services are developing in England (Department of Health 2003). It is vital that these services ensure that individuals with severe CFS/ME are able to engage and receive the services that they need. Inpatient units may need to be supported in the future to ensure the successful treatment of severe CFS/ME. The development of clinical care pathways for all levels of CFS/ME is required to enhance guidelines and ensure effective management nationally (CFS/ME Working Group 2002, Department of Health 2005, National Institute for Health and Clinical Excellence 2007). Limitations It is acknowledged that this is only one case and that further research is required to investigate if a combined approach, 342 British Journal of Occupational Therapy August (8)

5 using pacing, grading activity and cognitive behaviour therapy, is an appropriate management strategy for severe CFS/ME. Currently, little information is documented on the barriers to recovery in, and the lifestyle factors for, the more severe presentations. Further case report analysis could provide advanced knowledge to therapists to assist in identifying and treating the negative coping mechanisms and perpetuating themes existing within this complex condition. Conclusion Recovery for people with severe and very severe CFS/ME is possible. Occupational therapists have the skills and training to have a beneficial influence on occupational performance and quality of life in the management of CFS/ME (Cox 2000, Moore 2000, Hughes 2002, Gray and Fossey 2003, Taylor 2004). Acknowledgements We would like to thank Jill Slorance, Clinical Lead Occupational Therapist, and Amelia Goldsmith Lister, Senior Occupational Therapist, of the CFS Diagnostic and Management Service, Oldchurch Hospital, Romford, for their support. References Carswell A, McColl MA, Baptiste S, Law M, Polatajko H, Pollock N (2004) The Canadian Occupational Performance Measure: a research and clinical literature review. Canadian Journal of Occupational Therapy, 71(4), CFS/ME Working Group (2002) A report of the CFS/ME Working Group to the Chief Medical Officer. London: Department of Health. Chambers D, Bagnell AM, Hempel S, Forbes C (2006) Interventions for the treatment, management and rehabilitation of patients with chronic fatigue syndrome/myalgic encephalomyelitis: an updated systematic review. Journal of the Royal Society of Medicine, 99, Cox DL (1998) Management of CFS: development and evaluation of a service. 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London: DH. Engel GL (1980) The clinical application of the bio-psycho-social model. American Journal of Psychiatry, 137(5), Fukuda K, Straus SE, Hickie I, Sharpe M, Dobbins JG, Komaroff A, and the International Chronic Fatigue Syndrome Study Group (1994) The chronic fatigue syndrome: a comprehensive approach to its definition and study. Annals of Internal Medicine, 121, Gray ML, Fossey EM (2003) Illness experience and occupations of people with chronic fatigue syndrome. Australian Occupational Therapy Journal, 50, Hammell KW (2004) Dimensions of meaning in the occupations of daily life. Canadian Journal of Occupational Therapy, 71(5), Hughes JL (2002) Illness narrative and chronic fatigue syndrome/myalgic encephalomyelitis: a review. British Journal of Occupational Therapy, 65(1), Law M (1998) Client-centred occupational therapy. Thorofare, NJ: Slack. McColl MA, Pollock N (2001) Measuring occupational performance using a client-centred perspective. In: M Law, C Baum, W Dunn. 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6 Appendix 1. Elements of the occupational therapy lifestyle management programme (Cox 2000, 2002) History taking, allowing the person with CFS/ME to tell his or her story (Hughes 2002, Gray and Fossey 2003) The exploration of daily activity levels, considering the impact on daily life and on occupational performance, disruption and adaptation Providing an understanding of rest and relaxation, what it is and what it isn t Developing knowledge and understanding of graded activity and exercise, in particular activity analysis and modification Energy conservation strategies, such as task analysis and energy expenditure, and examining diurnal patterns (Taylor and Kielhofner 2003) The reintroduction of activity over time, including prioritising and appropriate goal setting Establishing a daily balance and structure between, for example, rest and activity, wants and needs, mental and physical tasks, and work and leisure The impact and readjustment of sleep patterns The impact of feelings and thoughts on occupational performance and balance Strategies for coping with others and change Planning ahead and ending active treatment The involvement of family and friends 344 British Journal of Occupational Therapy August (8)