Chronisch Vermoeidheidssyndroom: diagnose, behandeling en ...

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52 Chronic Fatigue Syndrome KCE reports 88 Cognitive behaviour therapy should follow the usual principles and include asking the patient to self monitor activity, rest, thoughts, feelings, and behaviours; discussing with the patient his or her adjustment to the diagnosis; and encouraging acceptance of current functional limitations. A course of CBT should be delivered: • by a healthcare professional with appropriate training in CBT and experience in CFS, under clinical supervision, and with close adherence to protocols; • one-to-one if possible. Plan CBT for a person with CFS according to the usual principles of CBT, and include: • Acknowledging and validating the person’s symptoms and condition. • Explaining the CBT approach in CFS, such as the relationship between thoughts, feelings, behaviours and symptoms, and the distinction between causal and perpetuating factors. • Discussing the person’s attitudes and expectations. • Developing a supportive and collaborative therapeutic relationship. • Developing a shared formulation and understanding of factors that affect CFS symptoms. • Agreeing therapeutic goals. • Tailoring treatment to the person’s needs and level of functioning. • Recording and analysing patterns of activity and rest, and thoughts, feelings and behaviours (self-monitoring). • Establishing a stable and maintainable activity level (baseline) followed by a gradual and mutually agreed increase in activity. • Challenging thoughts and expectations that may affect symptom improvement and outcomes. • Addressing complex adjustment to diagnosis and acceptance of current functional limitations. • Developing awareness of thoughts, expectations or beliefs and defining fatigue-related cognitions and behaviour. • Identifying perpetuating factors that may maintain or exacerbate CFS symptoms to increase the person’s self-efficacy (sense of control over symptoms). • Addressing any over-vigilance to symptoms and related checking or reassurance-seeking behaviours by providing physiological explanations of symptoms and using refocusing/distraction techniques. • Problem solving using activity management and homework tasks to test out alternative thoughts or beliefs, such as undertaking pleasure and mastery tasks (tasks that are enjoyable and give a sense of accomplishment). • Building on existing assertion and communication skills to set appropriate limits on activity. • Managing sleep problems, for example by addressing any unhelpful beliefs about sleep, behavioural approaches to sleep disturbance, stress management, and/or relaxation training. However, some patients with CFS are reluctant to undertake psychological treatments, such as cognitive behavioural therapy, for what they believe to be a physical condition. In this case, specialists will preferably propose pacing self-management techniques that encourage a behavioural change and at the same time acknowledge the physical aspects of the illness. 137
KCE Reports 88 Chronic Fatigue Syndrome 53 GRADED EXERCISE THERAPY (GET) Graded exercise therapy should be delivered by a suitably trained GET therapist with experience in CFS, under appropriate clinical supervision and preferably one-to-one. GET should include the establishment of a baseline followed by planned increases in duration of low intensity physical activity, followed by gradual increases in intensity leading to aerobic exercise (which increases the pulse rate). It should be based on current level of activities and daily routines and on the patient’s own goals. Both patient and healthcare professional should recognise that it may take weeks to years to achieve these goals. Although graded exercise therapy is recommended for CFS patients, exercise can exacerbate symptoms in chronic fatigue syndrome and provoke post-exertional malaise if too-vigorous exercise/activity is prescribed. Designing and implementing an exercise programme for chronic fatigue syndrome have to take into account this adverse effect in order to deliver a programme with no detrimental effects on the pathophysiology of the condition, in particular to guarantee treatment compliance. 137 Guidelines to implement such a graded exercise therapy programme are proposed both by Wallman et al (2005) 138 and by Nijs et al. (2008). 137 EXAMPLE OF STRUCTURED PROTOCOL FOR EXERCISE SESSIONS Wallman et al. (2005) 138 have described the graded exercise program used in their randomised controlled trial. 82 According to the authors, this program has been successfully implemented in a clinical practice. It includes the concept of pacing and is aimed at non-bed-bound, sedentary patients with CFS, as well as those already undertaking minimal aerobic exercise (i.e., no more than three sessions per week of 20 minutes’ duration). The protocol described here was never associated with any major relapse, helped to prevent CFS patients overdoing physical activity and can halt further deconditioning. The exercise sessions are in addition to normal activities, and some initial aches and pains are usual when beginning exercise for the first time. Patients have: • to follow their heart rate during exercise sessions (checked with a heart rate monitor or by assessing pulse rate) • to rate their perceived exertion (RPE - Borg scale in Table 4) on completion of each exercise session in order to average values each fortnight. The averaged RPE value forms the basis for determining the duration of future exercise sessions • to monitor progress over time and link poor performance with a possible emotional or physiological event (exercise diary). Table 4. Borg’s rating of Perceived Exertion Scale Perceived exertion Rating 6 Very, very light 7 8 Very light 9 10 Fairly light 11 12 Somewhat hard 13 14 Hard 15 16 Very hard 17 18 Very, very hard 19 20 Source. Borg (1982) 139
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