Chronisch Vermoeidheidssyndroom: diagnose, behandeling en ...

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50 Chronic Fatigue Syndrome KCE reports 88 More generally, • Guidelines emphasise the need to negotiate management programmes with the patient and not to coerce them into specific treatments. • Pacing is the least complicated strategy available to patients who wish to manage their energy levels. • Patients who are reluctant to CBT (psychological treatment) to treat a ‘physical condition’ will prefer self-management techniques and GET that encourage a behavioural while acknowledging the physical aspects of the illness. • GET is not appropriate for patients with brain abnormalities or evidence of immune activation; this treatment is more beneficial for people who are avoiding activity due to fear or misinformation, if their symptoms are not closely linked to exertion, or if they are well on the way to recovery. • The exercise program should be tailored to each CFS patient. For deconditioned CFS patients, low level strengthening exercises prior to initiating an aerobic program is recommended. • CBT and GET require trained specialists having an experience with CFS; pacing does not require a specialist, but can be adequately explained by a GP or a practice nurse. 2.5.5 Pacing, cognitive behavioural therapy or graded exercise therapy: current research and therapy manuals developed by experts Cognitive behaviour therapy (CBT) and GET were found in all systematic reviews as the most promising treatments for CFS. No other treatments for CFS have so far been shown to be helpful in more than one RCT. Both these approaches encourage gradual increases in activity according to a pre-determined plan, to reduce the physiological effects of deconditioning which are considered by some to play a major role in the perpetuation and exacerbation of fatigue. 79 However, the goals, modalities and indications of these treatment strategies as well as their implementation in routine clinical practice remain a matter of controversy. 132 While some authors have put forward that cognitive behavioural therapy in CFS should aim at complete recovery 133 , others have taken the view that searching for ‘a new equilibrium’ in life – often at a lower level of functioning – may optimize patients’ chances of restoring effort tolerance. Moreover, surveys conducted by patients groups, as well as studies assessing the effect of graded exercise, have indicated that many patients cannot increase activity levels beyond a certain point, that the outcomes tend to be modest, drop-out rates were fairly high, and post-trial effects were not reflected in an objective increase of daily activity levels. 134,80 Pacing can be considered as an additional therapeutic option available to health professionals, and that for optimal results, it should be offered as part of a multidisciplinary, multi-dimensional programme where interventions can be combined to meet individual needs and changing circumstances. 135,136 GET assumes that there is no underlying disease process causing the fatigue; consequently, this treatment strategy is not an appropriate first line treatment for patients with brain abnormalities or evidence of immune activation. 132 However, if people are avoiding activity due to fear or misinformation, if their symptoms are not closely linked to exertion, or if they are well on the way to recovery, then a rehabilitation programme which includes GET is likely to be more beneficial than pacing and similar strategies. 132 While evidence exists in favour of CBT and GET, there is still insufficient evidence to recommend adaptative pacing therapy (APT). In a similar way there is little RCT evidence of the efficacy of specialist medical care. There is therefore an urgent need to: (a) compare the supplementary therapies of both CBT and GET with both APT and standardised specialist medical care (SSMC) alone, seeking evidence of both benefit and harm (b) compare supplementary APT against SSMC alone and (c) compare the
KCE Reports 88 Chronic Fatigue Syndrome 51 supplementary therapies of APT, CBT and GET in order to clarify differential predictors and mechanisms of change. These objectives are currently pursued by the PACE trial (see http://www.pacetrial.org/ accessed on May, 20 th 2008). This large-scale trial is the first in the world to test and compare the effectiveness of four of the main treatments currently available for people suffering from chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME). These are adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and standardised specialist medical care. All of the treatments offer ways for patients to deal with and improve the symptoms of CFS and its effects on disability. The participants in the trial are randomly allocated to one of the treatments and then given a 12-month programme involving appointments with specialised doctors and, for three of the four treatment groups, therapists. Participants' progress is closely monitored by specially-trained research nurses or assistants. The five-year trial will involve 600 participants, aged 18 and over, in Scotland and England. All have to be referred from the specialist hospital CFS clinics involved in the trial and these are based in Edinburgh, Oxford and three London hospitals. The whole protocol can be found at: http://www.biomedcentral.com/1471-2377/7/6. The PACE trial opened to recruitment in March 2005. PACING 136 Pacing makes no assumptions about aetiology but adopts a precautionary principle, i.e. pacing helps patients to remain as active as possible while avoiding over-exertion. This strategy is applied to daily activities. An important difference with GET (or CBT) is that in pacing it is the patient who decides whether or not to continue an activity. Although a gradual increase in activity levels is permitted, the rule is that they should stop when the initial mild fatigue turns into a more unpleasant sensation, or where arms or legs begin to feel weak. The patient may choose to respond either by resting, or if the fatigue is localised, by switching to an activity which uses a different muscle group. The same rule is adopted for mental activities such as reading, speaking on the telephone and using the computer. In practice, pacing means that patients should plan their day to include plenty of time for rest and relaxation. There is no need to divide up minor tasks, but it is often helpful to restrict the number of demanding or stressful activities to one a day. The remainder of that day can then be spent doing less exhausting tasks, or resting, depending on how the patient feels. After a few weeks, most individuals will know from experience how they tend to respond to various activities and what they can manage per day without exacerbating their condition. Once patients are able to evaluate what they can tolerate, they can make provisional plans for the days or weeks ahead, as long as they respond to any symptoms as they occur. This version of pacing is the least complicated strategy available to patients who wish to manage their energy levels. However, some patients have difficulties with the self-discipline required, and simply prefer a more structured programme, such as CBT and GET. Combining pacing and switching, i.e. changing activities to avoid tiring specific muscle groups, is recommended. For instance, if a person has been walking, the advice is to stop before, or at the first signs of fatigue and to switch to something involving different muscles, e.g. reading, watching TV, washing or ironing. Using this approach, it may be possible to further reduce the duration and severity of post-exertional fatigue and hence extend the energy available for everyday tasks. Pacing requires no specialist training. A GP or practice nurse can explain the basic rules, and if required, assist patients who have problems in identifying their baseline. For the more severely affected, pacing can be included in a multi-dimensional programme or other intervention which also provides medical care, emotional support, counselling, and dietary advice. 97,135 COGNITIVE BEHAVIOURAL THERAPY (CBT) Cognitive behavioural therapy is a more complex therapy than GET, requiring highly trained therapists, and is therefore less readily available.
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