Factsheet on CBT and GET 2004

Cognitive-Behavioural Therapy (CBT) is a form of psychotherapy, which focuses on changing certain thoughts and behaviours. It was initially developed to help patients suffering from depression, but has also proved helpful in managing the emotional distress of people with chronic diseases such as multiple sclerosis, cancer, rheumatoid arthritis and CFS/ME. The problem with CBT is that some have misrepresented it, claiming that it is an effective treatment for the condition as a whole - which goes way beyond the evidence, while others have not been entirely truthful about its aims and the theory, which underlies it. Below is a short guide to the real CBT without the hype.

CBT is focused primarily on changing the way we think in order to reduce the understandable feelings of fear, uncertainty, depression and anxiety associated with illnesses like CFS/ME. In addition, patients are encouraged to examine their activity levels, to ensure that they do as much as they can without triggering an exacerbation of the symptoms. It’s a way of helping the person to make decisions, for instance, about activity levels, and doing what their body is capable of, not avoiding activities because of a fear of a major relapse or inappropriate advice. Not all patients require CBT because many will find the information they require from sources like clinics, self-help organisations, books, or knowledgeable friends. But not everyone can access such sources, and some friends, or books, may not be authoritative. And even patients who have managed their illness successfully for years may have periods when the chronicity, nature or severity of the symptoms leads to depression, which then further increases their fatigue. In such cases, we have to be honest with ourselves and not see a failure to cope as a sign of characterological weakness. CFS/ME can be extremely disabling. It’s not a temporary inconvenience, which everyone should be able to deal with, all of the time. Tea and sympathy is not always enough. If you have a problem, which upsets and depresses you, and you cannot resolve it by yourself, why suffer in silence? If one has a broken leg, one seeks medical help. If one has a complicated, chronic illness and the distress gets too much, one should not hesitate to ask for, and accept the help from a knowledgeable therapist.

If CBT is offered, this is what you can expect:

CBT may be combined with graded exercise therapy (GET), where therapists encourage a gradual increase in activity according to a predetermined plan, or pacing, where the amount of activity is primarily determined by symptoms at the time.

CBT is highly structured and therapists follow set guidelines. You will almost certainly be asked to keep a diary and to list distressing thoughts and feelings for discussion in the next therapy session. Alternative ways of handling difficulties will be examined and you may be taught new techniques to deal with certain situations or symptoms.

CBT is relatively brief and time-limited. The average number of sessions clients receive is only 16. Other forms of therapy, like psychoanalysis, take much longer.

CBT is not counselling, though the therapist may offer some counselling when he/she feels it is appropriate. Likewise, CBT is not a first line educational tool to show patients how to manage their illness. It’s not the same as coping skills training or an illness management programme, which is based on a different theory and is primarily aimed at helping the newly diagnosed.

The ideas underlying CBT

There are two hypotheses on which CBT is based. The first assumes that the causes of CFS are unknown and that a greater understanding of the symptoms and coping options may achieve some improvement in terms of quality of life. The second hypothesis is based on the assumption that most of the symptoms in the chronic phase are primarily the result of unhelpful thoughts and behaviours. According to the CBT model of CFS, these maintain and exacerbate the illness, for instance, by increasing stress. (The secretion of stress hormones undermines the immune system and there is also a more direct effect of stress on sleep, digestion and other functions). The main unhelpful behaviour is considered to be the avoidance of activity, which leads people to become unfit (deconditioned) and thus to feel tired at increasingly lower levels of exertion. The model predicts that patients interpret the symptoms as signs of ongoing disease and therefore become even less active. This leads to depression, which in turn increases the fatigue, and sets up a vicious circle. Part of the treatment is to persuade patients that any fatigue is not the result of a virus or neurological disease, and that they can be more active, even if fatigued.

The first hypothesis seems reasonable, given our limited knowledge of CFS/ME. But as experts advising Canadian doctors have observed, the second hypothesis is much more value-laden and its assumptions are at odds with some of the evidence now available. Indeed, they have noted that ignoring the demonstrated biological pathology of this illness has often led to blaming patients for their illness and withholding medical support and treatment. It has also been pointed out that the theory relies too much on assumptions, e.g. the as yet unproven link between lack of fitness and fatigue, as well as the notion of the universal response, i.e. that everyone with CFS/ME responds in exactly the same, unhelpful way. In a nutshell, this hypothesis is highly simplistic, reducing CFS/ME to little more than fatigue and symptoms due to stress and lack of physical fitness. It cannot explain somatic (physical) symptoms such as intolerance to alcohol, vertigo or seizure-like experiences. And it overlooks the fact that different people respond to symptoms in different ways.

In terms of scientific evidence, the trials of CBT have generally not included measures of symptoms other than fatigue and emotional distress. It is therefore totally unclear how effective CBT is for patients with immunological and neurological problems. Another interesting finding is that although most therapists have combined CBT with GET, objective measures have failed to show that on average, there is a meaningful increase in activity levels. Thus while between 50-70% of patients with broadly defined CFS tend to feel better after treatment, there is no reason to believe that this is related to any increase in activity or fitness. According to Professor Friedberg, patients may have actually learned to pace themselves better.

Research has also shown that CBT is no better than counselling. In other words, CBT seems to benefit many patients with ongoing fatigue, but even for them it is rarely a cure, and possibly may not be the most effective way of helping patients deal with the emotional aspects of their illness.

Graded exercise therapy (GET)

Graded exercise therapy, sometimes referred to as graded activity, describes the approach to energy management where patients are encouraged to gradually increase the amount they do, irrespective of how they feel. It is the main alternative to pacing.

GET can be advocated on its own or with CBT or counselling. The concept behind GET is the CBT model, where symptoms such as fatigue, dizziness and pain are seen as the result of a lack of activity and to a lesser extent, the physical effects of stress. The lack of activity makes people unfit and it is this which is considered to be the primary cause of the perpetuation of the illness. GET is therefore focused on building up the patients’ fitness by increasing their activity levels in a step-by-step or ‘graded’ manner. The therapist and patient work together to set achievable goals and devise plans, which include rest periods at specific times. In the past, patients were encouraged to keep strictly to their predetermined regimes, and not to stop unless extremely unwell. However, many of the more experienced therapists now accept that the principle of ‘no pain, no gain’ is not appropriate in CFS and therefore allow their patients to rest when they feel the need. Thus in practice, the traditional version of GET is increasingly being replaced by a combination of graded activity and pacing, where patients use plans and try to achieve goals, but where both can be readily adjusted to avoid overexertion.

Virtually all the research to date has assessed the traditional version of GET. This was found to be helpful in reducing feelings of tiredness in a sizeable proportion of those with broadly defined CFS, but as with CBT, there are no data for people with somatic symptoms or immunological dysfunction. In addition, several surveys have echoed the reports from therapists that many patients with CFS/ME find the traditional version difficult to adhere to and half stated that it made them worse. (ME patients often find that there is a limit above which they cannot go. This is referred to as the ‘plateau’ or ‘glass ceiling’. Consequently, some doctors believe that if patients can gradually increase their activity levels without reaching this maximum, the diagnosis must be re-examined).

The only study, which has tested GET, combined with a version of pacing (if symptoms became worse, patients could cancel the next exercise session, or it was shortened), found that 91% of the participants rated themselves as ‘better’. The patients had broadly-defined CFS, the average fatigue score was modest, there are no data on neurological and immunological symptoms, the greatest reductions were for mental fatigue and depression and 76% of the controls also rated themselves as better. However, no one who completed the exercise programme felt worse.

The idea of increasing activity levels when doing so tends to worsen the symptoms may seem, to some, like advising a smoker with lung cancer to gradually increase the amount they smoke. It may be appropriate for those whose fatigue is primarily a result of deconditioning, perhaps due to misinformation about the benefits of rest, but most cases of CFS are more complicated. Nevertheless, it is important to avoid deconditioning, hence my advice to remain as active as possible.

The most severely affected should be guided by a doctor or therapist who is experienced in dealing with this particular group of patients. Programmes must be adapted to fit the individual’s capabilities and close monitoring is essential.

Further research is needed to determine which type of patient benefits from GET and which do better using pacing or a combination of both.

Factsheet on CBT and GET 2004

If CBT is offered, this is what you can expect:

The ideas underlying CBT

Further reading:

Graded exercise therapy (GET)

Further reading: