ME/CFS Primer/Education ME/CFS Management Cognitive-Behavioural Therapy

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.

Ellen Goudsmit, Ph.D.

For further reading, contact:

Mind Publications
15-19 Broadway
London E15 4BQ
tel. 0844 448 4448
fax: 020 8534 6399

Carruthers, BM., Jain, AK., De Meirleir, KL., Peterson, DL., Klimas, NG., Lerner, AM., Bested, AC., Flor-Henry, P., Joshi, P., Powles, ACP., Sherkey, JA and van de Sande, MI. Myalgic encephalomyelitis/chronic fatigue syndrome: clinical working case definition, diagnostic and treatment protocols. Journal of Chronic Fatigue Syndrome, 2003, 11, 1, 7-126.