Cognitive Behavioural Therapy for Chronic Fatigue Syndrome

A Guide for Clinicians

Philip Kinsella

• Publisher: Routledge
• Year: 2020
• eBook ISBN: 9781000144383
• Topic: Medicine
• Subtopic: Psychiatry & Mental Health

Chronic fatigue syndrome is a common and disabling condition characterised by fatigue, muscle pain, sleep disturbances and other physical and psychological symptoms that cause a considerable amount of distress and suffering. This book provides a practical guide for clinicians on how to treat chronic fatigue syndrome using cognitive behaviour therapy approaches.

Cognitive Behavioural Therapy for Chronic Fatigue Syndrome attempts to make sense of the illness, and describes how cognitive behavioural therapy can help patients by working with their environment, emotions, and behaviour to improve their physical condition. Topics covered include:

• principles of cognitive behavioural therapy



• assessing patients with chronic fatigue syndrome



• helping patients with emotional issues and other maintenance factors



• using cognitive behavioural therapy alongside other approaches.

Aimed at practitioners, this book will provide essential guidance for cognitive behavioural therapists, physiotherapists, occupational therapists, and other clinicians who work in this rapidly expanding field.

Chapter 1

Understanding chronic fatigue syndrome from a cognitive behavioural perspective

This chapter covers:

• How chronic fatigue syndrome (CFS) presents to the health system and how it is defined

• A description of the cognitive behavioural therapy (CBT) model of CFS

• An explanation of how this model has been developed historically, and of how it is supported by research evidence and clinical experience

• Criticisms of the CBT model

A description of CFS

Chronic fatigue syndrome is a complex and disabling condition characterised by persistent and unexplained physical and mental fatigue, and other symptoms as described below (Jason, Fennell and Taylor 2003). Patients will present themselves, usually to their general practitioner (GP), with symptoms of particularly fatigue, but also pain, poor concentration, poor sleep, and sometimes odd symptoms such as heat and cold intolerance. These symptoms may have been preceded by a physical illness or a period of stress. Little is found on physical examination, symptoms are usually viewed as viral by the GP, but patients get frustrated that their symptoms do not clear up as would be expected. Aside from the great unpleasantness of these symptoms, they can make it difficult for the person to function at their normal level in terms of family life and work. They can be frustrated by this and the fact that there is no obvious medical cure, and the treatments they are given such as pain relieving medication can only address symptoms, and are not curative. After six months, when any specific disease has been investigated and excluded, they are given a diagnosis of chronic fatigue syndrome. (The recent provisional National Institute for Clinical Excellence (NICE 2006) guidelines will suggest that it is diagnosed after four months.)

Definitions of CFS

There are a number of case definitions of CFS, such as that of the US Centre for Disease Control (Holmes, Kaplan, Gantz, Komaroff, Schonberger, Straus et al 1988), and the Oxford Group (Sharpe, Archard, Banatvala, Borysiewicz, Clare, David et al 1991), and the different groups have somewhat different diagnostic criteria. A review by Mulrow, Ramirez, Cornell and Allsup (2001) concluded that evidence to substantiate the existing case definitions was severely limited. There is therefore some uncertainty about the validity of the diagnostic criteria.

According to the Oxford Group’s diagnostic criteria (Sharpe et al 1991), the person must fulfil the following to receive the diagnosis:

• Have a principal symptom of fatigue with definite onset and not lifelong

• The fatigue is severe, disabling and affects physical and mental functioning

• The fatigue has lasted for at least six months, during which it is present at least 50 per cent of the time

• Other symptoms may be included such as myalgia (muscle pain), mood disturbance, sleep irregularity

Suffering from the following conditions excludes a CFS diagnosis: established medical conditions known to produce chronic fatigue, schizophrenia, manic depressive illness, substance abuse, eating disorder, organic brain disease.

Patients can vary in severity from being bed bound, to having a wide range of disabling symptoms, to perhaps just having fatigue symptoms and moderate disability. Patients who are encountered in primary care settings are probably less likely to be severely affected than those who are seen in specialist services or general hospitals, and clinical experience suggests that they will be more easily helped.

The condition is controversial; the initial debates were around whether it was really an illness, or just an extreme version of tiredness. More recently it has been more accepted as an illness (Department of Health 2002). It was also debated whether it is a new condition or has always been around; a review of the historical evidence indicated that there are good records of similar conditions in the past, the most common diagnosis being neurasthenia (Demitrack and Abbey 1996). A more unresolved debate is the extent to which it is a ‘physical’ or ‘psychological’ condition, and there have been a number of CFS advocacy groups who argue for it to be seen as primarily a physical condition, and this has caused some tension with health care providers who may put more emphasis on psychological factors.

Patient example: Paul was a student at a local university. Around the times of exams he started feeling very tired; he had found his whole degree quite demanding. A few weeks into being tired he developed a virus with symptoms of high temperature, muscle aches, and general malaise. He was advised by his GP to rest and told that the symptoms would eventually clear up. After a month he still felt very tired, and he was unable to get rid of muscle aches, and a sense that his temperature was not quite right. After nine months when he was struggling to continue his university work he was fully investigated by a physician and no signs of infection or other physical abnormality were found. He was surprised to be given a diagnosis of CFS and it was suggested he may benefit from CBT.

Cognitive behavioural therapy

Cognitive behavioural therapy, which looks at the interaction between the environment, thoughts, feelings, behaviours and physical states (such as fatigue), and which will be described in more detail in Chapter 2, has a good track record in the understanding and treatment of a variety of disorders. There were early successes with depression, anxiety, phobias, panic, obsessive-compulsive disorder and eating disorders (Blackburn and Twaddle 1996). More recently the range of applications has widened to include emotional disorders in people with cancer (Moorey, Greer, Bliss and Law 1998), people who have chronic pain (Eimer and Freeman 1998), and also those who have somatic complaints unexplained by organic disease (Sharpe, Peveler and Mayou 1992). It was thought, therefore, that CBT could aid the understanding of CFS, and improve the health of sufferers (as it had with chronic pain sufferers), particularly given the lack of alternative approaches to the condition: clinicians and researchers in the late 1980s started to think about what was causing these CFS symptoms, and started to develop CBT treatments for CFS.

A CBT model of CFS

The CBT model of CFS that will be used in this book will be described below and it is based on: historical developments of the model from the 1980s onwards; the evidence base to support the model, which will be reviewed; and finally the clinical experience of the author and his colleagues. The model is based on the idea that the symptoms of CFS are influenced by predisposing, precipitating and maintenance factors, as described in Figure 1.1.

It may well be the case that some maintenance factors are more important in a particular patient, or in the same patient at different times, for example stress may be a big factor but iatrogenic factors are less significant, or vice versa. It is important therefore, at the assessment stage and throughout treatment, to be continually assessing and evaluating the significance of each factor.

Patient example: Jane presented to the joint psychiatry/immunology clinic in the general hospital. She described symptoms of tiredness, aches and pains, dizziness and irritable bowel syndrome. She had a history of postnatal depression eight years previously, and had been on anti-depressants since then. Two years before being seen, she developed a bacterial bowel infection whilst she was on holiday, and struggled to recover. She did not (or was unable to) allow herself time off from work or from looking after her two children and her husband. She had initial symptoms of tiredness and bloating/diarrhoea and these symptoms worsened. Pain and dizziness appeared in time. On assessment, she identified beliefs that she was lazy’ and ‘I should always put myself last’. This led to a pattern of self-neglect and sacrifice that was a significant maintenance factor, alongside poor sleep and further viral infections.

Background to the development of the model

The model used in this book has been developed from previous CBT models of CFS and owes a lot to them. It is supported by the evidence base for the predisposing, precipitating and maintenance factors, and it is partly based on clinical observations. The hitorical development will be described below, and will be of more interest to readers who wish to understand how the current understanding of CFS came about.

Historical development of the model

The models of CFS that clinicians developed differed somewhat between research centres, and there have also been developments over the years. In one of the first papers to describe a CBT approach to CFS (Wessely, David, Butler and Chalder 1989) it was suggested that the patient develops an ‘acute illness probably infectious in origin’. There is then a reduction or avoidance of activity, a subsequent loss of tolerance, or reduction in fitness, so symptoms are developed at lower levels of activity. Patients’ cognitions may include thoughts about making themselves worse if they carry on, and that there is something seriously wrong with them; and ‘this leads to a vicious circle of increased avoidance, inactivity and fatigue’ (Wessely et al 1989). Other points made in the paper are that it is important to acknowledge the person’s distress, that patients should have psychological disorders treated, that therapeutic caution should be exercised if the patient is considering going on long term benefits, and that untested alternative treatments should be viewed cautiously. The main focus of treatment is exercise and activity, correcting cognitive distortions, limiting hospital visits, and the use of a co-therapist (i.e. a relative or friend to help with the programme).

Sharpe and Chalder (1994) built on the above work, and described a model that emphasises:

• Focussing on factors that are perpetuating (or maintaining) the symptoms: they argued that although precipitating factors like physical illness or stress may bring on the original symptoms, perpetuating factors lead to the development of chronicity

• Consideration of multiple perpetuating factors

• Identifying relevant factors by individual assessment

• Considering that factors may interact

This led the authors to emphasise a rehabilitative programme addressing anxiety and depression, physiological effects of inactivity, and cognitive distortions. In terms of managing activity there is emphasis on reducing the observed boom and bust pattern (sometimes called activity cycling), this being when patients do too much, feel very tired and sore, and then do too little. Emphasis is put on practising activities at a level that does not cause ‘severe symptoms’ and it is also important that the patient has ‘planned rest’. It is also suggested that the clinician help with ‘psychosocial problems’, and also with sleep difficulties and hyperventilation.

The CBT approach to CFS was advanced by a group in Oxford, UK. It could be argued that their model of CFS (Surawy, Hackman, Hawton and Sharpe 1995) was more sophisticated, and a step forward from earlier work. There was an increased emphasis on cognitive factors such as:

• Negative thoughts about the effect of activity on performance

• The comparison of current performance with previous high standards, e.g. the patient believes that it is very bad that they are not able to do the things they used to

• Being over-concerned about the opinion of others

They identified typical personal rules (see Chapter 2) such as:

• A need to meet high standards and the unacceptability of failing to do this

• A need to be strong and not admit weakness

This model suggests that these rules/underlying assumptions are a predisposing factor to developing the condition; the authors accept previous ideas about precipitating and maintenance factors, in particular:

• Precipitating factors are a combination of acute illness and psychosocial stress. This may lead the person to press on and try harder to meet targets, until the predisposed person collapses in a state of exhaustion and frustration. The person may resist an explanation that they are failing to cope, and to save face prefer an explanation that they are suffering from a serious physical illn...

Table of contents

• Cover
• Half Title
• Title Page
• Copyright Page
• Dedication
• Table of Contents
• Foreword
• Preface
• Acknowledgements
• 1 Understanding chronic fatigue syndrome from a cognitive behavioural perspective
• 2 Key elements of the cognitive behavioural approach
• 3 Assessing patients with chronic fatigue syndrome
• 4 Beginning therapy
• 5 Helping patients with emotional problems
• 6 Helping patients with other factors that may maintain the symptoms
• 7 Managing pain and other problems arising from chronic fatigue syndrome
• 8 Catherine’s story
• 9 Using cognitive behavioural therapy alongside other approaches to chronic fatigue syndrome
• Appendix 3.1: Assessment sheet
• Appendix 3.2: Balance sheet
• Appendix 3.3: Activity diary
• Appendix 3.4: Sleep diary
• Appendix 3.5: Problem and goal rating sheet
• Appendix 3.6: Behavioural change sheet
• Appendix 5.1: Negative thought diary and patient handout
• Appendix 5.2: Belief and rule workbook
• Glossary of CBT/CFS terminology
• References
• Index