CBT for chronic fatigue syndrome
Our researchers were among the architects of a bespoke talking therapy for chronic fatigue syndrome, which is now one of two treatments recommended in the UK.
People who have chronic fatigue syndrome (CFS) are often unwell for considerable periods of time and the symptoms can have an enormously detrimental effect on their everyday lives: in some cases, people can become housebound or even confined to bed. In addition to the profound and disabling exhaustion – which isn’t alleviated by rest – other symptoms can include joint and muscle pain, headaches, disturbed sleep, short-term memory problems and difficulty concentrating. Approximately 250,000 people in the UK have CFS.
Professor Trudie Chalder is Director of our Chronic Fatigue Research and Treatment Unit, jointly run with the South London and Maudsley NHS Foundation Trust. The Unit offers treatment to people referred from all over the country.
When Professor Chalder and her team first piloted Cognitive Behaviour Therapy (CBT) for CFS in 1991, there were no established treatments for people who had been given the diagnosis.
CBT for CFS is based on the premise that the way people cope with the symptoms may contribute to their illness. ‘People often believe that if they don’t rest, their symptoms will get worse’, says Professor Chalder, ‘yet extended periods of rest can make people feel more tired and unwell by weakening muscles and disturbing the body clock.’
‘We think that what starts the fatigue is not the same thing that perpetuates the symptoms,’ she says. ‘People might initially develop the fatigue as the result of an illness, such as a virus, or after a period of stress. But once triggered, the fatigue is maintained by other factors, including some coping styles.
‘Beliefs and attitudes towards illness are important in many physical and mental conditions. In CFS, fear that exercise or activity may make symptoms worse can hinder recovery and inadvertently perpetuate the symptoms.’
CBT for CFS encourages people to gradually build up and resume regular daily activities, to identify and plan how to deal with any triggers that might cause symptoms to get worse – to learn how to manage and reduce the symptoms.
‘It also helps address any beliefs that may make recovery more difficult. CBT helps patients understand their symptoms, tackle the understandable fears they have about activity and encourages people to do more despite their tiredness.’
Professor Chalder has developed a version of the specialised therapy for young people that involves the whole family. Family-based CBT is routinely offered to 11 to 18-year-olds referred to the Chronic Fatigue Service. For them, the consequences of CFS are dire, impacting on education, and physical and social development as a result of long periods out of school.
The choice between rest and activity as a treatment for CFS has often been at the core of a controversial debate. Both CBT and the other NICE-recommended treatment for CFS – Graded Exercise Therapy (GET) – encourage people to become active again.
Our researchers were involved in the landmark PACE trial, which showed that CBT and GET for CFS were more effective and more cost-effective than adaptive pacing therapy – where people balance rest with activity – or specialist medical treatment. One year, after a course of CBT or GET, a fifth of people had recovered and were able to partake in life without significant fatigue.
The PACE trial used the ‘Chalder Fatigue Scale’, first created in 1993 to measure physical and mental tiredness. The 11-question form is used in both research studies and specialist clinics all over the country to monitor people’s progress and assess how effective the treatment is.
Research led by Professor Trudie Chalder
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• Chalder T et al. Family cognitive behaviour therapy for chronic fatigue syndrome: an uncontrolled study. Archives of Disease in Children, 2002; 86(2): 95-97
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