Cognitive Behavioural Therapy

Also see the section on care for people with severe or very severe ME/CFS.

1.12.28 Discuss cognitive behavioural therapy (CBT) with adults, children and young people with ME/CFS (and their parents or carers, as appropriate). Explain:

• - its principles, including that it may help them manage their symptoms, but it is not curative (see box 5), and,
• - any potential benefits and risks.

The committee wanted to highlight that cognitive behavioural therapy (CBT) has sometimes been assumed to be a cure for ME/CFS. However, it should only be offered to support people who live with ME/CFS to manage their symptoms, improve their functioning and reduce the distress associated with having a chronic illness.

1.12.29 Only offer CBT to adults, children and young people with ME/CFS if, after discussing it (see recommendation 1.12.28), they would like to use it to support them in managing their symptoms.

1.12.30 For children and young people with ME/CFS who would like to use CBT:

• - involve parents or carers (as appropriate) in the therapy wherever possible.
• - adapt the therapy to the child or young person's cognitive and emotional stage of development.

Also see the section on principles of care for people with ME/CFS (including the additional principles of care for children and young people with ME/CFS).

1.12.31 CBT should only be delivered by a healthcare professional with appropriate training and experience in CBT for ME/CFS, and under the clinical supervision of someone with expertise in CBT for ME/CFS.

1.12.32 Explain that CBT for people with ME/CFS:

• - aims to improve their quality of life, including functioning, and reduce the distress associated with having a chronic illness.
• - does not assume people have 'abnormal' illness beliefs and behaviours as an underlying cause of their ME/CFS, but recognises that thoughts, feelings, behaviours and physiology interact with each other.

1.12.33 Explain what CBT involves so people know what to expect. Tell them that it:

• - takes a non-judgemental, supportive approach to the person's experience of their symptoms and the challenges these present.
• - is a collaborative, structured, time-limited intervention that focuses on the difficulties people are having at that time.
• - involves working closely with their therapist to establish strategies to work towards goals and priorities that they have chosen themselves.
• - takes into account how symptoms are individual to each person, can fluctuate in severity and may change over time.

1.12.34 CBT for people with ME/CFS should include the following components:

• - developing a shared understanding with the person about the main difficulties and challenges they face.
• - exploring the personal meaning of their symptoms and illness, and how this might relate to how they manage their symptoms.
• - developing a self-management plan.
• - working together to adapt and refine self-management strategies to improve the person's functioning and quality of life, for example their sleep, activity and rest.
• - reviewing their plan regularly to see if their self-management strategies need to be adapted, for example if their symptoms or functioning change.
• - developing a therapy blueprint collaboratively with their therapist at the end of therapy.