Draft NICE ME/CFS Guideline: Cognitive Behavioural Therapy
The draft of the revised NICE guideline has been published on November 10th 2020. It will be open for consultation until December 22nd.
As a stakeholder WAMES will be responding to this consultation and we invite Welsh residents to let us know what you think so we can include your thoughts in our response. Contact the helpline or use the contact form on this website
You can read the draft guideline here
Read excerpts from the guideline here on our blog. We will take our time to consider the implications of this important document. The draft guideline says this about CBT:
Psychological support: cognitive behavioural therapy (p 34)
Only offer cognitive behavioural therapy (CBT) to people with ME/CFS who would like to use it to support them in managing their symptoms of ME/CFS and to reduce the psychological distress associated with having a chronic illness. Do not offer CBT as a treatment or cure for ME/CFS.
CBT should be only 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.
Discuss with the person the principles of CBT, its role in supporting them to adapt to and manage the impact of symptoms of ME/CFS and the potential benefits and risks. Explain that CBT for people with ME/CFS:
- is not curative
- is designed to improve wellbeing and quality of life
- aims to improve functioning and reduce the psychological 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
- takes a non-judgemental, supportive approach to the person’s experience of their symptoms and the challenges these present.
Explain what CBT involves so people know what to expect. Tell them that it:
- 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 that
- help the person to work towards meaningful goals and priorities that they have chosen themselves
- takes into account how symptoms are individual to the person, can fluctuate in severity and may change over time.
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 their personal meaning of symptoms and illness, and how this might relate to how they manage their symptoms
- 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
- developing a self-management plan
- 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.
Children and young people
Only consider CBT for a child or young person with ME/CFS if they and their parents or carers have been fully informed about its aims and principles and any potential benefits and risks.
If CBT is considered for children and young people with ME/CFS:
- involve parents or carers in the therapy wherever possible
- adapt therapy to the child or young person’s cognitive and emotional stage of development.
People with severe or very severe ME/CFS
Healthcare professionals delivering CBT to a person with severe or very severe ME/CFS should adjust the process and pace of CBT to meet the person’s needs. This might include shorter, less frequent sessions and longer-term goals.
Why the committee made the recommendations (p67):
- no evidence that CBT is a cure for ME/CFS
- may be useful in supporting people who live with ME/CFS to manage their symptoms
- has the potential for harm when it is inappropriately delivered
- limited evidence in children and young people
- none of the clinical evidence included or reflected the needs of people with severe ME/CFS