We do not recommend any individual treatments or management approaches for people with M.E. Instead, we offer key information to allow people with M.E. to make informed decisions.
Some specialist services offer cognitive behavioural therapy (CBT) for M.E.
The NICE guideline describes CBT as: “An evidence-based psychological therapy that is used in many health settings, including cardiac rehabilitation and diabetes management. It is a collaborative treatment approach. When it is used for CFS/M.E., the aim is to reduce the levels of symptoms, disability and distress associated with the condition. A course of CBT is usually 12 to 16 sessions. The use of CBT does not assume or imply that symptoms are psychological or ‘made up’.”
The NICE guideline makes it clear that CBT “should be delivered: by a suitably trained [GET or CBT] therapist with experience in M.E., under appropriate clinical supervision.”
People with M.E. who wish to try CBT should ask to be referred to a specialist M.E. clinic, where this expertise exists, if at all possible. Details of clinics are available in our services directory.
NB. In Novemebr 2016 the NICE guideline for M.E. webpage was updated to say: "In 2015 we were told about 3 US reports that indicated there are likely to be changes in diagnostic criteria that could have an impact on the guideline recommendations. We decided to start a check of whether the guideline needs updating, and plan to publish our decision in summer 2017. We have since been made aware of new information about the 2011 PACE trial, and we will also consider that in the check."
Charities including Action for M.E., national/local patient groups and research organisations are among those invited to register as stakeholders in order to input into this process. We will keep you updated as we develop and submit a response.
CBT is not a cure but it may help some people to cope with the impact of the illness.
In 2014, we surveyed more than 2,000 people with M.E. Our resulting M.E. Time to deliver report shows that:
A 2011 research study (the PACE trial) identified a improvement for those patients that undertook CBT and GET over and above any benefit of standard medical care alone (14-16% improvement), which included advice on self-management.
Scientific debate continues around the results of the PACE trial, with a number of researchers in the M.E. field and beyond questioning its findings. Following the release of anonymised data from the PACE trial, a December 2016 paper published in the peer-reviewed journal Fatigue: Biomedicine, Health and Behavior concluded that "the claim that patients can recover as a result of CBT and GET is not justified by the data."
There have been no published randomised controlled trials of CBT in children or those who are severely affected by M.E.
In May 2015, the M.E. Association published in-depth analysis of its 2012 survey, focusing specifically on management strategies including CBT. It found that:
A 2004 membership survey by the UK charity the 25% M.E. Group, which focuses specifically on supporting the severely affected, found that 93% of those surveyed found CBT unhelpful.