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Living with M.E.

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Cognitive behavioural therapy (CBT)

Cognitive behavioural therapy

The information set out on this page about cognitive behavioural therapy (CBT) is not a recommendation. Instead, we aim to support you to make an informed decision about which treatment you may or may not want to consider trying.

The NHS says that CBT is a talking therapy “based on the concept that your thoughts, feelings, physical sensations and actions are interconnected." Not all CBT is the same.

This page covers the following topics:

  • Specialist CBT for M.E.
  • Other types of talking therapy
  • Debate about CBT
  • Is CBT safe and effective?
  • Action for M.E.’s position on CBT

Specialist CBT for M.E.

The CBT offered in some NHS M.E./CFS services is aimed at improving your levels of functioning and reducing fatigue, gradually increasing your activity, and helping you reflect on the way you think about M.E. and how it affects you.

A specialist therapist offering CBT for M.E. will use a number of strategies. Cognitive strategies aim to help you understand thoughts and beliefs that you have about M.E. and the way it affects you.

Behavioural strategies in CBT are aimed at helping you establish a baseline, ie. the level of activity you can do regularly and safely, without making your symptoms worse. Some patients find it helpful to keep a detailed diary to track this. Only when this can be managed for a reasonable length of time can you begin to very gradually increase your activity.

Because everyone’s manageable level of activity is different, it’s essential that any CBT therapist understands the limitations imposed by M.E., and that many people with M.E are unable to progress towards agreed goals, however carefully and gradually they try.

A recent published paper, "Cognitive behavioural therapy for myalgic encephalomyelitis/chronic fatigue syndrome is not effective. Re-analysis of a Cochrane review" stated that, "This reanalysis shows that CBT does not lead to an improvement of fitness, a reduction of the number of patients on sickness and disability benefits or an improvement of employment status.”

No symptom-management approach should involve pushing you harder than you feel able or willing to manage, and you should always raise any concerns you have with the professional who is supporting you (see below).

It is likely that you will be offered CBT, or an activity management programme that combines elements of this approach along with advice on pacing, if you are referred to a specialist NHS M.E./CFS service.

Programmes of support can vary considerably between services in what they offer and how they are structured. This includes how much individual attention you receive from a physiotherapist or OT to assess your particular baseline. You should ask as many questions as you need to in order to understand what approach will be used and what this will involve, before making a decision.

Other types of talking therapy

Counselling, including CBT, may also be offered through a service that’s not specifically for people with M.E. and or CFS, such as the Improving Access to Psychological Therapies (IAPT), as a way of coping with anxiety and depression.

It may be that you are experiencing one of these mental health issues as a result of living with M.E., so it may be helpful to consider counselling support.

From April 2018, all clinical commissioning groups in England are required to offer IAPT services integrated with physical healthcare pathways. In theory, this should mean that your GP should offer you the option of counselling, including CBT, if you are struggling with anxiety, depression or other mental health issue, alongside strategies that help you manage your physical symptoms (eg. medication for pain and/or sleep).

However, we have heard reports that some people with M.E. are being offered CBT through the IAPT service, based on the incorrect premise that M.E. is what doctors call a Medically Unexplained Condition (MUS), ie. one with a psychiatric basis.

M.E. is not MUS, and categorising it as such contradicts the World Health Organisation’s International Classification of Diseases, which states that M.E. is a neurological condition. The NICE guideline also makes it clear that specialist services for M.E. are likely to be needed by a significant number of people with the condition; it is likely that the approach offered by MUS services would be inappropriate in many cases

We would welcome your feedback on any experiences with the IAPT programme; please do get in touch.

Debate about CBT

Currently the National Institute of Health and Care Excellence (NICE) guideline for M.E./CFS recommends CBT and graded exercise therapy (GET). There is much debate and discussion about these treatments – and the published evidence for them – about whether or not they work, and whether they might cause harm.

Please note the NICE guideline is currently under review, with professionals, people with M.E. and charities, including Action for M.E., taking an active role in this process; a new guideline is expected to be published in October 2020.

A significant number of patients, scientists and charities, including Action for M.E., do not support the guideline’s current view that CBT and GET “are the interventions for which there is the clearest research evidence of benefit” for people with mild to moderate M.E., given legitimate questions being raised about safety and effectiveness (see below).

It’s very important to note that there is no published research into the effectiveness of CBT for those who are severely affected by M.E., and that this treatment is not recommended for severe M.E.

Please remember that it’s your decision, and yours alone, which symptom-management approach you try, and which you don’t. You should never be pressured into trying an approach you feel strongly against, or be dismissed for wanting to try something that you believe might be of value to you. You have the right to refuse or withdraw from any treatment, approach or care plan without this affecting other aspects of your care, or future choices about care.

Is CBT safe and effective?

Within published, peer-reviewed research, there is a considerable debate about the effectiveness (and safety – see below) of CBT. Some people with M.E. tell us that they find CBT useful; others do not and some report an increase in symptoms following CBT. It is frequently unclear whether this is specialist CBT for M.E. or a more general approach.

As of early 2018, government health authorities in the US and The Netherlands have instructed clinicians to stop recommending CBT and GET as reliable treatments for people with M.E., citing the potential harms associated with GET in particular.

A 2019 survey by Forward M.E., undertaken at the request of the NICE guideline development group, found that 800 of the 2,280 survey respondents had been offered a course of CBT, with 85% starting the course. We asked them:

  • if their symptoms worsened because of the treatment; 49% said no, 47% said yes; 22% also developed new symptoms
  • what impact CBT had on their physical health; 53% said no improvement; 26% said it deteriorated; 26% said it improved
  • what impact CBT had on their mental health; 41% said it improved; 28% said no improvement; 27% said it deteriorated.

A 2017 analysis of surveys by Action for M.E. and other patient charities, published in the Journal of Health Psychology, suggests that CBT is of benefit to 8% to 35% of patients. The paper cited pacing as the symptom-management approach that had the highest reported benefit.

Action for M.E.’s 2014 M.E. Time to deliver survey of more 2,000 people with M.E. showed that around a third (33%) of respondents had tried CBT. Of these:

  • 54% said they found it helpful or very helpful
  • 34% said it resulted in no change
  • 12% said it made them a bit or much worse.

The results of a large-scale study in 2011, of adaptive pacing therapy, GET and CBT, called the PACE trial claimed that some people with mild or moderate M.E. experienced a small degree of improvement after undertaking CBT and GET, and no significant improvement after adaptive pacing therapy. However, repeated questions have been raised about the methodology of this trial, and the reliability of its results, including potential harm caused by GET. You can read more about the PACE trial here.

Instead of CBT and/or GET, some disease experts recommend that patients manage their activities to stay within their “energy envelope” to prevent crashes and possible long-term worsening from post-exertional malaise. They also recommend pharmaceutical and non-pharmaceutical therapies to treat the symptoms, which can help improve the quality of life.

Action for M.E.’s position on CBT

It is our view that, while potentially moderately helpful for a minority of people with M.E. and/or CFS, this treatment is not effective or safe for everyone.

We do not support the NICE guideline’s view that CBT and GET “are the interventions for which there is the clearest research evidence of benefit” for people with mild to moderate M.E., given the legitimate questions raised about their safety and effectiveness.

Because of the complexity of the illness, its fluctuating nature and the wide spectrum of symptoms, different things work for different people. Reading and reflecting on as much as information as you can, about the treatment you want to try, will help you make a decision about what feels right for you.