The information we share about cognitive behavioural therapy (CBT) is not a recommendation.
Instead, our aim is to support you to make an informed decision about which symptom management approach you may or may not want to consider trying.
You may also want to hear about other people’s experiences of what they found to be helpful or not.
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:
CBT and graded exercise therapy (GET) are symptom management approaches recommended by the National Institute of Health and Care Excellence (NICE) guideline for M.E./CFS.
However, there is much debate and discussion about these approaches – and the published evidence for them – as to whether or not they work, and whether they may cause harm.
The NICE guideline is currently under review; a new guideline is expected to be published in October 2020.
In October 2019, we responded to NICE’s call for evidence as part of its guideline review, using data from our Big Survey of more than 4,000 people with M.E. We made it clear that we do not support the current 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. This is because of the legitimate questions raised about their safety and effectiveness.
This is a position shared by a significant number of people with M.E., scientists, clinicians, charities and other advocates.
It’s very important to note that there is no published research into the effectiveness of GET for those who are severely affected by M.E., and that this treatment is not recommended for severe M.E.
The symptom management approach that the majority of people with M.E. consistently tell us offers them the most benefit is pacing.
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 good-quality information as you can about the treatment you want to try, based on the best evidence available, will help you make a decision about what feels right for you.
Ideally, we would look to well conducted clinical trials for useful evidence about effectiveness, but none exists (see links to the PACE trial, below); and there is also no equivalent of the yellow card system for reporting adverse reactions to drugs.
We therefore have to turn to patient surveys for evidence about effectiveness. Our surveys, along with all the others carried out by other organisations, consistently show a large proportion of patients who have undertaken CBT report no difference in their symptoms or even report harm, ie. that their symptoms got worse, sometimes severely.
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 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.
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; while a significant number say it makes no difference and even 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.
Action for M.E.’s 2019 Big Survey found that of those who tried CBT in the last five years:
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:
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.
The results of a large-scale study published in 2011, of adaptive pacing therapy, GET and CBT, called the PACE trial, found 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, the PACE trial was based on a flawed hypothesis that M.E. “was largely being maintained by abnormal illness beliefs and behaviours, along with inactivity and deconditioning” (Shepherd, 2017). 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 (ie. pacing). They also recommend pharmaceutical and non-pharmaceutical therapies to treat the symptoms, which can help improve the quality of life.
This is not a recommendation. Instead, our aim is to support you to make an informed decision about which symptom management approach you may or may not want to consider trying.
.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.
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).
A specialist therapist offering CBT for M.E. will use a number of cognitive strategies which 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 2019 paper in SAGE journals concluded 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.”
You may 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.
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.
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.
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.
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