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What are GET and CBT?

Please be aware that given recent publications and emerging evidence, this page is currently under review.

The information set out on this page about graded exercise therapy (GET) and cognitive behavioural therapy (CBT) is not a recommendation about any specific treatment for M.E.

Instead, it aims to support you to make an informed decision about which treatment you may or may not want to consider trying.

We have set out our information about GET and CBT under the following headings:

  • Important information
  • What are these treatments?
  • What do these treatments involve?
  • Are these treatments effective?
  • Are these treatments safe?
  • What should I do if I don’t think these treatments are right for me?
  • What is Action for M.E.’s view of these treatments

It’s important to note that, in this context, the word “treatment” means a way of managing symptoms, and not a cure. Any doctor or health professional you see will most likely be using the word “treatment” in this way.

Important information

GET and CBT are recommended by the National Institute of Health and Care Excellence (NICE) in its guideline for M.E./CFS. However, this guideline is currently under review, and a significant number of patients, scientists and charities, including Action for M.E., do not support the 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 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 GET and/or CBT for those who are severely affected by M.E., and that these treatments are not recommended for severe M.E.

What are these treatments?

GET refers to a systematic programme of physical activity or exercise that aims to support you to gradually increase your overall activity levels. It should only be undertaken with the supervision of a qualified physiotherapist or occupational therapist (OT) who has experience of working with people with M.E. For this reason, GET is usually offered as part of a symptom-management programme at a specialist NHS M.E./CFS clinic.

GET is not the same as “exercise” and any advice to undertake unstructured exercise not only contravenes the NICE guideline on M.E. but is potentially harmful.

CBT is a talking therapy that is used to help people come to terms with changes in their lives. This can include a chronic illness, like M.E., or a mental health issue or significant life event.

The CBT offered in some NHS M.E./CFS services (and tested for M.E. in a large-scale trial called the PACE trial – see below) 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.

CBT 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) programme, is offered 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 CBT to support you with this.

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 CBT, if you are struggling with a mental health issue, alongside strategies that help you manage your physical symptoms (eg. medication for pain and/or sleep). We would welcome your feedback on how this is working in practice: contact us about your experience.

What do these treatments involve?

A GET programme for someone with M.E. should always begin by supporting you to find your baseline, ie. the level of activity you can do regularly and safely, without making your symptoms worse. Only when this can be managed for a reasonable length of time can you begin to very gradually increase your activity. As part of GET, a physiotherapist or OT will support you to:

  • set goals that are important to you
  • find a daily routine by helping to get the right balance between activity and rest
  • gradually increase physical activities at a pace that works for 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) and gradually increase your physical and mental activities at a pace that works for you.

Because everyone’s manageable level of activity is different, it’s essential that any GET or CBT therapist understands the limitations imposed by M.E., and that not everyone is able to make an increase in activity, however carefully and gradually they try.

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 GET and/or CBT, or an activity management programme that combines elements of each 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. 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.

Are these treatments effective?

Some people tell us that they find GET and/or CBT useful, while others do not and, within published, peer-reviewed research, there is a considerable debate about the effectiveness (and safety – see below) of both approaches.

The results of a large-scale study of GET and CBT called the PACE trial (White et al, 2011) found that some people with mild or moderate M.E. experienced a small degree of improvement after undertaking CBT and GET.

However, repeated questions have been raised about the methodology of this trial, and the reliability of its results. Concerns include:

  • broad criteria for entry into the trial meant that patients who did not experience post-exertional malaise were included, so it cannot be assumed that the results of the trial apply to patients who have this symptom. Australian charity Emerge has published a useful explanation of issues relating to this, and other GET research (Eyssens, 2017)
  • the PACE trial authors did not use objective measures to assess the effectiveness of CBT and GET, but instead relied on subjective measures, ie. reporting by patients, which can be unreliable – see Prof Chris Ponting’s comment below.
  • the models of GET and CBT used in the PACE trial assume that M.E. is perpetuated by deconditioning (lack of fitness). However, a number of studies disagree that deconditioning is the cause of M.E. and/or CFS, and is in fact a consequence of the condition.
  • changes to the recovery criteria part-way through the trial meant that “it was possible to score below the level required for trial entry, yet still be counted as ‘recovered’” (Wilshire et al, 2016)
  • the original analysis of the study data “did not consistently follow the procedures set out in the published protocol, and it is unclear whether the conclusions are fully justified by the evidence” (Wilshire et al, 2018)

Asked to comment on the most recent independent re-analysis of the PACE data by the Science Media Centre, Prof Chris Ponting (who is Deputy Chair of the UK CFS/M.E. Research Collaborative) notes that Wilshire et al suggest the modest improvements seen in the PACE trial are in fact the result of “raised expectations of CBT and/or GET participants that their treatments would be effective. Expectations are heightened, they argue, when participants are not blinded to their treatment* and are assured that their treatment is effective, as was the case for the PACE trial.”

*blinded treatment means that neither patients nor researchers know which patient is receiving which treatment, until the study is over. It was not possible to do this as part of the PACE trial.

Are these treatments safe?

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.

The fact that GET has had a harmful effect on some people with M.E. is well documented by patient charities, though it is important to note that there limitations to this type of research, including that treatment approaches are not standardised.

An analysis of surveys by Action for M.E. and other patient charities, published in the Journal of Health Psychology (Geraghty, 2017), suggests that CBT is of benefit to 8% to 35% of patients, while GET brings about “negative responses” in 54% to 74% of patients. The paper cited pacing as the symptom-management approach that had the highest reported benefit.

Our 2014 M.E. Time to deliver survey of more 2,000 people with M.E. than shows that less than a third (23%) of respondents had tried GET. Of these:

  • 35% said they found it helpful or very helpful
  • 18% said it resulted in no change
  • 47% said it made them a bit or much worse.

More respondents (33%) told us they 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.

What should I do if I don’t think these treatments are right for me?

It’s your decision, and yours alone, which treatments you try, and which you don’t. You should never be pressured into trying a treatment you feel strongly against, or be dismissed for wanting to try a treatment approach that you believe might be of value to you.

The NICE guideline for M.E. says: “Healthcare professionals should be aware that – like all people receiving care in the NHS – people with CFS/ME have the right to refuse or withdraw from any component of their care plan without this affecting other aspects of their care, or future choices about care.“

If you have already begun a programme of CBT or GET and are concerned it’s not right for you, it’s never too late to discuss your concerns with the physiotherapist or OT working with you. If you are finding the programme difficult or painful, or are not sure about what you are being asked to do (or why), or if you feel uncomfortable for any other reason, it’s really important to bring this up.

Action for M.E. has a number of resources that aim to help you feel more confident about raising your concerns. You can:

What is Action for M.E.’s view of these treatments?

It is our view that, while potentially moderately helpful for a minority of people with M.E. and/or CFS, these treatments are 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.