The information set out on this page about graded exercise therapy (GET) 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.
If you have experience of GET, or other symptom-management approaches, that you would like to share, please complete our Big Survey, open until Friday 2 August 2019.
This page covers the following topics:
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 and experienced M.E./CFS-specialist 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.
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. 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. If your experience demonstrates that you are not able to increase your activity, but would prefer to stay within your “energy envelope,” then you should consider pacing instead of GET.
As part of GET, a physiotherapist or OT should aim to support you to:
Because everyone’s manageable level of activity is different, it’s essential that any GET 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.
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, 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.
Currently the National Institute of Health and Care Excellence (NICE) guideline for M.E./CFS recommends GET and cognitive behaviour therapy (CBT). There is much debate and discussion about these treatments – and the published evidence for them – about whether or not they work, and whether they may 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 GET 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.
Some people with M.E. tell us that they find GET useful; others do not and some report an increase in symptoms following GET. Within published, peer-reviewed research, there is a considerable debate about its effectiveness (and safety – see below).
A 2019 survey by Forward M.E., undertaken at the request of the NICE guideline development group, found that 540 of the 2,280 survey respondents had been offered a course of GET, with 79% 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 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.
Action for M.E.’s 2014 M.E. Time to deliver survey of more 2,000 people with M.E. showed that less than a third (23%) of respondents had tried GET. Of these:
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 results of a large-scale study 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, 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.
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.
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