The information we share about graded exercise therapy (GET) 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.
This page covers the following topics:
GET and cognitive behavioural therapy (CBT) 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 harm, 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 harm. Our surveys, along with all the others carried out by other organisations, consistently show a large proportion of patients who have undertaken GET report harm, ie. that their symptoms got worse, sometimes severely.
For example, one respondent to Forward ME’s 2019 survey (see below) said, following a course of GET “I was left almost totally bed/housebound, and the minor tasks I had previously been able to complete were no longer possible.”
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.
A small minority of people with M.E. tell us that they find GET useful; many others do not and a significant number report an increase in symptoms following GET. Within published, peer-reviewed research, there is a considerable debate about its effectiveness (and safety – see above).
There is no high-quality, peer-reviewed published evidence to support either the efficacy or the safety of GET, whoever provides it, while patient surveys consistently find that GET makes symptoms worse, or makes no difference.
Action for M.E.’s 2019 Big Survey of more than 4,000 people with M.E. found that:
A large number of people who completed our survey said that GET is making their symptoms worse. Even when GET is undertaken with a practitioner who understands how the condition affects the person with M.E., offers a supportive and collaborative relationship and is an equal partner in the treatment, it is having a worsening effect on symptoms.
Outcomes are worse for those who saw an M.E. specialist with almost half experiencing a worsening of symptoms. GET only helped 4% of those who saw a health professional who does not specialise in M.E. with almost two thirds (61%) having a worsening of symptoms.
A 2019 survey by Forward M.E., undertaken at the request of the NICE guideline development group as part of its current guideline review, 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.
It is Action for M.E.’s view that CBT and GET are not, as stated by the current NICE guideline, the interventions “for which there is the clearest research evidence of benefit” for people with mild to moderate M.E.
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 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.
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 you can manage your baseline for a reasonable length of time can you begin, if you choose, to very slowly and gradually increase your activity.
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.
If your experience demonstrates that you are not able to increase your activity, and instead need to stay within your “energy envelope” to prevent symptoms worsening, this would be pacing and not 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.
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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