We do not recommend any individual treatments or management approaches for people with M.E. Instead, we offer key information to allow people with M.E. to make informed decisions.
Specialist M.E. services will often use elements of two approaches – graded activity therapy (GAT) and graded exercise therapy (GET).
Below we explain what these approaches involved, the evidence base for them, and self-reported results from people with M.E. shared in patient surveys.
Please note, there has been no research conducted into whether GET and GAT are helpful for people who are severely affected by M.E.
NB. In Novemebr 2016 the NICE guideline for M.E. webpage was updated to say: "In 2015 we were told about 3 US reports that indicated there are likely to be changes in diagnostic criteria that could have an impact on the guideline recommendations. We decided to start a check of whether the guideline needs updating, and plan to publish our decision in summer 2017. We have since been made aware of new information about the 2011 PACE trial, and we will also consider that in the check."
Charities including Action for M.E., national/local patient groups and research organisations are among those invited to register as stakeholders in order to input into this process. We will keep you updated as we develop and submit a response.
The National Institute for Health and Care Excellence (NICE) defines Graded Exercise Therapy (GET) as: “an evidence-based approach to CFS/M.E. that involves physical assessment, mutually negotiated goal-setting and education.”
It says: “The first step is to set a sustainable baseline of physical activity, then the duration of the activity is gradually increased in a planned way that is tailored to the person. This is followed by an increase in intensity, when the person is able, taking into account their preferences and objectives, current activity and sleep patterns, setbacks/relapses and emotional factors. The objective is to improve the person’s M.E. symptoms and functioning, aiming towards recovery.”
It also says: “GET should be delivered: by a suitably trained GET therapist with experience in CFS/ME, under appropriate clinical supervision; one-to-one if possible.”
People with M.E. who wish to try GET should ask to be referred to a specialist M.E. clinic, where this expertise exists, if at all possible. Details of clinics are available in our online directory.
GAT is a person-centred approach to managing a person’s symptoms by using activity.
Activities are selected, adapted and graded for therapeutic purposes to promote health and well-being. Therapy is goal-directed and uses activity analysis and graded activity to enable people to improve, evaluate, restore and/or maintain their function and well-being in self-care, work and leisure.
Activity management is described in detail on p 20 of the NICE guideline.
It is important that GAT, like GET, should be delivered by a suitably trained therapist with experience in CFS/ME, under appropriate clinical supervision. People with M.E. who wish to try GAT should ask to be referred to a specialist CFS/M.E. clinic, where this expertise exists, if at all possible. Details of clinics are available in our online directory.
A 2011 research study (PACE trial) identified an improvement for those patients that undertook CBT and GET over and above any benefit of standard medical care alone (14-16% improvement), which included advice on self-management.
GAT was not one of the approaches tested in the PACE trial. There have been no published randomised controlled trials of GAT.
The PACE trial concluded that GET is safe with few adverse effects (please note the trial did not include those who are severely affected by M.E.).
However, surveys carried out by Action for M.E. and other patient groups suggest that graded activity/exercise can sometimes be harmful, particularly if they are delivered inappropriately.
Scientific debate continues around the results of the PACE trial, with a number of researchers in the M.E. field and beyond questioning its findings. Following the release of anonymised data from the PACE trial, a December 2016 paper published in the peer-reviewed journal Fatigue: Biomedicine, Health and Behavior concluded that "the claim that patients can recover as a result of CBT and GET is not justified by the data."
In 2014, we surveyed more than 2,000 people with M.E. Our resulting M.E. Time to deliver report shows that:
In May 2015, the M.E. Association published in-depth analysis of its 2012 survey, focusing specifically on management strategies including GET. It found that:
A 2004 membership survey by the UK charity the 25% M.E. Group, which focuses specifically on supporting the severely affected found that: