Royal Australian College of General Practitioners (RACGP) – First published: March 2015 Updated: April 2024
The decision by the RACGP to ignore the recommendation in the new NICE guideline on ME/CFS that GET should no longer be prescribed for ME/CFS is very disappointing news for people with ME/CFS in Australia.
The NICE guideline committee reviewed all the evidence from clinical trials involving GET for ME/CFS and concluded that GET was both ineffective and harmful.
The MEA would be very happy to offer our support to our charity colleagues in Australia if they decide to challenge this decision – which I hope they will.
Dr Charles Shepherd,
Trustee and Hon. Medical Adviser to the ME Association.
Member of the 2018-2021 NICE Guideline Committee.
Member of the 2002 Independent Working Group on ME/CFS.
Emerge Australia Statement: RACGP HANDI Guide: Exercise For ME/CFS | 24th April 2024
Australia: RACGP website information:
Article extracts
Intervention
Incremental physical activity for CFS/ME includes the establishment of a patient-specific baseline of achievable and sustainable exercise or physical activity, followed by slow increments in the duration of physical activity.Incremental physical activity aims to gradually increase the patient’s ability to undertake physical activity and reduce their feeling of fatigue. How it works is not understood but it may prevent/ reverse the secondary physical deconditioning and exercise intolerance related to prolonged (relative) inactivity.There are different models for implementation that show likely benefit. A shared element in randomised clinical trials (RCTs) showing benefit is that the activity or exercise is slowly increased over time. Incremental physical activity differs from adaptive pacing therapy (APT) by encouraging the participant to extend their physical activity beyond their baseline in a programmed stepwise progression rather than staying well within (~70%) of their perceived energy expenditure envelope.
Incremental physical activity has also been shown to improve muscle strength, cardiovascular endurance and symptoms in a wide variety of conditions that have chronic fatigue as a symptom, such as heart disease, cancer, chronic obstructive pulmonary disease and post-viral fatigue.
Precautions/Adverse effects
Unaccustomed activity can produce or exacerbate many CFS/ME symptoms. A mild and transient increase in symptoms is explained as a normal response to an increase in physical activity; however, a more severe or sustained exacerbation suggests the activity was excessive. Patients may feel shamed or blamed if it is implied they are too fearful of activity or too fearful of exacerbating their symptoms of post-exertional malaise (PEM). Onset of PEM may be delayed for up to 3 days after exercise.
Surveys by patient groups of their members have suggested that incremental physical activity may be harmful to some people with CFS/ME and advocate against such programs. This is a valid concern, but may be due to inappropriately planned or progressed exercise programs, possibly undertaken independently or under supervision from a person without appropriate experience, or subgroups within the spectrum of CFS/ME who are more vulnerable to more severe PEM. Implementation needs to be very sensitive to these concerns and be aware that many patients and carers will be very aware of the strong advocacy specifically against such programs. Trust and acknowledgement of these concerns, with appropriate caution is likely to be crucial.
Incremental physical activity should be supervised by a physiotherapist or accredited exercise physiologist, preferably with specific experience and training in working with people with CFS/ME. Costs vary significantly depending on the type of exercise. In some cases, health insurance may cover some costs.
Availability
The PACE trial has produced a comprehensive graded exercise therapy (GET) therapist manual (and a manual for patients), which can be downloaded free of charge by going to the PACE trial website and selecting the relevant manuals from the trial information section.
Description
Graded exercise therapy (GET) is a program of incremental physical activity used in the largest of the seven RCTs to date. It is delivered in three phases over several sessions (e.g., 15 sessions in the PACE trial
Any activity that can be incrementally increased in terms of duration, intensity, frequency is appropriate, including walking, swimming, and the use of exercise machines. These activities can be alternated, noting that a change in activity may require adjustment to the duration, intensity, frequency of the activity.
If increased symptoms occur after an increment, the patient is encouraged to stick at the current level until symptoms reduce, and then increase afterwards. However, activity is mutually reviewed on a regular basis, and plans may be adjusted depending on the patient’s general health and symptoms.
Although GET has been extensively tested in clinical trials, it remains controversial within some support groups.
Compliance
Most trials have found few dropped out of GET, and no more than other treatments. Increased long-term rest is not recommended and can lead to further deconditioning. Exercise and physical activity considered a safe intervention with numerous health benefits, including physical and mental health. However, participating in an uncontrolled manner can increase symptoms temporarily.
Mental Health Disorders
More than two-thirds of patients with CFS/ME in the trials meet diagnostic criteria for mental health disorders such as anxiety disorders, dysthymia, or depression. Whether this is due to the CFS/ME or not, it should be treated so that the patient can better manage their CFS/ME. Many therapies have been tried in CFS/ME but only CBT and incremental exercise therapy appear to produce meaningful benefit. However, neither of these treatments are “curative”, but can help patients improve their function and quality of life.
Grading
Moderate. (We are moderately confident in this research evidence. Future research is likely to refine/ change the recommendation. This has been downgraded from ‘Strong’ due to concerns about definition/ inclusion criteria and implementation concerns/ experience)
Further information