NICE's discussion of GET in their Evidence Document
https://www.nice.org.uk/guidance/GID-NG10091/documents/evidence-review-7
It was the opinion of the committee that a physical activity or exercise programme can be 45 beneficial for people who have chronic fatigue (not ME/CFS) and in a subset of people with 46 ME/CFS who have already begun to improve and feel they want to do more. Due to the 47 reported harms identified in the qualitative review, as well as the committee’s experience of 48 the effects of exceeding individual limitations in exercise capacity the committee agreed that 49 it would be misleading and harmful to advise people with ME/CFS that a physical activity 50 programme will be appropriate for them except in certain circumstances. They described this DRAFT FOR CONSULTATION
The committee’s discussion and interpretation of the evidence 1 as people who are able and ready to progress their physical activity beyond their current 2 activities of daily living and as such would like to focus on their ME/CFS energy management 3 around physical activity. The committee agreed the expertise of the person delivering the 4 intervention is of high importance to prevent harm, they agreed that any physical activity 5 programme should only be implemented under the supervision of specialist ME/CFS 6 physiotherapy and/or occupational therapy service.
The committee made a recommendation 7 to reflect this. 8 The committee discussed that people with ME/CFS react significantly differently to physical 9 activity compared to healthy people and people with other medical conditions. The concept of 10 an ‘anaerobic threshold’ was found to be useful by some committee members to describe the 11 limitations in energy capacity experienced by many people with ME/CFS, however other 12 committee members thought it was not easily understood and refers to something that 13 cannot be readily measured in clinical practice.
The committee thought it was important to 14 note that this ‘threshold’ is different for different people, is not fixed (i.e. it can fluctuate/move 15 up or down), and is usually identified through trial and error, therefore people with ME/CFS 16 may not be able to assess risk of harm. ‘Energy limits’ and ‘energy envelope’ were preferred 17 terms as they were considered to be more practical and more widely understood. 18
The committee noted the positive experiences of people who had participated in an aquatic 19 exercise intervention. Session duration gradually increased over time, although the 20 intervention was based on a model of adapted pacing therapy where patients are active only 21 within their symptom limits and energy envelope.
The committee considered the low quality 22 of the evidence, which was based on one small study and the lack of any clinical outcome 23 data from randomised controlled trials and decided that there was not enough evidence to 24 recommend this type of exercise intervention.
25 The committee agreed their recommendations should emphasise that activity and/or physical 26 activity programmes should not assume that increasing activity is standard requirement but 27 rather that activity should be graded down, towards stabilisation, or up, taking into account 28 individual symptoms and stage of illness. Therefore, the committee decided make a ‘do not ‘ 29 recommendation to offer advice to undertake unsupervised, or unstructured, exercise, 30 generalised physical activity or exercise programmes, structured activity or exercise 31 programmes that are based on deconditioning as the cause of ME/CFS and any programme 32 based on fixed incremental in physical activity or exercise ( for example graded exercise 33 therapy). 34 In developing more specific recommendations regarding the content, approach and delivery
of physical activity management, the committee considered the experiences of the benefits
36 and harms associated with GET interventions identified in the qualitative review, as well as 37 evidence from other qualitative reviews and reports and their own experiences of these types 38 of interventions. The committee noted that some people with ME/CFS have found physical 39 activity programmes can make their symptoms worsen, for some people it makes no 40 difference and others find them helpful.
The committee considered it important to discuss this 41 with people with ME/CFS and made a recommendation to reflect the risks and benefits. The 42 committee also outlined what a personalised physical activity programme should look like 43 based on their experience, the programme included establishing the person’s physical 44 activity baseline at a level that does not worsen their symptoms, starts by reducing the 45 person’s activity to within their energy envelope, can be maintained successfully before 46 attempting to increase physical ability , uses flexible increments for people who want to focus 47 on improving their physical abilities while remaining within their energy envelope, recognises 48 flares and relapses early and outlines how to manage them and incorporates reviews 49 regularly as well as whenever the person requests one.
The committee stated the 50 importance of flexible increments that were sensitive to the person’s energy envelope and 51 emphasised that fixed increments were not part of a programme. The committee DRAFT FOR CONSULTATION The committee’s discussion and interpretation of the evidence 1 recommended the plan should only be delivered or overseen by a physiotherapist or 2 occupational therapist who has training and expertise in ME/CFS. 3 Physical maintenance
4 The committee discussed that it is important to acknowledge that people with ME/CFS can 5 have reduced and limited mobility and in their experience this can lead to health problems. 6 They noted it is important that where appropriate people with ME/CFS have management 7 plans for physical maintenance, symptom control or restoration of physical ability.
The plans 8 should consider the following components: joint mobility, muscle flexibility, postural and 9 positional support, muscle strength and endurance, bone health and cardiovascular health. 10 The committee included a definition of physical maintenance in the terms used in the 11 guideline to clarify that physical Maintenance is the process of incorporating in daily activity,
12 a level of movement which does not exacerbate symptoms, and which ensures that joint and 13 muscle flexibility does not deteriorate further than that caused by the condition so far. 14 The committee recommended that people with ME/CFS who are immobile should be given 15 information about the recognition and prevention of the possible complications of long-term 16 immobility such as bone health and skin problems.
Some of the committee members with 17 personal experience of caring for people with limited mobility commented on the lack of 18 support or information they had received in these areas of care (for example, how to transfer 19 someone from a bed to a chair) and how it would have helped them.
The committee 20 supported this and made a recommended that families and carers are given advice on 21 support on how to help a person with ME/CFS follow their agreed physical maintenance 22 plans. 23 Children and young people 24 The committee did not consider that there were any specific considerations for children and