NICE draft ME/CFS guideline: energy management, rest & physical maintenance

The draft NICE guideline is open for consultation until December 22nd 2020.

Contact the helpline or use the contact form on this website with your comments for inclusion in the WAMES response.

You can read the draft guideline here

Read excerpts from the guideline here on our blog. Today we highlight the recommendations for developing an energy management plan which takes account of the need for both rest & maintaining physical condition:

1.11 Managing ME/CFS  (p25)

1.11.1 Be aware there is no current treatment or cure (non-pharmacological or pharmacological) for ME/CFS.

Energy management

1.11.2 Discuss with people with ME/CFS the principles of energy management, its role in supporting them to live with their symptoms, the potential benefits and risks and what they should expect. Explain that it:

• is not curative
• is a self-management strategy led by the person themselves but with
• support from a healthcare professional
• can be applied to any type of activity
• helps people understand their energy envelope so they can reduce the risk of overexertion worsening their symptoms
• recognises that each person has a different and fluctuating energy limit, and they are the best judge of their own limits
• can include help from a healthcare professional to recognise when they are approaching their limit (children and young people in particular may find it harder to judge their limits and can overreach them)
• uses a flexible, tailored approach so that activity is never automatically increased but is progressed during periods when symptoms are improved and allows for the need to pull back when symptoms are worse
• is a long-term approach − it can take weeks, months or sometimes even years to reach stabilisation or to increase tolerance or activity
• does not assume that deconditioning is the cause of ME/CFS.

1.11.3 Carry out an assessment to help people with ME/CFS develop an energy management plan with realistic expectations and goals that are meaningful to them.

Discuss and record the person’s:

• cognitive activity
• mobility and other physical activity
• ability to undertake activities of daily living
• emotional demands
• social activity, including relationships
• rest and relaxation (both quality and duration)
• sleep quality and duration
• anything else that is important to the person.

15 1.11.4 Based on the person’s assessment, establish an individual activity pattern within their current energy envelope that minimises their symptoms. For example:

• reduce activity as the first step
• plan periods of rest and activity, and incorporate the need for pre-emptive rest
• alternate and vary between different types of activity and break activities into small chunks.

1.11.5 Agree how often to review the person’s energy management plan with them and revise it if needed.

1.11.6 Advise people with ME/CFS to reduce their activity if increasing it triggers symptoms, or if they have fluctuations in their daily energy levels.

1.11.7 Make self-monitoring of activity as easy as possible by taking advantage of any tools the person already uses, such as an activity tracker, phone heart-rate monitor or diary.

1 1.11.8 Refer people with ME/CFS to a specialist ME/CFS physiotherapy or occupational therapy service if they:

• have had reduced physical activity or mobility levels for a long time
• are ready to progress their physical activity beyond their current activities of daily living would like to incorporate a physical activity programme into the management of their ME/CFS.

People with severe or very severe ME/CFS

1.11.9 Refer people with severe or very severe ME/CFS to a specialist ME/CFS physiotherapy or occupational therapy service for support on developing energy management plans.

1.11.10 Be aware when agreeing energy management plans with people with severe or very severe ME/CFS (and their families and carers as appropriate) that changes in activity should be smaller and any increases (if possible) much slower.

Why the committee made the recommendations (p60)

…Based on their experience, the committee agreed that energy management is one of the most important tools that people with ME/CFS have to support them in living with the symptoms of ME/CFS. Energy management is not a physical activity or exercise programme, although the principles of energy management do apply to physical activity programmes.

The committee listed the components of energy management and what an assessment and plan would include, noting that the key component is understanding the principle of the ‘Energy envelope’. They recommended a detailed assessment that takes into account all areas of current activity and evaluation of rest and sleep, to establish an individual activity pattern within the person’s current energy envelope…

Self-monitoring techniques
Although there was a lack of effectiveness evidence on tools to support people to monitor activity management, the committee considered the qualitative evidence and their experience about benefits in using tools to monitor activity alongside the potential harms of increasing the burden on the person and causing them additional anxiety about their activity levels. The committee decided to recommend that activity recording should be as easy as possible, and people should take advantage of tools they are already using. The committee also decided to make a recommendation for research on self-monitoring management strategies to help determine which techniques are effective

Physical maintenance (p26)

1.11.11 Include physical maintenance in the management plan for people with ME/CFS. Think about including the following:

• joint mobility
• muscle flexibility
• postural and positional support
• muscle strength and endurance
• bone health
• cardiovascular health.

1.11.12 Assess people with severe or very severe ME/CFS at every contact for:

• areas at risk of pressure ulcers (see the NICE guideline on pressure ulcers)
• deep vein thrombosis
• risk of contractures.

1.11.13 Give people and their families and carers (as appropriate) advice and support on how to recognise and prevent possible complications of long term immobility, including contractures, pressure ulcers (see the NICE guideline on pressure ulcers), deep vein thrombosis (see the NICE guideline on venous thromboembolic diseases) and osteoporosis (see the NICE guideline on osteoporosis).

1.11.14 Give families and carers (if appropriate) advice and support on how to help the person with ME/CFS follow their management plan in relation to physical maintenance and mobility. This may include bed mobility, moving from lying to sitting to standing, transferring from bed to chair, use of mobility aids, walking, joint mobility, muscle stretching, muscle strength, balance, and going up and down stairs.

Why the committee made the recommendations (p62)

The committee discussed that people with ME/CFS can have reduced or limited mobility and, in their experience, this can lead to health problems. Physical maintenance should therefore be assessed and included in the person’s management plan.

The committee agreed that people with ME/CFS who are immobile need information to help them recognise and prevent the possible complications of long-term immobility such as bone health and skin problems. In the committee’s experience, families and carers are given limited information about these areas of care (for example, how to transfer someone from a bed to a chair) and it would have helped them.

Physical activity (p27)

1.11.15 Do not advise people with ME/CFS to undertake unstructured exercise that is not part of a supervised programme, such as telling them to go to the gym or exercise more, because this may worsen their symptoms.

1.11.16 Do not offer people with ME/CFS:

• any therapy based on physical activity or exercise as a treatment or cure for ME/CFS
• generalised physical activity or exercise programmes – this includes programmes developed for healthy people or people with other illnesses
• any programme based on fixed incremental increases in physical activity or exercise, for example graded exercise therapy
• structured activity or exercise programmes that are based on deconditioning as the cause of ME/CFS
• therapies derived from osteopathy, life coaching and neurolinguistic programming (for example the Lightning Process).

1.11.17 Only consider a physical activity programme for people with ME/CFS who are ready to progress their physical activity beyond their current activities f daily living, or would like to incorporate physical activity into the management of their ME/CFS.

16 1.11.18 A physical activity programme, if offered, should only be delivered or overseen by a physiotherapist or occupational therapist with training and expertise in ME/CFS.

1.11.19 Tell people about the risks and benefits of a physical activity programme. Explain that some people with ME/CFS have found that physical activity programmes can make their symptoms worsen, for some people it makes no difference and others find them helpful.

1.11.20 If a physical activity programme is agreed with the person with ME/CFS, it should be personalised and should:

•  establish their physical activity baseline at a level that does not worsen their symptoms
• start by reducing the person’s activity to within their energy envelope
• be possible to maintain it successfully before attempting to increase physical ability
•  use flexible increments for people who want to focus on improving their physical abilities while remaining within their energy envelope
• recognise a flare or relapse early and outline how to manage it (see recommendations 1.11.21 and 1.11.22)
• incorporate regular reviews.

1.11.21 Agree with the person how to adjust their physical activity after a flare or relapse. This should include:

• providing access to support from the specialist ME/CFS physiotherapy service
• reducing physical activity within the person’s current energy envelope to stabilise their symptoms
• only once symptoms stabilise and the person feels able to resume physical activity, establishing a new physical activity baseline.

1.11.22 Advise people with ME/CFS after a flare that the time it takes to return to the level of physical activity they had before the flare varies from person to person.

Why the committee made the recommendations (p63)

Because of the harms reported in the qualitative evidence, as well as the committee’s experience of the effects when people exceed the limits of their energy envelope, the committee recommended that people with ME/CFS should not undertake a physical activity or exercise programme unless it is delivered or overseen by a physiotherapist or occupational therapist who has training and expertise in ME/CFS. The committee reinforced there is no therapy based on physical activity or exercise that is effective as a treatment or cure for ME/CFS.

Rest and sleep (p29)

1.11.23 Advise people with ME/CFS:

• on the role of rest in ME/CFS
• that rest periods are part of all management strategies for ME/CFS
• how to introduce rest periods into their daily routine, including how often and for how long, as appropriate for each person
• that relaxation techniques at the beginning of each rest period could be helpful.

Why the committee made the recommendations (p64)

The committee considered that giving advice on planning rest and activity was a fundamental part of any management strategy. In their experience, understanding the role of rest and how to introduce rest periods was important in successful energy management.

There was a lack of evidence for sleep management, but the committee recognised that difficulty with sleep was an area of concern for many people with ME/CFS. The committee discussed making consensus recommendations for providing advice for people with ME/CFS, but they agreed it was hard to be confident in recommending any advice when there was not any evidence and a lack of consensus in the area so they made a recommendation for research on sleep management strategies.