MANAGEMENT

Be aware that ME/CFS symptoms can be managed but there is currently no cure

Health professionals should discuss the principles of energy management, the potential benefits and risks and what people with ME/CFS should expect

Do not offer people with ME/CFS:

  • any therapy based on physical activity or exercise as a cure for ME/CFS
  • that uses fixed incremental increases in physical activity or exercise, for example, graded exercise therapy

Be aware that ME/CFS symptoms can be managed but there is currently no cure (non-pharmacological or pharmacological) for ME/CFS.

Energy and activity management

Health professionals should discuss the principles of energy management, the potential benefits and risks and what people with ME/CFS should expect. Explain that this:

  • is a self-management strategy led by the person themselves with support from a healthcare professional in an ME/CFS specialist team.
  • includes all types of activity (cognitive, physical, emotional, and social) and takes into account overall level of activity.
  • helps people learn to use the amount of energy they have while reducing their risk of post-exertional malaise or worsening their symptoms by exceeding their limit.
  • recognises that each person has a different and fluctuating energy limit and they are experts in judging 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 maintained or adjusted – upwards after a period of stability or downwards 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.

Help people with ME/CFS develop a plan for energy management as part of their care and support plan. Support them to establish realistic expectations and develop goals that are meaningful to them. Discuss and record the following in the plan along with anything else that is important to the person:

  • cognitive activity
  • mobility and other physical activity
  • ability to undertake activities of daily living
  • psychological, emotional, and social demands, including family and sexual relationships
  • rest and relaxation (both quality and duration)
  • sleep quality and duration
  • effect of environmental factors, including sensory stimulation.

Work with the person to establish an individual activity pattern within their current energy limits that minimises their symptoms. For example:

  • agree a sustainable level of activity as the first step, which may mean reducing activity.
  • 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.

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

Advise people with ME/CFS how to manage flare-ups and relapses.

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

Refer people with ME/CFS to a physiotherapist or occupational therapist working in an ME/CFS specialist team if they:

  • have difficulties caused by reduced physical activity or mobility
  • feel ready to progress their physical activity beyond their current activities of daily living or
  • would like to incorporate a physical activity or exercise programme into managing their ME/CFS.

Incorporating physical activity and exercise

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

Only consider a personalised physical activity or exercise programme for people with ME/CFS who:

  • feel ready to progress their physical activity beyond their current activities of daily living, or,
  • would like to incorporate physical activity or exercise into managing their ME/CFS.

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

If a physical activity or exercise programme is offered, it should be overseen by a physiotherapist in an ME/CFS specialist team.

If a person with ME/CFS takes up the offer of a personalised physical activity or exercise programme, agree with them that this involves the following and review it regularly:

  • stablishing their physical activity baseline at a level that does not worsen their symptoms,
  • initially reducing physical activity to be below their baseline level,
  • maintaining this successfully for a period of time before attempting to increase it,
  • making flexible adjustments to their physical activity (up or down as needed) to help them gradually improve their physical abilities while staying within their energy limits,
  • recognising a flare-up or relapse early and outlining how to manage it.

Do not offer people with ME/CFS:

  • any therapy based on physical activity or exercise as a cure for ME/CFS,
  • generalised physical activity or exercise programmes – this includes programmes developed for healthy people or people with other illnesses,
  • any programme that does not follow the approach in this guideline or that uses fixed incremental increases in physical activity or exercise, for example, graded exercise therapy,
  • physical activity or exercise programmes that are based on deconditioning and exercise avoidance theories as perpetuating ME/CFS. 

Symptom management for people with ME/CFS

As with many other NICE guidelines, information on the management of specific symptoms such as orthostatic intolerance, pain, and sleep disturbance is largely by way of referral to another NICE guideline covering this symptom.

Rest and sleep

Advise people with ME/CFS:

  • about 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.

Give people with ME/CFS personalised sleep management advice that includes:

  • explaining the role and effect of sleep disturbance in ME/CFS,
  • identifying the common changes in sleep patterns seen in ME/CFS (such as broken or shallow sleep, altered sleep pattern or hypersomnia),
  • developing good sleep habits,
  • taking into account the need for rest in the day, and balancing this against how the person is sleeping at night,
  • introducing changes to sleep patterns gradually.

If sleep management strategies do not improve the person's sleep and rest, think about the possibility of an underlying sleep disorder or dysfunction and whether to refer to an appropriate specialist.

Review the use of rest periods and sleep management strategies regularly as part of the person's care and support plan.

Physical functioning and mobility

Include strategies to maintain and prevent deterioration of physical functioning and mobility in the care and support plans of people with ME/CFS.

These strategies may need to be carried out in small amounts and spread out throughout the day. Think about including the following:

  • joint mobility,
  • muscle flexibility,
  • balance,
  • postural and positional support,
  • muscle function,
  • bone health,
  • cardiovascular health.

Assess at every contact people with severe or very severe ME/CFS or those with prolonged periods of immobility for:

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

Give people with ME/CFS and their family or carers (as appropriate) information, advice, and support on how to recognise and prevent possible complications of long-term immobility.

Give families and carers information, advice, and support on how to help people with ME/CFS follow their care and support plan in relation to physical functioning and mobility. This may include:

  • bed mobility,
  • moving from lying to sitting to standing,
  • transferring from bed to chair,
  • using mobility aids,
  • walking,
  • joint mobility,
  • muscle stretching,
  • muscle strength,
  • balance,
  • going up and down stairs.

For training to provide care and support, see NICE's guideline on supporting adult carers.

Medicines

Do not offer any medicines or supplements to cure ME/CFS.

Medicines for symptom management

Take into account when prescribing that people with ME/CFS may be more intolerant of drug treatment. Consider:

  • starting medicines at a lower dose than in usual clinical practice
  • gradually increasing the dose if the medicine is tolerated.

Drug treatment for the symptoms associated with ME/CFS for children and young people should only be started under guidance or supervision from a medical professional trained and experienced in paediatric prescribing.

Dietary management and strategies

Emphasise to people with ME/CFS the importance of adequate fluid intake and a well-balanced diet according to the NHS eat well guide.

Work with the person and their family or carers (as appropriate) to find ways of minimising complications caused by gastrointestinal symptoms (such as nausea), changes to appetite, swallowing difficulties, sore throat, or difficulties with buying, preparing and eating food.

Encourage people with ME/CFS who have nausea to keep up adequate fluid intake and advise them to try to eat regularly, taking small amounts often. Explain that not eating or drinking may increase their nausea.

Refer people with ME/CFS for a dietetic assessment by a dietitian with a special interest in ME/CFS if they are:

  • losing weight and at risk of malnutrition
  • gaining weight
  • following a restrictive diet.

Be aware that people with ME/CFS may be at risk of vitamin D deficiency, especially those who are housebound or bedbound. 

Explain to people with ME/CFS that there is not enough evidence to support routinely taking vitamin and mineral supplements as a cure for ME/CFS or for managing symptoms. If they choose to take a vitamin or supplement, explain the potential side effects of taking doses of vitamins and minerals above the recommended daily amount. 

Lightening Process

Do not offer the Lightning Process, or therapies based on it, to people with ME/CFS.

Cognitive behaviour therapy

Cognitive behavioural therapy (CBT) has sometimes been assumed to be a cure for ME/CFS. However, it should only be offered to support people who live with ME/CFS to manage their symptoms, improve their functioning, and reduce the distress associated with having a chronic illness.

Only offer CBT to adults, children, and young people with ME/CFS if, after discussing it, they would like to use it to support them in managing their symptoms.

For children and young people with ME/CFS who would like to use CBT:

  • involve parents or carers (as appropriate) in the therapy wherever possible
  • adapt the therapy to the child or young person's cognitive and emotional stage of development. 

CBT should only be delivered by a healthcare professional with appropriate training and experience in CBT for ME/CFS, and under the clinical supervision of someone with expertise in CBT for ME/CFS.

Explain that CBT for people with ME/CFS:

  • aims to improve their quality of life, including functioning, and reduce the distress associated with having a chronic illness
  • does not assume people have ‘abnormal' illness beliefs and behaviours as an underlying cause of their ME/CFS, but recognises that thoughts, feelings, behaviours, and physiology interact with each other. 
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