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ME (chronic fatigue syndrome)

About

What is covered

This NICE Pathway covers diagnosing and managing ME/CFS in children, young people and adults. It aims to improve awareness and understanding about ME/CFS and when to suspect it, so that people are diagnosed earlier. It includes recommendations on diagnosis, assessment and care planning, safeguarding, access to care and managing ME/CFS and its symptoms.

Updates

Person-centred care

People have the right to be involved in discussions and make informed decisions about their care, as described in your care.
Making decisions using NICE guidelines explains how we use words to show the strength (or certainty) of our recommendations, and has information about prescribing medicines (including off label use), professional guidelines, standards and laws (including on consent and mental capacity), and safeguarding.

Your responsibility

Guidelines

The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian.
Local commissioners and providers of healthcare have a responsibility to enable the guideline to be applied when individual professionals and people using services wish to use it. They should do so in the context of local and national priorities for funding and developing services, and in light of their duties to have due regard to the need to eliminate unlawful discrimination, to advance equality of opportunity and to reduce health inequalities. Nothing in this guideline should be interpreted in a way that would be inconsistent with complying with those duties.
Commissioners and providers have a responsibility to promote an environmentally sustainable health and care system and should assess and reduce the environmental impact of implementing NICE recommendations wherever possible.

Technology appraisals

The recommendations in this interactive flowchart represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, health professionals are expected to take these recommendations fully into account, alongside the individual needs, preferences and values of their patients. The application of the recommendations in this interactive flowchart is at the discretion of health professionals and their individual patients and do not override the responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient, in consultation with the patient and/or their carer or guardian.
Commissioners and/or providers have a responsibility to provide the funding required to enable the recommendations to be applied when individual health professionals and their patients wish to use it, in accordance with the NHS Constitution. They should do so in light of their duties to have due regard to the need to eliminate unlawful discrimination, to advance equality of opportunity and to reduce health inequalities.
Commissioners and providers have a responsibility to promote an environmentally sustainable health and care system and should assess and reduce the environmental impact of implementing NICE recommendations wherever possible.

Medical technologies guidance, diagnostics guidance and interventional procedures guidance

The recommendations in this interactive flowchart represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, healthcare professionals are expected to take these recommendations fully into account. However, the interactive flowchart does not override the individual responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient, in consultation with the patient and/or guardian or carer.
Commissioners and/or providers have a responsibility to implement the recommendations, in their local context, in light of their duties to have due regard to the need to eliminate unlawful discrimination, advance equality of opportunity, and foster good relations. Nothing in this interactive flowchart should be interpreted in a way that would be inconsistent with compliance with those duties.
Commissioners and providers have a responsibility to promote an environmentally sustainable health and care system and should assess and reduce the environmental impact of implementing NICE recommendations wherever possible.

Short Text

Everything NICE has said on assessing, diagnosing and managing myalgic encephalomyelitis/chronic fatigue syndrome in an interactive flowchart

What is covered

This NICE Pathway covers diagnosing and managing ME/CFS in children, young people and adults. It aims to improve awareness and understanding about ME/CFS and when to suspect it, so that people are diagnosed earlier. It includes recommendations on diagnosis, assessment and care planning, safeguarding, access to care and managing ME/CFS and its symptoms.

Sources

NICE guidance and other sources used to create this interactive flowchart.

Quality standards

Quality statements

Effective interventions library

Effective interventions library

Successful effective interventions library details

Implementation

NICE has produced resources to help implement its guidance on:

Information for the public

NICE has written information for the public on each of the following topics.

Pathway information

Person-centred care

People have the right to be involved in discussions and make informed decisions about their care, as described in your care.
Making decisions using NICE guidelines explains how we use words to show the strength (or certainty) of our recommendations, and has information about prescribing medicines (including off label use), professional guidelines, standards and laws (including on consent and mental capacity), and safeguarding.

Your responsibility

Guidelines

The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian.
Local commissioners and providers of healthcare have a responsibility to enable the guideline to be applied when individual professionals and people using services wish to use it. They should do so in the context of local and national priorities for funding and developing services, and in light of their duties to have due regard to the need to eliminate unlawful discrimination, to advance equality of opportunity and to reduce health inequalities. Nothing in this guideline should be interpreted in a way that would be inconsistent with complying with those duties.
Commissioners and providers have a responsibility to promote an environmentally sustainable health and care system and should assess and reduce the environmental impact of implementing NICE recommendations wherever possible.

Technology appraisals

The recommendations in this interactive flowchart represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, health professionals are expected to take these recommendations fully into account, alongside the individual needs, preferences and values of their patients. The application of the recommendations in this interactive flowchart is at the discretion of health professionals and their individual patients and do not override the responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient, in consultation with the patient and/or their carer or guardian.
Commissioners and/or providers have a responsibility to provide the funding required to enable the recommendations to be applied when individual health professionals and their patients wish to use it, in accordance with the NHS Constitution. They should do so in light of their duties to have due regard to the need to eliminate unlawful discrimination, to advance equality of opportunity and to reduce health inequalities.
Commissioners and providers have a responsibility to promote an environmentally sustainable health and care system and should assess and reduce the environmental impact of implementing NICE recommendations wherever possible.

Medical technologies guidance, diagnostics guidance and interventional procedures guidance

The recommendations in this interactive flowchart represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, healthcare professionals are expected to take these recommendations fully into account. However, the interactive flowchart does not override the individual responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient, in consultation with the patient and/or guardian or carer.
Commissioners and/or providers have a responsibility to implement the recommendations, in their local context, in light of their duties to have due regard to the need to eliminate unlawful discrimination, advance equality of opportunity, and foster good relations. Nothing in this interactive flowchart should be interpreted in a way that would be inconsistent with compliance with those duties.
Commissioners and providers have a responsibility to promote an environmentally sustainable health and care system and should assess and reduce the environmental impact of implementing NICE recommendations wherever possible.

Supporting information

Cognitive behavioural therapy

The committee wanted to highlight that 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.

Fatigue

Fatigue in ME/CFS typically has the following components:
  • feeling flu-like, especially in the early days of the illness
  • restlessness or feeling 'wired but tired'
  • low energy or a lack of physical energy to start or finish activities of daily living and the sensation of being 'physically drained'
  • cognitive fatigue that worsens existing difficulties
  • rapid loss of muscle strength or stamina after starting an activity, causing for example, sudden weakness, clumsiness, lack of coordination, and being unable to repeat physical effort consistently.

Flare-up

A worsening of symptoms, more than would be accounted for by normal day-to-day variation, that affects the person's ability to perform their usual activities. Flare-ups may occur spontaneously or be triggered by another illness, overexertion or other triggers. Flare-ups usually occur as part of post-exertional malaise but it is possible for other symptoms, such as pain, to flare-up without post-exertional malaise. The worsening of symptoms is transient and flare-ups typically resolve after a few days, either spontaneously or in response to temporary changes in energy management or a change in treatment. A relapse lasts longer than a flare-up.

Flare-up

A worsening of symptoms, more than would be accounted for by normal day-to-day variation, that affects the person's ability to perform their usual activities. Flare-ups may occur spontaneously or be triggered by another illness, overexertion or other triggers. Flare-ups usually occur as part of post-exertional malaise but it is possible for other symptoms, such as pain, to flare-up without post-exertional malaise. The worsening of symptoms is transient and flare-ups typically resolve after a few days, either spontaneously or in response to temporary changes in energy management or a change in treatment. A relapse lasts longer than a flare-up.

Graded exercise therapy

Graded exercise therapy is a term used in varying ways by different services supporting people with ME/CFS.
In this guidance, graded exercise therapy is defined as first establishing an individual's baseline of achievable exercise or physical activity, then making fixed incremental increases in the time spent being physically active. This definition of graded exercise therapy reflects the descriptions given in the evidence that was reviewed, and it is this approach that the guideline says should not be undertaken.

ME/CFS specialist team

Specialist teams consist of a range of healthcare professionals with training and experience in assessing, diagnosing, treating and managing ME/CFS. They commonly have medically trained clinicians from a variety of specialisms (including rheumatology, rehabilitation medicine, endocrinology, infectious diseases, neurology, immunology, general practice and paediatrics) as well as access to other healthcare professionals specialising in ME/CFS. These may include physiotherapists, exercise physiologists, occupational therapists, dietitians, and clinical or counselling psychologists.
Children and young people are likely to be cared for under local or regional paediatric teams that have experience of working with children and young people with ME/CFS in collaboration with ME/CFS specialist centres.

Mild ME/CFS

People with mild ME/CFS care for themselves and do some light domestic tasks (sometimes needing support) but may have difficulties with mobility. Most are still working or in education, but to do this they have probably stopped all leisure and social pursuits. They often have reduced hours, take days off and use the weekend to cope with the rest of the week.

Moderate ME/CFS

People with moderate ME/CFS have reduced mobility and are restricted in all activities of daily living, although they may have peaks and troughs in their level of symptoms and ability to do activities. They have usually stopped work or education, and need rest periods, often resting in the afternoon for 1 or 2 hours. Their sleep at night is generally poor quality and disturbed.

Orthostatic intolerance

A clinical condition in which symptoms such as light-headedness, near-fainting or fainting, impaired concentration, headaches, dimming or blurring of vision, forceful beating of the heart, palpitations, tremulousness and chest pain occur or worsen on standing up and are improved (although not necessarily resolved) by sitting or lying down. Orthostatic intolerance may include POTS, which is a significant rise in pulse rate when moving from lying to standing, and postural hypotension, which is a significant fall in blood pressure when moving from lying to standing. People with severe orthostatic intolerance many find they are unable to sit up for any length of time.

Paediatric ME/CFS specialist team

Specialist teams consist of a range of healthcare professionals with training and experience in assessing, diagnosing, treating and managing ME/CFS. They commonly have medically trained clinicians from a variety of specialisms (including rheumatology, rehabilitation medicine, endocrinology, infectious diseases, neurology, immunology, general practice and paediatrics) as well as access to other healthcare professionals specialising in ME/CFS. These may include physiotherapists, exercise physiologists, occupational therapists, dietitians, and clinical or counselling psychologists.
Children and young people are likely to be cared for under local or regional paediatric teams that have experience of working with children and young people with ME/CFS in collaboration with ME/CFS specialist centres.

Physical activity

Any bodily movement produced by skeletal muscles that results in energy expenditure. It should not be confused with exercise. Physical activity in daily life can be categorised into occupational, sports, conditioning, household, or other activities, and can be done during leisure time, to get around or as part of a person's work. See World Health Organization advice on physical activity. For many people physical activity has a health benefit but in people with ME/CFS physical activity may make their symptoms worsen.

Physical functioning and mobility

The process of incorporating into daily activities a level of movement that helps to maintain joint and muscle flexibility without worsening symptoms of ME/CFS. This aims to support people to have as much independence as possible in their activities, ranging from personal hygiene to activities of daily living, working and social interaction. Such movement is undertaken within the person's energy limits and avoids pushing through their boundaries of tolerance.

Post-exertional malaise

The worsening of symptoms that can follow minimal cognitive, physical, emotional or social activity, or activity that could previously be tolerated. Symptoms typically worsen 12 to 48 hours after activity and can last for days or even weeks, sometimes leading to a relapse. Post-exertional malaise may also be referred to as post-exertional symptom exacerbation.

Relapse

A sustained and marked exacerbation of symptoms lasting longer than a flare-up and needing a substantial and sustained adjustment to the person's energy management. It may not be clear in the early stages of a symptom exacerbation whether it is a flare-up or a relapse. Relapses can lead to a long-term reduction in the person's energy limits.

Relapse

A sustained and marked exacerbation of symptoms lasting longer than a flare-up and needing a substantial and sustained adjustment to the person's energy management. It may not be clear in the early stages of a symptom exacerbation whether it is a flare-up or a relapse. Relapses can lead to a long-term reduction in the person's energy limits.

Severe ME/CFS

People with severe ME/CFS are unable to do any activity for themselves or can carry out minimal daily tasks only (such as face washing or cleaning teeth). They have severe cognitive difficulties and may depend on a wheelchair for mobility. They are often unable to leave the house or have a severe and prolonged after-effect if they do so. They may also spend most of their time in bed and are often extremely sensitive to light and noise.

Very severe ME/CFS

People with very severe ME/CFS are in bed all day and dependent on care. They need help with personal hygiene and eating and are very sensitive to sensory stimuli. Some people may not be able to swallow and may need to be tube fed.

Symptoms for suspecting ME/CFS

All of these symptoms should be present:
  • Debilitating fatigue (see below) that is worsened by activity, is not caused by excessive cognitive, physical, emotional or social exertion and is not significantly relieved by rest.
  • Post-exertional malaise (see below) after activity in which the worsening of symptoms:
    • is often delayed in onset by hours or days
    • is disproportionate to the activity
    • has a prolonged recovery time that may last hours, days, weeks or longer.
  • Unrefreshing sleep and sleep disturbance (or both), which may include:
    • feeling exhausted, feeling flu-like and stiff on waking
    • broken or shallow sleep, altered sleep pattern or hypersomnia.
  • Cognitive difficulties (sometimes described as 'brain fog'), which may include problems finding words or numbers, difficulty in speaking, slowed responsiveness, short-term memory problems, and difficulty concentrating or multitasking.
Fatigue in ME/CFS typically has the following components:
  • feeling flu-like, especially in the early days of the illness
  • restlessness or feeling 'wired but tired'
  • low energy or a lack of physical energy to start or finish activities of daily living and the sensation of being 'physically drained'
  • cognitive fatigue that worsens existing difficulties
  • rapid loss of muscle strength or stamina after starting an activity, causing for example, sudden weakness, clumsiness, lack of coordination, and being unable to repeat physical effort consistently.
Post-exertional malaise is the worsening of symptoms that can follow minimal cognitive, physical, emotional or social activity, or activity that could previously be tolerated. Symptoms typically worsen 12 to 48 hours after activity and can last for days or even weeks, sometimes leading to a relapse. Post-exertional malaise may also be referred to as post-exertional symptom exacerbation.

Therapy blueprint

This summarises the therapy and provides a basis for future independent self-management. The blueprint may include the therapy formulation, strategies that have been helpful, 'warning signs' and triggers of flare-ups and how to manage them, and goals for the future. It is important that the therapy blueprint is led by the person themselves and is in their own words, supported by guidance from the therapist.

Glossary

(any effort that uses energy, which includes cognitive, emotional and social activity as well as physical activity; different activities combine and interact to cause a cumulative impact for the person)
(in this guidance the role of an advocate is to support a vulnerable or disadvantaged person with ME/CFS and ensure that their rights are being upheld in a health and social care context: they are chosen by the person with ME/CFS and could be a family member, carer, friend or an independent advocate; they make sure that the person is heard)
(in this guidance the role of an advocate is to support a vulnerable or disadvantaged person with ME/CFS and ensure that their rights are being upheld in a health and social care context: they are chosen by the person with ME/CFS and could be a family member, carer, friend or an independent advocate; they make sure that the person is heard)
(the personalised collaborative care and support plan is developed by the ME/CFS specialist team based on a holistic assessment; it is the basis for other assessments and plans in areas such as social care, energy management, physical activity, physical functioning and mobility, CBT and dietary management)
(the personalised collaborative care and support plan is developed by the ME/CFS specialist team based on a holistic assessment; it is the basis for other assessments and plans in areas such as social care, energy management, physical activity, physical functioning and mobility, CBT and dietary management)
(in this guidance, a carer refers to someone who provides unpaid care and support to a family member, partner or friend with ME/CFS; this is distinct from care workers who are employed to provide support)
chronic fatigue syndrome
(the amount of energy a person has to do all activities without triggering an increase or worsening of their symptoms)
(the amount of energy a person has to do all activities without triggering an increase or worsening of their symptoms)
(a self-management strategy that involves person with ME/CFS managing their activities to stay within their energy limit, with support from a healthcare professional)
(planned, repetitive, and purposeful activity focused on improvement or maintenance of 1 or more components of physical fitness; exercise is a subcategory of physical activity)
myalgic encephalomyelitis (or encephalopathy)
postural orthostatic tachycardia syndrome
(this refers to a healthcare professional who is not working in a ME/CFS specialist team service but has knowledge and experience in this area)
(means sleep that is non-restorative, even after a full night's sleep, people do not feel refreshed; people with ME/CFS often report waking up exhausted and feeling as if they have not slept at all, no matter how long they were asleep)

Paths in this pathway

Pathway created: March 2014 Last updated: October 2021

© NICE 2021. All rights reserved. Subject to Notice of rights.

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