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Chronic fatigue syndrome myalgic encephalomyelitis

About

What is covered

This pathway covers the diagnosis, treatment and management of CFS/ME in adults and in children aged 5 years and older, in primary and secondary care and in specialist centres and teams. The pathway is also relevant to the work of occupational health services, social services, educational services and the voluntary sector, although it does not make recommendations for them directly.
The pathway does not cover the management of comorbidities, highly specialised procedures, service provision or models of care.
In this pathway adults are defined as 18 years and older, young people between 12 and 17 years, and children between 5 and 11 years. The age at which care is transferred between child and adult health services varies between 16 and 19 years, depending on the young person and their family's preferences and local circumstances.

Updates

Your responsibility

Guidelines

The recommendations in this interactive flowchart represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals are expected to take these recommendations fully into account, alongside the individual needs, preferences and values of their patients or service users. The application of the recommendations in this interactive flowchart is not mandatory and does 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.
Local commissioners and/or providers have a responsibility to enable the interactive flowchart to be applied when individual health professionals and their patients or service users 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 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.

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.

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.

Short Text

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

What is covered

This pathway covers the diagnosis, treatment and management of CFS/ME in adults and in children aged 5 years and older, in primary and secondary care and in specialist centres and teams. The pathway is also relevant to the work of occupational health services, social services, educational services and the voluntary sector, although it does not make recommendations for them directly.
The pathway does not cover the management of comorbidities, highly specialised procedures, service provision or models of care.
In this pathway adults are defined as 18 years and older, young people between 12 and 17 years, and children between 5 and 11 years. The age at which care is transferred between child and adult health services varies between 16 and 19 years, depending on the young person and their family's preferences and local circumstances.

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 produces information for the public that summarises, in plain English, the recommendations that NICE makes to healthcare and other professionals.
NICE has written information for the public explaining its guidance on each of the following topics.

Pathway information

Your responsibility

Guidelines

The recommendations in this interactive flowchart represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals are expected to take these recommendations fully into account, alongside the individual needs, preferences and values of their patients or service users. The application of the recommendations in this interactive flowchart is not mandatory and does 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.
Local commissioners and/or providers have a responsibility to enable the interactive flowchart to be applied when individual health professionals and their patients or service users 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 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.

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.

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.

Supporting information

The report of the Chief Medical Officer's working group defined the principles of pacing, and these are supported by people with CFS/ME and patient groups. Many of the principles are included in this guideline's recommendations on CBT, GET and activity management. Examples include spreading activities over the week, breaking tasks down into small manageable parts, interspersing activity with rest and setting appropriate, realistic goals for increasing activity.
In this guideline, pacing is defined as energy management, with the aim of maximising cognitive and physical activity, while avoiding setbacks/relapses due to overexertion. The keys to pacing are knowing when to stop and rest by listening to and understanding one's own body, taking a flexible approach and staying within one's limits; different people use different techniques to do this.
However, in practice, the term pacing is used differently by different groups of people. One understanding of its meaning is as adaptive pacing therapy, which is facilitated by healthcare professionals, in which people with CFS/ME use an energy management strategy to monitor and plan their activity, with the aim of balancing rest and activity to avoid exacerbations of fatigue and other symptoms.
Another understanding is that pacing is a self-management strategy, without specific intervention from a healthcare professional. People with CFS/ME generally support this approach.
The degree to which CFS/ME affects a person's functioning and daily life.
  • People with mild CFS/ME are mobile, can care for themselves and can do light domestic tasks with difficulty. Most are still working or in education, but to do this they have probably stopped all leisure and social pursuits. They often take days off, or use the weekend to cope with the rest of the week.
  • People with moderate CFS/ME 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, school or college and need rest periods, often sleeping in the afternoon for 1 or 2 hours. Their sleep at night is generally poor quality and disturbed.
  • People with severe CFS/ME are unable to do any activity for themselves, or can carry out minimal daily tasks only (such as face washing, cleaning teeth). They have severe cognitive difficulties and 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.

Glossary

any task or series of tasks that a person performs. A task may have physical, emotional, cognitive and social components
a person-centred approach to managing a person's symptoms by using activity. It is goal-directed and uses activity analysis and graded activity to enable people to improve, evaluate, restore and/or maintain their function and well-being in self-care, work and leisure
cycles of fluctuating activity levels and symptoms, which are a common feature of CFS/ME. Boom and bust cycles can happen when a person with CFS/ME is overactive when they are feeling better, which may lead to an increase in symptoms and a decrease in function
cognitive behavioural therapy: an evidence-based psychological therapy that is used in many health settings, including cardiac rehabilitation and diabetes management. It is a collaborative treatment approach. When it is used for CFS/ME, the aim is to reduce the levels of symptoms, disability and distress associated with the condition. A course of CBT is usually 12–16 sessions. The use of CBT does not assume or imply that symptoms are psychological or 'made up'
chronic fatigue syndrome/myalgic encephalomyelitis
loss of physical fitness as the general physiological response to, for example, a prolonged period of inactivity
graded exercise therapy: an evidence-based approach to CFS/ME that involves physical assessment, mutually negotiated goal-setting and education. The first step is to set a sustainable baseline of physical activity, then the duration of the activity is gradually increased in a planned way that is tailored to the person. This is followed by an increase in intensity, when the person is able, taking into account their preferences and objectives, current activity and sleep patterns, setbacks/relapses and emotional factors. The objective is to improve the person's CFS/ME symptoms and functioning, aiming towards recovery
short periods when a person is neither sleeping nor engaged in physical or mental activity. Rest periods are a core component of all management approaches for CFS/ME
a service providing expertise in assessing, diagnosing and advising on the clinical management of CFS/ME, including symptom control and specific interventions. Ideally this is provided by a multidisciplinary team, which may include GPs with a special interest in the condition, neurologists, immunologists, specialists in infectious disease, paediatricians, nurses, clinical psychologists, liaison psychiatrists, dietitians, physiotherapists and occupational therapists
there are different stages in the natural course of CFS/ME: acute illness, maintenance or stabilisation, and recovery

Paths in this pathway

Pathway created: March 2014 Last updated: December 2016

© NICE 2017

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