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Quick reference guide


Issue date: August 2007

Chronic fatigue syndrome/myalgic
encephalomyelitis (or encephalopathy)
Diagnosis and management of CFS/ME in adults
and children




NICE clinical guideline 53
Developed by the National Collaborating Centre for Primary Care

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CFS/ME




About this booklet
This is a quick reference guide that summarises the recommendations NICE has made to the NHS in
`Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and
management of CFS/ME in adults and children' (NICE clinical guideline 53).

Who should read this booklet?
This quick reference guide is…

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CFS/ME Contents




Contents
Key priorities for implementation 4

Patient-centred care 5

Presentation, diagnosis and pathway of care 6

General principles of care 9

General management strategies after diagnosis 11

Specialist CFS/ME care 17

Key to terms 21

Implementation 23

Further information 23


Introduction
Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy) (CFS/ME)…

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CFS/ME Key priorities for implementation




Key priorities for implementation

General principles of care
G Shared decision-making between the person with CFS/ME and healthcare professionals should
take place during diagnosis and all phases of care. The healthcare professional should:
­ Acknowledge the reality and impact of the condition and the symptoms.…

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CFS/ME Key priorities for implementation




G Healthcare professionals should proactively advise about fitness for work and education, and
recommend flexible adjustments or adaptations to work or studies to help people with CFS/ME
to return to them when they are ready and fit enough. This may include, with the informed
consent…

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Presentation, diagnosis and pathway
CFS/ME of care




Presentation, diagnosis and pathway of care
CFS/ME is recognised on clinical Person presents with symptoms that
grounds alone. Primary healthcare may indicate CFS/ME (see box 1)
professionals should be able to
identify the characteristic
features of CFS/ME. Do an initial assessment
· Take…

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Presentation, diagnosis and pathway
CFS/ME of care




Box 1 Symptoms that may indicate CFS/ME

Consider the possibility of CFS/ME if a person has:
G fatigue with all of the following features:
­ new or had a specific onset (that is, it is not life long)
­ persistent and/or recurrent
­…

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Presentation, diagnosis and pathway
CFS/ME of care




Box 3 Investigations

These tests should usually be done:
G random blood glucose
G urinalysis for protein, blood and glucose
G serum creatinine
G full blood count
G screening blood tests for gluten sensitivity
G urea and electrolytes
G serum calcium
G liver…

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CFS/ME General principles of care




General principles of care
Shared decision-making
G Share decision-making with the person with CFS/ME during diagnosis and all phases of care.
­ Acknowledge the reality and impact of the condition and the symptoms.
­ Provide information about the range of interventions and management strategies covered…

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CFS/ME General principles of care




Information about CFS/ME
G Give honest, realistic information about CFS/ME at diagnosis. Encourage cautious optimism.
­ Most people with CFS/ME will improve over time and some will recover and be able to resume
work and normal activities.
­ However, others will continue to experience symptoms…

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