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Issue date: August 2007 
Chronic fatigue syndrome/
myalgic encephalomyelitis 
(or encephalopathy) 

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 

 
NICE clinical guideline 53 
Chronic fatigue syndrome/myalgic encephalomyelitis (or 
encephalopathy): diagnosis and management of CFS/ME in adults and 
children 
 
Ordering information 
You can download the following documents from www.nice.org.uk/CG053   
•  The NICE guideline (this document) – all the recommendations.  
•  A quick reference guide – a summary of the recommendations for 
healthcare professionals. 
•  ‘Understanding NICE guidance’ – information for patients and carers. 
•  The full guideline – all the recommendations, details of how they were 
developed, and reviews of the evidence they were based on. 
For printed copies of the quick reference guide or ‘Understanding NICE 
guidance’, phone the NHS Response Line on 0870 1555 455 and quote: 
•  N1302 (quick reference guide) 
•  N1303 (‘Understanding NICE guidance’). 
 
.  
NICE clinical guidelines are recommendations about the treatment and care of 
people with specific diseases and conditions in the NHS in England and 
Wales 
This guidance represents the view of the Institute, which was arrived at after 
careful consideration of the evidence available. Healthcare professionals are 
expected to take it fully into account when exercising their clinical judgement. 
The guidance does not, however, 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 and informed by the summary of product characteristics of any drugs 
they are considering. 
 
National Institute for Health and Clinical Excellence 
MidCity Place 
71 High Holborn 
London  
WC1V 6NA 
 
www.nice.org.uk 
 
 
© National Institute for Health and Clinical Excellence, August 2007. All rights reserved. This 
material may be freely reproduced for educational and not-for-profit purposes. No 
reproduction by or for commercial organisations, or for commercial purposes, is allowed 
without the express written permission of the Institute. 
 

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Contents 
Introduction ......................................................................................................4 
Patient-centred care.........................................................................................6 
Key priorities for implementation......................................................................8 

Guidance ................................................................................................ 11 
1.1 
General principles of care................................................................ 11 
1.2 
Presentation .................................................................................... 14 
1.3 
Diagnosis......................................................................................... 17 
1.4 
General management strategies after diagnosis ............................. 18 
1.5 
Referral to specialist CFS/ME care.................................................. 25 
1.6 
Specialist CFS/ME care................................................................... 25 
1.7 
Management of setbacks/relapses .................................................. 33 
1.8 
Review and ongoing management .................................................. 35 
1.9 
Key principles of care for people with severe CFS/ME .................... 35 

Notes on the scope of the guidance ....................................................... 38 

Implementation ....................................................................................... 38 

Research recommendations ................................................................... 39 

Other versions of this guideline............................................................... 41 

Related NICE guidance .......................................................................... 42 

Updating the guideline ............................................................................ 43 
Appendix A: The Guideline Development Group ........................................... 44 
Appendix B: The Guideline Review Panel ..................................................... 47 
Appendix C: The algorithms........................................................................... 48 
Appendix D: Definitions used in this guideline ............................................... 49 
 

  
Introduction  
Chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (or 
encephalopathy) (ME) is a relatively common illness. The physical symptoms 
can be as disabling as multiple sclerosis, systemic lupus erythematosus, 
rheumatoid arthritis, congestive heart failure and other chronic conditions. 
CFS/ME places a substantial burden on people with the condition, their 
families and carers, and hence on society. 
There is a lack of epidemiological data for the UK, so population estimates are 
based on extrapolations from other countries. Overall, evidence suggests a 
population prevalence of at least 0.2–0.4%. This means that a general 
practice with 10,000 patients is likely to include up to 40 people with CFS/ME; 
half of these people will need input from specialist services.  
Many different potential aetiologies for CFS/ME – including neurological, 
endocrine, immunological, genetic, psychiatric and infectious – have been 
investigated, but the diverse nature of the symptoms can not yet be fully 
explained. The World Health Organization (WHO) classifies CFS/ME as a 
neurological illness (G93.3), and some members of the Guideline 
Development Group (GDG) felt that, until research further identifies its 
aetiology and pathogenesis, the guideline should recognise this classification. 
Others felt that to do so did not reflect the nature of the illness, and risked 
restricting research into the causes, mechanisms and future treatments for 
CFS/ME. 
CFS/ME comprises a range of symptoms that includes fatigue, malaise, 
headaches, sleep disturbances, difficulties with concentration and muscle 
pain. A person’s symptoms may fluctuate in intensity and severity, and there 
is also great variability in the symptoms different people experience. CFS/ME 
is characterised by debilitating fatigue that is unlike everyday fatigue and can 
be triggered by minimal activity. This raises especially complex issues in 
adults and children with severe CFS/ME. 
NICE clinical guideline 53 – Chronic fatigue syndrome/myalgic 
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encephalomyelitis (or encephalopathy) 

CFS/ME, like other chronic conditions for which the causes and disease 
processes are not yet fully understood, poses significant problems for 
healthcare professionals. It can cause profound, prolonged illness and 
disability, which has a substantial impact on people with CFS/ME and their 
carers. Uncertainties about diagnosis and management, and a lack of clinical 
guidance for healthcare professionals, have exacerbated this impact.  
The recommendations in this guideline emphasise the importance of early 
symptom management, making an accurate diagnosis, ensuring that 
significant clinical features are investigated, and working in partnership with 
people with CFS/ME to manage the condition. Different combinations of 
approaches will be helpful for different people. 
Definitions used in this guideline are provided in Appendix D on pages 49–52 
and can be viewed individually by clicking on hyperlinked words in the text. 

 
NICE clinical guideline 53 – Chronic fatigue syndrome/myalgic 
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encephalomyelitis (or encephalopathy) 

link to page 6 Patient-centred care 
This guideline offers best practice advice on the care of people with CFS/ME.  
Treatment and care should take into account patients’ individual needs and 
preferences.  
People with CFS/ME should have the opportunity to make informed decisions 
about their care and treatment. For children and young people with CFS/ME, 
this will depend on their age and capacity to make decisions. It is good 
practice for healthcare professionals to involve the young person’s parent(s) 
or guardian(s) in the decision-making process.  
If patients do not have the capacity to make decisions, healthcare 
professionals should follow the Department of Health guidelines – ‘Reference 
guide to consent for examination or treatment’ (2001) (available from 
www.dh.gov.uk). Since April 2007, it has been necessary for healthcare 
professionals to follow a code of practice accompanying the Mental Capacity 
Act (summary available from www.dca.gov.uk/menincap/bill-summary.htm). 
Good communication between healthcare professionals and people with 
CFS/ME is essential. All healthcare professionals should have a high 
standard1 of consultation and communication skills and use a consulting style 
that enables people with CFS/ME (and their families and/or carers as 
appropriate) to participate as partners in all decisions about their healthcare, 
taking fully into account their socioeconomic status, culture, cognitive ability 
and any specific needs. 
Communication should be supported by evidence-based written information 
tailored to the person’s needs. Treatment and care, and the information 
people with CFS/ME (and their families and carers as appropriate) are given 
about it, should be culturally appropriate. It should also be accessible to 
people with additional needs such as physical, sensory or learning disabilities, 
and to people who do not speak or read English. 
                                                 
1 The standards detailed in the video workbook ‘Summative assessment for general practice training: 
assessment of consulting skills – the MRCGP/summative assessment single route’ are a good example 
of standards for consulting skills. 
NICE clinical guideline 53 – Chronic fatigue syndrome/myalgic 
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encephalomyelitis (or encephalopathy) 

Carers and relatives should have the opportunity to be involved in decisions 
about the patient’s care and treatment, unless the patient specifically excludes 
them. 
Carers and relatives should also be given the information and support they 
need.  
Adult and paediatric healthcare teams should work jointly to provide 
assessment and services to young people with CFS/ME. As part of the 
transition process from paediatric to adult services, diagnosis and 
management should be reviewed and, throughout, there should be clarity 
about who is the lead clinician to ensure continuity of care.  
Transitional care should be planned and managed according to the best 
practice guidance described in ‘Transition: getting it right for young people’ 
(available from www.dh.gov.uk). 
NICE clinical guideline 53 – Chronic fatigue syndrome/myalgic 
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encephalomyelitis (or encephalopathy) 

link to page 49 link to page 8  
Key priorities for implementation 
General principles of care 
•  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. 
−  Provide information about the range of interventions and management 
strategies as detailed in this guideline (such as the benefits, risks and 
likely side effects). 
−  Provide information on the possible causes, nature and course of 
CFS/ME. 
−  Provide information on returning to work or education. 
−  Take account of the person’s age (particularly for children younger than 
12 years), the severity of their CFS/ME, their preferences and 
experiences, and the outcome of previous treatment(s). 
−  Offer information about local and national self-help groups and support 
groups for people with CFS/ME and their carers (see also the NHS 
Expert Patients Programme2).  
•  Healthcare professionals should be aware that – like all people receiving 
care in the NHS – people with CFS/ME have the right to refuse or withdraw 
from any component of their care plan without this affecting other aspects 
of their care, or future choices about care.  
•  To facilitate effective management of the condition, healthcare 
professionals should aim to establish a supportive and collaborative 
relationship with the person with CFS/ME and their carers. Engagement 
with the family is particularly important for children and young people, and 
for people with severe CFS/ME.  
•  Healthcare professionals should provide diagnostic and therapeutic options 
to people with CFS/ME in ways that are suitable for the individual person. 
                                                 
2 For more information see www.expertpatients.nhs.uk or www.eppwales.org 
NICE clinical guideline 53 – Chronic fatigue syndrome/myalgic 
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encephalomyelitis (or encephalopathy) 

This may include providing domiciliary services (including specialist 
assessment) or using methods such as telephone or email.  
 
Diagnosis and initial management 
•  Advice on symptom management should not be delayed until a diagnosis is 
established. This advice should be tailored to the specific symptoms the 
person has and be aimed at minimising their impact on daily life and 
activities.  
•  A diagnosis should be made after other possible diagnoses have been 
excluded and the symptoms have persisted for: 
−  4 months in an adult  
−  3 months in a child or young person; the diagnosis should be made or 
confirmed by a paediatrician.  
•  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 of the 
person with CFS/ME, liaising with employers, education providers and 
support services, such as:  
−  occupational health services 
−  disability services through Jobcentre Plus  
−  schools, home education services and local education authorities  
−  disability advisers in universities and colleges. 
 
Specialist CFS/ME care 
•  Any decision to refer a person to specialist CFS/ME care should be based 
on their needs, the type, duration, complexity and severity of their 
symptoms, and the presence of comorbidities. The decision should be 
made jointly by the person with CFS/ME and the healthcare professional.  
•  An individualised, person-centred programme should be offered to people 
with CFS/ME. The objectives of the programme should be to:  
−  sustain or gradually extend, if possible, the person’s physical, emotional 
and cognitive capacity  
NICE clinical guideline 53 – Chronic fatigue syndrome/myalgic 
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encephalomyelitis (or encephalopathy) 

−  manage the physical and emotional impact of their symptoms.  
• Cognitive behavioural therapy and/or graded exercise therapy should be 
offered to people with mild or moderate CFS/ME and provided to those who 
choose these approaches, because currently these are the interventions for 
which there is the clearest research evidence of benefit.  
NICE clinical guideline 53 – Chronic fatigue syndrome/myalgic 
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encephalomyelitis (or encephalopathy) 

link to page 51 link to page 11 1 Guidance 
The following guidance is based on the best available evidence. The full 
guideline (‘CFS/ME: diagnosis and management of adults and children’) gives 
details of the methods and the evidence used to develop the guidance (see 
section 5 for details). 
1.1 
General principles of care  
1.1.1 Shared 
decision-making 
1.1.1.1 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. 
•  Provide information about the range of interventions and 
management strategies as detailed in this guideline (such as the 
benefits, risks and likely side effects). 
•  Provide information on the possible causes, nature and course 
of CFS/ME. 
•  Provide information on returning to work or education. 
•  Take account of the person’s age (particularly for children 
younger than 12 years), the severity of their CFS/ME, their 
preferences and experiences, and the outcome of previous 
treatment(s). 
•  Offer information about local and national self-help groups and 
support groups for people with CFS/ME and their carers (see 
also the NHS Expert Patients Programme3).  
                                                 
3 For more information, see www.expertpatients.nhs.uk or Wales www.eppwales.org 
NICE clinical guideline 53 – Chronic fatigue syndrome/myalgic 
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encephalomyelitis (or encephalopathy) 

link to page 49 link to page 49 link to page 12 1.1.1.2 
When providing care for children and young people, healthcare 
professionals should follow best practice as described in the 
national service frameworks for children for England or for Wales4.  
1.1.1.3 Healthcare 
professionals 
should be aware that – like all people 
receiving care in the NHS – people with CFS/ME have the right to 
refuse or withdraw from any component of their care plan without 
this affecting other aspects of their care, or future choices about 
care.  
1.1.1.4 Healthcare 
professionals 
should recognise that the person with 
CFS/ME is in charge of the aims and goals of the overall 
management plan. The pace of progression throughout the course 
of any intervention should be mutually agreed.  
1.1.1.5 Healthcare 
professionals 
should provide diagnostic and therapeutic 
options to people with CFS/ME in ways that are suitable for the 
individual person. This may include providing domiciliary services 
(including specialist assessment) or using methods such as 
telephone or email.  
1.1.2 
Support and information 
1.1.2.1 
To facilitate effective management of the condition, healthcare 
professionals should aim to establish a supportive and collaborative 
relationship with the person with CFS/ME and their carers. 
Engagement with the family is particularly important for children 
and young people, and for people with severe CFS/ME.  
1.1.2.2 
A named healthcare professional should be responsible for 
coordinating care for each person with CFS/ME.  
1.1.2.3 Healthcare 
professionals 
should provide accurate information to 
people at all stages of CFS/ME, starting from when a diagnosis is 
first being considered. This should be tailored to the person’s 
                                                 
4 Available from www.dh.gov.uk (England; this framework includes an exemplar pathway for CFS/ME) 
and www.wales.nhs.uk (Wales). 
NICE clinical guideline 53 – Chronic fatigue syndrome/myalgic 
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encephalomyelitis (or encephalopathy) 

link to page 51 circumstances, including the stage and duration of the condition, 
symptoms experienced and relevant personal and social factors.  
1.1.2.4 
Information should be available in a variety of formats if appropriate 
(printed copy, electronic and audio), which people with CFS/ME 
and their carers can refer to at home and in the clinical setting.  
1.1.3 
Provision of care 
1.1.3.1 Healthcare 
professionals 
responsible for caring for people with 
CFS/ME should have appropriate skills and expertise in the 
condition.  
1.1.3.2 
Every person diagnosed with CFS/ME should be offered: 
•  information about the illness (see section 1.1.2) 
•  acceptance and understanding 
•  assistance negotiating the healthcare, benefits and social care 
systems 
•  assistance with occupational activities including work and 
education if appropriate (see section 1.4.5).  
1.1.3.3 
An individualised management plan should be developed with the 
person with CFS/ME, and their carers if appropriate. The plan 
should be reviewed and changes documented at each contact. It 
should include: 
•  relevant symptoms and history  
•  plans for care and treatment, including managing 
setbacks/relapses 
•  information and support needs 
•  any education, training or employment support needs  
•  details of the healthcare professionals involved in care and their 
contact details.  
NICE clinical guideline 53 – Chronic fatigue syndrome/myalgic 
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encephalomyelitis (or encephalopathy) 

link to page 49 1.2 Presentation 
1.2.1 Presenting 
symptoms suspicious of CFS/ME 
1.2.1.1 
CFS/ME is recognised on clinical grounds alone. Primary 
healthcare professionals should be familiar with and be able to 
identify the characteristic features of CFS/ME.  
1.2.1.2 Healthcare 
professionals 
should consider the possibility of CFS/ME 
if a person has: 
•  fatigue with all of the following features:  
−  new or had a specific onset (that is, it is not lifelong) 
−  persistent and/or recurrent 
−  unexplained by other conditions 
−  has resulted in a substantial reduction in activity level 
−  characterised by post-exertional malaise and/or fatigue 
(typically delayed, for example by at least 24 hours, with slow 
recovery over several days)  
and 
•  one or more of the following symptoms: 
−  difficulty with sleeping, such as insomnia, hypersomnia, 
unrefreshing sleep, a disturbed sleep–wake cycle 
−  muscle and/or joint pain that is multi-site and without evidence 
of inflammation 
− headaches  
−  painful lymph nodes without pathological enlargement 
− sore throat 
−  cognitive dysfunction, such as difficulty thinking, inability to 
concentrate, impairment of short-term memory, and difficulties 
with word-finding, planning/organising thoughts and 
information processing 
−  physical or mental exertion makes symptoms worse  
−  general malaise or ‘flu-like’ symptoms 
NICE clinical guideline 53 – Chronic fatigue syndrome/myalgic 
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encephalomyelitis (or encephalopathy) 

link to page 15 −  dizziness and/or nausea 
−  palpitations in the absence of identified cardiac pathology.  
1.2.1.3 Healthcare 
professionals 
should be aware that the symptoms of 
CFS/ME fluctuate in severity and may change in nature over time.  
1.2.1.4 
Signs and symptoms that can be caused by other serious 
conditions (‘red flags’) should not be attributed to CFS/ME without 
consideration of alternative diagnoses or comorbidities. In 
particular, the following features should be investigated5:  
•  localising/focal neurological signs 
•  signs and symptoms of inflammatory arthritis or connective 
tissue disease 
•  signs and symptoms of cardiorespiratory disease  
•  significant weight loss 
• sleep apnoea 
• clinically significant lymphadenopathy.  
1.2.2 
History, examinations and investigations 
1.2.2.1 
A full history (including exacerbating and alleviating factors, sleep 
disturbance and intercurrent stressors) should be taken, and a 
physical examination and assessment of psychological wellbeing 
should be carried out.  
1.2.2.2 
A child or young person who has symptoms suggestive of CFS/ME 
should be referred to a paediatrician for assessment to exclude 
other diagnoses within 6 weeks of presentation.  
1.2.2.3 
The following tests should usually be done: 
•  urinalysis for protein, blood and glucose 
•  full blood count 
•  urea and electrolytes 
                                                 
5 Follow 'Referral guidelines for suspected cancer' (NICE clinical guideline 27) or other NICE guidelines 
as the symptoms indicate. See www.nice.org.uk for details. 
NICE clinical guideline 53 – Chronic fatigue syndrome/myalgic 
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encephalomyelitis (or encephalopathy) 

• liver function 
• thyroid function 
• erythrocyte sedimentation rate or plasma viscosity 
• C-reactive protein 
•  random blood glucose 
• serum creatinine 
•  screening blood tests for gluten sensitivity 
• serum calcium 
• creatine kinase 
•  assessment of serum ferritin levels (children and young people 
only). 
Clinical judgement should be used when deciding on additional  
investigations to exclude other diagnoses.  
1.2.2.4 
Tests for serum ferritin in adults should not be carried out unless a 
full blood count and other haematological indices suggest iron 
deficiency.  
1.2.2.5 
Tests for vitamin B12 deficiency and folate levels should not be 
carried out unless a full blood count and mean cell volume show a 
macrocytosis.  
1.2.2.6 
The following tests should not be done routinely to aid diagnosis: 
•  the head-up tilt test 
•  auditory brainstem responses 
•  electrodermal conductivity.  
 
1.2.2.7 
Serological testing should not be carried out unless the history is 
indicative of an infection. Depending on the history, tests for the 
following infections may be appropriate:  
•  chronic bacterial infections, such as borreliosis 
•  chronic viral infections, such as HIV or hepatitis B or C 
NICE clinical guideline 53 – Chronic fatigue syndrome/myalgic 
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encephalomyelitis (or encephalopathy) 

•  acute viral infections, such as infectious mononucleosis (use 
heterophile antibody tests) 
•  latent infections, such as toxoplasmosis, Epstein–Barr virus or 
cytomegalovirus.  
1.2.3 
Advice on symptom management before diagnosis 
1.2.3.1 Advice 
on 
symptom 
management should not be delayed until a 
diagnosis is established. This advice should be tailored to the 
specific symptoms the person has, and be aimed at minimising 
their impact on daily life and activities.  
1.2.4 
Re-assessment before diagnosis 
1.2.4.1 
If symptoms do not resolve as expected in a person initially 
suspected of having a self-limiting condition, primary healthcare 
professionals should listen carefully to the person’s and their family 
and/or carers’ concerns and be prepared to reassess their initial 
opinion.  
1.2.4.2 
If considering the possibility of CFS/ME or another serious 
alternative condition, primary healthcare professionals should 
consider discussion with a specialist if there is uncertainty about 
the interpretation of signs and symptoms and whether a referral is 
needed. This may also enable the primary healthcare professional 
to communicate their concerns and a sense of urgency to 
secondary healthcare professionals if symptoms are unusual.  
1.3 Diagnosis 
1.3.1 Making 

diagnosis 
1.3.1.1 
A diagnosis should be made after other possible diagnoses have 
been excluded and the symptoms have persisted for: 
•  4 months in an adult  
•  3 months in a child or young person; the diagnosis should be 
made or confirmed by a paediatrician.  
NICE clinical guideline 53 – Chronic fatigue syndrome/myalgic 
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encephalomyelitis (or encephalopathy) 

1.3.1.2 
When a diagnosis of CFS/ME is made, healthcare professionals 
should provide honest, realistic information about CFS/ME and 
encourage cautious optimism.  
•  Most people with CFS/ME will improve over time and some 
people will recover and be able to resume work and normal 
activities.  
•  However, others will continue to experience symptoms or 
relapse and some people with severe CFS/ME may remain 
housebound. 
•  The prognosis in children and young people is more optimistic.  
1.3.1.3 
The diagnosis of CFS/ME should be reconsidered if none of the 
following key features are present: 
•  post-exertional fatigue or malaise 
• cognitive difficulties 
• sleep disturbance 
•  chronic pain.  
1.4 
General management strategies after diagnosis  
1.4.1 
Symptom management  
1.4.1.1 
There is no known pharmacological treatment or cure for CFS/ME. 
However, symptoms of CFS/ME should be managed as in usual 
clinical practice.  
1.4.1.2 
No research evidence was found to support the experience of 
some people with CFS/ME that they are more intolerant of drug 
treatment and have more severe adverse/side effects. However, if 
people with CFS/ME have concerns, healthcare professionals may 
consider starting drug treatment for CFS/ME symptoms at a lower 
dose than in usual clinical practice. The dose may be increased 
gradually, in agreement with the patient.  
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encephalomyelitis (or encephalopathy) 

link to page 19 1.4.1.3 
Specific drug treatment for children and young people with CFS/ME 
should be started by a paediatrician. However, prescribing may be 
continued in primary care, depending on the preferences of the 
patient and their carers, and local circumstances.  
1.4.1.4 
If a person experiences nausea as part of CFS/ME, this should be 
managed conventionally, including giving advice on eating little and 
often, snacking on dry starchy foods and sipping fluids. The use of 
anti-emetic drugs should be considered only if the nausea is 
severe.  
1.4.1.5 Although 
exclusion diets are not generally recommended for 
managing CFS/ME, many people find them helpful in managing 
symptoms, including bowel symptoms. If a person with CFS/ME 
undertakes an exclusion diet or dietary manipulation, healthcare 
professionals should seek advice from a dietitian because of the 
risk of malnutrition.  
1.4.2 Function 
and 
quality-of-life 
management 
Sleep management 
1.4.2.1 Healthcare 
professionals should provide tailored sleep 
management advice that includes:  
•  Explaining the role and effect of disordered sleep or sleep 
dysfunction in CFS/ME. 
•  Identifying the common changes in sleep patterns seen in 
CFS/ME that may exacerbate fatigue symptoms (such as 
insomnia, hypersomnia, sleep reversal, altered sleep–wake 
cycle and non-refreshing sleep). 
•  Providing general advice on good sleep hygiene6
•  Introducing changes to sleep patterns gradually. 
•  Regular review.  
                                                 
6 For general advice on sleep hygiene, see the NHS Direct website (www.nhsdirect.nhs.uk). 
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encephalomyelitis (or encephalopathy) 

link to page 51 link to page 51 link to page 51 link to page 51 link to page 51 1.4.2.2 
If sleep management strategies do not improve the person's sleep 
and rest, the possibility of an underlying sleep disorder or 
dysfunction should be considered, and interventions provided if 
needed.  
1.4.2.3 Sleep 
management strategies should not include encouraging 
daytime sleeping and naps. People with CFS/ME should be 
advised that excessive sleep does not generally improve physical 
or mental functioning, and excessive periods of daytime sleep or 
frequent napping may further disrupt the sleep–wake cycle.  
Rest periods 
1.4.2.4 
Rest periods are a component of all management strategies for 
CFS/ME. Healthcare professionals should advise people with 
CFS/ME on the role of rest, how to introduce rest periods into their 
daily routine, and the frequency and length appropriate for each 
person. This may include: 
•  Limiting the length of rest periods to 30 minutes at a time. 
•  Introducing ‘low level’ physical and cognitive activities 
(depending on the severity of symptoms). 
•  Using relaxation techniques (see recommendation 1.4.2.6).  
1.4.2.5 Healthcare 
professionals 
should review the use of rest periods 
regularly as part of the patient’s management plan.  
Relaxation 
1.4.2.6 
Relaxation techniques appropriate to the person with CFS/ME 
should be offered for the management of pain, sleep problems and 
comorbid stress or anxiety. There are a number of different 
relaxation techniques (such as guided visualisation or breathing 
techniques) that can be incorporated into rest periods.  
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link to page 50 link to page 21 Pacing 
1.4.2.7 People 
with 
CFS/ME have reported pacing to be helpful in self-
managing CFS/ME. However, healthcare professionals should 
advise people with CFS/ME that, at present, there is insufficient 
research evidence on the benefits or harm of pacing.  
1.4.3 Diet 
See also recommendations on managing nausea (1.4.1.4) and 
bowel symptoms (1.4.1.5), and use of supplements (1.4.7.2–4). 
1.4.3.1 Healthcare 
professionals 
should emphasise the importance of a 
well-balanced diet in line with ‘The balance of good health’7. They 
should work with the person with CFS/ME to develop strategies to 
minimise complications that may be caused by nausea, swallowing 
problems, sore throat or difficulties with buying, preparing and 
eating food.  
1.4.3.2 Healthcare 
professionals 
should emphasise the importance of 
eating regularly, and including slow-release starchy foods in meals 
and snacks. The physiological consequences of not doing so 
should be explained to the person with CFS/ME.  
1.4.4 
Equipment to maintain independence 
1.4.4.1 
For people with moderate or severe CFS/ME, providing or 
recommending equipment and adaptations (such as a wheelchair, 
blue badge or stairlift) should be considered as part of an overall 
management plan, taking into account the risks and benefits for the 
individual patient. This may help them to maintain their 
independence and improve their quality of life.  
1.4.5 Education 
and 
employment 
1.4.5.1 
Having to stop their work or education is generally detrimental to 
people’s health and well-being. Therefore, the ability of a person 
                                                 
 
7 Food Standards Agency (2006) ‘The balance of good health’. London: Foods Standards Agency. 
Available from www.food.gov.uk/multimedia/pdfs/bghbooklet.pdf 
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link to page 22 with CFS/ME to continue in education or work should be addressed 
early and reviewed regularly.  
1.4.5.2 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 of the person with CFS/ME, 
liaising with employers, education providers and support services, 
such as:  
•  occupational health services 
•  disability services through Jobcentre Plus  
•  schools, home education services and local education 
authorities 
•  disability advisers in universities and colleges.  
1.4.5.3 
For people with CFS/ME who are able to continue in or return to 
education or employment, healthcare professionals should ensure, 
with the person’s informed consent, that employers, occupational 
health or education institutions have information on the condition 
and the agreed management plan.  
Education 
1.4.5.4 Healthcare 
professionals 
should follow the guidance from the 
Department for Children, Schools and Families8 on education for 
children and young people with medical needs, or equivalent 
statutory guidance.  
1.4.5.5 Healthcare 
professionals 
should work closely with social care and 
education services to ensure a common understanding of the goals 
of the person with CFS/ME. The use of a flexible approach should 
be discussed, including home tuition and use of equipment that 
allows a gradual reintegration into education.  
                                                 
8 See www.dcsf.gov.uk 
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link to page 23 1.4.5.6 
Time in education should not be used as a sole marker of progress 
of CFS/ME, and education should not be the only activity a person 
undertakes. There should be a balance between time spent 
attending school or college and doing homework, and time spent 
on home and social activities.  
Employment 
1.4.5.7 
If possible, and with the informed consent of the person with 
CFS/ME, healthcare professionals should discuss employment 
issues with occupational health professionals, who will 
communicate with the person’s manager or human resources 
representative. If there is no access to occupational health 
services, the responsible clinician should liaise with the employer 
directly9.  
1.4.6 
Strategies that should not be used for CFS/ME 
1.4.6.1 
The following drugs should not be used for the treatment of 
CFS/ME: 
•  monoamine oxidase inhibitors 
•  glucocorticoids (such as hydrocortisone) 
•  mineralocorticoids (such as fludrocortisone) 
• dexamphetamine 
• methylphenidate 
• thyroxine 
•  antiviral agents.  
                                                 
9 NHS Plus has produced guidance on the occupational aspects of the management of CFS/ME, 
available from www.nhsplus.nhs.uk (search for ‘chronic fatigue syndrome’). 
NICE is developing guidance on the management of long-term sickness and incapacity; publication is 
expected in December 2008 (details available from www.nice.org.uk). 
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1.4.6.2 
The following strategies should not be offered to people with 
CFS/ME:  
•  Advice to undertake unsupervised, or unstructured, vigorous 
exercise (such as simply ‘go to the gym’ or ‘exercise more’) 
because this may worsen symptoms. 
•  Specialist management programmes (see section 1.6) delivered 
by practitioners with no experience in the condition.  
1.4.6.3 
Although there is considerable support from patients (particularly 
people with severe CFS/ME) for the following strategies,  
healthcare professionals should be aware that there is no 
controlled trial evidence of benefit:  
•  Encouraging maintenance of activity levels at substantially less 
than full capacity to reserve energy for the body to heal itself 
(sometimes known as the envelope theory).  
•  Encouraging complete rest (cognitive, physical and emotional) 
during a setback/relapse.  
1.4.6.4 
Strategies for managing CFS/ME should not include: 
•  Prolonged or complete rest or extended periods of daytime rest 
in response to a slight increase in symptoms. 
•  An imposed rigid schedule of activity and rest.  
1.4.7 Complementary 
and 
supplementary therapies 
1.4.7.1 
There is insufficient evidence that complementary therapies are 
effective treatments for CFS/ME and therefore their use is not 
recommended. However, some people with CFS/ME choose to use 
some of these therapies for symptom control, and find them helpful.  
1.4.7.2 
There is insufficient evidence for the use of supplements – such as 
vitamin B12, vitamin C, co-enzyme Q10, magnesium, NADH 
(nicotinamide adenine dinucleotide) or multivitamins and minerals – 
for people with CFS/ME, and therefore they should not be 
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link to page 25 link to page 52 prescribed for treating the symptoms of the condition. However, 
some people with CFS/ME have reported finding these helpful as a 
part of a self-management strategy for their symptoms.  
1.4.7.3 
People with CFS/ME who are using supplements should be 
advised not to exceed the safe levels recommended by the Food 
Standards Agency10.  
1.4.7.4 
Some people with CFS/ME need supplements because of a 
restricted dietary intake or nutritional deficiencies. Healthcare 
professionals should seek advice from a dietitian about any 
concerns.  
1.5 
Referral to specialist CFS/ME care 
1.5.1.1 
Any decision to refer a person to specialist CFS/ME care should 
be based on their needs, the type, duration, complexity and 
severity of their symptoms, and the presence of comorbidities. The 
decision should be made jointly by the person with CFS/ME and 
the healthcare professional.  
1.5.1.2 
Referral to specialist CFS/ME care should be offered: 
•  within 6 months of presentation to people with mild CFS/ME 
•  within 3–4 months of presentation to people with moderate 
CFS/ME symptoms  
•  immediately to people with severe CFS/ME symptoms.  
1.6 
Specialist CFS/ME care 
1.6.1.1 
After a patient is referred to specialist care, an initial assessment  
should be done to confirm the diagnosis.  
1.6.1.2 If 
general 
management 
strategies (see section 1.4) are helpful for a 
person with CFS/ME, these should be continued after referral to 
specialist CFS/ME care.  
                                                 
10 See www.food.gov.uk 
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link to page 49 link to page 50 link to page 49 link to page 50 link to page 50 link to page 50 link to page 50 1.6.2 
Cognitive behavioural therapy, graded exercise therapy 
and activity management programmes 
Choosing and planning treatment 
1.6.2.1 
An individualised, person-centred programme should be offered  
to people with CFS/ME. The objectives of the programme should 
be to: 
•  sustain or gradually extend, if possible, the person’s physical, 
emotional and cognitive capacity  
•  manage the physical and emotional impact of their symptoms.  
1.6.2.2 
The rationale and content of the different programmes, including 
their potential benefits and risks, should be fully explained to the 
person with CFS/ME. Healthcare professionals should explain that 
no single strategy will be successful for all patients, or during all 
stages of the condition.  
1.6.2.3 Healthcare 
professionals 
should recognise that the person with 
CFS/ME is in charge of the aims of the programme. The choice of 
the programme, its components, and progression throughout the 
programme should be mutually agreed and based on: 
•  the person’s age, preferences and needs 
•  the person’s skills and abilities in managing their condition, and 
their goals (such as improvement or treatment of deterioration of 
symptoms, prevention of relapse or maintenance) 
•  the severity and complexity of symptoms  
•  physical and cognitive functioning.  
1.6.2.4 
Cognitive behavioural therapy (CBT) and/or graded exercise 
therapy (GET) should be offered to people with mild or moderate 
CFS/ME and provided to those who choose these approaches, 
because currently these are the interventions for which there is the 
clearest research evidence of benefit.  
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link to page 49 1.6.2.5 
If a full CBT or GET programme is inappropriate or not available, 
components of CBT or GET should be offered, either individually or 
more effectively in combination with: 
•  activity management strategies (see 1.6.2.22) 
•  sleep management (see 1.4.2.1–3) 
•  relaxation techniques (see 1.4.2.6).  
1.6.2.6 
The choice of programme, its components and progression through 
it should be reviewed regularly, taking into account the goals and 
abilities of the person with CFS/ME, and other approaches agreed 
as necessary.  
1.6.2.7 Healthcare 
professionals 
should advise people with CFS/ME to 
contact them if they experience an increase in symptoms that lasts 
for longer than a few days after starting the specialist programme, 
or if symptoms are severe or distressing.  
Cognitive behavioural therapy (CBT) 
1.6.2.8 
A course of CBT should be delivered only by a healthcare 
professional with appropriate training in CBT and experience in 
CFS/ME, under clinical supervision. The therapist should adhere 
closely to empirically grounded therapy protocols.  
1.6.2.9 
CBT should be offered on a one-to-one basis if possible.  
1.6.2.10  CBT for a person with CFS/ME should be planned according to the 
usual principles of CBT, and should include:  
•  Acknowledging and validating the person’s symptoms and 
condition.  
•  Explaining the CBT approach in CFS/ME, such as the 
relationship between thoughts, feelings, behaviours and 
symptoms, and the distinction between causal and perpetuating 
factors.  
•  Discussing the person’s attitudes and expectations. 
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•  Developing a supportive and collaborative therapeutic 
relationship.  
•  Developing a shared formulation and understanding of factors 
that affect CFS/ME symptoms.  
•  Agreeing therapeutic goals.  
•  Tailoring treatment to the person’s needs and level of 
functioning.  
•  Recording and analysing patterns of activity and rest, and 
thoughts, feelings and behaviours (self-monitoring).  
•  Establishing a stable and maintainable activity level (baseline) 
followed by a gradual and mutually agreed increase in activity.  
•  Challenging thoughts and expectations that may affect symptom 
improvement and outcomes.  
•  Addressing complex adjustment to diagnosis and acceptance of  
current functional limitations.  
•  Developing awareness of thoughts, expectations or beliefs and 
defining fatigue-related cognitions and behaviour. 
• Identifying perpetuating factors that may maintain or exacerbate 
CFS/ME symptoms to increase the person’s self-efficacy (sense 
of control over symptoms). 
•  Addressing any over-vigilance to symptoms and related 
checking or reassurance-seeking behaviours by providing 
physiological explanations of symptoms and using 
refocusing/distraction techniques.  
•  Problem solving using activity management and homework tasks 
to test out alternative thoughts or beliefs, such as undertaking 
pleasure and mastery tasks (tasks that are enjoyable and give a 
sense of accomplishment).  
•  Building on existing assertion and communication skills to set 
appropriate limits on activity.  
•  Managing sleep problems, for example by addressing any 
unhelpful beliefs about sleep, behavioural approaches to sleep 
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link to page 49 disturbance, stress management, and/or relaxation training (see 
recommendations 1.4.2.1–6).  
•  Treating any associated or comorbid anxiety, depression or 
mood disorder according to NICE clinical guidelines on these 
conditions (see section 6).  
•  Offering information on managing setbacks/relapses (see 
section 1.7).  
Graded exercise therapy (GET) 
1.6.2.11  GET should be delivered only by a suitably trained GET therapist 
with experience in CFS/ME, under appropriate clinical supervision.  
1.6.2.12  GET should be offered on a one-to-one basis if possible.  
1.6.2.13  People with mild or moderate CFS/ME should be offered GET that 
includes planned increases in the duration of physical activity. The 
intensity should then be increased when appropriate, leading to 
aerobic exercise (that is, exercise that increases the pulse rate).  
1.6.2.14  GET should be based on the person’s current level of activities 
(such as physical activity, daily routines, sleep patterns and 
frequency of setbacks/relapses) and emotional factors, vocational 
or educational factors and individual goals (details of these may be 
obtained from an activity diary). The programme should also 
include sleep and relaxation strategies (see recommendations 
1.4.2.1–6).  
1.6.2.15  When planning GET, the healthcare professional should: 
•  Undertake an activity analysis to ensure that the person with 
CFS/ME is not in a ‘boom and bust’ cycle before they increase 
the time spent in exercise. 
•  Discuss with the person the ultimate goals that are important 
and relevant to them. This might be, for example, a twice-daily 
short walk to the shops, a return to a previous active hobby such 
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as cycling or gardening, or, for people with severe CFS/ME, 
sitting up in bed to eat a meal. 
•  Recognise that it can take weeks, months or even years to 
achieve goals, and ensure that this is taken into account in the 
therapy structure (for example, by setting short- and medium-
term goals). 
•  Explain symptoms and the benefits of exercise in a physiological 
context.  
1.6.2.16  When starting GET, the healthcare professional should:  
•  Assess the person’s current daily activities to determine their 
baseline.  
•  Agree with them a level of additional low-intensity exercise that 
is sustainable, independent of daily fluctuations in symptoms, 
and does not lead to ‘boom and bust’ cycles. This may be sitting 
up in bed or brushing hair, for example, for people with severe 
CFS/ME, or gentle stretches or a slow walk.  
•  Encourage them to undertake this exercise for at least 5 days 
out of 7, or build up to this level if and when possible. 
•  Advise them that this level of exercise may mildly increase 
symptoms for a few days (for example, a mild to moderate 
increase in stiffness and fatigue), explain why this may occur 
and discuss strategies to mitigate it. 
•  Offer information on the management of setbacks/relapses (see 
section 1.7).  
Progressing with GET  
1.6.2.17  When the low-intensity exercise can be sustained for 5 days out of 
7 (usually accompanied by a reduction in perceived exertion), the 
duration should be reviewed and increased, if appropriate, by up to 
20%. For example, a 5-minute walk becomes 6 minutes, or a 
person with severe CFS/ME sits up in bed for a longer period, or 
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walks to another room more often. The aim is to reach 30 minutes 
of low-intensity exercise.  
1.6.2.18  When the duration of low-intensity exercise has reached 
30 minutes, the intensity of the exercise may be increased 
gradually up to an aerobic heart rate zone, as assessed individually 
by a healthcare professional. A rate of 50–70% maximum heart 
rate is recommended.  
1.6.2.19 Exercise 
intensity should be measured using a heart rate monitor, 
so that the person knows they are within their target heart rate 
zone.  
1.6.2.20  If agreed GET goals are met, exercise duration and intensity may 
be increased further if appropriate, if other daily activities can also 
be sustained, and in agreement with the person with CFS/ME.  
Maintaining exercise 
1.6.2.21  After completing a GET programme, the healthcare professional 
and the person with CFS/ME should continue working together to 
develop and build on strategies to maintain exercise. Support 
should be available, if needed, to enable the person to reinforce the 
learning and lifestyle changes made and continue GET beyond 
discharge.  
Activity management 
1.6.2.22  Activity management is a goal-oriented and person-centred 
approach tailored to the needs of the person with CFS/ME. It 
should include: 
•  Understanding that activities have physical, emotional and 
cognitive components, and identifying these components. 
•  Keeping a diary that records cognitive and physical activity, 
daytime rest and sleep. This will help to set baseline levels of 
activity (a stable and sustainable range of functioning), identify 
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patterns of over- and underactivity, and develop an 
activity/exercise strategy. 
•  Establishing a baseline; specific activities may need to be 
increased or decreased while this is happening. 
• Gradually increasing activity above the baseline in agreement 
with the person. 
•  Planning daily activities to allow for a balance and variety of 
different types of activity, rest and sleep. This may include 
making a weekly activity schedule. 
•  Spreading out difficult or demanding tasks over the day or week. 
•  Splitting activities into small achievable tasks according to the 
person’s level of ability/functioning, followed by gradual 
increases in the complexity of the tasks. 
•  Monitoring, regulating and planning activities to avoid a ‘boom 
and bust’ cycle.  
•  Goal setting, planning and prioritising activities. 
•  Explaining the role of rest in CFS/ME and helping the person 
work out how to build in rest periods and achieve a productive 
day (see recommendations 1.4.2.1–6). 
•  Regularly reviewing activity levels and goals.  
•  Offering information on the management of setbacks/relapses 
(see section 1.7).  
1.6.3 Pharmacological 
interventions for symptom control 
1.6.3.1 
If chronic pain is a predominant feature, healthcare professionals 
should consider referral to a pain management clinic.  
1.6.3.2 
Prescribing of low-dose tricyclic antidepressants, specifically 
amitriptyline, should be considered for people with CFS/ME who 
have poor sleep or pain. Tricyclic antidepressants should not be 
offered to people who are already taking selective serotonin 
reuptake inhibitors (SSRIs) because of the potential for serious 
adverse interactions.  
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1.6.3.3 
Melatonin may be considered for children and young people with 
CFS/ME who have sleep difficulties, but only under specialist 
supervision because it is not licensed in the UK.  
1.7 
Management of setbacks/relapses 
1.7.1 
Preparing for a setback/relapse 
1.7.1.1 
People with CFS/ME should be advised that setbacks/relapses are 
to be expected as part of CFS/ME.  
1.7.1.2 Healthcare 
professionals 
and 
people with CFS/ME should develop 
a plan for managing setbacks/relapses, so that skills, strategies, 
resources and support are readily available and accessible when 
needed. This plan may be shared with the person’s carers, if they 
agree.  
1.7.2 During 

setback/relapse 
1.7.2.1 
Setbacks/relapses may be triggered by factors such as 
unexpected/unplanned activities, poor sleep, infection or stress. 
Healthcare professionals, in discussion with the person with 
CFS/ME, should try to identify the cause(s) of a setback/relapse, 
but it should be recognised that this may not always be possible.  
1.7.2.2 
When managing a setback/relapse, the management plan should 
be reviewed. Healthcare professionals should discuss and agree 
an appropriate course of action with the person with CFS/ME, 
taking into account: 
•  the person’s experience 
•  possible causes of the setback/relapse, if known 
•  the nature of the symptoms 
•  the severity and duration of the setback/relapse 
•  the current management plan.  
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1.7.2.3 
When managing setbacks, healthcare professionals should put 
strategies in place that: 
•  Include relaxation and breathing techniques. 
•  Maintain activity and exercise levels if possible, by alternating 
activities with breaks and pacing activities, as appropriate. 
•  Involve talking to families and carers, if appropriate. 
•  Recognise distressing thoughts about setbacks/relapses such as 
‘this means I’ll never get better’, but encourage optimism. 
•  Involve reconsidering and revising the levels and types of 
symptom control.  
1.7.2.4 
In some setbacks/relapses, it may be necessary to reduce, or even 
stop, some activities and increase the frequency and/or duration of 
rest periods to stabilise symptoms and re-establish a baseline 
activity level. This should be discussed and agreed with the person 
with CFS/ME.  
1.7.2.5 
People with CFS/ME should be advised to minimise daytime sleep 
periods. However, healthcare professionals should recognise that 
this is not always possible, depending on the severity of a person’s 
symptoms and the setback.  
1.7.3 
After a setback/relapse 
1.7.3.1 
After a setback/relapse, healthcare professionals should review the 
person’s activity levels to re-establish a baseline and review the 
management plan. A gradual return, when possible, to previous 
exercise and functional routines should be encouraged. Activity 
should be increased gradually.  
1.7.3.2 Healthcare 
professionals should advise on: 
•  Slowly decreasing the frequency and duration of rest periods. 
•  Continuing the use of relaxation techniques, even when the 
person with CFS/ME is beginning to feel better.  
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1.7.3.3 
After a setback, healthcare professionals and people with CFS/ME 
should review the experience to determine, if possible, whether 
triggers can be managed in the future, and put strategies in place 
to do this.  
1.8 
Review and ongoing management 
1.8.1.1 
Regular, structured review should be undertaken for all people with 
CFS/ME. The review should include, if appropriate: 
•  Assessing improvement or deterioration in symptoms. 
•  Assessing any adverse or unwanted effects of therapy. 
• Ongoing investigations. 
•  Considering the need to repeat investigations (for children and 
young people, repeating investigations should be considered if 
there is no improvement after 1 year). 
•  Reviewing the diagnosis, especially if signs and symptoms 
change (see recommendation 1.2.1.4). 
• Considering referral to specialist CFS/ME care. 
• Reviewing equipment needs. 
•  Assessing any additional support needs (see sections 1.1 and 
1.4).  
1.8.1.2 
The timing of the reviews should depend on the severity and 
complexity of symptoms, the effectiveness of any interventions, and 
the needs of the person with CFS/ME.  
1.9 
Key principles of care for people with severe CFS/ME 
1.9.1 
General principles of care 
1.9.1.1 
Management of severe CFS/ME is difficult and complex and 
healthcare professionals should recognise that specialist expertise 
is needed when planning and providing care for people with severe 
CFS/ME.  
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link to page 36 1.9.1.2 Diagnosis, 
investigations, management and follow-up care for 
people with severe CFS/ME should be supervised or supported by 
a specialist in CFS/ME.  
1.9.1.3 
People with severe CFS/ME may need to use community services 
at times. These services may include nursing, occupational 
therapy, dietetics, respite care, psychology and physiotherapy (see 
the ‘National service framework for long-term conditions’11). The 
input of different professionals should be coordinated by a named 
professional.  
1.9.1.4 
People with severe CFS/ME should be offered a summary record 
of every consultation because of their cognitive difficulties.  
1.9.1.5 
Most people with CFS/ME will not need hospital admission. 
However, there may be circumstances when a planned admission 
should be considered. The decision to admit should be made with 
the person with CFS/ME and their family, and be based on an 
informed consideration of the benefits and disadvantages. For 
example, a planned admission may be useful if assessment of a 
management plan and investigations would require frequent visits 
to the hospital.  
1.9.2 Rest 
1.9.2.1 
When making decisions about prolonged bed rest, healthcare 
professionals should seek advice from a specialist experienced in 
the care of people with severe CFS/ME. The significant physical 
and psychological risks associated with prolonged bed rest should 
be taken into account.  
1.9.2.2 Healthcare 
professionals 
working with people with severe CFS/ME 
who are in bed most (or all) of the time, should explain the 
associated risks (such as postural hypotension, deep venous 
                                                 
11 Available from www.dh.gov.uk 
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thrombosis, osteoporosis, pressure sores and deconditioning
and monitor these.  
1.9.3 Management 
approaches 
1.9.3.1 
People with severe CFS/ME should be offered an individually 
tailored activity management programme (see recommendation 
1.6.2.22) as the core therapeutic strategy, which may: 
•  be delivered at home, or using telephone or email if appropriate 
•  incorporate the elements of recommendation 1.6.2.22 and draw 
on the principles of CBT and GET (see recommendations 
1.6.2.1–21).  
1.9.3.2 
An activity management programme should be reviewed regularly 
and frequently.  
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Notes on the scope of the guidance 
NICE guidelines are developed in accordance with a scope that defines what 
the guideline will and will not cover. The scope of this guideline is available 
from www.nice.org.uk/CG053. 
This guideline addresses 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 guideline 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 guideline does not cover the management of comorbidities, highly 
specialised procedures, service provision or models of care. 
How this guideline was developed 
NICE commissioned the National Collaborating Centre for Primary Care to 
develop this guideline. The Centre established a Guideline Development 
Group (see appendix A), which reviewed the evidence and developed the 
recommendations. An independent Guideline Review Panel oversaw the 
development of the guideline (see appendix B). 
There is more information in the booklet: ‘The guideline development process: 
an overview for stakeholders, the public and the NHS’ (second edition, 
published April 2006), which is available from 
www.nice.org.uk/guidelinesprocess or by telephoning 0870 1555 455 (quote 
reference N1233). 
3 Implementation 
 
The Healthcare Commission assesses the performance of NHS organisations 
in meeting core and developmental standards set by the Department of Health 
in ‘Standards for better health’, issued in July 2004. Implementation of clinical 
guidelines forms part of the developmental standard D2. Core standard C5 
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says that national agreed guidance should be taken into account when NHS 
organisations are planning and delivering care. 
NICE has developed tools to help organisations implement this guidance 
(listed below). These are available on our website (www.nice.org.uk/CG053).  
•  Slides highlighting key messages for local discussion. 
• Costing tools: 
−  costing report to estimate the national savings and costs associated with 
implementation 
−  costing template to estimate the local costs and savings involved. 
•  Implementation advice on how to put the guidance into practice and 
national initiatives that support this locally.  
•  Audit criteria to monitor local practice. 
4 Research 
recommendations 
The Guideline Development Group has made the following recommendations 
for research, based on its review of evidence, to improve NICE guidance and 
patient care in the future. The Guideline Development Group’s full set of 
research recommendations is detailed in the full guideline (see section 5).  
The aetiology of CFS/ME was outside the scope of the guideline and therefore 
a systematic search of the area was not carried out.  For that reason, the 
GDG has not made a research recommendation about the causes of 
CFS/ME, but it recognises that research in this area would be very helpful. 
4.1 
Extrapolating use of intervention strategies  
Are intervention strategies that have been shown to be effective in mildly to 
moderately affected adults also effective in children and in people (adults and 
children) with severe CFS/ME?  
Why this is important 
There is limited evidence for the use or effectiveness of strategies 
recommended in this guideline in these two patient groups. Population data 
suggest that these groups constitute a significant percentage of the population 
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with CFS/ME. Some patient experience suggests that some of these 
interventions may be harmful and/or not effective.  
4.2 
Delivery of standard methods of care 
Are there more efficient ways of delivering standard methods of care? For 
example, what is the most efficient way of delivering domiciliary care for 
people with CFS/ME? 
Why this is important 
Randomised controlled trials, with adequate power, are needed to compare 
different methods of delivering standard methods of care, and whether 
outcomes differ depending on whether they are delivered in primary or 
secondary care. Subgroup analysis may clarify which approach is most 
efficient (that is, cost effective without decreasing efficacy) in different groups 
of people with CFS/ME (for example, people who are severely affected).  
4.3 
Prevalence and course of the illness 
What is the prevalence and incidence of CFS/ME in different populations? 
What is the natural course of the illness?  
Why this is important 
Reliable information on the prevalence and incidence of this condition is 
needed to plan services. This will require well-constructed epidemiological 
studies across different populations to collect longitudinal data to predict 
outcome, and to calculate the economic impact of loss of work or education.  
We recommend that these questions are answered using a mixture of: 
•  cross-sectional population studies, including people with different levels of 
disease severity from all ethnic groups and social classes  
• longitudinal cohorts of people with CFS/ME, and population cohorts to 
assess the incidence and prognosis of CFS/ME in a previously normal 
cohort.  
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4.4 Measuring 
outcome 
What is the best way of measuring outcome in research studies?  
Why this is important 
There is a lack of studies in this area. Knowing what is important to people 
with CFS/ME is crucial for designing future studies. It is not known how best to 
measure improvement scientifically for people with CFS/ME, and how much of 
an improvement is significant. More information is needed on functional 
outcomes such as return to work or education, return to normal family life or 
social activities, or increased self-esteem, to inform future estimates of the 
cost effectiveness of treatment. 

Other versions of this guideline 
5.1 Full 
guideline 
The full guideline, ‘Chronic fatigue syndrome/myalgic encephalomyelitis (or 
encephalopathy): diagnosis and management of CFS/ME in adults and 
children’ contains details of the methods and evidence used to develop the 
guideline. It is published by the National Collaborating Centre for Primary 
Care, and is available from 
www.rcgp.org.uk/guidance/clinical_guidelines_nccpc.aspx, our website 
(www.nice.org.uk/CG053fullguideline) and the National Library for Health 
(www.nlh.nhs.uk).  
5.2 
Quick reference guide 
A quick reference guide for healthcare professionals is available from 
www.nice.org.uk/CG053quickrefguide 
For printed copies, phone the NHS Response Line on 0870 1555 455 (quote 
reference number N1302).  
5.3 
‘Understanding NICE guidance’ 
Information for patients and carers (‘Understanding NICE guidance’) is 
available from www.nice.org.uk/CG053publicinfo 
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For printed copies, phone the NHS Response Line on 0870 1555 455 (quote 
reference number N1303).  

Related NICE guidance 
Nutrition support in adults: oral nutrition support, enteral tube feeding and 
parenteral nutrition NICE clinical guideline 32 (2006). Available from 
www.nice.org.uk/CG032 
Referral guidelines for suspected cancer. NICE clinical guideline 27 (2005). 
Available from http://www.nice.org.uk/CG027  
Depression in children and young people: identification and management in 
primary, community and secondary care. NICE clinical guideline 28 (2005). 
Available from www.nice.org.uk/CG028 
Depression: management of depression in primary and secondary care. NICE 
clinical guideline 23 (2004, amended 2007). Available from 
www.nice.org.uk/CG023  
Anxiety: management of anxiety (panic disorder, with or without agoraphobia, 
and generalised anxiety disorder) in adults in primary, secondary and 
community care. NICE clinical guideline 22 (2004, amended 2007). Available 
from www.nice.org.uk/CG022 
NICE is developing the following guidance (details available from 
www.nice.org.uk) 
•  Irritable bowel syndrome in adults: diagnosis and management of irritable 
bowel syndrome in primary care. NICE clinical guideline (publication 
expected February 2008). 
•  Management of long-term sickness and incapacity: guidance for primary 
care and employers on the management of long-term sickness and 
incapacity. NICE public health programme guidance (publication expected 
December 2008).  
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Updating the guideline 
NICE clinical guidelines are updated as needed so that recommendations 
take into account important new information. We check for new evidence 
2 and 4 years after publication, to decide whether all or part of the guideline 
should be updated. If important new evidence is published at other times, we 
may decide to do a more rapid update of some recommendations.   
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Appendix A: The Guideline Development Group 
Chair: Professor Richard Baker 
Head of Department, Department of Health Sciences, University of Leicester 
Mr Richard Eddleston 
Patient Representative, Nottingham 
Mrs Ute Elliott 
Patient Representative, Sheffield 
Ms Tanya Harrison (resigned August 2007) 
Patient Representative, Norfolk 
Ms Jessica Bavinton  
Physiotherapist, London 
Dr Esther Crawley 
Consultant Paediatrician, Bath  
Dr Tony Downes 
General Practitioner, North East Wales 
Dr Richard Grünewald 
Consultant Neurologist, Sheffield 
Dr William Hamilton 
General Practitioner/Researcher, Bristol 
Mrs Judith Harding 
Dietitian, Essex  
Dr Frederick Nye 
Infectious Disease Consultant Physician, Liverpool 
Ms Amanda O’Donovan  
Clinical Psychologist, London 
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Dr Alastair Santhouse 
Consultant Liaison Psychiatrist, London  
Dr Julia C Smedley 
Consultant Occupational Health Physician, Southampton 
Dr David Vickers 
Consultant Paediatrician, Cambridge 
Mrs Gillian Walsh 
Nurse, Manchester 
Ms Carol Wilson 
Occupational Therapist, Falmouth 
Dr Philip MD Wood 
Consultant Immunologist, Leeds 
Members of the GDG from the National Collaborating Centre 
for Primary Care (NCC-PC) 
Nancy Turnbull 
Chief Executive and Project Lead, NCC-PC 
Ms Elizabeth Shaw 
Deputy Chief Executive and Reviewer, NCC-PC 
Mr Gary Britton 
Health Services Research Fellow (from August 2006), NCC-PC 
NCC-PC technical team 
Miss Nicola Costin  
Project Manager and Researcher (until June 2006), NCC-PC 
Ms Sarah Dunsdon 
Project Manager and Researcher (from August 2006 until February 2007), 
seconded to the NCC-PC 
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Mr Richard Norman  
Health Economist (until July 2006), NCC-PC 
Ms Stefanie Kuntze 
Health Economist (from December 2006), NCC-PC 
Ms Yolanda Jozephs 
Administrator (until August 2006), NCC-PC 
Mrs Karina Ramos 
Administrator (from March 2007), NCC-PC 
 
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Appendix B: The Guideline Review Panel 
The Guideline Review Panel is an independent panel that oversees the 
development of the guideline and takes responsibility for monitoring 
adherence to NICE guideline development processes. In particular, the panel 
ensures that stakeholder comments have been adequately considered and 
responded to. The Panel includes members from the following perspectives: 
primary care, secondary care, lay, public health and industry.  
Professor Mike Drummond (Chair) 
Professor of Health Economics, Centre for Health Economics, University of 
York 
Ms Karen Cowley 
Practice Development Nurse, York Health Services NHS Trust 
Mr Barry Stables 
Patient/Lay Representative 
Dr John Harley 
Clinical Governance and Prescribing Lead, North Tees PCT 
Dr David Gillen 
Medical Director, Pfizer Ltd 
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Appendix C: The algorithms 
There is a care pathway for CFS/ME on page 6 of the quick reference guide at 
www.nice.org.uk/CG053 
 
 
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Appendix D: Definitions used in this guideline 
Activity 
Any task or series of tasks that a person performs. A task may have physical, 
emotional, cognitive and social components. 
Activity management 
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. 
Age 
•  Adult: aged 18 years and older. 
•  Young person: aged between 12 and 17 years. 
•  Child: aged 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.   
‘Boom and bust’ cycles 
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 (CBT) 
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’.  
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link to page 50 Deconditioning 
Loss of physical fitness as the general physiological response to, for example, 
a prolonged period of inactivity. 
Graded exercise therapy (GET) 
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. 
Pacing  
The report of the Chief Medical Officer’s working group12 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 
                                                 
12 Department of Health (2002) A report of the CFS/ME working group: report to the Chief Medical 
Officer of an independent working group. 
London: Department of Health.  Available from www.dh.gov.uk 
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link to page 51 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.  
Rest periods 
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. 
Setback/relapse 
An increase in symptoms above the usual daily fluctuations, which may result 
in a reduction in function for a time.   
Severity 
The degree to which CFS/ME affects a person’s functioning and daily life13
• 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. 
                                                 
13These definitions were agreed by the GDG and have been derived from definitions in: 
•  Royal College of Paediatrics and Child Health (2004) Evidence-based guideline for the management 
of CFS/ME (chronic fatigue syndrome/myalgic encephalopathy) in children and young people. 
Available from www.rcpch.ac.uk/Research/CE/Guidelines/RCPCH-Guidelines 
•  Department of Health (2002) A report of the CFS/ME working group: report to the Chief Medical 
Officer of an independent working group. London: Department of Health. Available from 
www.dh.gov.uk.  
•  Cox DL, Findley L (1998) Management of chronic fatigue syndrome in an inpatient setting: 
presentation of an approach and perceived outcome. British Journal of Occupational Therapy 61: 
405–9 (this approach was adopted in the CFS/ME working group’s report to the Chief Medical 
Officer, see footnote 12). 
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• 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. 
Specialist CFS/ME care 
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.  
Stage 
There are different stages in the natural course of CFS/ME: acute illness, 
maintenance or stabilisation, and recovery.  
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