Chronic fatigue syndrome

1
Chronic fatigue syndrome/ myalgic
encephalomyelitis (or encephalopathy)
Implementing NICE guidance
2007
NICE clinical guideline 53
2
Changing clinical practice

• NICE guidelines are based on the best available
  evidence
• The Department of Health asks NHS organisations
  to work towards implementing NICE guidelines
• Compliance with developmental standards will be
  monitored by the Healthcare Commission

3
What this presentation covers

• Background
• Key recommendations
• Implementation advice
• Costs and savings
• Resources from NICE

4
Definition

• Range of symptoms including
• Fatigue
• Malaise
• Headaches
• Sleep disturbance
• Difficulties with concentration
• Muscle pain

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Why this guideline matters

• Prevalence of CFS/ME 0.20.4
• Considerable variation in current practice
• Complex diagnosis
• Significant impact on patients and families

6
What the guideline covers

• Presentation, diagnosis and pathway of care
• General principles of care
• General management strategies after diagnosis
• Specialist CFS/ME care

7
Key recommendations

• General principles of care
• Diagnosis and initial management
• Specialist CFS/ME care

8
General principles of care

Share decision making between person with CFS/ME
and healthcare professional Explain treatment
options, and the right to withdraw or refuse Give
information on CFS/ME and sources of information
and support Take account of the patients age and
the severity of their CFS/ME
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General principles of care

• Establish a supportive and collaborative
  relationship
• Engage with the family
• Offer services in a way that suits the patient
  for example, home visits, or using phone or email

10
Diagnosis and management adults
Initial assessment Take a full history Examine
the person Assess their psychological wellbeing
Arrange investigations Investigate symptoms
before attributing them to CFS/ME Consider other
investigations according to symptoms
Manage symptoms Give advice
Offer referral if the person has severe CFS/ME
Make the diagnosis if symptoms have lasted 4
months and other diagnoses have been
excluded Reconsider if none of the following are
present post-exertional fatigue or malaise,
cognitive difficulties, sleep disturbance,
chronic pain
11
Diagnosis and management children
Child or young person presents with symptoms that
may indicate CFS/ME
Refer to a paediatrician for assessment within 6
weeks of presentation

• Reconsider if none of the following are present
• Post-exertional fatigue or malaise
• Cognitive difficulties
• Sleep disturbance
• Chronic pain

Paediatrician should make or confirm the
diagnosis if symptoms have lasted 3 months and
other diagnoses have been excluded

• Consider referral to specialist care
• Within 6 months of presentation for child/young
  person with mild CFS/ME
• Within 34 months of presentation for
  child/young person with moderate symptoms
• Immediately for child/young person with severe
  CFS/ME

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Mild CFS/ME

• Mobile, can care for themselves and do light
  domestic tasks with difficulty
• May still be in work or education but has
  probably stopped all leisure and social pursuits
• Often takes days off or uses the weekend to cope
  with the rest of the week

13
Moderate CFS/ME

• Reduced mobility and is restricted in all
  activities of daily living
• Has probably stopped work, school or college and
  needs rest periods
• Sleep is generally poor quality and disturbed

14
Severe CFS/ME

• Unable to do any activity, or minimal daily tasks
  only
• Severe cognitive difficulties and depends on a
  wheelchair for mobility
• Unable/barely able to leave the house
• May spend most of their time in bed
• Often extremely sensitive to light and noise

15
Initial management

• Manage symptoms early do not wait for diagnosis
  
• Advise about
• fitness for work and education
• adjustments or adaptations
• Liaise with
• employers
• education providers
• support services

16
Specialist CFS/ME care

• Base the decision to refer to specialist CFS/ME
  care on
• the persons needs
• symptoms (type, duration, complexity, severity)
• comorbidities
• Decisions should be made jointly
• Offer referral within 6 months if CFS/ME is mild,
  3-4 months if moderate and immediately if severe

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Specialist CFS/ME care

• Offer a person-centred programme that aims to
• sustain or extend the physical, emotional and
  cognitive capacity
• manage the physical and emotional impact of
  symptoms
• Offer cognitive behavioural therapy and/or graded
  therapy for mild or moderate CFS/ME

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Specialist CFS/ME care

• Offer management options including, as
  appropriate
• cognitive behavioural therapy
• graded exercise therapy
• activity management
• sleep management
• rest and relaxation
• diet

19
Specialist CFS/ME care

• Supervision or support by a specialist
• Community services may be needed
• Offer a record of every consultation
• Discuss benefits and disadvantages of hospital
  admission with the patient and their family

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Key areas for implementation

• Feedback to NICE suggests that there are likely
  to be three key areas for successful
  implementation
• training and education
• continuity of care and access to services
• workforce planning and resources

21
Training and education

• Many different specialists involved in care all
  should be similarly educated about CFS/ME
• Make local clinicians aware of CFS/ME and
  specialist services
• Offer training and awareness raising to
  non-specialists and non-healthcare professionals
• Make appropriate training available in the
  recommended interventions

22
Continuity of care

• Good communication is essential for seamless care
  
• Use local referral protocols
• Ensure relevant professionals are aware of
  management plans
• Review home services and telephone and email
  support for people with severe CFS/ME

23
Workforce planning and resources

• CFS/ME services are complex, and involve a
  variety of professionals and settings
• Assess skill mix
• Ensure the service is able to provide the
  recommended interventions and advice

24
Costs and savings per 100,000 population
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Benefits of implementing the guideline

• Benefits of implementing the guideline are not
  quantifiable
• Early intervention could reduce disease
  progression
• Improved diagnosis could lead to improved
  referral
• Return to education or employment

26
Resources from NICE

• Costing tools
• costing report
• costing template
• Implementation advice
• Audit criteria

www.nice.org.uk/CG053
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Access the guideline online

• Quick reference guide a summary
• NICE guideline all of the recommendations
• Full guideline all of the evidence and
  rationale
• Understanding NICE guidance a version for
  patients and carers

www.nice.org.uk/CG053