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Chronic fatigue syndrome/ myalgic encephalomyelitis (or encephalopathy)

Chronic fatigue syndrome/ myalgic encephalomyelitis (or encephalopathy). Implementing NICE guidance. 2007. NICE clinical guideline 53. Changing clinical practice . NICE guidelines are based on the best available evidence

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Chronic fatigue syndrome/ myalgic encephalomyelitis (or encephalopathy)

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  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

  5. Why this guideline matters • Prevalence of CFS/ME: 0.2–0.4% • 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 patient’s age and the severity of their CFS/ME

  9. 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 Reconsiderif 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 3–4 months of presentation for child/young person with moderate symptoms • Immediately for child/young person with severe CFS/ME

  12. 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 person’s 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

  17. 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

  18. 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

  20. 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

  25. 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

  27. 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

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