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NICE guidance on managing Chronic Fatigue Syndrome/ME

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VOL: 103, ISSUE: 39, PAGE NO: 21

Nerys Hairon

NICE (2007) has published new guidance on chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (or encephalopat…


NICE (2007) has published new guidance on chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (or encephalopathy) (ME). It states that CFS/ME is a ‘relatively common illness’ and stresses that the physical symptoms can be as disabling as multiple sclerosis, systemic lupus erythematosus, rheumatoid arthritis and other long-term conditions.



Due to the lack of epidemiological data for the UK, population estimates are based on extrapolations from other countries. Overall, NICE says evidence suggests a population prevalence of at least 0.2-0.4%. This means that a GP practice with 10,000 patients is likely to include up to 40 people with CFS/ME. The institute asserts that half of these will need input from specialist services.



The guidance, developed by the National Collaborating Centre for Primary Care, points out that CFS/ME poses significant problems for healthcare professionals. It can cause profound, prolonged illness and disability, which has a substantial impact on both those with the condition and their carers. Uncertainties about diagnosis and management, as well as the lack of clinical guidelines for practitioners, have exacerbated this impact.



The guidance covers the diagnosis, treatment and management of CFS/ME in adults and children aged five years and over, in primary and secondary care and in specialist centres and teams.





NICE emphasises the importance of:



- Early symptom management;



- Accurate diagnosis;



- Investigation of significant clinical features;



- Working in partnership with patients to manage the condition.



Recommendations in the following areas are highlighted as key priorities: general principles of care; diagnosis and initial management; and specialist CFS/ME care.





General principles of care


Within the area of general principles of care, NICE outlines recommendations in three areas: shared decision-making; support and information; and provision of care.



Shared decision-making between people with CFS/ME and healthcare professionals should take place during all phases of care. Healthcare professionals 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 the guidance (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 under 12 years), the severity of their condition, their preferences, 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 Programme (EPP, 2007; EPP Wales, 2007).



NICE emphasises that people have the right to refuse or withdraw from any component of their care plan, and that this must not affect other aspects of their care, or future choices about care.



Healthcare professionals should aim to establish a supportive and collaborative relationship with patients and their carers. Engagement with the family is particularly important for children and young people, and for people whose condition is severe.



The guidance states that every person diagnosed with CFS/ME should be offered:



- Information about the illness;



- Acceptance and understanding;



- Assistance negotiating the healthcare, benefits and social care systems;



- Assistance with occupational activities.





CFS/ME is recognised on clinical grounds alone and primary healthcare professionals should be familiar with and be able to identify the features of CFS/ME (see box). The symptoms of CFS/ME fluctuate in severity and may change over time.



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 co-morbidities. In particular, the following features should be investigated:



- Localising/focal neurological signs;



- Signs and symptoms of inflammatory arthritis or connective tissue disease;



- Signs and symptoms of cardio-respiratory disease;



- Significant weight loss;



- Sleep apnoea;



- Clinically significant lymphadenopathy.



The guidance stresses that advice on symptom management should not be delayed until a diagnosis is made, and advice should be tailored to the person’s specific symptoms.



General management after diagnosis


This section contains recommendations covering: symptom management; function and quality of life management; diet; equipment to maintain independence; education and employment; strategies that should not be used for CFS/ME; and complementary and supplementary therapies.



While there is no known pharmacological treatment for CFS/ME, the guidance advises that symptoms of the condition should be managed as in usual clinical practice. The issues of drug intolerance, paediatric prescribing, nausea and exclusion diets are also tackled under symptom management.



In the area of function and quality of life management, the guidance gives advice on sleep management, rest periods, relaxation and pacing.



Healthcare professionals should provide sleep management advice that includes:



- Explaining the role and effect of disordered sleep or sleep dysfunction;



- Identifying the common changes in sleep patterns seen in CFS/ME that may exacerbate fatigue symptoms (such as insomnia, altered sleep-wake cycle and non-refreshing sleep);



- Providing advice on good sleep hygiene;



- Introducing changes to sleep gradually;



- Regular review.



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.



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.



Specialist CFS/ME care


The guidance outlines principles and criteria for referral to specialist care. An individualised, person-centred programme should be offered to people with CFS/ME.



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, as NICE says these are currently the interventions for which there is the clearest evidence of benefit. This section on specialist care also covers pharmacological interventions for symptom control.



The guidance also contains advice on managing setbacks/relapses; review and ongoing management; and care for people with severe CFS/ME. The overall aim is to improve the recognition and management of this complex condition.





- Healthcare professionals should consider the possibility of CFS/ME if a person has:



- Fatigue with all 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);





- 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;



- Dizziness and/or nausea;



- Palpitations in the absence of identified cardiac pathology.

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