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Clinical Summary

New NICE guidance on chronic fatigue syndrome: the key points

NICE has published draft guidance on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS).

Among the key recommendations are the following.

Diagnosis

  • Diagnosis is based on clinical grounds.
  • ME/CFS is characterised by:
    • debilitating fatigability not caused by excessive exertion and is not significantly relieved by rest,
    • post-exertional symptom exacerbation after activity,
    • unrefreshing sleep, and
    • cognitive issues.
  • Suspect ME/CFS if:
    • all characteristics are present for ≥6 weeks (≥4 weeks in children),
    • ability to engage in activities is significantly reduced, and
    • symptoms are new and had a specific onset.
  • Symptoms include:
    • pain;
    • hypersensitivity to light, noise, touch, movement, temperature and smells;
    • extreme weakness;
    • difficulties speaking or swallowing;
    • sleep disturbance;
    • gastrointestinal symptoms; and
    • postural orthostatic tachycardia syndrome and orthostatic hypotension.
  • Take a full history including what exacerbates or alleviates symptoms and sleep quality, physical functioning and current and past experiences of medicines, vitamins and mineral supplements (including tolerance and sensitivities).
  • Do not delay making a provisional diagnosis of ME/CFS.
Management
  • Do not offer medicines or supplements to treat or cure ME/CFS.
  • Develop a personal management plan that addresses:
    • information and support needs,
    • support for activities of daily living,
    • education, training or employment support,
    • self-management,
    • physical maintenance,
    • symptom management,
    • managing flares and relapse, and
    • ways to contact their clinical team.
  • Assess for and advise on prevention of complications of long-term immobility.
  • Do not advise unrestricted exercise that is not part of a supervised programme.
  • Refer for physiotherapy or occupational therapy as required.
  • Monitor for malnutrition, especially in severe cases.
  • Conduct safeguarding assessment.
Energy management
  • Help people understand their energy envelope.
  • Help patients to recognise when they are approaching their limit.
  • Use a flexible, tailored approach that allows for the need to pull back when symptoms are worse.
  • Establish an individual activity pattern, for example:
    • reduce activity as the first step,
    • plan periods of rest and activity,
    • incorporate pre-emptive rest,
    • alternate different types of activity, and
    • break activities into small chunks.
Dietary strategies
  • Emphasise adequate fluid intake and balanced diet.
  • Minimise nutritional complications of nausea, swallowing problems or difficulties in buying and preparing food.
  • Refer for dietetic assessment if the patient is losing weight (faltering growth in children).
  • Patients with ME/CFS may be at risk of vitamin D deficiency.
  • Insufficient evidence for routine vitamin and mineral supplementation.
Symptom management
  • Rest and sleep:
    • relaxation techniques prior to rest period could be helpful.
  • Orthostatic intolerance (OI):
    • Medicine should only be prescribed/overseen by someone with expertise in OI.
    • Refer to secondary care if symptoms are severe or worsening.
  • Pain:
    • Refer to:
  • NICE guideline on neuropathic pain in adults.
  • NICE guideline on headaches in over 12s.
  • Nausea:
    • Encourage adequate fluid intake and eating small amounts often.
  • Psychological support:
    • Offer cognitive behavioural therapy (CBT) to improve well-being, quality of life, functioning and psychological distress.
    • Explain that offering CBT does not indicate 'abnormal' beliefs and behaviours are underlying causes.
Managing comorbidities

Refer to:

Medicines for symptom management
  • Patients with ME/CFS may be more intolerant to medication and have more severe adverse effects.
  • Consider:
    • starting at a lower dose and
    • gradually increasing the dose.
  • Drug treatment for children should only be started under guidance from a paediatrician.
Flares and relapse
  • Respond to flares promptly by:
    • identifying possible triggers,
    • temporarily reducing activity, and
    • monitoring as some flares develop into a relapse.
  • For relapse:
    • review the management plan,
    • reduce/stop some activities,
    • increase rest periods, and
    • re-establish new energy envelope.

References


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