Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Care

Consider specific management strategies:

• Pacing, rest, and energy management
  • See Emerge Australia

    Management: pacing and symptoms information

    Pacing education

  • Help the patient to:
    • Identify the relationship between specific activities (physical and cognitive) and symptoms, rather than following a strict activity schedule.
    • Balance energy spent on social, physical, cognitive, and academic or work activities with adequate rest, to minimise or avoid post-exertional malaise (PEM). In young people especially, recognise the importance of balancing social, physical and academic activities, rather than prioritising only education.
  • Discuss strategies with the patient that are useful for managing activity levels:
    • Keep activity diary.
    • Using tools to monitor or save energy e.g., step counters, heart rate monitors, shower chairs, disabled parking permits, electric scooters.
    • Dividing activities into smaller tasks with rest breaks in between.
    • Alternating between cognitive and physical tasks.
    • Observing the body for signs that more rest is needed e.g., muscles becoming fatigued, higher resting heart rate.
• Cognitive difficulties
  • Use lists or devices for daily tasks and planning
  • Plan cognitive activities and allow for rests
  • Use caution with stimulants e.g., caffeine
• Sleep disturbance

  Advise the patient:

  • On sleep hygiene principles. Keep in mind this alone is usually not adequate.
  • To minimise or avoid caffeine, energy drinks, alcohol, and smoking.
  • If hypersomnia, to ensure adequate hydration and nutrition during waking hours.
  • To avoid electronic screens (TV, devices) before and after bedtime.
  • To pace daytime activities to avoid PEM, as PEM can interfere with sleep.
  • On sleep medication options

    Sleep medication

    Trial medication using the principle of start low, go slow:

    • Melatonin
    • Low-dose tricyclic antidepressant (TCA) e.g., amitriptyline (can worsen orthostatic intolerance)
    • Benzodiazepines e.g., temazepam, clonazepam (low doses only at night are unlikely to lead to psychological dependence in ME/CFS)

    If pain interferes with sleep, consider a trial of simple analgesics at bedtime. For specific paediatric advice on pain management, see Frontiers in Pediatrics – ME/CFS in Young People Primer: Management and Treatment.

• Orthostatic symptoms

  Advise the patient to:

  • Avoid:
    • Standing in hot or humid environments (e.g., hot showers – use shower chair)
    • Sudden rising from lying down or sitting
    • Prolonged sitting or standing
    • Large meals, too much alcohol
    • Rapid weight loss regimens.
  • Practise:
    • Drinking 2 to 3 litres of water daily, at regular intervals throughout the day
    • Adequate sodium in diet e.g., salting meals, using electrolyte drinks, salt tablets (suggested target 10 g per day for an adult)
    • Eating regularly with 3 meals and snacks
    • Raising feet when seated
    • Raising head of bed
    • Physical counter manoeuvres when sitting or standing e.g., squatting, muscle tensing, leg crossing
    • Wearing medical compression stockings and garments.

  Be aware medications such as fludrocortisone (with potassium supplementation), beta blockers, and ivabradine can be used. Specialist advice is recommended before prescribing.

  See also Heart Lung and Circulation – Postural Orthostatic Tachycardia Syndrome: A State-of-the-art Review.

• Pain management
  • Pain management strategies can include:
    • Simple analgesics, stretching, heat packs (caution with heat in orthostatic intolerance).
    • Physiotherapy, massage (home-based if needed, and with caution as touch can trigger PEM in some patients).
    • Cognitive behavioural therapy (CBT), particularly if stress or mood disturbance present, meditation, mindfulness exercises.

    Be aware low dose naltrexone is currently being evaluated and used off-label as a treatment for ME/CFS pain.

  • If pain is inadequately managed despite several strategies, consider:
    • Chronic or persistent pain referral
    • Non-acute paediatric medicine referral.

    Keep in mind this often requires long and/or regular attendances so may not be achievable for a patient with ME/CFS.