Myalgic encephalomyelitis (ME/CFS)

Summary

• Myalgic encephalomyelitis or encephalopathy (ME) or chronic fatigue syndrome (CFS) is a complex chronic condition defined by a specific pattern of different symptoms that impact a person’s quality of life and functioning.
  • There is typically a clear relationship between normal everyday activity levels causing a disproportionate escalation in fatigue, which does not improve with rest and is slow to recover.
  • The exact pathophysiology is not fully understood.
  • Symptoms typically fluctuate and can change unpredictably in nature and severity over a day, week, or longer.
• A flare-up describes a worsening of symptoms, more than would be accounted for by normal day-to-day variation, that affects the person’s ability to perform usual activities. It is typically transient and resolves after a few days.
• A relapse describes a sustained and marked exacerbation of symptoms lasting longer than a flare-up and needing a substantial and sustained adjustment to the person’s energy management.
• Triggers may include acute infection or illness, overexertion, injury or trauma, other medical conditions, sleep disturbance, or stress. There may be no identifiable trigger.
• Complications include reduced quality of life, social stigma, loss of trust in healthcare and social care professionals, and impact on mental health, education, and work.
• There is no diagnostic test for ME/CFS. A diagnosis should be suspected if the person has the following symptoms for at least 6 weeks that significantly impact functioning and are not explained by another condition:
  • Debilitating fatigue that is worsened by activity, is not caused by excessive cognitive, physical, emotional, or social exertion, and is not significantly relieved by rest.
  • Post-exertional malaise after activity.
  • Unrefreshing sleep or sleep disturbance (or both).
  • Cognitive difficulties.
  • There may be additional symptoms associated with autonomic dysfunction, pain, the gastrointestinal tract, and sensory hypersensitivities, for example.
• Investigations should be arranged to exclude alternative or coexisting conditions, including blood tests and urinalysis.
• Adults with persistent symptoms after 3 months should be referred to an ME/CFS specialist team for confirmation of the diagnosis and development of a personalized care and support plan.
• Review of a person with confirmed ME/CFS should be arranged at least annually in primary care, including:
  • Assessing current or new symptoms and investigating appropriately.
  • Reviewing psychological, emotional, and social wellbeing; self-management strategies; and impact on functioning.
  • Advising about sources of information and support.
  • Reviewing and revising the specialist energy management plan, physical functioning and mobility, and physical activity or exercise programme (if relevant).
  • Considering referral to a physiotherapist or occupational therapist working in an ME/CFS specialist team if needed.
  • Reviewing the person’s support needs, including medicines management; education, training, or employment needs; financial and social care support.
  • Managing any associated conditions and comorbidities including mental health, nutrition and bone health advice.
  • Offering referral for cognitive behavioural therapy if the person wishes for this.
  • Ensuring early recognition, planning for, and self-management of flare-ups or relapse.
  • Providing a named contact in primary care and/or the ME/CFS specialist team to co-ordinate care and provide supports.

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