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Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management

Key priorities for implementation

General principles of care

  • Shared decision-making between the person with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) and healthcare professionals should take place during diagnosis and all phases of care. The healthcare professional 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 this guideline (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 younger than 12 years), the severity of their CFS/ME, their preferences and experiences, 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)
  • Healthcare professionals should be aware that – like all people receiving care in the NHS – people with CFS/ME have the right to refuse or withdraw from any component of their care plan without this affecting other aspects of their care, or future choices about care
  • To facilitate effective management of the condition, healthcare professionals should aim to establish a supportive and collaborative relationship with the person with CFS/ME and their carers. Engagement with the family is particularly important for children and young people, and for people with severe CFS/ME
  • Healthcare professionals should provide diagnostic and therapeutic options to people with CFS/ME in ways that are suitable for the individual person. This may include providing domiciliary services (including specialist assessment) or using methods such as telephone or email

Diagnosis and initial management

  • Advice on symptom management should not be delayed until a diagnosis is established. This advice should be tailored to the specific symptoms the person has and be aimed at minimising their impact on daily life and activities
  • A diagnosis should be made after other possible diagnoses have been excluded and the symptoms have persisted for:
    • 4 months in an adult
    • 3 months in a child or young person; the diagnosis should be made or confirmed by a paediatrician
  • Healthcare professionals should proactively advise about fitness for work and education, and recommend flexible adjustments or adaptations to work or studies to help people with CFS/ME to return to them when they are ready and fit enough. This may include, with the informed consent of the person with CFS/ME, liaising with employers, education providers and support services, such as:
    • occupational health services
    • disability services through Jobcentre Plus
    • schools, home education services and local education authorities
    • disability advisers in universities and colleges

Presentation, diagnosis and pathway of care

Presentation, diagnosis and pathway of care

Specialist CFS/ME care

  • Any decision to refer a person to specialist CFS/ME care should be based on their needs, the type, duration, complexity and severity of their symptoms, and the presence of comorbidities. The decision should be made jointly by the person with CFS/ME and the healthcare professional
  • An individualised, person-centred programme should be offered to people with CFS/ME. The objectives of the programme should be to:
    • sustain or gradually extend, if possible, the person’s physical, emotional and cognitive capacity
    • manage the physical and emotional impact of their symptoms
  • 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, because currently these are the interventions for which there is the clearest research evidence of benefit

Symptoms that may indicate CFS/ME

  • Consider the possibility of CFS/ME if a person has:
    • fatigue with all of the following features:
      • new or had a specific onset (that is, it is not life long)
      • 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)
  • and 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
  • The symptoms of CFS/ME fluctuate in severity and may change in nature over time

Consider other diagnoses or comorbidities before attributing clinical features to CFS/ME

  • In particular, investigate these ‘red flag’ features:
    • localising/focal neurological signs
    • signs and symptoms of inflammatory arthritis or connective tissue disease
    • signs and symptoms of cardiorespiratory disease
    • significant weight loss
    • sleep apnoea
    • clinically significant lymphadenopathy
  • Follow ‘Referral guidelines for suspected cancer’ (NICE clinical guideline 27) or other NICE guidelines as the symptoms indicate. See www.nice.org.uk for details

Investigations

  • These tests should usually be done:
    • urinalysis for protein, blood and glucose
    • full blood count
    • urea and electrolytes
    • liver function
    • thyroid function
    • erythrocyte sedimentation rate or plasma viscosity
    • C-reactive protein
    • random blood glucose
    • serum creatinine
    • screening blood tests for gluten sensitivity
    • serum calcium
    • creatine kinase
    • assessment of serum ferritin levels (children and young people only)
  • Use clinical judgement to decide on additional tests to exclude other diagnoses
  • Do not do:
    • tests for serum ferritin in adults, unless other tests suggest iron deficiency
    • tests for vitamin B12 deficiency or folate levels, unless a full blood count and mean cell volume show a macrocytosis
    • serological testing, unless there is an indicative history of an infection; if so, consider tests for:
      • chronic bacterial infections, such as borreliosis
      • chronic viral infections, such as HIV or hepatitis B or C
      • acute viral infections, such as infectious mononucleosis (heterophile antibody tests)
      • latent infections, such as toxoplasmosis, Epstein–Barr virus or cytomegalovirus
  • Do not do the following tests routinely:
    • the head-up tilt test
    • auditory brainstem responses
    • electrodermal conductivity

Reconsider the diagnosis of CFS/ME

  • Reconsider the diagnosis if the person has none of the following symptoms:
    • post-exertional fatigue or malaise
    • cognitive difficulties
    • sleep disturbance
    • chronic pain

full guideline available from…
National Institute for Health and Care Excellence, Level 1A, City Tower, Piccadilly Plaza, Manchester, M1 4BT
www.nice.org.uk/guidance/CG53

National Institute for Health and Care Excellence. Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management. August 2007
First included: October 2007.