NICE guidance on chronic fatigue syndrome

The guideline was developed by the National Collaborating Centre for Primary Care, and is the first national standard for the diagnosis and management of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) in adults and children.

CFS/ME is a relatively common illness, involving a complex range of symptoms that need to be identified and managed early. Treatment decisions must involve the patient, and the overall objective is to maintain and extend physical, emotional and cognitive capacity.

 

KEY RECOMMENDATIONS FOR PRIMARY CARE

Presentation
Consider possibility of CFS/ME if a patient has fatigue with all of the following features:

  • New or specific onset (that is, it is not life long).
  • Persistent and/or recurrent.
  • Unexplained by other conditions.
  • Resulting 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

With one or more of the following symptoms:

  • Difficulty sleeping, e.g. insomnia, hypersomnia, unrefreshing sleep, disturbed sleep–wake cycle.
  • Muscle and/or joint pain that is multi-site and without evidence of inflammation.
  • Cognitive dysfunction, e.g. difficulty thinking, inability to concentrate, impairment of short-term memory, difficulties with word-finding, planning/organising thoughts and information processing.
  • Painful lymph nodes without pathological enlargement.
  • Worsening symptoms with physical or mental exertion.
  • General malaise or ‘flu-like’ symptoms, sore throat or headaches.
  • Dizziness and/or nausea.
  • Palpitations in the absence of identified cardiac pathology.

 

Investigate ‘red flag’ symptoms that might indicate another serious illness, including:

  • Significant weight loss.
  • Clinically significant lymphadenopathy.
  • Localising or focal neurological signs.
  • Symptoms of inflammatory arthritis, connective tissue disease or cardiorespiratory disease.
  • Sleep apnoea.

Investigations
The following tests should usually be performed:

  • Urinalysis for protein, blood and glucose.
  • Full blood count and erythrocyte sedimentation rate or plasma viscosity.
  • C-reactive protein.
  • Creatine kinase.
  • Serum urea, creatinine, electrolytes and calcium.
  • Random blood glucose.
  • Liver and thyroid function.
  • Screening blood tests for gluten sensitivity.
  • Serum ferritin (children and young people only).

Diagnosis
Diagnosis should be made after other possible diagnoses have been excluded and symptoms have persisted for:

  • Four months in an adult.
  • Three months in a child or young person; diagnosis should be made or confirmed by a paediatrician.

Advice on symptom management should not be delayed until a diagnosis is established.

Management after diagnosis

  • Tailor the management of the symptoms of CFS/ME as in usual clinical practice. This may include drug treatment and dietary changes.
  • Vitamins and minerals and complementary therapies are not recommended; there is insufficient evidence of benefit. However, some patients may find them useful for symptom control.
  • MAOIs, corticosteroids, dexamphetamine, methylphenidate, thyroxine and antiviral agents should not be used for the treatment of CFS/ME.
  • Manage nausea conventionally, with advice on eating little and often, snacking on dry starchy foods and sipping fluids. Consider anti-emetic drugs only for severe nausea.
  • Emphasise the importance of eating regularly, including slow-release starchy foods, in line with a well-balanced diet.
  • Other interventions that may improve function and quality of life include sleep management, appropriate use of rest periods, relaxation, pacing and further dietary changes.
  • Drug treatment for children and young people should be initiated by a paediatrician.

Referral
Offer referral to specialist CFS/ME care:

  • Within six months of presentation to patients with mild CFS/ME.
  • Within three to four months of presentation to patients with moderate CFS/ME symptoms.
  • Immediately if patient has severe CFS/ME symptoms.

 

The full guideline is available at www.nice.org.uk.


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