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How common is misdiagnosis of M.E.?

An evaluation of referrals made by GPs to the specialist clinic at Bart’s Hospital (White et al, 2012, Journal of the Royal Society of Medicine short reports) found that 49% did not have a diagnosis of M.E.

A study of patients referred by GPs to the Newcastle NHS M.E. service (Newton et al, 2010, Journal of the Royal College of Physicians of Edinburgh) found that 40% were diagnosed with conditions other than M.E. Of these:

  • 47% were found to have fatigue associated with a chronic disease, including metabolic syndrome, neurological disorder, connective tissue disorder/ autoimmune disease and fibromyalgia
  • 20% had a primary sleep disorder
  • 15% had a psychological/psychiatric illnesses, most commonly depression, anxiety and post-traumatic stress disorder
  • 13% of patients had fatigue for which the cause remained unexplained
  • 4% had cardiovascular disorders.

Avoiding misdiagnosis

The NICE guideline states that healthcare professionals should consider the possibility of M.E. if a person has fatigue with ALL of the following features:

  • new or had a specific onset (that is, it is not lifelong)
  • 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.