Abstract

ObjectiveTrends in recorded diagnoses of chronic fatigue syndrome (CFS, also known as ‘myalgic encephalomyelitis’ (ME)) and fibromyalgia (FM) in the UK were last reported more than ten years ago, for the period 1990–2001. Our aim was to analyse trends in incident diagnoses of CFS/ME and FM for the period 2001–2013, and to investigate whether incidence might vary by index of multiple deprivation (IMD) score.DesignElectronic health records cohort study.SettingNHS primary care practices in the UK.ParticipantsParticipants: Patients registered with general practices linked to the Clinical Practice Research Datalink (CPRD) primary care database from January 2001 to December 2013.Main outcome measureIncidence of CFS/ME, FM, post-viral fatigue syndrome (PVFS), and asthenia/debility.ResultsThe overall annual incidence of recorded cases of CFS/ME was 14.8 (95% CI 14.5, 15.1) per 100,000 people. Overall annual incidence per 100,000 people for FM was 33.3 (32.8–33.8), for PVFS 12.2 (11.9, 12.5), and for asthenia/debility 7.0 (6.8, 7.2). Annual incidence rates for CFS/ME diagnoses decreased from 17.5 (16.1, 18.9) in 2001 to 12.6 (11.5, 13.8) in 2013 (annual percent change −2.8% (−3.6%, −2.0%)). Annual incidence rates for FM diagnoses decreased from 32.3 (30.4, 34.3) to 27.1 (25.5, 28.6) in 2007, then increased to 38.2 (36.3, 40.1) per 100,000 people in 2013. Overall annual incidence of recorded fatigue symptoms was 2246 (2242, 2250) per 100,000 people. Compared with the least deprived IMD quintile, incidence of CFS/ME in the most deprived quintile was 39% lower (incidence rate ratio (IRR) 0.61 (0.50, 0.75)), whereas rates of FM were 40% higher (IRR 1.40 (0.95, 2.06)).ConclusionThese analyses suggest a gradual decline in recorded diagnoses of CFS/ME since 2001, and an increase in diagnoses of fibromyalgia, with opposing socioeconomic patterns of lower rates of CFS/ME diagnoses in the poorest areas compared with higher rates of FM diagnoses.

Highlights

  • Chronic fatigue syndrome (CFS, known as myalgic encephalomyelitis (ME)) and fibromyalgia (FM) are chronic diseases that share superficial similarities, including unknown aetiology and pathophysiology, varied symptomatology, a wide range of severity, higher incidence in women, no laboratory test to confirm diagnosis, and specific co-morbidities.[1,2] Three-quarters of FM patients report being fatigued,[3] and one-fifth of adult and paediatric chronic fatigue syndrome (CFS/ME) patients report widespread pain.[4]

  • FM accounted for half of the diagnoses (49.6%), followed by CFS/ME (23.1%), post-viral fatigue syndrome (PVFS) (16.3%), and asthenia/ debility (9.9%) (Figure 1)

  • Our study has shown that the incidence of CFS/ME diagnoses declined over the period 2001–2013, whereas FM diagnoses showed an overall increase

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Summary

Introduction

Chronic fatigue syndrome (CFS, known as myalgic encephalomyelitis (ME)) and fibromyalgia (FM) are chronic diseases that share superficial similarities, including unknown aetiology and pathophysiology, varied symptomatology, a wide range of severity, higher incidence in women, no laboratory test to confirm diagnosis (only to rule out other diagnoses), and specific co-morbidities.[1,2] Three-quarters of FM patients report being fatigued,[3] and one-fifth of adult and paediatric CFS/ME patients report widespread pain.[4]. Seven case definitions for CFS/ME have been used internationally in clinical practice and research since the first was published in 1988, and these definitions have differed mainly in the minimum duration of fatigue and the type and number of additional symptoms.[7] In the UK, guidelines for the diagnosis and management of CFS/ME were published by the National Institute for Health and Care Excellence (NICE) in 2007.8 These define CFS/ME as persistent and/or recurrent fatigue of !4 months’ duration, of new or specific onset (not lifelong), characterised by post-exertional malaise, unexplained by other conditions, and accompanied by at least one of a dozen symptoms, including sleep-wake perturbations, cognitive dysfunction, and muscle and/or joint pain. Referral to specialist CFS/ME care should be offered within six weeks for children and young people, within

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