Diagnostic Methods for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Systematic Review for a National Institutes of Health Pathways to Prevention Workshop

Haney, Elizabeth M; Smith, M E Beth; McDonagh, Marian; Pappas, Miranda; Daeges, Monica; Wasson, Ngoc; Nelson, Heidi D

doi:10.7326/m15-0443

Cited by 72 publications

(54 citation statements)

References 64 publications

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“…In relation to onset of illness, seven case definitions for CFS/ME have been used 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 [13]. That the fatigue must be of new or distinct onset was a feature of the original CDC case definition [14], and was also part of the Fukuda [15], Oxford [16], and the (original) Canadian [17] case definition.…”

Section: Discussionmentioning

confidence: 99%

Health care resource use by patients before and after a diagnosis of chronic fatigue syndrome (CFS/ME): a clinical practice research datalink study

et al. 2017

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BackgroundOur aim was to investigate patterns of health care resource use by patients before and after a diagnosis of CFS/ME, as recorded by Clinical Practice Research Datalink (CPRD) GP practices in the UK.MethodsWe used a case–control study design in which patients who had a first recorded diagnosis of CFS/ME during the period 01/01/2001 to 31/12/2013 were matched 1:1 with controls by age, sex, and GP practice. We compared rates of GP consultations, diagnostic tests, prescriptions, referrals, and symptoms between the two groups from 15 years (in adults) or 10 years (in children) before diagnosis to 10 years after diagnosis.ResultsData were available for 6710 adult and 916 child (age <18 years) matched case–control pairs. Rates of GP consultations, diagnostic tests, prescriptions, referrals, and symptoms spiked dramatically in the year when a CFS/ME diagnosis was recorded. GP consultation rates were 50% higher in adult cases compared to controls 11–15 years before diagnosis (rate ratio (RR) 1.49 (95% CI 1.46, 1.52)) and 56% higher 6–10 years after diagnosis (RR 1.56 (1.54, 1.57)). In children, consultation rates in cases were 45% higher 6–10 years before diagnosis (RR 1.45 (1.40, 1.51)) and 62% higher 6–10 years after diagnosis (RR 1.62 (1.54, 1.70)). For adults and children, rates of tests, prescriptions, referrals, and symptoms were higher in cases compared to controls for up to 10 years before and after diagnosis.ConclusionsAdults and children with CFS/ME have greater health care needs than the rest of the population for at least ten years before their diagnosis, and these higher levels of health care resource use continue for at least ten years after diagnosis.Electronic supplementary materialThe online version of this article (doi:10.1186/s12875-017-0635-z) contains supplementary material, which is available to authorized users.

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Section: Discussionmentioning

confidence: 99%

Health care resource use by patients before and after a diagnosis of chronic fatigue syndrome (CFS/ME): a clinical practice research datalink study

et al. 2017

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“…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.…”

Section: Introductionmentioning

confidence: 99%

Trends in the incidence of chronic fatigue syndrome and fibromyalgia in the UK, 2001–2013: a Clinical Practice Research Datalink study

et al. 2017

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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.

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“…Approximately 1% of the general population meets criteria for ME/CFS [3]. Although diagnostic criteria for ME/CFS has been widely discussed [4, 5], the only mandatory feature of ME/CFS is a period of at least six months of debilitating fatigue, which can be accompanied by a variety of other symptoms such as post-exertional malaise, unrefreshing sleep, cognitive impairment, orthostatic intolerance and a list of a number of other symptoms [5–11]. Despite much debate regarding the diagnostic criteria for ME/CFS, the quality of patient symptom reports has not been well studied.…”

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confidence: 99%

The utility of patient-reported outcome measures among patients with myalgic encephalomyelitis/chronic fatigue syndrome

et al. 2016

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Purpose Debilitating fatigue is a core symptom of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS); however, the utility of patient-reported symptom outcome measures of fatigue for ME/CFS patients is problematic due to ceiling effects and issues with reliability and validity. We sought to evaluate the performance of three patient-reported symptom measures in a sample of ME/CFS patients and matched controls. Methods 240 ME/CFS patients and 88 age, sex, race, and zip code matched controls participated in the study. Participants completed the Multidimensional Fatigue Inventory-20, DePaul Symptom Questionnaire, and RAND SF-36. Results The general and physical fatigue subscales on Multidimensional Fatigue Inventory-20, as well as the role of physical health on the RAND SF-36, demonstrated questionable or unacceptable internal consistency and problematic ceiling effects. The DePaul Symptom Questionnaire demonstrated excellent internal reliability, and less than 5% of participants were at the ceiling on each subscale. The post-exertional malaise subscale on the DePaul Symptom Questionnaire demonstrated excellent clinical utility as it was able to differentiate between ME/CFS patients and controls (OR = 1.23, p < .001), and predict ceiling effects on other patient reported outcome subscales. A score of 20 on the post-exertional malaise subscale of the DePaul Symptom Questionnaire optimally differentiated between patients and controls. Conclusions Significant ceiling effects and concerns with reliability and validity were observed among Multidimensional Fatigue Inventory-20 and RAND SF-36 subscales for ME/CFS patients. The DePaul Symptom Questionnaire addresses a number of concerns typically identified when using patient reported outcome measures with ME/CFS patients; however, an improved multidimensional patient reported outcome tool for measuring ME/CFS-related symptoms is warranted.

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Diagnostic Methods for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Systematic Review for a National Institutes of Health Pathways to Prevention Workshop

Cited by 72 publications

References 64 publications

Health care resource use by patients before and after a diagnosis of chronic fatigue syndrome (CFS/ME): a clinical practice research datalink study

Health care resource use by patients before and after a diagnosis of chronic fatigue syndrome (CFS/ME): a clinical practice research datalink study

Trends in the incidence of chronic fatigue syndrome and fibromyalgia in the UK, 2001–2013: a Clinical Practice Research Datalink study

The utility of patient-reported outcome measures among patients with myalgic encephalomyelitis/chronic fatigue syndrome

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