The long wait for a breakthrough in chronic fatigue syndrome

Lloyd, Andrew R.; Meer, J.W.M. van der

doi:10.1136/bmj.h2087

Cited by 11 publications

(9 citation statements)

References 19 publications

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“…Ideally this would be accomplished by means of a large long-term prospective cohort study with deep phenotyping of participants, including repeated measurements of symptoms, biological markers, psychological states, and objective measures of health and function. The sample size for such studies could be reduced by following patients who have an acute infectious illness, given that CFS/ME will be triggered in a fairly constant proportion of patients [31]. However, these patients will not represent all patients who develop CFS/ME if the illness is triggered by other events.…”

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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“…31 We would expect that a substantial proportion (if not all) PVFS cases should have been classified as CFS/ME. Viral infections are known to trigger CFS/ ME, 32 and fatigue of !4 months' duration after the acute phase of an infection has passed should, according to NICE criteria, warrant consideration for a diagnosis of CFS/ME. 8 Towards the end of our study period, this reclassification would increase the incidence of CFS/ME by around 50%, but the trend in CFS/ME diagnoses would still be downwards.…”

Section: Strengths and Limitations Of The Studymentioning

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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“… 9 In the absence of a clear understanding of the underlying pathophysiology of CFS, or curative treatments, as these are the only evidence-based interventions aimed at managing symptoms and improving function, they should be readily available. 10 Yet uptake of evidence-based CFS management programmes delivered by allied health professionals such as psychologists, exercise physiologists and physiotherapists is low. 11 12 Recent studies have shown that gaps between research and practice are at least partially due to allied health professionals lacking the knowledge and skills to provide appropriate care, 13 14 and potentially also the effects of the controversy regarding the PACE (Pacing, graded Activity, and Cognitive behaviour therapy; a randomised Evaluation) trial analysis.…”

Section: Introductionmentioning

confidence: 99%

Randomised controlled trial of online continuing education for health professionals to improve the management of chronic fatigue syndrome: a study protocol

Sandler

Casson

et al. 2017

BMJ Open

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IntroductionChronic fatigue syndrome (CFS) is a serious and debilitating illness that affects between 0.2%–2.6% of the world’s population. Although there is level 1 evidence of the benefit of cognitive behaviour therapy (CBT) and graded exercise therapy (GET) for some people with CFS, uptake of these interventions is low or at best untimely. This can be partly attributed to poor clinician awareness and knowledge of CFS and related CBT and GET interventions. This trial aims to evaluate the effect of participation in an online education programme, compared with a wait-list control group, on allied health professionals’ knowledge about evidence-based CFS interventions and their levels of confidence to engage in the dissemination of these interventions.Methods and analysisA randomised controlled trial consisting of 180 consenting allied health professionals will be conducted. Participants will be randomised into an intervention group (n=90) that will receive access to the online education programme, or a wait-list control group (n=90). The primary outcomes will be: 1) knowledge and clinical reasoning skills regarding CFS and its management, measured at baseline, postintervention and follow-up, and 2) self-reported confidence in knowledge and clinical reasoning skills related to CFS. Secondary outcomes include retention of knowledge and satisfaction with the online education programme. The influence of the education programme on clinical practice behaviour, and self-reported success in the management of people with CFS, will also be assessed in a cohort study design with participants from the intervention and control groups combined.Ethics and disseminationThe study protocol has been approved by the Human Research Ethics Committee at The University of New South Wales (approval number HC16419). Results will be disseminated via peer-reviewed journal articles and presentations at scientific conferences and meetings.Trial registrationACTRN12616000296437.

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The long wait for a breakthrough in chronic fatigue syndrome

Abstract: Not over yet

Cited by 11 publications

References 19 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

Randomised controlled trial of online continuing education for health professionals to improve the management of chronic fatigue syndrome: a study protocol

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