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Case definitions for chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME): a systematic review
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  • Published on:
    The effect of different criteria on outcomes in ME/CFS trials

    The authors discuss the PACE Trial: "Hence, primary studies and systematic reviews on prognosis and therapy are alternative sources to evaluate the usefulness of different case definitions of CFS/ME. We have identified only one such publication, the PACE trial.(1) Here, participants were diagnosed according to the Oxford- 1991 criteria, Empirical criteria-2007/Reeves and London ME-1994/National Task Force criteria, and th...

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    Conflict of Interest:
    None declared.
  • Published on:
    Conclusions Unsupported by the Evidence

    I read the systematic review by Brurberg et al. (1) with great interest, and found it particularly timely in light of the Institute of Medicine study to create new diagnostic criteria for ME/CFS. (2) However, I believe that Brurberg and colleagues drew several conclusions that were unsupported by their analysis.

    First, the authors stated, "We found no empirical evidence supporting the hypothesis that some case...

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    Conflict of Interest:
    None declared.
  • Published on:
    Inconsistencies, contradictions and controversies within the field of CFS/ME

    The review of chronic fatigue syndrome / myalgic encephalomyelitis (CFS/ME) case definitions by Brurberg et al. (2014) [1] reflects the inconsistencies, contradictions and controversies that are commonly witnessed within the field of CFS/ME.

    Brurberg et al. note that the quantity of high quality and consistent research for CFS/ME is sparse which raises a question in relation to the value of a systematic review o...

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    Conflict of Interest:
    None declared.
  • Published on:
    Re:Re:High rates of deterioration following graded exercise therapy and cognitive behavioural therapy have been reported in patient surveys

    I would like to thank the authors for replying to my e-letter (1). However, I do not believe they have justified their claim. They say: "Where we claim that evidence indicates that the side effects of cognitive behavioural treatment or graded exercise therapy are negligible, it is with references to other systematic reviews and trials." Firstly, it should be pointed out that important harms-related data is often derived...

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    Conflict of Interest:
    None declared.
  • Published on:
    Research into biomedical mechanisms of disease is essential

    In a review of case definitions for chronic fatigue syndrome / myalgic encephalomyelitis (CFS/ME) Brurberg et al. (2014) claim (without providing evidence to support their assertion) that patient groups and researchers who believe that ME is an organic illness have "damaged the research and practice for patients suffering from CFS/ME". Brurberg et al. then proceed to discuss the potential of psychological therapies as a...

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    Conflict of Interest:
    None declared.
  • Published on:
    Re:Case definitions for ME or CFS reflect instability, confusion and contestation inherent in the field.
    • Kjetil G. Brurberg, Researcher
    • Other Contributors:
      • Marita S. Fonhus, Lillebeth Larun, Signe Flottorp, and Kirsti Malterud

    We have read Angela P. Kennedys response on our review (1) with interest. Some of the issues she rises are covered by our previous comments/responses. Moreover, we disagree with the statement that problems of validity remain no matter how much "empirical" research is done. Research regarding etiology, prognosis and therapy is important to increase our knowledge about CFS/ME, this also implies a need to validate and compa...

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    Conflict of Interest:
    None declared.
  • Published on:
    Re:Re:The essence of ME vs CFS: post-exertional "malaise" vs fatigue
    • Kjetil G. Brurberg, Researcher
    • Other Contributors:
      • Marita S. Fonhus, Lillebeth Larun, Signe Flottorp and Kirsti Malterud

    We have read Simpson's response on our review (1) with interest and find it timely to provide some clarifications. We recognize that some patients, patient groups, health professionals and researchers consider ME as an organic disease only. The aim of our study was not to negate this hypothesis. Yet, our synthesis of the evidence regarding ways of diagnosing CFS/ME did not provide support for the idea that it is possible...

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    Conflict of Interest:
    None declared.
  • Published on:
    Re:The essence of ME vs CFS: post-exertional "malaise" vs fatigue
    • Kjetil G. Brurberg, Researcher
    • Other Contributors:
      • Marita S. Fonhus, Lillebeth Larun, Signe Flottorp and Kirsti Malterud

    We are pleased to note that Frank N.M. Twisk concludes that our review and analysis (1) has yielded useful insights. We believe that introducing new diagnostic criteria without subjecting them to a satisfactory validation process will cause unnecessary confusion and disagreement. We recommend that more effort should be focused at exploring and refining existing case definitions in methodologically rigorous ways rather th...

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    Conflict of Interest:
    None declared.
  • Published on:
    Re:People with a label of ME remain ill because they *are* ill
    • Kjetil G. Brurberg, Researcher
    • Other Contributors:
      • Marita S. Fonhus, Lillebeth Larun, Signe Flottorp and Kirsti Malterud

    We appreciate Nasim Marie Jafry's interest in our review (1) and this opportunity to respond. First, we have no doubt that people with ME really are ill, and we agree that it is a relief for most people with severe symptoms to get at diagnosis. We also acknowledge that the average results of studies of many patients do not necessarily fit with the experience of every single patient.

    Second, one way to validate dia...

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    Conflict of Interest:
    None declared.
  • Published on:
    Re:Confusion re criteria for ME
    • Kjetil G. Brurberg, Researcher
    • Other Contributors:
      • Marita S. Fonhus, Lillebeth Larun, Signe Flottorp and Kirsti Malterud

    We appreciate Dr. Goudsmit's interest in our paper (1) and thank her for pointing out a potential confusion. The revised 2009 criteria could have been included in the list of list of existing case definitions had we identified them. Nonetheless, our main objective was to demonstrate that it is possible to validate diagnostic studies, even in the absence of a reference standard and to summarize existing validation studies....

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    Conflict of Interest:
    None declared.
  • Published on:
    Re:High rates of deterioration following graded exercise therapy and cognitive behavioural therapy have been reported in patient surveys
    • Kjetil G. Brurberg, Researcher
    • Other Contributors:
      • Marita S. Fonhus, Lillebeth Larun, Signe Flottorp and Kirsti Malterud

    We want to thank Tom P. Kindlon for his interest in our article (1). Our review is not aimed at summarizing what is known about the effects of various interventions, but to identify existing diagnostic criteria for CFS/ME and studies aimed at validating them. In the absence of a reference test we agree with Reitsma et al (2) that diagnostic criteria can be validated and compared by relating them to clinical data such as h...

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    Conflict of Interest:
    None declared.
  • Published on:
    Case definitions for ME or CFS reflect instability, confusion and contestation inherent in the field.

    There are a number of issues raised by this review:

    1. There are a large amount of CFS (and/or ME) case definitions/criteria, some of which were actually left out in this review, and this situation likely reflects the instability, confusion and contestation inherent in the field. A key and worrying problem with reviews such as these is the inability to critically analyse this crucial and highly problematic pheno...

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    Conflict of Interest:
    None declared.
  • Published on:
    Re:The essence of ME vs CFS: post-exertional "malaise" vs fatigue

    In Brurberg et al, BMJ 7 February 2014 "Case definitions for chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME): a systematic review" the authors make the following comment:

    "Psychological treatments are often helpful also for clear-cut somatic disorders. Unfortunately, patient groups and researchers with vested interests in the belief that ME is a distinct somatic disease seem unwilling to leave the p...

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    Conflict of Interest:
    None declared.
  • Published on:
    The essence of ME vs CFS: post-exertional "malaise" vs fatigue
    With interest I have taken knowledge of the facts presented by Brurberg and colleagues in BMJ Open 1 with regard to the case definitions and prevalences of Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS).

    However, the conclusion to give low priority to development and/or refinement of (new) case definitions of CFS (CFS/ME) are incompatible with the usefulness of classification of patients according to...
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    Conflict of Interest:
    None declared.
  • Published on:
    People with a label of ME remain ill because they *are* ill

    I read the following statement with interest: 'A study comparing the prognosis of different diagnostic labels of fatigue found that patients with ME had the worst prognosis while patients with postviral fatigue syndrome had the best.61 This could mean that the patients destined to the worst prognosis were labelled with the ME diagnosis, or it might be explained as an adverse effect of being labelled with ME.'

    Th...

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    Conflict of Interest:
    None declared.
  • Published on:
    Confusion re criteria for ME

    Brurberg et al's analysis of the various criteria for ME/CFS is timely and important[1]. However, the information about the 'London' criteria for classic ME is misleading and they missed the more recent, updated case definition [2]. The 'London' criteria (LC) devised by Dowsett et al were not published in the Taskforce Report. The latter reproduced a rewritten version by an unknown person which missed the last part of th...

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    Conflict of Interest:
    None declared.
  • Published on:
    High rates of deterioration following graded exercise therapy and cognitive behavioural therapy have been reported in patient surveys

    I question the authors' claim that "existing evidence indicates that side effects of cognitive behavioural treatment or graded exercise therapy are negligible" (1).

    I reviewed various myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) patients surveys from different countries and found that 51% of survey respondents (range 28-82%, n=4338, 8 surveys) reported that graded exercise therapy (GET) worsened th...

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    Conflict of Interest:
    None declared.