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Chronic fatigue syndrome and an illness-focused approach to care: controversy, morality and paradox
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  • Published on:
    Sharp & Greco want us to abandon science

    Sharp & Greco state: "This new approach assumes that the reality of illness has a complex and indeterminate character".

    If by this they mean that the cause of any given illness cannot in principle be determined - as I suspect they are - then it is clear that they are abandoning the scientific enterprise. We ask Sharp and Greco: do they say illness is an effect? If they do then ipso facto they concede it has a cause or causes, and it is the task of science, in the broadest sense, to elucidate those causes.

    And if they say illness is not an effect then they implicitly deny causality anywhere in the universe, which is obviously fatal to science. Furthermore, in so doing they are guilty of the ultimate hubris, that of claiming omniscience, since only an omniscient being could could assert that illness has no cause.

    Alternatively, perhaps Sharp and Greco would say that illness is an effect but we cannot know the cause. Yet this is self-contradictory, because in order to know that illness is an effect they would have to know something about its cause - otherwise, how could they know that it is indeed an effect?

    Conflict of Interest:
    None declared.
  • Published on:
    Science, physiology and clarification of misleading terms

    The view held by these authors that chronic fatigue syndrome is an illness without disease is at odds with the findings of the National Academy of Science, physiological and bio-medical researchers worldwide.
    The authors do not explain how their "illness without disease" model, explains the cardinal symptoms of CFS i.e. post exertional malaise/orthostatic intolerance/sleep disturbances/ cognitive issues, all of which can be objectively monitored and measured.
    Nor, do the authors explain how their "illness without disease" model explains physiological abnormalities seen in CFS, such as the reduction in the ability to generate energy on a second CPET test, carried out 24 hours after an initial test. Often called a 2-day CPET, this protocol and publications on other physiological abnormalities seen in people with CFS and can be found in the Workwell Foundation's online resources. The inability to generate energy has not been documented in healthy persons or those with any other diseases, to date and appears to be a finding that is unique to people with CFS.
    Further, the article does not clarify that the form of CBT rejected by patients, is the unique form of CBT such as described in the PACE trial manuals. The PACE manuals describe a CBT in which patients with CFS are taught that their physical symptoms, are purely psychological and are to be ignored, despite the lack of objective improvements in persons doing PACE style CBT, a...

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    Conflict of Interest:
    None declared.
  • Published on:
    Philosophy misses the point

    There is at least one basic mistake in the article by Sharpe and Greco: CBT and GET do not successfully treat ME/CFS for the majority of patients. The research supporting CBT and GET has been discredited by a large number of academics and scientists1. Patient surveys indicate that pacing is the most effective management for ME/CFS2. Therefore, the arguments about paradox and morality become meaningless.
    1. Vink M (2016) The PACE Trial Invalidates the Use of Cognitive Behavioral and Graded Exercise Therapy in Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome: A Review. J Neurol Neurobiol 2(3): doi 7150.124
    2. Kirke KD PACE investigators’ response is misleading regarding patient survey results Journal of Health Psychology 2017, Vol. 22(9) 1168–1176

    Conflict of Interest:
    None declared.
  • Published on:
    More science and less philosophy is needed

    At the heart of Sharpe and Greco’s article lies the complaint that while cancer patients accept CBT/GET treatments for their fatigue, ME/CFS patients reject these treatments. Of course they do! ME/CFS patients have a different disease, the main feature of which makes them unable to increase exertion.

    The article contains several omissions and misinterpretations:

    a.) Sharpe and Greco argue strenuously that it is acceptable, even beneficial, for ME/CFS to be considered an illness-without-disease, ignoring its recognition as a disease by the WHO in 1969 and by the then Institute of Medicine in 2015 (1). They appear to expect the illness-without-disease state to be inescapable, ignoring or dismissing the serious abnormalities discovered by biomedical research (2). These have been found even before the allocation of research resources which would be commensurate with the burden and complexity the of disease. Would they have said the same about multiple sclerosis which came to be regarded as an illness-with-disease once a diagnostic technique was discovered? (I assume that the authors use the terms ME and CFS interchangeably although they do not clarify this. If this assumption is incorrect I await clarification.)

    b.) Fatigue is not the sole or most important symptom of ME/CFS as implied in the paper and so a discussion based purely on this symptom is misleading. The distinguishing feature of ME/CFS is post-exertional malaise, which is not mentio...

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    Conflict of Interest:
    None declared.