7 e-Letters

published between 2018 and 2021

  • 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?

  • 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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  • 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 http://dx.doi.org/10.16966/2379- 7150.124
    2. Kirke KD PACE investigators’ response is misleading regarding patient survey results Journal of Health Psychology 2017, Vol. 22(9) 1168–1176

  • 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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  • response to letter re: The Abdication of King Edward VIII: a study of estrangement between and adult son and elderly mother

    Dear Sir:
    I believe that the author of the letter has misread the aim and content of the article. I nowhere implied that the phenomenon of estrangement was limited to disconnections between older parents and their adult children. However, I chose to focus on that segment because of its unique characteristics, namely, the particular suffering of older estranged parents who, in addition to experiencing the expected adversities of aging, must acknowledge that the window of opportunity for reconciliation with their children is narrowing; nor did I state or suggest that loneliness was universally experienced by older people. The article was inspired by my interest in 20th-century British history and by the many examples of estrangement I have seen over the years in my clinical practice, which is concentrated on older patients. Also, I do agree that the term "elderly" has become freighted and rather pejorative, and I no longer use it in articles or other communication. Language always matters, but perceptions of specific words change markedly over time, and I consider it regrettable that such distractions have become overvalued in academic work. These considerations remain within the narrow province of theoretical gerontologists and reside entirely outside the concerns of frontline practitioners, of which I consider myself one.

  • On intersectionality and pain: a response to Kari Campeau

    As a 5th year medical student of Somali origin with a longstanding interest in the intersection of culture and illness, I particularly enjoyed the Editor’s Choice article entitled ‘Adaptive frameworks of chronic pain: daily remakings of pain and care at a Somali refugee women’s health centre’ by Kari Campeau. I was especially impressed by the way in which Campeau captured how one’s distinct racial and religious character can impact the way chronic pain is understood and responded to by one’s self and by others.

    Particularly disheartening was Campeau’s analysis of how these women often suffer exclusionary sentiment within medical spaces and are consequently less inclined to seek medical treatment for their pain. Understandably, for the women in question, visiting the doctor confers an emotional and communicative labour on top of a pre-existing medical complaint, and ultimately may not be ‘worth it’. The philosopher Miranda Fricker describes a ‘testimonial injustice’, which is a form of epistemic prejudice whereby for marginalised people, there is a diminished level of credibility applied to their word. From Campeau’s research, it appears this type of prejudice may have been at play when her participants had interacted with clinicians.

    As to Campeau’s exploration of the intersection between religion and pain, I would disagree that pain is understood through a wholly fatalistic lens among this cohort. Somalis, who are largely Muslim, believe not only in pre-orda...

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  • Ensuring congruence between medical humanities and medicine

    While this paper gives an eloquent description of discord between a mother and son, it is unfortunate that it attempts to characterize it as relating in particular to later life. There is no evidence in the gerontological literature that this is the case, and discord between adult children and their parent occurs and causes distress across the adult lifespan. In the single paper quoted as a reference, the investigators did not sample discord across the lifespan but only reviewed those dyads where the mother was aged 65-75 (1). This is a common failing of much gerontology, and in particular the literature on loneliness, whereby focusing on later life alone not only misses out on opportunities for considering loneliness across the lifespan but also inappropriately characterizes loneliness as a defining characteristic of later life (2).

    In cultural gerontology (3), just as in the medical humanities, it is important that due critical interrogation is given to congruence between the gerontological sciences and the humanistic inquiry, and indeed to appropriate terminology such as avoidance of the term 'elderly'(4).

    1. Gilligan M, Suitor JJ, Pillemer K. Estrangement between mothers and adult children: The role of norms and values. Journal of Marriage and Family. 2015;77:908-20.
    2. O'Neill D. Loneliness. Lancet. 2011;377:812.
    3. O'Neill D. Geriatric medicine and cultural gerontology. Age Ageing. 2015;44:353-5.

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