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Archived Comments for: The expressed needs of people with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: A systematic review

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  1. The 'validity' of patient needs in 'CFS'?

    Angela Kennedy, n/a

    1 February 2010

    This is a comment on one key aspect of the article.

    In the 'strengths and limitations of the review' section, even after providing an account of the impact of the illness on sufferers, including the burdens of disbelief from others, refusal of benefits, social exclusion, and other problems of certain needs not being met (the kind of needs that can reasonably be said to be present in all patients of serious illness?) and presenting such evidence as part of a systematic review at that, the De Lourdes et al paper has this to say:

    "...The review has not examined the validity of the expressed needs of people with CFS. One theory links the early parental environment with neurobiological development via the hypothalmo-pituitary adrenal axis, changing stress responsiveness through life in those with CFS/ME (reference cited by De Lourdes et al is Van Houdenhove, 2002). This could potentially result in increased 'neediness' in those with CFS/ME but would not invalidate those needs..."

    Van Houdenhove's account (an editorial) is immersed in psychogenic explanations for 'CFS/ME', based on a concept of "unexplained therefore considered psychogenic by default", personality problems (including a "narcisssistic tendency to deny personal limits" and "a negative perfectionist attitude induced by overcritical parents" etc.) and somatic symptoms as resulting from "intrapsychic conflict." These are only a few examples of the eclectic mix of alleged psychopathology present in patients according to Van Houdenhove: significantly, organic aetiology as an explanation is signficant by its absence, despite the large amount of research literature demonstrating organic abnormalities in patients given 'CFS' or 'ME' diagnosis.

    De Lourdes et al then go on to state:

    "...As reviewers we have taken the needs expressed by people with CFS/ME at face value - even if their need for support is higher than in others, the needs of people with CFS/ME are expressed very consistently and their accounts of their needs deserve to be heard and responded to..."

    This may seem a laudable sentiment, but by assuming, per se and without substantiation, that somehow 'CFS/ME' patients needs are 'higher' than in other patients with serious chronic illness (for example, Heart disease, AIDS, Motor Neurone Disease, Parkinsons, Multiple Sclerosis, spinal injuries, strokes), rather than the more likely problem that such needs that would be met in those disease sufferers are NOT actually being met in 'CFS/ME' patients - likely due to 'psychogenic dismissal' (Kenneth Vickery, in Mackarness, 1980: xi-xii) , De Lourdes et al are not actually taking the needs expressed by CFS/ME sufferers 'at face value': indeed they are reifying the very assumptions that lead to psychogenic dismissal and its accompanying material and social inequalities for sufferers. By including the Van Houdenhove narrative, without raising the legitimate and rational objections that could be raised to his arguments, the De Lourdes et al comments lead to people diagnosed with 'CFS' or 'ME', once again, being reduced to strange, needy personalities with mean parents, who feel somatic symptoms because they are like that.

    REFERENCES

    Mackarness, R. Chemical Victims (1980) Pan Books, London.

    Van Houdenhove, B. 'Listening to CFS: Why we should pay more attention to the story of the patient' Journal of Psychosomatic Research 52 (2002) 495-499.)

    Competing interests

    Social scientist critically evaluating 'psychogenic' explanations for somatic illnesses. Mother of disabled adult who was given a 'CFS/ME' diagnosis as a child.

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