Angela Kennedy has written about this paper in other forums. This paper is not necessarily good news for sufferers:
"PERMISSION TO REPOST
This is a comment on one key aspect of the following article:
http://www.biomedcentral.com/1471-2458/9/458
National M.E Observatory project - first report
15 December 2009
"The self-expressed needs of people with Chronic Fatigue Syndrome/Myalgic
Encephalomyelitis"
De Lourdes et al...
In the 'strengths and limitations of the review' section, on page 17 of the provisional PDF, 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, for example?), 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*) This could potentially result in increased 'neediness' in those with CFS/ME but would not invalidate those needs..."
(* Editorial by Boudewijn Van Houdenhove, 'Listening to CFS: Why we should pay more attention to the story of the patient' Journal of Psychosomatic Research 52 (2002) 495-499.)
Van Houdenhove's account is immersed in psychogenic explanations for 'CFS/ME', based on a concept of 'unexplained therefore psychogenic by default', personality problems (including a 'narcisssistic tendency to deny personal limits; a negative perfectionist attitude induced by overcritical parents" etc.) and somatic symptoms as resulting from 'intrapsychic conflict.' (This is only a few examples of the eclectic mix of alleged psychopathology in the patient according to Van Houdenhove: significantly, organic aetiology as an explanation is signficant by its absence.)
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, HIV, 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 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 have led to CFS/ME patients, once again, being reduced to strange, needy personalities with mean parents, who feel somatic symptoms because they are like that."
:Retro smile:
