From the Journal of the Royal Society of Medicine, short reports, January 2013. Open access article.
Views on the nature of chronic fatigue syndrome: content analysis
Zahra Hossenbaccus(1) and Peter D White (2)
(1) Barts and The London School of Medicine and Dentistry, Queen Mary University London, London, UK
(2) Wolfson Institute of Preventive Medicine, Barts and The London School of Medicine and Dentistry, Queen Mary University London, London, UK
Abstract
OBJECTIVES
Chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME), has provoked much controversy and led to arguments between the medical profession and patient organizations. A particular focus for debate is the categorization of the condition as physical or psychological in its nature. The aim of this study was to compare how the written media, patient organizations and medical authorities regard the illness.
DESIGN
Content analysis of newspaper articles, ME patient organization websites, and medical websites and textbooks were assessed by two independent assessors.
SETTING
Three national UK newspapers, UK ME websites, and UK medical websites and textbooks, were accessed during 2010.
PARTICIPANTS
146 source files were scored from 36 patients' organizations, 72 media articles and 38 medical authorities.
MAIN OUTCOME MEASURED
The overall opinion of an article or website was rated using a five point Likert scale, from ‘extremely psychological’ (scored as 1), ‘moderately psychological’ (2), ‘both psychological and physical’ (3), ‘moderately physical’ (4) or ‘extremely physical’ (5).
RESULTS
Eighty-nine percent (32 of 36) of ME patient organizations considered the illness to be physical, compared with 58% (42/72) of newspaper articles, and 24% (9/38) of medical authorities. Sixty-three percent (24/38) of medical authorities regarded the illness as both physical and psychological. The inter-group differences of the Likert scores were statistically significant (χ2 = 27.37, 2 df, P < 0.001).CONCLUSIONThe considerable disagreement, particularly between ME patient organizations and medical authorities, may help to explain the gulf in understanding between doctors and patients and the consequent reluctance of some patients to engage in behavioural treatments.
Do these people actually get paid for this? Going over and over the same old ground. Is there anybody out there with cfs/me who has (engaged in behavioural treatments) which has resulted in recovery or even improvement
“At 12 months, the intervention did not improve HRQL scores, with worse SF-36 physical function and bodily pain scores in the intervention group. Read more>>”:
http://niceguidelines.blogspot.co.uk/2011/02/jan-2011-spanish-study-shows-that-cbt.html
This has the potential to be a useful study (I mean, at least it helps demonstrate to all of the doctors that only get to see the Weasel and friends’ studies that the situation is not quite as clear-cut as it initially seems) but not on its own. It’ll only actually be useful if it sparks a follow-up study that asks WHY there’s such a big gulf between doctors, media and patient perception…and then another study that evaluates the relative worth of the scientific literature available rather than just looking at number of papers published. Because then and only then might we get somewhere with actually changing doctors’ faulty assumptions and expose the Wessely camp for the dangerous illusion it is.
You’ve hit the nail on the head, hal.
No doubt this ‘literature review’ will be counted as a ‘scientific’ paper. Since when did newspaper articles have anything to do with science?
And I wonder how many of the ‘medical websites and textbooks’ were written by White et al?
What this amounts to is “We’ve muddied the waters and now the waters are muddy.” Pass me a PhD!
This was not a literature review and it wasn’t a scientific study.
Re: “The aim of this study was to compare how the written media, patient organizations and medical authorities regard the illness.”
Why…when the illness is officially recognised by the World Health Organisation, our own UK National Health Service and the Department of Work & Pensions?
Who is going to use the information gathered in the report, and for what purpose?
Well, they can include it as part of their “massive list of publications” on CFS, they can cite it and recite it and “up” all their citation counts, and of course, it was cheap and didn’t involve much effort or any thought.