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MAGICAL MEDICINE: HOW TO MAKE AN ILLNESS ... - Invest in ME

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Wessely School members have long been charged with misus<strong>in</strong>g science to support their particular bias.<br />

40<br />

For example, <strong>in</strong> 2003, <strong>in</strong> the spirit of correct<strong>in</strong>g mis<strong>in</strong>formation Dr L<strong>in</strong>da Goodloe, a biopsychologist,<br />

commented on a paper that was co‐authored by Trudie Chalder (Illness perceptions and levels of disability<br />

<strong>in</strong> patients with chronic fatigue syndrome and rheumatoid arthritis. R. Moss‐Morris et al. J Psychosom Res<br />

2003:55:4:305‐308): “This study is an exceptional example of misus<strong>in</strong>g science to support a particular<br />

bias…Biased assumptions permeate both the design and <strong>in</strong>terpretation of data of this study…The bias is not subtle and<br />

appears <strong>in</strong> every step of the analysis. However the ma<strong>in</strong> fault is <strong>in</strong> the design of the experiment. To even beg<strong>in</strong> to<br />

discuss differences <strong>in</strong> ‘perceived disability’ between groups, the authors would have to f<strong>in</strong>d some way of controll<strong>in</strong>g for<br />

any symptom differences, and this study doesn’t even mention that there ARE any symptom differences, much less<br />

factor<strong>in</strong>g them <strong>in</strong>to the design. Symptom differences between these groups is such a huge source of error that it makes<br />

us<strong>in</strong>g these differences to make <strong>in</strong>ferences about psychological states bizarre. There is noth<strong>in</strong>g <strong>in</strong> the design of the<br />

experiment or the data to justify even float<strong>in</strong>g the suggestion that the perceptions of the (<strong>ME</strong>)CFS group are<br />

less valid or less grounded <strong>in</strong> reality than those of the RA group. The authors ignored the large body of<br />

knowledge, the documented f<strong>in</strong>d<strong>in</strong>gs of irregularities <strong>in</strong> assorted (immunological, neurological, hormonal,<br />

gastro<strong>in</strong>test<strong>in</strong>al etc) systems <strong>in</strong> those with (<strong>ME</strong>)CFS that are not shared with RA subjects. However, the bottom l<strong>in</strong>e is<br />

that even without the biased <strong>in</strong>terpretations, the methodology doesn’t meet even the most m<strong>in</strong>imally acceptable<br />

standards” (Co‐Cure ACT: 23 rd September 2003).<br />

Other illustrations <strong>in</strong>clude the follow<strong>in</strong>g:<br />

The study by Sue Butler, Trudie Chalder, Maria Ron and Simon Wessely (JNNP: 1991:54:153‐158) was<br />

remarkable for its <strong>in</strong>explicably high refusal and drop‐out rates, lack of a control group and no <strong>in</strong>dependent<br />

assessment of outcome; it was criticised <strong>in</strong> a Cochrane Review on CBT for CFS (2000: issue 4) for its poor<br />

scientific quality and for not exclud<strong>in</strong>g medical causes of fatigue; furthermore the design failed to permit the<br />

effects of concurrent antidepressant therapy to be satisfactorily dist<strong>in</strong>guished from purely psychological<br />

treatments (with grateful acknowledgement to David Sampson and to Dr Charles Shepherd for the analysis<br />

which was taken from his book “Liv<strong>in</strong>g with <strong>ME</strong>”).<br />

The above study would be of little <strong>in</strong>terest were it not for the fact that <strong>in</strong> the orig<strong>in</strong>al study there was an<br />

unacceptably high refusal and drop‐out rate, whilst an almost identical study published <strong>in</strong> 1997 by the same<br />

authors showed these rates to be much lower (American Journal of Psychiatry 1997:154:408‐414).<br />

In this 1997 study of 60 patients, half received CBT <strong>in</strong> the form of “graded activity and cognitive restructur<strong>in</strong>g”<br />

and half received “relaxation”. The authors stated: “CBT is used to modify behaviours and beliefs that may<br />

ma<strong>in</strong>ta<strong>in</strong> disability and symptoms”. Three subjects withdrew from the CBT group and four withdrew from the<br />

relaxation group. The authors stated that at f<strong>in</strong>al follow‐up (six months after the course of CBT and<br />

relaxation completed), 19 patients “achieved good outcomes compared with 5 patients <strong>in</strong> the relaxation group”.<br />

Somatisation disorder and severe depression were cited as exclusion criteria; n<strong>in</strong>e participants, however,<br />

were described as hav<strong>in</strong>g ‘major depression’ and there were high levels of exist<strong>in</strong>g psychiatric morbidity <strong>in</strong><br />

the study cohort. Outcome measures were said to relate to “subjectively experienced fatigue and mood<br />

disturbance, which are the areas of <strong>in</strong>terest <strong>in</strong> chronic fatigue syndrome”. This statement alone <strong>in</strong>dicates that the<br />

study cannot have been consider<strong>in</strong>g people with <strong>ME</strong>/CFS because neither “fatigue” (or “tiredness”) nor<br />

mood disturbance is a def<strong>in</strong><strong>in</strong>g feature of <strong>ME</strong>/CFS (the def<strong>in</strong><strong>in</strong>g feature of <strong>ME</strong>/CFS be<strong>in</strong>g post‐exertional<br />

muscle fatigability with malaise).<br />

Of concern is the fact that the authors stated: “The aim was to show patients that activity could be <strong>in</strong>creased<br />

steadily and safely without exacerbat<strong>in</strong>g symptoms”. That is a remarkable statement. It demonstrates that the<br />

authors had decided ‐‐ <strong>in</strong> advance of the outcome ‐‐ that activity could be <strong>in</strong>creased without exacerbat<strong>in</strong>g<br />

symptoms. This is not merely the authors’ hypothesis: that this will be the outcome is taken for granted. Of<br />

note is the fact that the outcome did not meet the authors’ certa<strong>in</strong>ty, and the authors had to concede that:<br />

“cognitive behaviour therapy was not uniformly effective: a proportion of patients rema<strong>in</strong>ed fatigued and<br />

symptomatic”. Perhaps for this reason, the presentation of results was mostly reported as averages, rather

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