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

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42<br />

attack<strong>in</strong>g ungrateful patients: “Many sufferers are bitterly opposed to (CBT), argu<strong>in</strong>g that their condition is<br />

physical, not psychological. ‘Many patients have a personality which h<strong>in</strong>ders recovery’. ‘<strong>ME</strong> is an escape<br />

route for the middle classes’ claimed one psychiatrist”. What was not made public was the fact that Rob<br />

Stepney’s wife was one of the Oxford therapists <strong>in</strong>volved with the trial.<br />

On 30 th March 1996 The Independent published a letter from a trial participant (Cather<strong>in</strong>e Rye): “I am a<br />

sufferer and participated <strong>in</strong> the trial. The article implies that a new successful treatment has been found for <strong>ME</strong> but<br />

that sufferers do not want to accept it. There are facts about the trial that throw <strong>in</strong>to doubt how successful it is. It is<br />

stated that patients <strong>in</strong> the control group received standard medical care. I was <strong>in</strong> that group but I received<br />

noth<strong>in</strong>g. Patients who ‘improved significantly’ only <strong>in</strong>creased their score from 70 to 80 on a scale of general<br />

functional ability”.<br />

Despite hav<strong>in</strong>g to acknowledge the fact that few patients reported resolution of symptoms, the authors<br />

nevertheless asserted: “The results show that a return to normal function<strong>in</strong>g is possible <strong>in</strong> most cases. We<br />

believe that our results have important implications for the management of patients with chronic disabl<strong>in</strong>g<br />

fatigue”.<br />

Once aga<strong>in</strong>, Wessely School psychiatrists seemed determ<strong>in</strong>ed to confuse chronic disabl<strong>in</strong>g fatigue with<br />

<strong>ME</strong>/CFS. The <strong>ME</strong> Association’s Medical Advisor wrote on 18 th January 1996 <strong>in</strong> The Times: “Although 22<br />

patients out of 30 <strong>in</strong> the Oxford trial of CBT achieved an improvement of approximately 10% <strong>in</strong> their disability rat<strong>in</strong>g<br />

after a year, the only other two controlled trials of CBT to be published found no benefit from this fashionable form of<br />

short‐term psychotherapy. The <strong>ME</strong> Association believes that the results so far obta<strong>in</strong>ed do need to be viewed with a<br />

considerable degree of caution”.<br />

Notwithstand<strong>in</strong>g, the Sharpe et al study forms the “best practice evidence‐base” for NICE’s<br />

recommendation of CBT for all patients with “CFS/<strong>ME</strong>” <strong>in</strong> the UK, <strong>in</strong>clud<strong>in</strong>g those with <strong>ME</strong>/CFS.<br />

Another of the PACE Trial Chief <strong>Invest</strong>igator’s studies merits consideration (Lancet 2001:358:9297:1946‐<br />

1953). This study calls <strong>in</strong>to question the validity of the broad‐based def<strong>in</strong>itions such as the Oxford criteria,<br />

largely because the Oxford criteria <strong>in</strong>clude patients with mood disorders, which makes any conclusions<br />

about <strong>ME</strong>/CFS per se virtually impossible.<br />

In White’s 2001 study, fatigue syndromes were classified <strong>in</strong>to three groups and participants were selected<br />

accord<strong>in</strong>g to (i) White’s own empirically def<strong>in</strong>ed fatigue syndrome (Psychological Medic<strong>in</strong>e 1995:25(5):917‐<br />

924), (ii) the Oxford criteria and (iii) the CDC 1994 Fukuda criteria.<br />

White et al had hypothesised that a previous psychiatric history and/or social adversity would predict all<br />

three def<strong>in</strong>itions of fatigue syndromes on the basis of the “psychosomatic” model of “CFS/<strong>ME</strong>”, but he<br />

found that neither univariate nor logistic regression analyses supported his hypothesis and that the<br />

strongest predictor for develop<strong>in</strong>g a fatigue syndrome follow<strong>in</strong>g <strong>in</strong>fectious mononucleosis was a positive<br />

Monospot result (ie. evidence of <strong>in</strong>fection).<br />

However, White concluded that the most likely explanation for the lack of correlation between previous<br />

psychiatric morbidity and an empirically def<strong>in</strong>ed fatigue syndrome was: “that we studied participants <strong>in</strong> the<br />

first six months of their illness, whereas most previous studies observed patients several years after onset….This<br />

explanation would fit <strong>in</strong> with the hypothesis that psychosocial factors are unimportant <strong>in</strong> a fatigue syndrome of several<br />

months duration but may become more important with time”.<br />

White’s explanation, however, is not supported by his data.<br />

White ignored one critical fact: all his fitness measurements were made after diagnosis, so he could have<br />

had no idea of how fit (or how deconditioned) participants were before they became ill, s<strong>in</strong>ce patients may<br />

become deconditioned when they develop a fatigue syndrome, but this does not mean that such

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