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

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aberrant behaviour that is amenable to cognitive restructur<strong>in</strong>g and exercise, a notion that the PACE Trial<br />

seems designed to support.<br />

The MRC PACE Trial Pr<strong>in</strong>cipal <strong>Invest</strong>igators<br />

There are three PACE Trial Pr<strong>in</strong>cipal <strong>Invest</strong>igators and all are mental health professionals. Why two<br />

psychiatrists (Professors Peter White and Michael Sharpe) and a behavioural therapist (Professor Trudie<br />

Chalder, a former mental nurse who works with Wessely and who is now Professor of Behavioural<br />

Psychotherapy) should be <strong>in</strong> charge of an MRC cl<strong>in</strong>ical trial relat<strong>in</strong>g to <strong>ME</strong>/CFS, a neurological disease, is ‐‐<br />

like so much to do with this trial ‐‐ a matter open to conjecture. Professors White, Sharpe and Chalder all<br />

have fixed beliefs about patients with “CFS/<strong>ME</strong>” which rema<strong>in</strong> un<strong>in</strong>fluenced by the substantial biomedical<br />

evidence that proves their beliefs to be seriously mis<strong>in</strong>formed.<br />

The Pr<strong>in</strong>cipal <strong>Invest</strong>igators’ <strong>in</strong>sistence that no <strong>in</strong>vestigations should be done to def<strong>in</strong>e the “CFS/<strong>ME</strong>” patient<br />

population seems to re<strong>in</strong>force the prevalent perception that they are conduct<strong>in</strong>g research that will deliver<br />

their <strong>in</strong>tended outcome.<br />

Professor Peter White is the PACE Trial Chief <strong>Invest</strong>igator.<br />

Peter White has long been determ<strong>in</strong>ed to carry out such a trial: on 2 nd March 1989 he wrote to Dr DA Rees,<br />

the then–Secretary of the MRC, say<strong>in</strong>g: “RESEARCH ON POST‐VIRAL FATIGUE. I understand that the<br />

Medical Research Council may be consider<strong>in</strong>g special grant awards for research <strong>in</strong> this area. If this is the case, I would<br />

like to forewarn you that I shall be look<strong>in</strong>g for fund<strong>in</strong>g for substantive projects to test various hypotheses regard<strong>in</strong>g the<br />

physical and psychological aspects of this putative diagnosis…I will be seek<strong>in</strong>g fund<strong>in</strong>g…(for) a treatment trial of a<br />

graduated return to physical activity and exercise”.<br />

On 10 th April 1989 Dr Kather<strong>in</strong>e Levy from the MRC replied on behalf of Dr Rees, <strong>in</strong>form<strong>in</strong>g Peter White<br />

that he had been mis<strong>in</strong>formed.<br />

However, Peter White persisted, and the PACE Trial is the result.<br />

Peter White seems certa<strong>in</strong> that “CFS/<strong>ME</strong>” is a somatoform disorder. In his chapter on CFS <strong>in</strong> the section<br />

“Psychological Medic<strong>in</strong>e” co‐authored with the late Professor Anthony Clare (Kumar and Clark: “Cl<strong>in</strong>ical<br />

Medic<strong>in</strong>e”, August 2005: pp1281 ff), White states:<br />

“Abnormal illness behaviour occurs when there is a discrepancy between the objective somatic pathology present and<br />

the patient’s response to it…’Functional’ disorders are illnesses <strong>in</strong> which there is no obvious pathology or anatomical<br />

change <strong>in</strong> an organ…The psychiatric classification of these disorders would be somatoform disorders. Examples of<br />

functional disorders (<strong>in</strong>clude) fibromyalgia, chronic or post‐viral fatigue syndrome, multiple chemical sensitivity,<br />

irritable or functional bowel syndrome, irritable bladder syndrome.<br />

“CFS: There has probably been more controversy over the existence and aetiology of CFS than any other functional<br />

syndrome <strong>in</strong> recent years. This is reflected <strong>in</strong> its uncerta<strong>in</strong> classification as neurasthenia <strong>in</strong> the psychiatric<br />

classification and <strong>ME</strong> under neurological disorders….aetiological factors <strong>in</strong>clude physical <strong>in</strong>activity…Immune and<br />

endocr<strong>in</strong>e abnormalities noted <strong>in</strong> CFS may be secondary to the <strong>in</strong>activity…The general pr<strong>in</strong>ciples of management of<br />

functional disorders (<strong>in</strong>clude) cognitive behaviour therapy (to challenge unhelpful beliefs and change cop<strong>in</strong>g strategies)<br />

and graded exercise therapy (to reduce <strong>in</strong>activity and improve fitness). However, few patients regard themselves as<br />

cured after treatment…Outcome is worse with…the conviction that the illness is entirely physical. Perpetuat<strong>in</strong>g<br />

(ma<strong>in</strong>ta<strong>in</strong><strong>in</strong>g) factors <strong>in</strong>clude avoidant behaviours (and) maladaptive illness beliefs”.

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