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

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8<br />

Undaunted, these psychiatrists then asserted that the WHO itself had classified the same disorder <strong>in</strong> two<br />

places <strong>in</strong> ICD‐10, once <strong>in</strong> the Neurological Section (G93.3) and also <strong>in</strong> the Mental (Behavioural) Section<br />

(F48.0).<br />

Once aga<strong>in</strong>, the psychiatrists’ claims were repudiated by the WHO, who on 23 rd January 2004 confirmed <strong>in</strong><br />

writ<strong>in</strong>g: “Accord<strong>in</strong>g to the taxonomic pr<strong>in</strong>ciples govern<strong>in</strong>g ICD‐10, it is not permitted for the same<br />

condition to be classified to more than one rubric”.<br />

The WHO further confirmed that this means that <strong>ME</strong>/CFS cannot be known as or <strong>in</strong>cluded with<br />

neurasthenia or any other mental or behavioural disorder, as <strong>ME</strong>/CFS is a dist<strong>in</strong>ct nosological disorder.<br />

Wessely, however, does not agree: he believes that <strong>ME</strong> is a behavioural disorder and that patients’ ascription<br />

of the disease to a virus is “somatisation par excellence” (see below).<br />

It is Professor Wessely who is <strong>in</strong> charge of the MRC PACE Cl<strong>in</strong>ical Trial Unit.<br />

There is a significant amount of documented <strong>in</strong>ternational concern about the Wessely School’s stance and<br />

the harm it might do to patients.<br />

Another curious factor about the PACE Trial is the role played by one of the patients’ charities (Action for<br />

<strong>ME</strong>), without whose help the PACE Trial might never have happened – see below. It is a Government‐<br />

funded charity, hav<strong>in</strong>g received substantial Section 64 fund<strong>in</strong>g (Health Services Act 1968) <strong>in</strong> return for<br />

support<strong>in</strong>g DoH policy priorities (which currently <strong>in</strong>clude manag<strong>in</strong>g “CFS/<strong>ME</strong>” as a behavioural disorder).<br />

Good science requires that hypotheses are tested <strong>in</strong> an objective manner, but there are many disturb<strong>in</strong>g<br />

aspects about the MRC PACE Trial.<br />

Given that the <strong>Invest</strong>igators have already formed their belief that “CFS/<strong>ME</strong>” is a behavioural disorder, it is<br />

troubl<strong>in</strong>g to observe how they seem to have allowed their beliefs to underm<strong>in</strong>e the objectivity of the trial:<br />

• participants were to be chosen us<strong>in</strong>g criteria designed by the <strong>Invest</strong>igators themselves rather than<br />

us<strong>in</strong>g criteria accepted by the <strong>in</strong>ternational medical community<br />

• the <strong>Invest</strong>igators’ criteria were f<strong>in</strong>ancially supported by the Chief <strong>Invest</strong>igator himself<br />

• the <strong>Invest</strong>igators abandoned their <strong>in</strong>tention to use any objective measurements of outcome and will<br />

def<strong>in</strong>e the self‐reported outcome measures us<strong>in</strong>g a scale devised by themselves (which has been<br />

described as “a parody of modern scientific measurement” – see below)<br />

• the <strong>Invest</strong>igators have even redef<strong>in</strong>ed the mean<strong>in</strong>g of the word “recovery” – see below.<br />

The <strong>Invest</strong>igators have received millions of pounds sterl<strong>in</strong>g to carry out this trial, even though they already<br />

know the answers and they have publicly acknowledged that for <strong>ME</strong>/CFS patients their psychotherapy<br />

<strong>in</strong>terventions are not remotely curative and that many patients do not benefit from them – see below.<br />

Part of the Trial therapists’ tra<strong>in</strong><strong>in</strong>g appears to <strong>in</strong>clude mislead<strong>in</strong>g participants: therapists are told to assure<br />

participants they believe their illness is “real” and to show empathy, whilst also be<strong>in</strong>g <strong>in</strong>formed <strong>in</strong> their<br />

tra<strong>in</strong><strong>in</strong>g that there is no underly<strong>in</strong>g pathology <strong>in</strong> “CFS/<strong>ME</strong>”, so there is one message for the therapists and<br />

another for participants.<br />

Therapists and research nurses must achieve “positive relationships” with participants. Research Nurses<br />

(RNs) “will be selected and tra<strong>in</strong>ed to achieve positive relationships with participants. In addition to see<strong>in</strong>g them for a<br />

m<strong>in</strong>imum of 5 times <strong>in</strong> 52 weeks, we will use techniques commonly employed <strong>in</strong> cohort studies to ma<strong>in</strong>ta<strong>in</strong><br />

participation” (Trial Protocol, f<strong>in</strong>al version 5.0, 01.02.2006). This <strong>in</strong>volves send<strong>in</strong>g birthday cards to<br />

participants <strong>in</strong> order to create an illusion of “warmth” and of “empathy” that is <strong>in</strong>tended to elicit positive

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