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

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Fraudulent research (Cargo cult science)?<br />

263<br />

Cargo cult science is a term used to describe work that has the semblance of be<strong>in</strong>g scientific, but whilst such<br />

studies follow all the apparent precepts of scientific <strong>in</strong>vestigation, they are miss<strong>in</strong>g someth<strong>in</strong>g essential: they<br />

lack scientific <strong>in</strong>tegrity. Cargo cult scientists conduct flawed research that fails to produce useful results.<br />

Physicist and Nobel Laureate Richard Feynman summarised it thus: “We really ought to look <strong>in</strong>to theories that<br />

don’t work, and science that isn’t science. It’s a matter of scientific <strong>in</strong>tegrity…..although you may ga<strong>in</strong> some<br />

temporary fame and excitement, you will not ga<strong>in</strong> a good reputation as a scientist if you haven’t tried to be very<br />

careful <strong>in</strong> this k<strong>in</strong>d of work. And it’s this type of <strong>in</strong>tegrity, this care not to fool yourself, that is miss<strong>in</strong>g to a large<br />

extent <strong>in</strong> much of the research <strong>in</strong> Cargo Cult Science….the idea is to try to give all of the <strong>in</strong>formation to help others to<br />

judge the value of your contribution; not just the <strong>in</strong>formation that leads to judgment <strong>in</strong> one particular direction”<br />

(Eng<strong>in</strong>eer<strong>in</strong>g and Science: June 1974:10‐13).<br />

The Times Onl<strong>in</strong>e reports disconcert<strong>in</strong>g f<strong>in</strong>d<strong>in</strong>gs about scientific studies: “Fak<strong>in</strong>g scientific data and fail<strong>in</strong>g to<br />

report commercial conflicts of <strong>in</strong>terest are far more common than previously thought, a study suggests”. Dr Daniele<br />

Fanelli of the University of Ed<strong>in</strong>burgh, who carried out the <strong>in</strong>vestigation, says: “Increas<strong>in</strong>g evidence suggests<br />

that known frauds are just the tip of the iceberg”. The article reports: “The results pa<strong>in</strong>t a picture of a profession <strong>in</strong><br />

which dishonesty and misrepresentation are widespread”. It concludes: “Misconduct was far more frequently<br />

admitted by medical or pharmaceutical researchers than others, support<strong>in</strong>g fears that the field of medical research is<br />

be<strong>in</strong>g biased by commercial <strong>in</strong>terests” (One <strong>in</strong> seven scientists say colleagues fake data. Times Onl<strong>in</strong>e. Hannah<br />

Devl<strong>in</strong>, June 4 th 2009). The article may come as no surprise to the <strong>ME</strong>/CFS community.<br />

Is the PACE Trial “Cargo Cult Science”? Time will tell, but it seems that the PACE Trial may not be be<strong>in</strong>g<br />

carried out with<strong>in</strong> the normal conf<strong>in</strong>es of scientific exactitude.<br />

Conflict<strong>in</strong>g <strong>in</strong>formation<br />

Conflict<strong>in</strong>g <strong>in</strong>formation permeates the PACE Trial Manuals and this is evident <strong>in</strong> the quotations <strong>in</strong> Section 4<br />

below, so just a few illustrations are given here. The researchers’ <strong>in</strong>consistencies are notable.<br />

The NICE Guidel<strong>in</strong>e on “CFS/<strong>ME</strong>” states: “The GDG did not regard CBT or other behavioural therapies as<br />

curative or directed at the underly<strong>in</strong>g disease process” (Full Guidel<strong>in</strong>e, page 252). Physiotherapist Jessica<br />

Bav<strong>in</strong>ton (who used to work with Peter White) was a member of the NICE Guidel<strong>in</strong>e Development Group<br />

and as such, she agreed with ‐‐ and signed up to ‐‐ that statement, but she also wrote the PACE Trial<br />

Manuals on GET and contributed to the Manuals on CBT, which contradict the NICE Guidel<strong>in</strong>e.<br />

Peter White claims that “a full recovery is possible” (Psychother Psychosom 2007:76(3):171‐176); the<br />

participants’ CBT Manual <strong>in</strong>forms people that the PACE Trial therapies are curative and that “many people<br />

have successfully overcome their CFS/<strong>ME</strong>” with such behavioural <strong>in</strong>terventions (“Information for relatives,<br />

partners and friends”, page 123). This appears to be untrue for people with <strong>ME</strong>/CFS and it is unethical for<br />

the content of the Manuals to mislead participants. Moreover, Simon Wessely himself claims that neither<br />

CBT nor GET is remotely curative and that many patients do not benefit from them.<br />

That many patients with <strong>ME</strong>/CFS do not <strong>in</strong> fact benefit from these <strong>in</strong>terventions is already a matter of<br />

record, be<strong>in</strong>g the published views of the keenest CBT proponents themselves:<br />

• CBT and GET are only “modestly effective”. “Even though these <strong>in</strong>terventions appear effective, the<br />

evidence is based on a small number of studies and neither approach is remotely curative”. “These<br />

<strong>in</strong>terventions are not the answer to CFS” (Editorial: Simon Wessely JAMA 19 th September 2001:286:11)

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