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

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SECTION 3: Consideration of the MRC PACE Trial<br />

223<br />

Under “Topic” <strong>in</strong> the UK Cl<strong>in</strong>ical Research Network Study Portfolio, the PACE Trial is listed as<br />

“Neurological”; the category of disease be<strong>in</strong>g studied is listed under “Nervous system disorders”; under<br />

“Ma<strong>in</strong> Inclusion Criteria” is stated “Unknown” and under “Ma<strong>in</strong> Exclusion Criteria” is also stated<br />

“Unknown”, which may reflect the fact that Peter White sought approval from the West Midland MREC to<br />

write to GPs virtually implor<strong>in</strong>g them to send anyone with “chronic fatigue (or synonym)” for entry <strong>in</strong>to the<br />

PACE Trial, thereby open<strong>in</strong>g the trial to anyone who is simply tired all the time (TATT).<br />

Furthermore, a recent letter from Jane Spencer at the Department of Health (the DoH be<strong>in</strong>g a co‐funder of<br />

the PACE Trial) states:<br />

“The Department of Health accepts CFS/<strong>ME</strong> is a chronic long‐term neurological condition of unknown cause and<br />

health and social care professionals should manage it as such.<br />

“No management approach to CFS/<strong>ME</strong> has been found to be universally beneficial and none can be considered a cure.<br />

“As with any treatment, an explanation of the benefits and possible harmful effects of CBT should always be provided<br />

before decisions are made to offer and accept treatment”<br />

(http://www.facebook.com/edittopic.php?uid=154801179671&topic=10499&action=4#/topic.php?uid=154801<br />

179671&topic=10550).<br />

This is notable, because the PACE Trial Pr<strong>in</strong>cipal <strong>Invest</strong>igators consider “CFS/<strong>ME</strong>” to be a condition of<br />

medically unexpla<strong>in</strong>ed fatigue and decondition<strong>in</strong>g that is perpetuated by “<strong>in</strong>appropriate illness beliefs”,<br />

neither do they accept that CBT/GET has any harmful effects and <strong>in</strong>deed, PACE Trial participants are<br />

specifically reassured that such is the case (see below).<br />

The same letter from Jane Spencer at the DoH also states:<br />

“The ma<strong>in</strong> agency through which the Government supports medical and cl<strong>in</strong>ical research is the Medical Research<br />

Council (MRC).<br />

“It ma<strong>in</strong>ta<strong>in</strong>s a rigorous decision‐mak<strong>in</strong>g process and only funds research that is likely to make a<br />

significant contribution to knowledge and is a good use of tax‐payers’ money. Decisions to support<br />

proposals are taken on the grounds of scientific quality and whether the research proposed would be likely<br />

to <strong>in</strong>form the knowledge base. There is certa<strong>in</strong>ly no bias….<br />

“Both trials (PACE and FINE) were subject to rigorous peer review that ensured their methodology was<br />

robust”.<br />

Information obta<strong>in</strong>ed under the FOIA and scrut<strong>in</strong>y of the trial literature appears to cast serious doubt on<br />

such assertions and may <strong>in</strong>validate them.<br />

Mis<strong>in</strong>formation <strong>in</strong> the MRC PACE Trial literature<br />

The Patient Cl<strong>in</strong>ic Leaflet (http://pacetrial.org/trial<strong>in</strong>fo.html) that encouraged patients to become PACE Trial<br />

participants states: “Chronic fatigue syndrome” is “also known as post‐viral fatigue syndrome, myalgic<br />

encephalomyelitis (<strong>ME</strong>) or myalgic encephalomyelopathy (<strong>ME</strong>)”, thus there can be no doubt that patients with the<br />

neuroimmune disease <strong>ME</strong> are alleged to be <strong>in</strong>cluded <strong>in</strong> the PACE Trial. Whether or not it can be verified<br />

that such patients were <strong>in</strong> fact recruited has not yet been clarified, s<strong>in</strong>ce the entry criteria (the Wessely<br />

School’s own 1991 “Oxford” criteria) specifically exclude those with a neurological disorder.

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