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

The Investigators’ Reasons for the PACE Trial
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The Trial Identifier states at section 2.5 that the results of this trial will “provide the first test of pacing against
usual medical care”. Testing this theory hardly requires a multi‐million pound trial. Most ME/CFS patients
learn from experience that they must pace rather than push themselves and, as far as ME/CFS is concerned,
“usual medical care” is non‐existent.
Wessely School psychiatrists are disparaging about pacing as a method of self‐management. At Section 2.3
the Trial Identifier states:
“Pacing has been described in the scientific literature as a lifestyle management that allows optimal adaptation to the
illness. It has been advocated by exponents of the ‘envelope theory’ of CFS, which states that a patient has a fixed and
finite amount, or envelope, of energy that they must adapt to by managing activity. A non‐randomised comparison of
adaptive (rather than rehabilitative) CBT, which included adaptive pacing therapy (APT) based on this model, found
that this treatment was no more effective than the control condition (the control condition was primary
depression). A recent systematic review concluded that there was insufficient evidence to recommend adaptive pacing
at present”.
It seems that the Trial Investigators may hope to show that pacing is ineffective (especially in returning
people to gainful employment) but that CBT and GET are effective in returning people to work.
For Peter White to state that the result of his PACE Trial will allow health planners, clinicians and patients
“to choose treatment on the basis of both efficacy and cost” is already known to be a non‐existent choice, given
that the NICE Guideline recommends only CBT and GET and that medical adherence to the NICE Guideline
is to become legally enforceable, thus removing any vestige of clinical choice:
“GPs will have to prove they follow NICE Guidelines or face the possibility of suspension, prosecution or
the closure of their practice. Baroness Young, chair of the Care Quality Commission, revealed that guidance
from NICE would become legally enforceable from 2009, with doctors to face tough annual checks on their
compliance. Baroness Young told last week’s NICE annual conference that policing clinical guidance was
set to be a key part of the CQC’s work, and admitted the commission had been handed ‘draconian’ powers
by Ministers” (PULSE: “Threat of legal action if GPs fail to follow NICE”; Nigel Praities; 11 th December
2008).
The Trial Identifier also states that the Trial will “indicate which patient characteristics predict which response to
which treatment” and that it will “define the essential aspects of effective treatment as a step towards the development
of more efficient therapies” (a possible forecast of the provision of even more psychosocial “Fatigue” Clinics
throughout the nation, as both White and Pinching have publicly envisaged in their respective submissions
to various Parliamentary committees and inquiries).
In the opinion of many, not a single reason put forward by the Trial Investigators has merit. It is already
known that “perpetuating factors” do not, as believed by the Wessely School, include being in receipt of
State benefits, having “aberrant illness beliefs”, being “deconditioned” or belonging to a self‐help
organisation.
Many people believe that the MRC PACE Trial was designed and implemented to produce a specific
outcome and that this outcome will support the NICE Guideline’s recommendation for CBT/GET for
“CFS/ME”.
Such an outcome would also support the theories and careers of the trial designers and their like‐minded
colleagues, an outcome that would effectively impose State control of medicine in the UK.