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

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Dr Gabrielle Murphy is/was part‐time Clinical Lead of the Royal Free Hospital’s Fatigue Service; in her
absence, the person in overall charge is/was Professor Peter White from St Bartholomew’s Hospital, the
PACE Trial Chief Investigator.
Less than one month after publication of the NICE Clinical Guideline CG53 on “CFS/
ME” in August 2007 (which states that if a “CFS/ME” patient declines CBT and GET, such patients
should not be discharged from medical care), patients at RFH believed the Royal Free Fatigue Service
Clinic to be implementing a
policy that refused and denied them access to a physician at the clinic unless they agreed to take part in a
CBT/GET regime, correctly assumed to be the PACE Trial (this was subsequently confirmed by Dr Gabrielle
Murphy herself).
After attention was publicly drawn to this Royal Free Hospital policy in the document “Coercion as
Cure?”(21 September 2007: http://www.meactionuk.org.uk/COERCION_AS_CURE.htm ), one of the authors
was contacted by The Royal Free Hampstead NHS Trust which alleged defamation by the authors.
An exchange of correspondence ensued, culminating in the authors’ detailed and referenced rebuttal of
the allegations of defamation, which the Royal Free Hampstead NHS Trust did not deny. This rebuttal is
attached as Appendix II.
On 10 th October 2003 it had been confirmed by Dr Gabrielle Murphy that the “CFS” Clinic at St
Bartholomew’s Hospital (Barts) was no longer an immunology clinic but a psychiatric unit
(http://health.groups.yahoo.com/group/MEActionUK/ message 15999), and as The Royal Free Fatigue
Clinic is essentially a satellite clinic which comes under the control of Professor Peter White, it was perhaps unsurprising
if its policy was that patients who declined to participate in one of the therapies offered by the Clinic (CBT and
GET) would be discharged from the Clinic and would have no further access to a doctor for medical advice
(access which, apart from any symptomatic medical care, they might need in order to support their claim for
state benefits, as a GP cannot endorse a patient’s Disability Living Allowance application). However, a GP
could re‐refer a patient to the clinic if thought appropriate.
Faced with the option of an inappropriate intervention or no intervention plus no further access to a Clinic
doctor, a patient may consent to an inappropriate intervention, but is this true consent and may it amount to
coercion?
In their paper “Clarifying confusion about coercion” (Hastings Centre Report 2005: 35:5), Hawkins and
Emanuel state: “if a physician‐researcher threatened to abandon a patient or withhold necessary standard
treatment unless the patient joined a study, this would clearly be coercion”.
The also state: “Everyone knows that coercion is bad after all; if a practice is coercive then plainly it should be stopped,
and the ‘coerced’ decisions should be set aside (otherwise) we may be led to faulty conclusions and faulty
recommendations for change” and they continue: “Coercion depends on…the purposeful actions of others that
have created that situation…Coercion subverts real choice”.
The matter of apparent coercion in relation to the MRC PACE Trial is a material concern. As noted above, in
the absence of the part‐time Clinical Lead at the Royal Free Fatigue Services Centre (Dr Gabrielle Murphy),
the person in overall charge is Professor Peter White.
If Professor White was recruiting patients attending the Royal Free Fatigue Service Clinic to the PACE
Trial on the basis that non‐compliers would be discharged from the Clinic raises the possibility that he
was recruiting only CBT‐compliant patients to his MRC trial, which would decrease the number of trial
drop‐outs at a stroke, and this would be to his advantage.
Any kind of coercion of sick people is a serious matter. Thomas Schramme, for example, is explicit: