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

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amended. Indeed, Peter White actually included “Doctors” as a problem in his power point slides of his
presentation at Bergen on 20 th October 2009 in slide 37 in “Treatment issues”
(http://www.meactionuk.org.uk/Bergen‐Treatment‐2009.pdf).
The myth that ME/CFS is a psycho‐behavioural disorder has permeated the insurance industry to the extent
that on 24 th November 2009, a Senior Policy Manager at the Department of Health, Mrs Lorraine Jackson,
wrote to Nick Starling, Director of General Insurance and Health at the Association of British Insurers:
“I am writing about concerns that have been raised with Ministers and officials at the Department regarding the
assessment of people with (CFS/ME) who are seeking payment of benefits under their insurance policies.
“Patient groups suggest that the insurance sector is interpreting the clinical guideline published by the National
Institute for Health and Clinical Excellence (NICE) on the diagnosis and management of CFS/ME, and particularly
the outcome of the recent judicial review of this guidance, to mean that CFS/ME is a psychiatric rather than a physical
illness. As a result, they claim that many insurance companies are opting out of making payments to people with
CFS/ME where there is a psychiatric exclusion clause in the contract.
“The Department of Health accepts the World Health Organisation’s (WHO) classification of CFS/ME as a
neurological condition of unknown cause. The Department also accepts that CFS/ME is a genuine and disabling
illness that can have a profound effect on those living with the condition.
“The purpose of this letter is to draw to your attention the very real anxieties that have been expressed by people with
CFS/ME and those representing their interests”.
That such a letter was deemed necessary demonstrates the very real and damaging effects of the Wessely
School myth, for example, loss of benefits, loss of income protection and the consequent financial hardship
that must be borne in addition to the burden imposed by the severity of the illness itself.
From the information received under the Freedom of Information Act, it seems that the MRC PACE Trial
does nothing for those with ME/CFS. The reason is because the Wessely School’s psychosocial model of
“CFS/ME” does not accept the biomedical reality of ME/CFS: the PACE Trial is intended to alter the way
participants think about their disorder by re‐structuring their thoughts and challenging their “negative
thought patterns” by persuading them to believe that they are not sick, yet there is no research evidence
to show that the many pathophysiological abnormalities that have been demonstrated in ME/CFS are
caused by wrong beliefs or behaviour.
There can be no comparison between the aim of the PACE Trial to alter participants’ cognitions with
supportive care for those coping with life‐altering disease (as Wessely said: “CBT is directive – it is not
enough to be kind or supportive”, New Statesman, 1 st May 2008) and the form of CBT used in the PACE Trial
is indeed “directive”.
As Michelle Strausbaugh noted (Co‐Cure ACT: 7 th September 2009), patients with multiple sclerosis feel no
shame at being ill, and no fear that by admitting their disease – or even simply stating the name of the
disease – they will immediately be labelled histrionic, lazy, and/or hypochondriacal which, perhaps because
of the way they have been portrayed by the Wessely School’s myth for the last two decades, is certainly the
case for those with ME/CFS.
The Wessely School’s myth ‐‐ that if basic tests are “normal”, then the person must be somatising – has been
comprehensively demolished by Professor Nancy Klimas and her team in the US. In a study looking at
ME/CFS patients’ total blood volume and at whether they had enough red blood cells, Hurwitz and Klimas
et al found that people with ME/CFS are likely to be anaemic despite “normal” test results. This is
because the standard blood tests for anaemia measure the number of red blood cells relative to the blood
volume (Co‐Cure RES 27 th August 2009). However, as Klimas et al have demonstrated, patients with