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

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“The approach adopted by the group became dominated by the perspective of sufferers (when did the perspective of
sufferers cease to be a legitimate consideration in medicine?) and, predictably, led to the conclusion that the scale
and, in some cases, the severity of the condition, establish its authenticity and dictate the need for NHS
provision…..The group’s recognition of CFS/ME as a distinct syndrome runs counter to trends in recent
research….It is likely that the ‘reality’ of discrete syndromes such as CFS/ME reflects bias in the referral
and selection processes inherent in medical specialisation…..Patients with persistent unexplained physical
symptoms (PUPS) believe themselves to be ill…The activities of pressure groups are tending to perpetuate
discrete syndromes such as CFS/ME…The prevailing view in UK primary care has been that somatisation
of mental illness is the basic problem…Approaches which focus on changing the way patients and doctors
communicate about the illness and, in particular, incorporate and modify patients’ beliefs, are gaining
ground…A number of authors (citing Edward Shorter and Elaine Showalter) have pointed to the primacy of
cultural and social factors in creating ill‐defined syndromes, suggesting that they are akin to other types of ‘social
epidemic’…Some individuals…may translate physiological manifestations of unhappiness into symptoms of illness,
with the gains involved in adopting victim status…The fundamental criticism of the CMO’s group is that
by adopting an approach that allowed consumerism in health care to define an illness, it surrendered a role
reserved for the profession’s established scientific methods…The uncritical diversion of NHS resources…into
CFS/ME will not diminish the problem…For, unless the medical profession clearly understands its role in the
management of illness beliefs and behaviour in the absence of demonstrable pathology, it risks becoming an
intellectual casualty and a potent vector of this and other social epidemics” ‐‐ JRCGP 2002:52:478:355‐356.
Letters to the Editor in response included one from Hooper et al, who said: “The authors seem to have fallen
into the common trap for the unwary in that they have equated chronic fatigue with the ICD‐classified chronic fatigue
syndrome (ME), the exact error for which JAMA was forced to issue a correction as long ago as 1990….Far from
welcoming the belated public acceptance of what in reality has been officially recognised by the UK Department of
Health and the BMA since 1988, the authors seem to resent the CMO’s acknowledgement that it is a ‘real’ disease.
They make not a single mention of any of the mounting number of biomarkers of organic pathology which have been
documented worldwide in these patients…Could the authors be invited to explain why they ignore all the evidence
which is not consistent with their own (psychiatric) model of unexplained physical illness?…Whilst admittedly the
authors are writing in a British journal, they do not attempt to explain how their ‘social epidemics’ of physical
symptoms have come to affect hundreds of thousands of people worldwide who manifest exactly the same physical
symptoms when such patients do not even speak the same language and the symptoms embrace the major systems of the
body, particularly the nervous system (central, autonomic and peripheral), cardiovascular, immune, musculoskeletal
and endocrine…Contrary to the assertions of Stanley et al, there are no gains whatever for those with PUPS and their
suffering is immense; the reality is that, far from sufferers adopting the role of victim, it is overbearing medical
practitioners who victimise these patients. Anyone who relies, as Stanley et al do, on the surmising of a much‐
criticised American Assistant Professor of English (Elaine Showalter) who equates CFS/ME with abduction by aliens
as scientific evidence to support their own theories must be at something of a loss in the field of neuroendocrine
immunology. In our opinion, Stanley et al have publicly exposed their own biased and limited approach to these
problems and their own failure to get to grips with one of the most complex areas of medicine; in this they are not alone,
because certain UK psychiatrists whose work is so often funded by charities and trusts linked to commercial interests
seem to have the same problem”.
The Wessely School continue to demonstrate an unjustifiable denial of the biomedical evidence showing
that ME/CFS is a serious organic disorder akin to HIV/AIDS. Their unremitting intention to eradicate
ME and to claim “CFS” as a mental health disorder has chilling implications and serious long‐term
consequences worldwide for the management of people with ME/CFS.
That there is a concerted campaign by members of the Wessely School to re‐classify as a single
somatoform disorder various organic syndromes for which a definitive test remains elusive cannot be
rationally disputed.
Although only marginally relevant to the MRC PACE Trial, it is worth noting that the British Medical
Journal recently carried a well‐structured Clinical Review of interstitial cystitis (claimed by Wessely et al as