Friday, 14 January 2011

Saints and demons in the Cult of The Chronically Fatigued

You can't convince a believer of anything; for their belief is not based on evidence, it's based on a deep seated need to believe. Carl Sagan 
Cultism seems an inherent human behaviour, probably an evolutionary adaptation selected for as a group cohesion process in the development of the language and culture of our homonin ancestors. Cultism frequently has harmful effects when encountered on a broad social scale but it is likely to be an inevitable group response where the group is experiencing, or (perceives that it is experiencing) external stress. Having an illness which is effectively ‘undiagnosable’, which causes individuals significant social dislocation, which has limited social and scientific acceptance and which leaves the individual feeling permanently ‘crap’, is as an effective a source of individual stress as one could want. Multiply that individual stress amongst a group defined on the basis of a shared experience of that stress and the conditions for a group psychology founded on a sense of external oppression appears ready made. Of course this doesn’t mean that CFS = cult, merely that some people affected by CFS, which may include carers as well as those who are ill, will find a degree of safety in adopting a cultified mindset. This ‘safety’ default position can also be seen in anti vaccination groups, groups of parents of developmentally challenged children and groups advocating exclusive adoption of non scientifically validated medicine and it is notable that across internet forums there is a degree of interchange between these various groups.

Shame the Devils

Cults and cultic thinking are not phenomena which are exclusively religious in character, neither are these phenomena dependant upon the presence of a charismatic founder/originator but there is a very strong propensity for cultic thinking to drive the process of ingroup  bonding by identification of a personified outgroup ‘demon’ and a personified ingroup ‘saint’. Indeed these personifications may multiply into a veritable pantheon of  white hat and black hat wearers, however in the cultified thinking found within the CFS forums there are only two major demon figures, notably one male and one female.  The senior devil, and veritable prince of lies according to the liturgy of his CFS detractors is psychiatrist  Professor Simon Wessely . The demonstration of Wessley’s commitment to the dark side was his co-authorship of a paper on the use of CBT as a treatment for CFS which demonstrated high levels of positive outcomes. CBT is considered by some of those affected by CFS/M.E to be inimical to good illness management and some even claim it is substantially injurious to CFS sufferers. There is a commonly repeated meme that Wessely specifically chose a predominantly psychiatric model of CFS to load his CBT study so as to get a ‘positive’ result.  Ironically not only did Wessley and his colleagues reference their patient recruitment terms to recommendations from a US expert conference which noted the need to exclude psychiatric diagnoses ( It was viewed as essential for the investigator to screen for psychiatric disorder using a combination of self-report instruments followed by at least one structured interview to identify patients who should be excluded from studies or considered as a separate subgroup in data analysis)  as well as to a UK expert conference where psychiatrists were in a minority, but in any case both these recruitment references were superseded by reclassifications by the CDC  and the DOH . The reclassifications rendered the Wessley et al study of CBT largely inapplicable to succeeding patient populations, so even were that study to have been anything other than scientifically sound, it was largely redundant even by the time it was published in 1997 given the CDC adoption of Fukuda et al in 1994. Nevertheless Wessely is code for evil in CFS cultism, and by association, so is psychiatry, all psychiatrists and any treatment they may recommend for CFS.

More recently recruited to be an object of vilification by cultic thinking CFS affected individuals, is Dr Esther Crawley,  Dr Crawley has doubly damned herself, firstly merely by following the guidelines of the National Institute for Health in treating CFS patients, and subsequently by proposing a study involving (in this author’s inexpert opinion, the decidedly un-scientific) Lightening Process© .  Normally a scientist like Crawley could have expected support from the science orientated MEA but even the MEA was drawn to seek a review of the ethics of the less than appositely named SMILE study. Crawley has now been cleared to go ahead with SMILE but her role as cultic hate figure  is assuredly permanent.  

Angels in the Firmament

The early heroes of CFS research have passed on , additionally the disease has never attracted the sort of media whore … cough er ..  celebrity campaigner, to whom the hordes have flocked adoringly and CFS in recent years has especially been a cause in need of a Joan of Arc to publicly suffer vicariously for the afflicted. The cultic inclined of those affected by CFS have found a trinity of Joans in the guise of Dr Judy Mikovits and Annette and Andrea Whittemore . No doubt admirable people these three individuals are now treated as personae mirabilis wholly beyond criticism, as also is the product of their sphere of creation   – the XMRV organism and its supposed role in causation of CFS.

 XMRV has ticked all the boxes for those affected by CFS and who are looking for a miracle, although the nature of the miracle has turned out to be something of a surprise. While the tenuous link between XMRV and CFS offers the hope of a ‘cure’, far more of the enthusiasm of the cultically inclined has been directed toward XMRV’s potential to accord social acceptance. Within the CFS forums the aspect of social acceptance has been mediated via a discourse which favourably compares HIV with XMRV and there is a repetition of statements to the effect that CFS sufferers are worse off than those affected with HIV !  The sheer scale of the dislocation between the perceived status of HIV affected people and the actual reality of living with that disease almost suggests a kind of collective dissociative thinking on the part of some CFS groups, it’s as if herpes suffers were seeking the public and scientific ‘acceptance’ accorded to small pox victims. 

In the way of many cultic phenomena, the force of reasoned external critique has only served to re-inforce the saintly status of the Whittemore Institute, its Director,  its pre-eminent ‘person of treatment’ its President  and its ‘discovery’ . Every scientific paper that casts doubt on the definitive role of XMRV in CFS is explained away in terms of incompetence on the part of naysayers, contempt on the part of authority and conspiracy on the part of – well everyone from the massed ranks of psychiatry led by the evil Wessely (see above)  to Big Pharma wanting to defend profits from ineffective drugs prescribed to lifetime sufferers of CFS. The dubious positions taken by the WPI – marketing of XMRV tests to desperate CFS sufferers before any test validation has been achieved, ownership of the testing laboratory by the husband of the WPI president, Mikovits sharing a platform with disgraced and apparently medically fraudulent researcher Andrew Wakefield , the WPI President allying the WPI to an anti CBT agenda - only serve to elevate the WPI as the only true voice of the CFS ‘dispossessed’.

No matter what contrary evidence may arise, there is now no hope that the WPI ‘followers’ will be dissuaded that XMRV is the cause of their disease, every challenge to WPI or its science will be treated as an undeserved attack motivated by jealousy or competing financial and  professional interests. The demands for anti viral treatments will grow, pointless testing will take place, patients given positive test results will feel the need for treatment and when conscientious doctors refuse to prescribe dangerous and inappropriate medication, those patients will go to unscrupulous doctors happy to prescribe whatever the patient demands, merely for the consult fee. Mikovits and WPI could do much to rectify the situation – Mikovits could start being positive about all the science of XMRV, instead of perpetually defending her own work, and WPI should withdraw its anti CBT stance given that, no matter how inadequate, CBT based treatments are proven effective in helping CFS sufferers to at least to maintain a level of functionality.