1999 Clinical and Scientific Meeting

Simon R. Molesworth AM, QC BA, LLB, FEIA, FAICD

The Precautionary Principle, CFS Investigative Research and Patient Support Regimes in Litigious Times

In this paper the author examines the processes of investigation and research into Chronic Fatigue Syndrome and arrives at very disturbing conclusions. The author, as a Queens Counsel with a practice specialising in the fields of environmental, natural resource and planning law, expects, indeed requires for success in his practice, an approach to forensic investigation within scientific disciplines which is "open minded" to a multiplicity of theories and approaches whatever the problem or challenge might be. Benefiting from working with multi-disciplinary teams throughout his professional career, the author believes his observations reveal, by comparison, a generally inadequate response by the medical profession when faced with a patient presenting with CFS. More than just deserving criticism, the author believes many in the medical profession are leaving themselves seriously vulnerable to law suits when it is established that they were all too ready to dismiss CFS as a somatisation disorder or other manifestation of psychopathology.

In contrast to his experience and expectation, the author has found that all too often those in the medical profession associated with the treatment of CFS patients take the easy option of not pursuing on-going investigation of possible causes and monitoring of patients. He surmises that this response may be largely due to the influence of those encouraging a psychiatric diagnosis. Being aware of the controversial debates between those who favour an interpretation of the illness as being psychiatric in derivation and those who favour a physiological explanation, many in the medical profession consider the illness too difficult to continue investigation but rather entirely assign themselves to tackling secondary responses to the primary illness. So where depression in a patient is identified it inevitably becomes the prime focus, with little or no effort being assigned to continuing the investigation of any possible physiological causes or answers.

The current favour given to cognitive behaviour therapy involving treatment, by suggestive counselling and/or psychotropic medicine, aimed at assisting the CFS patient to address negative behaviour and cognitions which are presumed to exist and prevent the patient recovering, biases the treatment of such patients. The author observes that while patients are undergoing such therapy there is little chance of patients obtaining the potential benefit of other investigative work which accepts that there might be a physiological trigger or cause. Even in circumstances where multi-disciplinary teams are involved, observation seems to confirm that inevitably the therapist or psychiatrist dominates the chosen strategies presumably arguing that the absence of any certainty with respect to the physical manifestations of the illness warrants therapy primarily focussing on cognitive behaviour.

In these litigious times, the author observes such an approach to CFS treatment is perilous and could lead to a spate of litigation for both misfeasance and nonfeasance. In that cognitive behavioural therapy can have the consequence of the patient continually battling to establish credibility, that they are actually physically ill, one repercussion might be to exacerbate, indeed inflame, the patient's secondary depression response. If such treatment causes such consequences, the patient's continuing, indeed worsening suffering, gives rise to the spectre of misfeasance. In a related manner, the all too frequently observed avoidance of on-going physical monitoring and investigative examination of a patient, due to their assignment to the therapist or psychiatrist, gives rise to the very real prospect of nonfeasance. If doctors fail to continually monitor their CFS patients and compare notes from one to the other and generally exchange data, in short continually keep an investigative eye out for the illusive cause or remedy, then they are vulnerable if it is subsequently proven that by maintaining a pro-active forensic approach the patient might have found relief earlier.

Borrowing from his years of formulating and working within environmental management theory, the author rhetorically asks why the "precautionary principle" is not a code of practice embraced by the medical profession working with CFS. All options must be kept open, approaches which might shut out some explanations for the illness ought be avoided. The too easy dismissal of possibilities on the basis that conclusive scientific evidence is not yet established has the consequence of narrowing the parameters of research. As a lay observer, the author concludes, by way of an overview of current world-wide research into CFS, that there are more than enough indicators that physiological causes or triggers are likely to be soon established and that the illness will be confirmed as having a multiplicity of physical symptoms. When such breakthroughs are made, it will probably also be confirmed that distressing psychological effects are a frequent secondary association of the illness.

In concluding the paper, the author calls for the establishment of a nationwide non-exclusionary comprehensive register of all persons diagnosed with CFS together with all those who claim to have the illness. The register will record as much information as possible regarding all aspects of each patient's illness and treatment. Accepting that such a register may record people not properly categorised with CFS, the author nevertheless concludes that researchers ought never complain about too much information or too great a sample when to date lack of large scale investigation has probably prevented finding case history similarities earlier and extrapolating.

 

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