Spurious syndromes: we create disease by giving every illness a name
BMJ 2014; 348 doi: https://doi.org/10.1136/bmj.g1828 (Published 04 March 2014) Cite this as: BMJ 2014;348:g1828
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I would like to thank Caroline Dover for her thought provoking piece (1.) It reinforced for me that medicine can be differentiated between the academic, the preventative, the curative, the palliative and the commercial. Often there is overlap, which should also be recognised.
I would argue that academic medicine, must name every illness. It is our business to explain the distress and disease experienced by individuals. Naming is a process of construction in Science (2.) We may get the name wrong initially, but then the process is open to review and re-construction, until we achieve a better more real understanding of the pathology, given our human limitations.
In clinical practice, our patients may not necessarily care about the cause, but be more interested in the elimination of the distress and disease. All distress and disease as Dover recognises is very real, even if the pathological correlate cannot be immediately narrowly defined. Our patients do and should however expect us to understand the basis of their distress, if we are to help them recover. We can however often be more honest with them, that we may not understand the cause right now, but we are willing to share the journey towards greater understanding. Admittedly, this has to be done with wisdom in accordance with the social and economic constraints, boundaries and realities.
Andrew Sims helpfully explains the understanding of illness as a disparity from the norm, in four main forms either by value, by statistic, individual variation or by typology (3.)
I do however agree, that we must work towards a more robust and universal, naming system, differentiating symptom from syndrome from disorder. Differentiating disease, from illness from impairment is already a helpful starting point (4.)
1.Caroline Dover. Spurious syndromes: we create disease by giving every illness a name. BMJ 2014; 348 doi: http://dx.doi.org/10.1136/bmj.g1828 (Published 4 March 2014)
2.Karl Popper. Conjectures and Refutations: The Growth of Scientific Knowledge, 1963, Routledge & Kegan Paul.
3.Andrew Sims. Symptoms in the mind, 2003, Saunders.
4.Barnes, C. and Mercer, G. Exploring the Divide: Illness and Disability, 1996, The Disability Press.
Competing interests: No competing interests
A few thoughts..
1. Naming a group of symptoms which defy a diagnosis sometimes help patients cope; in this day and age of 'partnerships in health '& 'shared management plans' it isn't sufficient that we tell our patients it's all fine and they are meant to accept that. The internet has become a great equaliser, and patients are interested in their health. Most would have done some research before they come to consult. I think it would be more paternalistic to expect them to accept our word against their research and beliefs when we may also be wrong or when we donot know for sure what's wrong.
2. How are we to respond and how long to argue in every consultation if someone says they think they might have let's say Voldemort syndrome? If I got into the discussion of let's rule out everything and it's going to be fine in a year because the evidence says so, I'd never even make it to the end of the morning surgery...the fact is that in the age of guidelines and financial pressures we cannot rule out 'everything worrying'. We can and do share uncertainty but it may not be enough. What we are doing by giving somethings a name is also acknowledging the patient's concerns and it doesn't always encourage sick behaviour.
3. What about all the things that we haven't discovered yet about these nebulous syndrome/illnesses? We are making discoveries every day and if we are complacent enough not even to name something, I think it might also discourage thought and effort in certain directions.
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"Somatic Dysfunction", a physiological change in the soma which explains most of non pathological musculoskeletal symptoms, and is now appearing in MSK textbooks. Understanding of somatic dysfunction, combined with understanding of biomechanics and detailed anatomy takes clinicians along way towards diagnosis and treating common MSK symptoms. Knowledge of somatic dysfunction is now core knowledge in MSK higher professional qualifications. Search of a pathology to explain many symptoms in MSK system will lead to incorrect diagnosis and poor treatment, and is prevalent still in much of the NHS where traditional pathological approaches to MSK symptoms are still widespread.
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If confidently labeling a condition by diagnosis helps a patient by the relief of joining the apparently known and perhaps by the facilitation of internal healing processes, then this good has to be balanced against the harms of false labeling. In practice the latter may not outweigh the former.
If doctors eschew all diagnoses of dubious strength, surely others will attempt fill this desperate human need, probably with even less worthy labels.
Diagnostic labels are the pragmatic result of a very delicate balance of need and knowledge.
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Diagnosis is the sine qua non of healthcare. Without a diagnosis, doctors don't know how to help patients. But there are many patients who can't be diagnosed or don't respond to treatment. So doctors should set basic universal guides, such as eliminating all toxins and addictions, because both are common, covert causes of sickness. It's time to go beyond the limitations of diagnostic medicine by using holistic common sense and not allowing the diagnosis to become a Procrustean bed, hospital bed, or death bed. Diagnoses are divisive devices, but holism is the key to realism, pragmatism, and health.
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Re: Spurious syndromes: we create disease by giving every illness a name
A resistance to naming what we are uncertain of has the potential to be experienced as the denial of acknowledgement and a sense of abandonment by our patients; I fear this poses at least as great a risk to their ability to heal as any over-medicalisation.
I expect that this sense of abandonment is equally mirrored in us as clinicians, when our invested training and battery of medical diagnostics fail to cleanly solve these medical conundra.
Whilst misnomers are misleading, if there is consensus about what is being defined then I suggest the argument becomes semantic and distracts from the goal of seeking to address our patients’ suffering. These terms often provide a rough compass for the voyaging clinician and I would argue that they can shield the patient from seeking misdiagnosis in more established organic entities, with their sequelae of potentially harmful investigations and treatments.
From the perspective of medical advancement we cannot shy away from tackling the uncertainties of poorly understood conditions; even if we commit a folly in the terms we use, or the resultant edges are messy and blurred, it is surely the only way we can seek to explore, research and discover.
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