Psychiatric Hospital Zwolse Poort, Raalte, The Netherlands, 1Hospital Medisch Spectrum Twente, Enschede and 2University of Twente, Department of Communication Studies, Faculty of Behavioral Sciences and Philosophy, Enschede, The Netherlands
Correspondence to: J.J. Rasker, University of Twente, PO Box 217, 7500 AE Enschede, The Netherlands. E-mail: j.j.rasker{at}utwente.nl
First, we thank the philosopher H. Procee and the doctors M. Harth and W. Nielson for carefully reading our paper [1] and their constructive comments [2, 3]. We appreciate the widening of the philosophical scope by adding different actors and philosophical contributions to the discussion about the fibromyalgia syndrome (FMS). It will certainly give the therapeutic domain more depth, and will be of added value for good medical practice. We will try to give a reply to Harth and Nielson first, because we think it has to do with fundamental comments and maybe a misunderstanding about our statements. Then we will discuss the points as raised by Procee.
Harth and Nielsen state in their letter: they cite with approval Hadler's belief that FMS is "a form of illness behavior". Readers familiar with the scientific literature on FMS will recognize that there are no studies to support this [3].
Harth and Nielsen quote only part of our statement: in full it is: Hadler states that FM is a form of illness behaviour escalated in vulnerable patients by labels. However we hypothesize that FM behaviour is facilitated by medical and therapeutic practice, called an ever-changing "therapeutic domain". Behaviour is defined as: the form of nervous, muscular and emotional response of an individual to internal or external stimuli.
So if one reads our text correctly we disagreed with Hadler. It is the core of our theory and we have explained this in our paper [1].
We cannot find the next quotation as described by Harth and Nielsen in our article (that physicians are unable to demonstrate FMS as a visible disease) and did not make the interpretations as suggested by Harth and Nielsen. So we feel no need to comment on the philosophy and aetiology of other disorders.
Harth and Nielson ask whether dynamic nominalism does explain the high levels of substance P and nerve growth factor in the cerebrospinal fluid of patients with FMS, and how does phenotypic iatrogenesis induce a decreased production of growth hormone, or an increased somatostatin tone in FMS. The raising of these questions means that we have to make clear the role and meaning of dynamic nominalism. The latter is a philosophy that tries to explain the birth and decline of syndromes by postulating a therapeutic domain. It does not explain why people can change their behaviour or why appearances of (health and mental) problems that people experience change during decades. These forms of appearance or syndromes can (even totally) disappear in time: take for example the arc de cercle of the classical hysteria around 1900, or the rise and decline of the Australian repetitive strain injury (RSI) epidemic around 1986. So, dynamic nominalism is not the cause or occasion and it can never be the cause or the occasion. It tries to describe the different actors in the therapeutic domain.
We will try to give some suggestions how phenotypic iatrogenesis could induce a decreased production of growth hormone. When a doctor is talking to a patient about FMS, they both are acting in a therapeutic domain. It is known that talking with a patient, called psychotherapy, seems to induce the same biochemical effects as psychopharmacological treatment [4]. The theory to explain this is that every thought and behaviour is basically an expression of gene expression. Experience produces sustained changes in the effectiveness of neural connections by altering gene expression [4]. In other words, altered thoughts, beliefs and behaviour are connected with alterations in gene expression. Changed gene expression also means an altered production of proteins, neurotransmitters, hormones and so on.
Phenotypic iatrogenesis can be understood as the same kind of process that we just explained. Acting in a therapeutic domain also means talking to patients and by talking it is possible to alter gene expression, which induces alterations in specific proteins and hormones and ultimately alters behaviour, or the phenotype of some genes.
So, if we say that changing a therapeutic domain can prevent syndromes like FMS, we mean that in a different domain where the actors are talking in an altered way, other actors (patients) also will change. They will change not only in the way they behave (their phenotype) but their gene expression and certain hormones will also alter. That is the way phenotypic iatrogenesis may induce a decreased production of growth hormone, or an increased somatostatin tone in FMS patients.
Concluding, dynamic nominalism is a philosophical way of describing the relationship between social and biological processes in the shaping of behaviour in an altering therapeutic domain.
Harth and Nielsen state: Labeling may provide FMS sufferers with "social legitimacy". Although this has not been our usual experience, we have found that, at least, it does not worsen their function or symptoms [5].
Many of the findings of the study of White et al. [5] can, in our opinion, be ascribed to the fact that they just took an ill wedge out of the pain population cake and labelled these poor people as FM. In our article we even warn about this approach. We state: Syndromes like FM are thus not waiting below the surface until they are discovered by a researcher or brought to light by the medical gaze, as White et al. [5] did. The patients they included in their study are thus probably not the vulnerable cases in whom behaviour is facilitated by the therapeutic domain. Many would probably have never been diagnosed as FM if they had not been phoned by the researchers.
White et al. [5] did not label half of the cases as FM and told the other half to be healthy, as would have been a more appropriate approach. Even in their biased group an increase of 50% (from 23 to 35%) was observed in total disability after labelling. Albeit not statistically significant, it is certainly an impressive figure and in The Netherlands we do not observe these increases in the healthy population.
Apart from this there is substantial psychopathology in FMS and much social distress, and the White and Harth studies hardly adequately address these questions. The psychological and behavioural problems are so well known that it does not take data to prove the obvious. The US insurance epidemic and the craziness of it all support our position.
The next point raised by Harth and Nielsen regards psychological factors. We state in our article that: when the diagnosis is made, the patient may respond with hostility to any suggestion that psychological factors may be contributing. These factors have become a taboo for both patients and doctor. We are not talking about psychological treatment, which is making use of other psychological techniques. Apart from this the short-term results of this cognitive behavioural treatment are generally minimal, perhaps statistically significant but hardly clinically relevant and in their study, like in many others, the situation after 12 months is virtually the same as pre-admission [6].
As for the intervention to prevent the spread of FMS, we could not find in our library what measures were proposed by Erewhon, but from history we know that the method as proposed by us has worked in the past in RSI (Australia), railway spine, Royal Free disease and others [1]. Why would it not work for fibromyalgia? This is not a satire, these are real facts which have been proved in history.
In response to Procee, he suggests utilizing the smoother tools of semiotics as put forward by C. W. Morris in our model of the therapeutic domain [2, 7]. By its dynamic structure the model can then be used for analytical purposes and empirical research. He suggests that thus the line between descriptive and implicative analysis on one hand and the intentional analysis on the other hand may be able to transcend. We agree that this method will give the therapeutic domain more hands and feet.
Procee made a critical comment on our discussion of symptoms and diseases. According to the semiotic model a neutral or positivistic description of reality is out of order. In the section on this topic he states that we have accepted the difference between a nominalist (a syndrome is just a name for a complex of symptoms) and essentialist (a syndrome mirrors something inphysicalreality) notion of disease. In accordance with our non-reductionist stance he expects and advises us to embrace a strong nominalist position. That means, he explains referring to Hacking, accepting a disease as real if it is converging in different (scientific) frames of reference [8]. But a nominalist position in the case of FMS is not that easy, in our opinion. We will try to explain why.
The question of reality, for reason of the current discussion, especially in the FMS case, is a very intriguing one, not only from a philosophical frame of reference, but also from the FMS patient's point of view. Patients namely, and also ordinary people in society and even some physicians, wrongly equalize the concept of FMS and the people classified as FMS patients. The concept and the patient do not belong to the same category [9]. The patient, and his or her complaints, is not feigned, but real and not a social construction, whereas the idea, the concept of FMS, is really socially constructed and does not have a physical reality.
According to a nominalist notion of disease, a label for a complex of symptoms and signs equals a syndrome, i.e. FMS. Taking a nominalist position is implicitly saying there is no such thing as FMS: the only thing there is, is a name and nothing but a label. We introduced, as Procee also stated in his letter, the concept of therapeutic domain in order to get away from a frame of interpretation in which FMS has been reduced to the result of labelling activities. Therefore we cannot be expected, in contrast to what Procee wants us to do, to accept the nominalist notion of FMS, i.e. taking FMS as reduced to a name for a complex of symptoms.
There is more to say about this question. FMS, both the concept and the patient, is of an interactive kind [10]. That is, new knowledge about the fibromyologist becomes known to the people classified, changes the way these individuals behave, and loops back to force changes in the classification of FMS and knowledge about them. According to Hacking, interactive must be thought of as in contrast to indifferent: the classification quark or Lyme disease is indifferent in the sense that calling a quark a quark and Lyme disease Lyme disease makes no difference to the quark and Lyme disease, respectively. Unnecessary to add, but what scientists have classified as a quark and Lyme disease of course are social constructions of natural kinds. Nominalism can be comprehended as a one-way process of labelling, a process lacking the looping effect just mentioned in the case of interactive kinds like FMS. Also for that reason we think we are not to be expected to accept nominalism.
Finally, FMS has no unique inherent structure like rheumatoid arthritis or Alzheimer dementia for example. So, primary FMS does not have a physical reality. Not embracing nominalism does not mean we have no other choice than accepting a kind of essentialist notion that, although not found, there must be a biological substrate called FMS, or a substrate being the aetiological basis of the syndrome. Rejecting the essentialist notion of FMS does not logically mean that an FMS patient is not real: we know they are.
Procee gives the constructive comment on the technique of stakeholder analysis that is the analysis of all parties that are potentially involved, instead of using the more complicated sociological approach. This technique may be helpful to bridge the gap between the observational outsider perspective and the action-oriented insider perspective. This seems a very important field of research as until now mainly the patients have been analysed and very little the other stakeholders who are active in the therapeutic domain. The doctor stakeholder who is an FMS evangelist has a different position than the orthopaedist working for an insurance company, or the patient himself. It is true that for prevention and treatment we have to start by fundamentally changing the therapeutic domain, including all the participants in the domain. A stakeholder analysis could be very helpful.
The authors have declared no conflicts of interest.
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