FW: [CO-CURE] RES,NOT: Fibromyalgia and the therapeutic domain

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[CO-CURE] RES,NOT: Fibromyalgia and the therapeutic domain

Source: Rheumatology

42: 507-515

Date: February 28, 2003

URL: http://rheumatology.oupjournals.org/contents-by-date.0.shtml

http://rheumatology.oupjournals.org/cgi/content/full/42/4/507

[Review]

Fibromyalgia and the therapeutic domain. A philosophical study on the

origins of fibromyalgia in a specific social setting

---------------------------------------------------------------------

I. Hazemeijer and J. J. Rasker(1),

Department of Military Forensic and Social Psychiatry, PO Box 3003, 3800

DA Amersfoort and

1 Department of Rheumatology, Hospital Medisch Spectrum Twente and

Department of Communication Studies, Faculty of Philosophy and Social

Sciences, University of Twente, Enschede, The Netherlands

Correspondence to: J. J. Rasker, University of Twente, Faculty of

Philosophy and Social Sciences, PO Box 217, 7500 AE Enschede, The

Netherlands. E-mail: j.j.rasker@...

Submitted 20 May 2002; Accepted 19 September 2002

Abstract

Objectives. Fibromyalgia has always attracted controversy. Wolfe states

that fibromyalgia will always exist regardless of the name given to the

syndrome. Hadler describes fibromyalgia as a form of illness behaviour

escalated by labelling. However, we believe that fibromyalgia, as other

functional somatic syndromes, is not waiting below the surface until it

becomes manifest by labelling.

Methods. We developed our hypothesis on the relationship between a

specific social setting (called the therapeutic domain) and fibromyalgia

using empirical philosophical arguments based on Foucault and Hacking. A

therapeutic domain is a real and heterogeneous medical domain in which

people, their thoughts and practices, and medical technology in any form

coexist and communicate. In this domain blood is aspirated, radiographs

are taken and classification criteria are made and applied. It is a

domain where patient and therapist have initiated a relationship, which

is influenced by the media and political pressure. This results in a

looping effect where classification criteria and images give structure

to perceptions and form the description for human behaviour; the person

thus diagnosed (!) constantly has to grow into the conformity of these

classification criteria, which also have to be constantly revised. The

fibromyalgia concept becomes manifest in an individual as non-specific

aches and pains along with other features.

Results. In other times and settings this resulted in analogue syndromes

like railway spine, telegraph wrists, neurocirculatory asthenia or

perhaps repetitive strain injury. In the application of American College

of Rheumatology fibromyalgia classification criteria, labels and medical

technology it is possible that invisible experiences manifest themselves

in a therapeutic domain. It is not only a phenotype induced by the

physician, but in this domain a certain power creates reality making the

'disease' become manifest.

Conclusion. The only certainty in fibromyalgia is that it is still being

diagnosed. For prevention and treatment of fibromyalgia, doctors as well

as politicians and media have to start by fundamentally changing the

therapeutic domain. In such a renewed setting, fibromyalgia cannot

become manifest in an individual and thus fibromyalgia syndrome can no

longer exist. A firm public message that symptoms can be psychological

in origin to prevent their spread, as Wessely recently stated in the

comparable case of mass psychogenic illness, is only a part of the

answer.

KEY WORDS: Fibromyalgia, Functional somatic syndromes, Therapeutic

domain, Doctor-patient relationship, Medical technology, Representation

of diseases, Philosophy of fibromyalgia.

Introduction

Physicians are unable to demonstrate fibromyalgia as a visible disease.

It 'occurs in the context of unrevealing physical examination and

laboratory and radiological examination' [1]. Fibromyalgia is 'not an

entity that can be described and explained; it is rather a subjective

experience comprising pain and fatigue' [2]: 'a puzzling syndrome' [3,

4]. But at the same time these invisible personal experiences have a

visible (form of)

appearance: the fibromyalgia syndrome [5]. From a positivistic point of

view, fibromyalgia cannot even exist because we cannot demonstrate it

objectively [6, 7].

Hadler states that fibromyalgia is a form of illness behaviour escalated

in vulnerable patients by labels [8, 9]. However, we hypothesize that

fibromyalgia 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 [10]; in our opinion like all

instincts or actions of the central nervous system including the

autonomic part.

The therapeutic domain

The therapeutic domain is a social setting, called 'a matrix' by the

Canadian philosopher Ian Hacking, within which an idea, a concept or

kind is formed [11]. It also is a domain within which a sufferer asking

for help may or may not become a patient, a reason why we speak about a

therapeutic domain instead of matrix. This domain is always within the

sphere of influence of a physician or another health professional, be it

the waiting room of the rheumatologist, radiology department or a

medical ward in a hospital. A therapeutic domain is a real and

heterogeneous medical domain in which people, their thoughts and

practices, and medical technology in any form coexist and communicate.

In this domain blood is aspirated, radiographs are taken and

classification criteria are made and applied. It is a domain where

patient and therapist have initiated a relationship, which is influenced

by the media and political pressure. This results in a looping effect

where classification criteria and images give structure to perceptions

and are ratified. Likewise, the patient has expectations of the success

of any therapeutic intervention and yet pain is stalking the domain like

a phantom, raising questions concerning reality, truth and severity of

pain and suffering. Similarly, there are questions, covered by taboo,

about contributory factors which may be psychological in nature or which

may involve previous sexual or physical abuse.

This domain constitutes what Hadler calls 'the settings where the hunt

for a diagnosis can be harmful to health', or 'the vulnerable and

disputative state' [8, 12] and therefore it is important to clarify that

domain. It is part of what the French philosopher Michel Foucault called

the tertiary, societal or' in some cases' medical domain or

configuration [13]. The therapeutic domain is more than a treatment act.

It is the social setting within which a particular treatment act plays

out, a setting which, in our opinion, has received much too little

attention where fibromyalgia and other syndromes are concerned. This

setting has the capacity to generate within its confines a new

representation, and thus a new syndrome. It is the domain where people

can label their internal sensations as illness or disease [14].

Syndromes like fibromyalgia are thus not waiting below the surface until

they are discovered by a researcher or brought to light by the medical

gaze. Fibromyalgia cannot be regarded as 'an age-old malady begging for

respect' [15]. On the contrary, one could say that in a therapeutic

domain a certain power creates reality and hence a form of visible

presentation. The appearance of this presentation will change in the

course of time, hand in hand with changing diagnostic techniques and

technology and with classifications becoming ever more subtle [16-18].

Most patients labelled as having fibromyalgia have a past medical

history that is remarkable for somatization whether or not they have

sought labelling or treatment acts.

It is important to mention that a specific therapeutic domain is

necessary, but not sufficient, for the manifestation of certain

complaints we now call the fibromyalgia syndrome. We want to emphasize

that neither a therapeutic domain nor doctors can be held responsible

for either causing or perpetuating this disorder in people. We have to

make a difference between the concept fibromyalgia and the individual

patient. We will make some remarks on this important difference in the

discussion and conclusion.

Fibromyalgia

The typical sufferer is a middle-aged person, most often a woman, who

seeks help from his or her family doctor because of complaints which he

or she has experienced over a period of several months. The pain is

vague and affects the whole body, and is associated with listlessness,

disrupted unrefreshing sleep and it is usually accompanied by

constipation or abdominal pains. There are no clinical findings

suggestive of chronic disease. Then the family doctor decides to perform

further blood investigations, but each is normal, as are the

radiographs. Analgesics have little or no effect. The rheumatologist to

whom the patient is referred counts the tender point score and repeats

many of the investigations; although the doctor realizes that the tender

joint score is not necessary for making the diagnosis, as these are not

specific [19-21] and tender points may 'only be accessible to the finger

of faith' [22]. The information that the patient obtains from glossy

magazines, the Internet [23] and friends and relatives confirms his or

her belief that he or she has fibromyalgia. The rheumatologist, seated

in front of popular (female!) anatomical illustrations of tender points

on the wall, explains the syndrome with an illustrated patient

information leaflet and a glance at the American College of Rheumatology

(ACR) 1990 classification criteria [24]. By this time he or she has

become a member of the fibromyalgia patient self-help group. Within this

therapeutic domain this person has been able to give embodiment to her

symptoms as a fibromyalgia patient. Simultaneously, an organizing,

reality-forming power of that domain has structured the observation of

family doctors and rheumatologists. A so-called looping effect [11] has

taken place: the individual patient and the concept have influenced each

other.

In a different therapeutic domain this person could be diagnosed and

classified from a different perspective using other criteria.

Fibromyalgia is called one of the functional somatic syndromes known by

different names by many medical specialists [25, 26]; these syndromes

are also called central sensitivity syndromes [27]. After referral to a

psychiatrist, the fact that he or she had been abused as a child might

now be interpreted as a cause for the condition, although this

relationship is inconsistent and hard to validate [28]. Satisfying

DSM-IV criteria, he or she could have been classified as having a

chronic pain disorder associated with psychological factors or with both

psychological factors and a general medical condition [18]. Had he or

she been referred to the gastroenterologist this person would perhaps

have been diagnosed as having irritable bowel syndrome [8, 29] and in

the case of referral to the neurologist or internist as having chronic

fatigue syndrome [29].

Discussion

Although 'it is increasingly accepted that this fibromyalgia syndrome is

a definable clinical entity' [5] using the classification criteria [24],

the syndrome is still disputed, and in a sense by and large invisible.

And paradoxically, according to the same criteria, it is at the same

time visible in another sense: a 'recognizable syndrome' [30], a

'readily recognizable clinical entity' [31], 'can be identified' [32],

'real, not fabricated or imagined' [33], and 'common' [34] or even 'near

epidemic' [35]. Like mass psychogenic illness [36, 37] fibromyalgia

seems to spread through social networks.

Fibromyalgia can be diagnosed without excluding visible, somatic and

incurable diseases [24]. Still, the doctor is morally burdened to

exclude such diseases, for fibromyalgia occurs in the context of normal

examination findings and negative investigation results [1, 38]

resulting in a cascade of diagnostic technology being let loose on the

patient. 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 patient and

doctor [8, 9, 32, 39]. The same can be said about not coming to terms

with a traumatic event, for example incest [40-43]. The sufferer is

obsessed with the alarming thought that more movement will lead to more

pain as well as more tissue damage [44]. He or she knows that patients

with established disease have uniformly poor outcome [45, 46] and that

the disease is expensive [47] and treatment of limited effectiveness

[48]. The patient's illness behaviour now becomes automatic and perhaps

he or she will gloomily enjoy the secondary illness gain [49].

'To be well, to feel invincible, is to have the personal wherewithal to

cope with both the physical and the psychosocial challenges. If our

homeostasis is overwhelmed, we transform our distress into a narrative

that is culturally defined and constrained' [50]. This coping difficulty

is sometimes seen as the main cause of fibromyalgia. Lorentzen [51]

states that fibromyalgia is not a disease entity, but the symptoms often

reported supposedly reflect difficulties in coping with various types of

environmental stress. He sees this as the key in the process and

therefore that identification of these environmental factors and

subsequently early intervention should have high priority. The

experienced stress may lead to sleep disturbances, fatigue and a low

level of physical activity and fitness, leading to muscle pain and

tenderness, becoming a vicious circle.

People seek medical care and enter the health care system generally due

to the experience of physical symptoms, especially when they are

persistent. For example, eight common physical complaints (fatigue,

backache, headache, dizziness, chest pain, dyspnoea, abdominal pain,

anxiety) account for more than 80 million visits annually in the USA

[52]. However, demonstrable organic cause can be identified for less

than 24% of these symptoms [53]. Health care costs of these patients are

10 times higher than the average patient [52]. Katon et al. [54] found

that 10% of primary care patients account for almost one-third of

out-patient primary care visits, one-half of hospital days, one-half of

specialty visits and one-quarter of prescriptions. These high utilizers

had a mean of eight to nine medically unexplained symptoms over the

course of their lives.

People with 'established fibromyalgia' have reduced quality of life with

abnormal scores for pain, disability, psychological status etc. [45].

The quality of life is even worse than that of people with rheumatoid

arthritis or osteoarthritis, and comparable with severe pulmonary

disorders and insulin-dependent diabetes mellitus [55]. Fibromyalgia

often coexists with other common, ill-defined syndromes such as chronic

fatigue syndrome, headache syndromes, irritable bowel syndrome, restless

legs syndrome and depression [27, 56].

When do symptoms become a disease?

'Although biological and clinical factors have set boundaries for which

symptoms might plausibly be linked in a disease concept, social

influences have largely determined which symptom clusters have become

diseases' [57]. 'The last strategy commonly used to legitimize symptom

clusters as diseases is probably the most prevalent today: the use of

consensus panels, such as those that have produced the diagnostic and

statistical manuals for psychiatric diagnoses' [57]. Classifications of

diseases are easily used then as diagnoses.

Do we (physicians, sufferers, health professionals, employers,

politicians and others) need a concept of disease? We agree with Hesslow

stating: 'The concepts " disease " , " health " , and " illness " do not play

any significant role in medical science [...] the concept of disease is

superfluous. It may be useful in everyday affairs, where sophistication

would be out of place, but in more serious contexts it is misleading and

an obstacle more than a help to clear thinking. A strong emphasis on the

distinction between health and disease in medical philosophy is thus

misguided' [58].

'Disease is generally considered to be an attribute of a patient,

whereas diagnosis is the belief that the patient has a disease, a belief

that may or may not be true. In using a single phrase to describe a set

of clinical findings, important information can be effectively

communicated to other clinicians and care providers. [Classifications

used as] diagnoses are intended to inform patients and to tell

clinicians who and how to treat. Labelling someone as " diseased " ,

however, has enormous individual, social, financial and physical

implications. Irrespective of disease symptoms, the label itself may

lead to significant distress' [59]. 'Two schools' nominalist and

essentialist (reductionist) 'have debated the clinical criteria used to

label a patient as diseased. Nominalists label symptoms with a disease

name, such as schizophrenia, and do not offer an explanation of the

underlying etiology. Essentialists argue that for every disease there is

an underlying pathological etiology and that the disease state should be

defined by the essential lesion' [60]. It is clear, diagnoses are not

diseases [61].

But even non-diseases play a role in the daily practice of every doctor.

In his brilliant and hilarious article Meador describes: 'Latent

nondisease lurks in every patient. It becomes overt as a specific entity

usually in the hands of a physician, nurse or technician, but

occasionally through the lay press or " friends " of the patients. Latent

nondisease is always desirable' [62].

In a special issue of the British Medical Journal, reminds that:

'The concept of what is and what is not a disease is extremely slippery.

It is easy to create new diseases and new treatments, as many of life's

normal processes' birth, ageing, sexuality, unhappiness and death 'can

be medicalised' [59, 63].

The perspective of sociology of knowledge

>From the perspective of sociology of knowledge there is a difference

between our point of view and the biopsychosocial model. Wolfe et al.

[31] state that the 'bio-psycho-social model may well be the appropriate

descriptor for the syndrome'. They presuppose that fibromyalgia exists

and that it is caused by multidimensional factors that can be described

and explained. In philosophical terms they have a positivistic point of

view. It is what is described as a 'whig-history', i.e. a circular

argument beginning with what is evident in the present and explaining it

from past events [64].

Our philosophical, dynamic, realistic point of view is that it is not

appropriate to think only in terms of causality of the central neuron

and peripheral level in the body of people diagnosed as having

fibromyalgia. In our opinion it is more appropriate to consider the

therapeutic domain creating a concept of a disorder in the way it is now

recognized in and by the individual patient.

We agree with Hadler when he quotes Meador [62] by saying that 'labeling

of a nondisease can cause patients to perceive themselves as ill' [9],

but we disagree when Hadler states [8, 65] that fibromyalgia is only the

result of 'iatrogenic diagnostic algorithms': labelling by doctors. Our

hypothesis is that patients shopping around for a diagnostic label that

fits them and does not stigmatize them as not being ill is just an

aspect of 'the construct fibromyalgia' [66]. We state that only

labelling within a certain therapeutic domain will provide them with a

socially accepted legitimacy. If a description doesn't exist, then the

sufferer cannot intentionally adhere to the described disorder. Like any

form of intentional human behaviour a label only represents behaviour

'under a description' [67]. Concepts or classifications of diseases

interact with the human beings who are classified according to Hacking's

looping effect [11]. Hadler suggests that it is the doctor who gives

direction to the patient's symptoms, given there is something physical,

perceived by the sufferer [8, 11, 65]. We believe that 'we must speak of

that initial dispute without assuming a victory' [68] and that a

therapeutic domain creates their symptoms, not necessarily those

produced by the doctor's questioning.

It is not only the classification criteria in rheumatology, changing in

time [24, 38, 70], that define the disorder, because at the same time

these criteria and the image formed of the disorder also have organizing

and reality-forming power: the perception of the medical profession is

structured and structuring and the classifications and the people who

are classified interact. That is the looping effect. There is also the

imagination of the individual doctor, 'stories' and multimedia images of

(female) bodies on which the 18 'specific' tender points are indicated.

There are also many hypotheses about the (supposed) cause(s) or inducers

of the syndrome, for example: sleep disturbance, daily hassles,

neuroendocrine disturbances [27, 28, 46, 71, 72], C6-7 syndrome [73],

microtraumas in muscles, cervical spine injury, any physical trauma,

infections like Lyme disease and low back pain may induce fibromyalgia

as well as social and cultural factors, psychic and psychiatric

disturbances, incest and child sexual abuse [1, 28, 40-42, 56, 74-79].

Even though these associations are likely to be spurious, the

therapeutic domain is liable to render them part of the narrative of

illness of 'fibromyalgia', if not idioms of distress similar to 'tender

points' [3, 19, 80-83].

In the development of fibromyalgia, one is giving credence to making

visible something that is not universally present and accepted. A

process in which, together with this making visible, meanings arise and

change, and doctors and patients repetitively assign complaints and

symptoms to other events. This process is called aesthetic

representation [84, 85]. So, by representation we do not mean so-called

mimetic representation according to which one point is being imagined

from another, like in a mirror, but representation as substitution.

According to this concept of representation, a discrepancy exists

between what is represented and what represents 'as real as the real

difference between a painted portrait and the portrayed' [86].

In the case of multiple personality disorder, sleep disorder has been

ascribed to previous sexual abuse leading to sleep disturbance. In

fibromyalgia, sleep disturbances are thought to be central as well [23,

87, 88]. According to an aesthetic representation process, it was to be

expected that articles have been published ascribing fibromyalgia to

sexual and/or physical abuse [40-43, 89]. Thus representations are

formed, and ultimately a representation of fibromyalgia.

Fibromyalgia is described as an 'affective spectrum disorder' [90] or as

a component of the 'dysfunctional spectrum syndrome' [91], in any case

chronic widespread pain may be a feature of somatization at the turn of

the twenty-first century [92-95]. This somatization, a social

accommodation that allows people to express distress passively through

physical symptoms when direct expression would be too threatening [96],

is a universal human propensity, with distinct regional dialects [97],

resulting in 'fashionable diagnoses' [92]. In Singapore factories, for

instance, mass psychogenic illnesses have involved convulsions and

combative behaviour [98], while in Western workplaces dizziness,

fainting, headache and nausea predominate [99]. Hunt et al. [100] found

an association with two specific illness attitudes associated with

chronic widespread pain (hypochondriac beliefs and bodily

preoccupation), both of which have been suggested as important features

in the subjective reporting and amplification of pain syndromes [101]. A

physical complaint is the result of the physical situation and the

psychological observation, perception, interpretation and reporting

strategies [14, 102]. The overreporting of complaints by women may be

explained by gender differences in the way women perceive physical

symptoms [103].

Women incline more to somatization, negative affect and pay more

attention to physical sensations than men [104]. The term somatization

gives reason for dispute. We agree with Hadler stating: 'The very term,

somatization, harkens back to the heyday of psychosomatics, earlier in

this century, when psychic conflict was thought to be convertible into

physical symptoms. Somatization is a stigmatizing label; it belittles

the symptoms as if they are not real, somehow feigned, perhaps serving

some subliminal secondary gain. I would argue for abandoning both the

terminology and the line of reasoning' [105]. The American Psychiatric

Association categorized fibromyalgia as a 'somatoform' disorder. A

separate category was devised for this spectrum of illness, 'somatoform

disorder not otherwise specified', defined as: 'medically unexplained

symptoms and worry about physical illness may constitute culturally

shaped " idioms of distress " that are employed to express concerns about

a broad range of personal and social problems without necessarily

indicating psychopathology' [105].

In a recent editorial, Ross [96] describes 'memes' as ideas that induce

psychosomatic illness. These psychosomatic memes induce biological,

psychological and social changes in their hosts and can be transmitted

to others. He uses the meme construct in an allegorical sense and we

have some difficulty with the meme construct as an infectious particle

of thought [106]. In our opinion this fascinating concept can only

evolve, spread and endure within a therapeutic domain. We would say that

memes and the therapeutic domain 'emerge hand in hand'. This view

parallels the ideas of Foucault and Hacking about the category and the

patient [13, 107].

Foucault's [108] ideas regarding 'the constitution of the subject' is

called 'dynamic nominalism' by Hacking [11]. The latter calls his own

less constructivistic ideas 'making up people' [11, 107]. Foucault did

not develop the idea of therapeutic domain, but described forms of

behaviour which develop from the invisible to the visible within what

Hacking would call a matrix many years later and we call a therapeutic

domain [109]. Historical examples have shown us more syndromes with

typical behaviour, such as the railway spine [110, 111], writers' cramp

and telegraph wrist [112], hysteria including the ;arc de cercle' [113,

114] and epidemic neuromyasthenia [115], Royal Free epidemic [116] and

more recent 'epidemics' [117, 118] like the rise and fall of the

repetitive strain injury (RSI) epidemic in Australia [119-121], multiple

chemical sensitivities [92, 122], pseudohypoglycaemia [123], whiplash

epidemic [124], neurasthenia [113], chronic fatigue syndrome or epidemic

encephalic myelitis [117, 118, 125] and perhaps the Gulf War syndrome

[126-128], the multiple personality syndrome [109, 129] and

homosexuality, which the Board of trustees of the American Psychiatrist

Association in the beginning of 1974 decided to include no longer as a

psychiatric disorder coded in their third manual [16, 17, 130]. They

illustrate that such syndromes are not just the products of labelling,

categorizing or memes. In that sense our view differs from other

multidimensional or biopsychosocial models of disease [30, 131, 132].

Conclusion

Our hypothesis is based on a multidimensional view of fibromyalgia and

presupposes that physical as well as cognitive, emotional, behavioural

and social factors participate in this syndrome. The form of

representation to which these factors will lead to is dependent on the

therapeutic domain and not only on labelling or ever more subtle forms

of classification. We must conclude that, given these factors, a certain

therapeutic domain creates a syndrome in a person with non-specific

aches and pains with a tendency to somatize, and with insufficient

coping behaviour. In that case we may describe it as the phenotypic

iatrogenesis of fibromyalgia. So it is not a disease but also not a

constructed syndrome.

There is a reciprocal, dynamic relationship between doctor and patient,

between classification criteria and behaviour, laboratory results and

symptoms as well as expectations created by the media and what we

actually achieve in our lives within a therapeutic domain. A result of

this looping effect is that when (other) classification criteria and

images give structure to perceptions and are ratified, the structure of

the therapeutic domain changes. The person thus diagnosed (!) will have

become a different person, and grows into the conformity of the

classification criteria, which have to be constantly revised [129].

These alterations in an ever-changing therapeutic domain make the new

facets of the disorder possible and manifest. There is something like

fibromyalgia, but her manifestation or phenotype, is developing. Let it

be clear, we do not state that a specific social setting or just a

doctor causes symptoms, disorders or an individual patient who would

otherwise have been absolutely healthy. No, in a therapeutic domain a

concept is constructed, technology developed, classifications made and

they interact with the people who are diagnosed and classified.

Believers in fibromyalgia as well as the sceptics and agnostics will see

the same people, but the latter do not allow the sufferer to behave in a

fibromyalgia-phenotypic way within their therapeutic domain.

As Reilly puts it: 'That the diagnosis (fibromyalgia) has gained

credibility cannot be doubted. ... In fibromyalgia, we may have created

a monster. Is it now clinically, socially and financially appropriate to

slay that monster?' [133].

In contrast to Goldenberg [1], we suppose that patients diagnosed with

fibromyalgia syndrome do not represent 'a uniform set of symptoms and

signs'. The rise and fall of the railroad spine, the telegraph wrist,

hysteria including the 'arc de cercle', the RSI epidemic in Australia,

multiple chemical sensitivities [92], pseudohypoglycaemia [123],

whiplash epidemic [124], neurasthenia [113], the multiple personality

syndrome [109, 129] and homosexuality have taught us that Wolfe's [35]

assertion that 'fibromyalgia will always be with us ... regardless of

what name the syndrome' has, is unlikely to be true. The concept of the

syndrome has been changed by what we call it and because of the looping

effect the individual patient has been changed also. Using the ideas of

Hacking [107] we could state that there are two powers. One is a power

'from above, from a community of experts who create a " reality " that

some people make their own'. The other one is a power of 'the autonomous

behaviour of the person so labeled, which presses from below, creating a

reality every expert must face' [107]. Psychiatrists and

psychotherapists are no longer needed to label somebody as a homosexual

or as having a multiple personality. Their role has been taken over by

the gay community and the multiple world [109]. In the same way,

rheumatologists are no longer needed to label someone as a fibromyalgia

patient. Their role has been taken over by the fibromyalgia patient

organizations. The only certainty in fibromyalgia is that it is still

being diagnosed.

Science has had and will have much to offer for the diagnosis and

treatment of diseases. But society and medicine have to turn to

philosophy rather than to science for the solution of treating and

preventing 'syndromes' like fibromyalgia. A firm public message that

symptoms can be psychological in origin to prevent their spread, as

Wessely [134] recently stated in the comparable case of mass psychogenic

illness, is only a part of our answer.

For prevention and treatment of fibromyalgia we have to start by

fundamentally changing the therapeutic domain. In such a renewed setting

fibromyalgia cannot become manifest in an individual and thus

fibromyalgia syndrome can no longer exist.

Acknowledgments

We thank Ray Armstrong, Croft, Wilfred Dolfsma, Ehrlich,

Nortin Hadler, y, Hans Valkenburg, Fred Wolfe, Aafke

Zijlstra and Theo Zijlstra for their suggestions.

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