Doing things with illness. The micro politics of the CFS clinic

Social Science and Medicine 52 (2001) 11–23

Doing things with illnessThe micro politics of the CFS clinic

Jonathan Banks, Lindsay Prior*

Cardiff University School of Social Sciences, Glamorgan Building, King Edward VII Avenue, Cardiff CF10 3WT, UK

Abstract

This paper focuses on lay and professional ideas about the nature of chronic fatigue syndrome (CFS), and inparticular, the ways in which understandings of the disorder are developed in a clinical setting. Our data are drawn fromobservations of consultations between sufferers and physicians in a UK medical out-patients clinic. We treat the clinic

as a political field. That is to say, as an arena in which ‘problems’ (about the management of illness) are constituted, andalternative approaches and solutions to such problems are pressed. We note that in the realms of symptoms, aetiologyand treatment evaluation, lay people in the CFS clinic have quite distinct ideas about what their problems are and howthey might be analysed and managed } ideas that are often in conflict with those of medical professionals. Thus, lay

sufferers, for example, operate within a different conceptual terrain from that of many professional experts. They aremore likely to refer to a disease (myalgic encephalomyelitis or ME), rather than a syndrome. They call upon differentkinds of hypotheses to explain their symptoms. They hold to conflicting ideas about the order of causal sequences, and

they give emphasis to different kinds of phenomena in their accounts of illness. As a consequence, clinical consultationscan often take on the form of a political contest between physician and patient to define the true and real natureof the patient’s disorder } a micro political struggle in which neurological symptoms can be re-framed as

psychiatric symptoms, and psychiatric symptoms as neurological. In short, a contest in which the demarcation linesbetween mind and body are continually assessed and re-defined, and the tenets of ‘biomedicine’ are constantlychallenged. # 2000 Elsevier Science Ltd. All rights reserved.

Keywords: Disease; Lay beliefs; Chronic fatigue syndrome; ME; Doctor–patient interaction

On disease and illness

In 1967 Feinstein drew a distinction between disease

and illness (Feinstein, 1967). During the followingdecades the distinction was soundly integrated into thecorpus of anthropological and sociological knowledge

by the likes of Eisenberg (1977), Fabrega and Manning(1972), Kleinman (1973), and Hahn (1983). These days,reference to the dichotomy is common. The rationale for

the division was supposedly grounded in the observationthat ‘disease’ was a natural, though pathological(abnormal) process in the human body, whilst ‘illness’

referred to a sufferer’s subjective experience of such

pathology. The first realm to be assigned to biomedicineand professional expertise, the second to social scienceand studies of lay belief systems. In retrospect, however,

it seems clear that it was truly a division of knowledge,rather than a division of things that was encompassed bythe dichotomy (Kirmayer, 1988). Hence, ‘disease’ referred

to bodily pathology understood within the framework ofscientific medicine, whilst ‘illness’ referred to pathologyunderstood from the standpoint of the sufferer.

Once framed under the canopy of knowledge }

rather than that of ‘nature’ } the study of disease standsopen to social scientific, as well as biomedical scrutiny.

In particular, it becomes possible to ask how medicalscientists construct diseases (cf. Latour & Woolgar,1979; Latour, 1987 on the construction of laboratoryfacts; and Pinch & Bijker, 1989, on the social construc-

tion of technology). Equally interesting, is to inquire

*Corresponding author. Tel.: +44-2920-875428; fax: +44-

2920-874175.

E-mail address: [email protected] (L. Prior).

0277-9536/01/$ - see front matter # 2000 Elsevier Science Ltd. All rights reserved.

PII: S 0 2 7 7 - 9 5 3 6 ( 0 0 ) 0 0 1 1 7 - 9

into the role that is played by the lay public in theconstruction of bodily pathology, and during recent

years, the impetus to conduct studies on the laycontribution seems to have developed apace. Such animpetus is evident, for example, in Arksey’s (1998) work

on Repetitive Strain Injury, as well as in Epstein’s (1996)study of AIDS. On a more restricted level, Kerr,Cunnigham-Burley and Amos (1998a,b), have underlinedthe contribution that lay participants can make to clinical

practice and public policy in the field of human genetics,and Brown (1992, 1997), has emphasised the virtues oflay thinking in his analysis of ‘lay epidemiology’. These

various studies are often accompanied by a declarationthat divisions between lay and professional thinkingabout disease are now blurred and indistinct. (See for

example, Arksey, 1998: p. 9; Epstein, 1996: p. 3; Furnham& Kuyken, 1991: p. 330; and Popay & Williams, 1999).In this paper we intend to look at lay and professional

ideas about the nature of chronic fatigue syndrome(CFS), and in particular, at the ways in which under-standings of the disorder are developed in a clinicalsetting. Our data are drawn from observations of

consultations between sufferers and physicians in aUK medical out-patients clinic. On the basis of ourobservations, we note that in the realms of symptoma-

tology, aetiology and treatment evaluation, lay peoplehave quite distinct ideas about CFS } ideas that areoften in conflict with those of medical professionals.

Thus, lay sufferers, for example, operate within adifferent conceptual terrain from that of many profes-sional experts. They call upon different kinds ofhypotheses to explain their symptoms. They hold to

conflicting ideas about the order of causal sequences,and they emphasise different kinds of phenomena intotheir accounts of illness. As a consequence, the clinical

consultation often appears to take on the form of acontest between physician and patient to define thenature of the patient’s disorder (cf. Salmon, Peters &

Stanley, 1999: p. 375). Indeed, borrowing from theanthropological work of Bailey (1969), we can view theout-patient clinic as a site of a micro-political struggle in

which patients and physicians seek to define, on theirown terms, what the ‘problems’ truly are, and how theyought to be investigated and managed. It is that politicalarena and the debates that resonate within it that we

intend to describe and analyse in this paper.Although our primary evidence is drawn from a study

of number of small-scale interactions (114 consultations

observed, of which 16 were audio-taped), we shouldpoint out that much of what went on in the clinicalconsultations is routinely echoed in a much wider

political field. For example, the physicians that wereport upon tended, in the main, to hold to ideas aboutCFS as expressed in the (UK) Joint Working (1996)

Group Report of the relevant Royal Colleges, whilstsufferers expressed views much closer in accord with

those of the ME/CFS Charities Alliance (1997). Thelatter is an alliance of various well-organised patient

pressure groups such as ME Action, and the MEAssociation. Broadly speaking, the members of suchgroups tend to recruit evidence, expertise and enthu-

siasm to support a vision of CFS as, primarily, a bodilypathology } possibly of viral origin. The former }

speaking through the various Royal Colleges } tend torecruit evidence, expertise and argument to cast doubt

on viral origins and seek to implicate a much wider arrayof factors into an understanding of the disorder. Ofthese, the most contentious - from a patient’s point of

view } are psychological factors. Such multifariousviews about what CFS ‘is’ are played out in reports andposition papers, professional journal articles, patient

newsletters and national political movements. They arealso played out in small scale, doctor-patient, interac-tions, and it is there that we have elected to focus our

attention. As a preface to that, however, we firsthighlight some important differences between lay andprofessional parties about the nature of CFS as they areexpressed in text and (national) political action.

The ‘expert’ report of the Royal Colleges on CFS

In October 1996 a Joint Working Group (JWG)Report on CFS was published by the London based

Royal Colleges of Physicians, Psychiatrists and GeneralPractitioners. The Report had been commissioned bythe UK’s Chief Medical Officer. It provided a review of

current and past research, and was intended tosummarise and clarify the state of knowledge on CFS.A brief summary of the report and the criticisms thathave been levelled against it provides an inroad into an

understanding of the conflicting claims that surroundthe nature of CFS, and thus a suitable context for thepresentation and examination of our own data. Here, we

consider the Report and the response from patientgroups in relation to three areas: signs and symptoms,aetiology, and treatment.

On signs and symptoms

The JWG stated that case definition for CFSnecessitates: (1) Six months of severe disabling fatigueaffecting physical and mental functioning; (2) thepresence of somatic symptoms including such things

as, myalgia, chest pain, headache, and joint pains. (3)Psychological symptoms may also be present, includingdepression and anxiety. However, organic brain condi-

tions, psychosis, bipolar disorders, and eating disordersare excluded. (4) Known physical causes of chronicfatigue are also to be excluded. As we shall see, the

emphasis on exclusions rather than inclusions tends tocharacterise the condition as a whole.

J. Banks, L. Prior / Social Science and Medicine 52 (2001) 11–2312

As far as physical symptoms are concerned, one of thebiggest problems reported by patients is that of muscle

pain, and fatigue. However, the working group claimedthat there ’is no consistent evidence that CFS isassociated with a primary disorder of muscle, and no

convincing evidence of any changes in muscle structureof function other than those secondary to inactivity’(1996: p. 13). In other words, muscle pains and disorderare said to arise because fatigued patients remain

inactive. (It is important to note the suggested order ofcausation here). The Report’s authors did, however,note that over twenty published studies have established

the presence of psychological problems in CFS patients,and subsequently argued that, ‘Depression and/oranxiety represent the strongest risk factors so far

identified for CFS’ (1996: p. 15). However, the JWGcautioned against any ‘simple equation of CFS withpsychiatric disorder’ (1996: p. 15).

On aetiology

A common assertion by patients is that their

condition is caused by, or at least triggered by, a viralinfection. The working group, however, concluded thatthere was no substantive evidence for the causal

association (1996: p. 10). Working Group membersargued that patient beliefs are shaped by the fact thatviral infection is often the most significant experience in

an individual illness history, and that it was thereforeunderstandable that patients would project responsibil-ity onto it. The Report’s authors also looked at claims

relating to immunological dysfunction } which aresometimes implicated by sufferers in the causal se-quence. Their conclusion was that the abnormalities thathave been highlighted in immunological research are not

suggestive of an organic origin of the disorder. In fact,they argued that such abnormalities may be related to‘behavioural and psychological factors in individual

subjects’ (1996: p. 13).Overall the working group adopted a ‘multifactorial’

(1996: p. 37) and ‘biopsychosocial’ framework for an

understanding of CFS. Since, ‘CFS cannot be consid-ered either ‘‘physical’’ or ‘‘psychological’’’(1996: p. 18),but a condition that arises out of the interaction betweenmind, body and the patient’s social world. (See also,

Hickie et al, 1996; Holmes et al., 1988; Van Mens-Verhulst & Bensing, 1998; Strauss, 1996).

Treatment

It is the biopsychosocial philosophy which informs the

working group’s approach to treatment (1996: p. 23).There are two main recommendations. The first of theserelates to exercise. The JWG ‘strongly reaffirm that

cautious, controlled increases in activity remain thecornerstone of the management of CFS’ (1996: p. 24).

The second relates to the use of cognitive behaviourtherapy (CBT). CBT is aimed at reorienting the way that

people perceive social situations and how they respondto them. With chronic fatigue the aim is to get people tothink differently about their illness, and its symptoms. In

practical terms it involves getting patients to considerother attributional causes for their fatigue and distress.This is linked to the idea that illness attribution has aprofound effect on disability. For example, it is argued

that those who have more rigid views about the organiccause of their illness have a higher chance of severeimpairment. The Report’s authors note that there are

conflicting findings from published studies, but comedown in favour of CBT believing it to be ‘a promisingand cost-effective approach’ to CFS management (1996:

p. 25) } see also, Sharpe (1998).The JWG, then, clearly recognise the physical

symptoms experienced by CFS sufferers, but adopt an

approach that locates those symptoms within a psycho-logical and social matrix. Further, the JWG rejected theuse of the term Myalgic Encephalomyelitis (ME) (whichis favoured by patient support groups), to refer to the

syndrome, on the grounds that such a term cannot beoperationalised (1996: p. 5). It was further argued thatME refers to a particular biological pathology involving

inflammation of the brain and spinal cord, and that CFSpatients fail to exhibit such pathology.

The response of patient (lay) support groups

The formal response to the Royal Colleges Report onCFS by patient organisations was articulated by theME/CFS Alliance. The Alliance combines the voice ofME Action, the ME Association, Westcare and the

National ME Centre. (The emphasis on ME, rather thanCFS in these titles is, of course, significant) The Alliancewelcomed the clear position outlined within the report in

so far as it stated that CFS is a ‘real’ problem, (ME/CFSCharities Alliance, 1997). (Patient support groups arekeen to underline the fact that ME/CFS is a ‘real’

disease and needs to be formally recognised as such }

see, for example, Boseley, 1998). Nevertheless, theAlliance was disappointed to note that the Report was

biased in favour of ‘psychiatric models of causation andtreatment’. The critical response of the ME/CFSAlliance to the conclusions of the JWG Report wasconsequently supported by a campaign to discredit the

latter in the eyes of the UK Department of Health. Thecampaign was directed at the government and Parlia-ment, and was organised around the slogan, ‘Fighting

for Truth’ or ‘For T’. In tandem with a petition callingfor the withdrawal from circulation of the RoyalColleges Report, campaigners also submitted a number

of papers that argued against a psychological frameworkfor the understanding of, and treatment of ME. We

J. Banks, L. Prior / Social Science and Medicine 52 (2001) 11–23 13

highlight some of the contested issues in the paragraphsthat follow.

Signs and symptoms

Patient groups and critics of the Royal CollegesReport believe that the evidence associating psycholo-gical morbidity with CFS is essentially inaccurate.Indeed, rather than a focus on psychological problems,

the Alliance’s members generally feel that more detailedinvestigations of the viral and other causes of musclepain and joint dysfunction is required from the research

agenda. (See, for example, Hedrick, 1997).Where psychological problems are evident they

should be regarded as a consequence of the organic

disorder rather than as a trigger for such disorder.

Aetiology

The ME/CFS Alliance highlight articles published inpeer reviewed journals that suggest an organic aetiologyfor ME/CFS.

Treatment

The ME/CFS Alliance argue that CBT and gradedexercise might well serve as coping strategies, but remainunconvinced about their effectiveness as cures for the

disorder. The ME/CFS Charities Alliance (1997) alsorejects the idea that physical deconditioning is respon-sible for the post-exertion fatigue that is experienced by

patients.In looking at signs and symptoms, aspects of

aetiology, and the treatment or management of ME/CFS, we can see how it is very much a disorder under

construction. Indeed, CFS/ME, as with much that isnew in science and technology, may be said to be subjectto a large degree of ‘interpretative flexibility’ (Pinch &

Bijker, 1989). Not just flexibility in how people accountfor the disorder, and how it ought to be managed, butalso in what it ‘is’. Such flexibility is, of course, evident

at many different levels and many different sites. The sitethat we wish to focus on is the CFS clinic. It is to therethat we now turn, and, in particular, to the ways inwhich doctors an patients seek to position themselves vis

a vis the various debates about symptoms, causes andtreatments.

Methods of study

The data reported on here formed part of a widerstudy on lay (patient) understandings and accounts ofCFS/ME. Within the clinic, the research was built

around the collection of ‘naturally occurring data’(Potter, 1997), whilst structured interview data was

collected from patients in their own homes. For theobservation and interview work, ethical approval was

sought from the area committee in which the clinic wasbased.The broad themes that we wished to research had

been derived from an analysis of (UK) patient supportgroup newsletters, and ‘expert’ documentation on thenature of CFS/ME (of the kind already referred to).They all relate to the aforementioned issue of

‘interpretative flexibility’ (Pinch & Bijker, 1989: p. 27).In our case, the flexibility that interested us concernedthe different ways in which lay and expert (medical)

parties variously interpret evidence about ‘disease’.The clinic in which the research work was situated

was, at the time, the only one in the region dedicated to

the examination of CFS patients. We had originallyintended to observe 100% of clinic consultations in a 6month sequence } subject to patient consent. For

various reasons it proved impossible to follow throughon an uninterrupted sequence, but given our researchaims we have no reason to believe that data from‘missing’ and ‘refused’ consultations would have affected

our analysis in any substantial manner. Some 114consultations were eventually observed. In line withour focus on the variability of interpretations, our

observation protocol specifically concentrated on thefollowing issues. (i) The main symptoms that patientspresented with. (ii) Any causes, or origins of the

disorder, that were mentioned by the patients. (iii)Patient and expert references to diagnostic labels. (iv)How, if at all, psychiatric factors were introduced intothe consultation. (v) The physician’s key recommenda-

tions for the management of the disorder. (vi) Openpoints of conflict or disagreement that arose betweenpatient and physician during the consultation. The

social scientist, who had already contacted patients toseek their written consent for inclusion in the study, wasintroduced to patients by the physician as, ‘the person

interested in researching your condition’. The socialscientist was not present when any physical examinationwas undertaken. Toward the end of the 6 month

sequence we made additional written requests to patientsto audio-record their consultation. We had intended torecord 20 such consultations, but managed to obtainonly 16 approvals in the time frame that we operated

within. Audio-tapes were transcribed and coded }

mainly in accordance with the themes mentioned in theprotocol above. Of the 114 patients, 71% were females,

(11 of the audio-tape recordings relate to females).Almost 90% of the patients were aged between 20 and59 years old, and the modal age category was 30-9. All

patients were ‘white’. As chapter four of the 1996 JWGReport points out, however, a prevalence of females inthe clinic population should not be taken to be

suggestive of prevalence in the community. Indeed, theepidemiology of CFS is complex, and research findings


are often contradictory (Wessely, Hotopf & Sharpe,1998; Lawrie, Manders, Geddes & Pelosi, 1997), so little

can be deduced from our patient profile in that respect.Three physicians and one psychiatrist were involved in

the consultations. Of the physicians two were female and

one male. Female patients were examined only in thepresence of a female physician or nurse. The psychiatrist(male) was not always present. On occasion a (male)physiotherapist also attended clinic sessions. Female

nursing staff were present in the clinic, but not activelyinvolved in the consultations. Although there werevariations in emphases between physicians, the expert

knowledge that was expressed within the clinic was, as wehave stated, very much in accord with that represented inthe JWG (1996) Report to which we have previously

referred. Indeed, one of the members of the JWG had beenresponsible for the original establishment of the clinic.Patient responses to the clinical encounter are

invariably unique. With that in mind, we cannot hopeto describe the rich array of detail that accompanied thepresentation of the claims and accounts that wereadvanced in the fatigue clinic. What we have attempted

to do is to report on ‘typical’ features of the physician/patient interchange. Many of those features werereasonably easy to identify. For example, all of the

patients that we observed, or recorded, presented withphysical symptoms, made reference to their beingfatigued (though they did not always use that term),

and reported deficits in their everyday functioning. Eachof the patients placed emphasis on their physical achesand pains. And each of them had been referred to theclinic by a primary care physician (G.P.) on account of

the presence of ‘unexplained symptoms’. Beyond that wehave had to work in terms of features displayed in theoverwhelming majority of consultations rather than in

every consultation. In that light, we have chosen, forexample, to focus our attention on consultations wherepsychological factors were introduced into the patient/

physician interchange. Psychological factors were notintroduced into all the consultations. In particular, theytended not be referred to when test results were suggestive

of a physical pathology (in which event, a diagnosis ofCFS was usually inappropriate). Since our focus isexplicitly on the examination of a medical controversy,we have chosen to make no reference to what some might

regard as such ‘deviant cases’ (Perakyla, 1997). Psycho-logical factors were mentioned, at some point, in each oneof the 16 audio-recorded consultations.

Disease in interaction. The micro-politics of the clinic

Accounts of illness

What we are going to point to below are accounts ofillness (Radley & Billig, 1996). That is to say, we are

going to look at claims, rather than ‘beliefs’, about thenature of illness. Referring to accounts rather than

beliefs enables us to focus on how people publiclydemonstrate that they are ill rather than with what theyinwardly ‘think’ about illness. In like manner, it also

enables us to focus on what doctors ‘do’ rather thanwith what they believe.As we shall see, translating ‘suffering into disease’ is

an awkward business for ME/CFS patients (Hyden &

Sachs, 1998: p. 176). At root, this is because there israrely any conclusive, independent, evidence of physio-logical abnormality for sufferer’s to point to. Thus, as

we have stated above, the single most importantsymptom that is associated with CFS is an experienceof fatigue that is unrelieved by rest. In addition, of

course, there are numerous other symptoms experiencedby patients, but most consultations either open with ortouch very quickly upon the issue of rest, sleep and

recuperation. In following through on the extractsbelow, however, we should keep in mind that patientaccounts of illness are in many respects pre-structuredthrough the interrogative strategy of the physicians.

Patient accounts are only allowed to unfold in asequence that is determined by the clinician. In thatsense power relations enter into the very structure of

clinic talk, aside from any consideration of content. (See,Ainsworth-Vaughn, 1998).In each of the following extracts ‘D’ denotes the

physician, and ‘Pn’ the patient and number.

1 D: Are you refreshed by sleep? Do you have a verygood sleep?

2 P12: No. Never.3 D: Did you used to sleep alright?4 P12: Yeah. Fine. Well; I was always a bit of an

insomniac even as a child.

Or as follows:

5 D: . . .Do you feel refreshed by sleep?6 P6: Oh no. Oh no. This is, this is, there all the time

you see. I feel too ill/. . .

The overwhelming sense of fatigue } of waking, andfeeling even more tired than on going to bed } means

that patients often report an incapacity to deal with evenrelatively simple matters, such as filling in a form, orattending the consultation, without becoming ex-

hausted. Yet, although patients are happy to discusssleep and rest patterns with the physician, they areusually much more keen to focus on other, mainly

physical, symptoms of their illness. Indeed, they tend totreat the fatigue as a consequence of what they considerto be a more fundamental (but as yet, unknown)

disorder, rather than as the core feature of theirexperience. The sense of fatigue that is spoken is usually


presented as a form of bodily, rather than mentalexhaustion } though both can figure in a patient’s

account. Thus, a patient might say something like, ‘mybody cannot support me’, or tell how they experiencesuch terrible weakness that they cannot stand up.

Whatever the detail, it is predominantly reports ofsomatic, rather than affective states that appear inconsultations, and the general preference for a diagnosisof myalgia (muscle pain) is, in many ways, a testament

to this. The following extract illustrates the generalissues.

7 D: Okay. Now. If you had one wish of a symptomto be taken off what would that be?8 P10: One wish?

9 D: Yeah.10 P10: To feel better11 D: Okay. To feel better in what way?

12 P10: Um.13 D: Pains? Aches? Tiredness?14 P10: Yeah, aches and pains. Yeah, aches andpains.

Indeed, many of the verbal reports are suggestive of

the fact that patients experience their illness primarily asa whole body event, rather than as a disease of specificorgans and sites. And patients’ letters to newsletters

such as, for example, the ME Association’sPerspectiveswould further support such an interpretation. Never-theless, during the consultation, the emphasis is nor-

mally on localising the disorder to a specific organ, limb,or anatomical sub-system. In the first case, below, thefocus is on the ‘nervous system’. In the second, a much

wider range of sites is reported upon.

15 P2: Well all I can say is it’s just the chronicweakness that I am having, it makes me feel as if my

whole nervous system is affected and/17 D: /In what way do you say the nervous system isaffected? What symptoms do you talk about when

you say the nervous systems affected?19 P2: We well, as I say, it normally starts with rapidchronic weakness

20 D: Yeah.

Likewise with the following patient:

21 P22: And these noises I had here was no better sogradually these noisesstarted walking right into my

head and eventually it went through my headcompletely, I got it all over my head at the momentnow.

24 D: And noise/26 P22: /and noise. And it also makes me feel. . . it’slike as if I’ve got a film over my brain, it makes me

feel very, very, ill. It makes me feel giddy. . . I gotgiddiness and after 4 or 5 hours, and I

28 can’t move out of bed, I’m very ill. I got to vomit,it affects my eyes.

As this last extract suggests, aches and pains take

many forms, but the most common symptoms relate toreports of pains in the muscles and joints of upper andlower limbs, pains in the upper back, headaches and

vision problems, chest pains and breathing problems. Aswith the above, stomach pains also figure. A presenta-tion of the weak and vulnerable body, is therefore a key

feature of clinic interactions, and it is not unusual to seepeople entering the clinic on crutches; with limps,supported on the arms of relatives, and occasionallywheeled in by means of wheel chairs. From the patient’s

perspective, it is the body that forms the locus of painand it is the body that the patient brings forward fortreatment and cure. From the physician’s point of view,

however, it is the sense of ‘being exhausted’, that iscentral, and this usually involves extensive references tolimitations of physical and cognitive functioning rather

than to specific sites of pain and discomfort. For, as wehave noted above, the JWG argued that there was no‘convincing evidence’ (1996: p.13) that muscle structure

and functioning is to be associated with CFS.In line with the emphasis on somatic effects, of course,

patients often construct narratives of physical aetiology.References to earlier fevers, infections, and thyroid

problems are frequent.

29 P7: Do other people you see say that symptoms

like this have happened after glandular fever or?/31 D: /Yeah. After something. Sometimes afteraccidents, sometimes after anything that will desta-

bilise them or make them bed-bound. Um, we’ve hadguys after malaria, we’ve got guys, one at themoment, . . .had streptococcal sore throat and nowhe can’t stand up for long, he’s absolutely white.

In the world of the clinic, viruses do not perhapsfigure quite as largely as one might expect on the basis of

the literature, (Wessely et al., 1998: p. 176, for example,state that some 72% of patients who attend specialistUK clinics trace their problems to a viral infection). Yetit is in the virus theory of infection that we truly meet the

nub of the contest between patients and physicians. Acontest that is nicely illustrated in the following extract.

35 P6: /this is, and I say it is a virus attacking mybrain all the time.36 D: What gave you that idea?

37 P6: Well. Well, er. What it is is M.E. is a virus.38 D: No. What gave you that idea? Where did youread that?


This appeal to a disease state known as ME and theaccompanying reference to a virus attacking the brain

(that is, the body) sums up the predominant patterns ofpresentation in the clinic. Patients regard themselves ashaving serious physical problems, which have unknown

physical causes and which require physical examination.Thus use of the term ‘ME’ by this particular patientserves to underline the biological and body based natureof the sufferer’s condition. As we have suggested above,

however, many physicians are generally suspicious ofself-diagnosed or G.P. diagnosed ME. More impor-tantly, they often seek to widen out the range of factors

that might be implicated in the cause, course andtreatment of the disease that is associated with CFS. Inthe following case, the physician is responding to the

patient’s claim that his illness began with a viralinfection. In delivering his response he seeks to framethe patient’s biological determinism in a much wider

web.

39 D: Yeah. Funny isn’t it? But I’m sure it’s theillness that started it, but its virtually always on the

background of hardship. Hardship. Life is neveruncomplicated. It’s these complications. So I thinkit’s to do with stress, I do. Physical endpoint of stress,

and that illness you had was a stressor, the final thingthat whacked you over.

As is hinted at here, physicians tend to drawdistinctions between ‘predisposing’, ‘trigger’, and‘perpetuating’ factors in the disorder (Sharpe, Chalder,

Palmer & Wessely, 1997), and to concentrate theirattention on the last of these. Indeed, it is in terms of theperpetuating factors that psychological states can be

implicated. Patients, on the other hand tend to view the‘trigger’ factors as the core of the disorder. From theirviewpoint, it is to the core that efforts for treatment and

cure ought to be directed. Reference to psychologicalfactors is, in that context, quite unnecessary, since anypsychological abnormalities that may be present are

merely the consequence of physical processes. Cure thebody and the psychology will balance itself. As we shallsee, however, professionals have contrary ideas.

Connecting body and mind

The presentation of physical symptoms by the patient

is invariably met with by a physical examinationconducted by the physician. This usually takes the formof an initial, routine physical examination in the clinic

(which the researchers did not witness), and a subse-quent call for a battery of diagnostic tests. X-rayexamination, a series of blood tests, and CT or MRI

scans } bone scans, blood flow scans and so on } arefrequently requested by the physician after the first

consultation. Referrals to other specialists are alsocommon } these may take the form of referrals to

ENT clinics, urologists, cardiologists or whatever isdeemed to be necessary. For example, the patientreferred to below had complained of a pain in the hip.

43 D: Shall we X-ray that for you? Would you like usto? Would you like us to X-ray your hips?45 P: I would do anything.

46 D: Because the thing is that if we see some arthritisin there, but if we don’t see arthritis in there at leastwe would be able to tell you ‘No. It isn’t’. So by the

next time you come we’ll be able to tell you. . .

On the second, and later consultations the physician istherefore in possession of a wide array of physicalevidence concerning the patient’s bodily state. However,

as can be guessed from the fact that CFS is, in large part,a diagnosis based on exclusions, the results of the testsusually fail to highlight any serious physical pathology.Where physical pathology is discovered, the patient is

referred on to suitable treatment or managementprogrammes. Evidence of such things as minor thyroidproblems, low blood pressure, and anaemic states are far

from uncommon. Evidence of serious viral infection isremarkably absent, or, in the language of pathology,‘subtle’.

It is noticeable from what we have said concerning thepatient‘s viewpoint, above, that matters concerningpsychological or social states of clinic attendees arenot ordinarily brought forward in consultations. Pa-

tients regard themselves as having problems withphysical functioning that require medical solutions.The position of the JWG, on the other hand, is that

wider social and psychological factors are implicated inthe very nature of CFS. It is not perhaps surprising,therefore, that it is usually left to the physician to bring

forward for consideration any psychological factors thatmay be pertinent. In the following extract the physicianuses the presence of some visiting medical students to

broach the topic of minor psychiatric disorder.

49 D: Well, here’s an interesting thing about this lady[comment directed toward visiting medical students].

She’s fatigued after an illness, okay? The interestingthing about her is that in the past she’s had post-nataldepression. There is a link between fatigue and post-

natal depression, they’ve both got the same chem-istry. Does this remind you of post-natal depressionat all? [Question directed toward patient]

54 P10: Some things, but I feel worse now than whenI had post-natal depression. Um. I just55 feel as if I. . .you know if I do a daily chore like

[cleaning] or anything it just knocks the stuffing outof me.


There are two issues worth highlighting here. The firstis the fact that the previous episode of depression is

introduced into the consultation by the physician andnot the patient. The second is the reference to‘chemistry’ } in particular, brain chemistry. We will

return to the chemicals later. For now, we merely notethat CFS patients can be strongly averse to consideringpsychological conditions as being fundamentally im-plicated in their illness. Indeed, the fact that these

consultations take place in a medical clinic rather than apsychiatric clinic is, in part, testimony to the reluctanceof patients to situate psychological problems as central

to their symptom pattern. (A psychiatrist was, however,often present at our consultations, but he played littlepart in the interactions). Where a history of psychiatric

illness is evident, of course, patients have little choice butto grasp the nettle and account for it in some way. Yet,in the consultations that we observed, it was usually the

case that where patients recognised the presence of bothsomatic and psychiatric symptoms, they tended tointerpret the psychiatric pathology as a product of thephysical pathology, rather than the other way round.

The following patient, for example, who attended theclinic on crutches, and who reported a number of seriousphysical symptoms (including headaches and double

vision) illustrates the issues well. Initially, the physicianreads from his notes.

57 D: MRI scan tells us that you haven’t got

MS. . .Blood tests, fine. . .antibodies. . .fine/58 P65: /What is it then?59 D: Well, we’ve checked out the central nervous

system and there’s nothing untoward there. Maybewe ought to check out the peripheral system.[Returns to his notes]

70 D: You were treated for depression in. . .?/71 P65: /The doctor [i.e. the General Practitioner], hejust kept on saying I was depressed.72 D: And were you?

73 P65: I’m housebound, I can’t get out of bed in themornings. . .I have to climb the stairs on my bum. . .

Psychiatric factors were not discussed in everyconsultation. (However, anti-depressant medication ofsome form was recommended during 57% of consulta-

tions, and a reference to psychiatric factors arose in amajority of consultations). Where such factors wereintroduced, patients tended to regard the symptoms of

depression, and of other psychiatric disorders, as aconsequence rather than a cause, or even a centralcomponent of their physical problems. It is a point that

is also evident in the next extract. The patient isdescribing her experiences with a private specialist.

75 P33: Anyway like he examined me and whatever,and um, we had a good talk and er, what happened

then, he wrote back to my doctor like I said, he didn’ttell anything, he did say to me there are symptoms of

ME, the rapid fatigue you’ve got and whatever. I toldhim, I said I know I was depressed at the time, butit’s not depression it’s the fact that it’s the rapid

weakness is getting me down.80 D: Yes.

This reluctance to countenance the involvement of a

psychological disorder in the symptom patterns is alsoexpressed in patient journals, such as the MEAssociation’s Perspectives. Indeed, where psychological

symptoms are discussed in such journals, they arecommonly referred to a ‘brain symptoms’, or as aspectsof brain disease rather than as emotional states, (see, for

example, Perspectives, 67, 1998). It is not so surprisingtherefore that we can read in the journal editorialsnumerous statements to the effect that psychological

symptoms are ‘the result of the disease process, they donot cause or prolong the illness.’ (Perspectives, 69, 1998,our emphasis).Depression is not the only psychiatric disorder said to

be evident in CFS patients. Symptoms of panic attacks,generalised anxiety disorder, and mixed anxiety anddepressive episodes are also deemed to be present in

many patients. But, as we have been keen to emphasise,such ‘readings’ are closely contested by patients (seealso, Salmon et al., 1999; Risdale et al., 1994). On the

basis of our analysis of the patient support literature, itwould seem that sufferers regard mention of a psychia-tric disorder as a ‘dismissal’ of their complaints, (see alsoline 71). A ‘proper illness’ it would seem is one in which

the locus of the disorder is found in the body rather thanthe mind (Elliott, 1999; Greco, 1998). Despite this, anassociation between CFS and minor psychiatric disorder

is well documented in the clinical literature (Wessely,1995; Wessely et al., 1998). We have no particular axe togrind on the issue. What is of interest is the manner in

which the physician integrates matters relating to minorpsychiatric disorders into the consultations. For, theintegration is achieved primarily through a discussion of

brain chemistry (albeit a discussion carried out mainly inlay terms). The focus on brain chemistry has theadvantage } from the patient’s standpoint } ofkeeping their illness firmly within the bounds of soma

rather than psyche. From a social scientific point of viewit is of additional interest because it reflects a distinctivelate twentieth century understanding as to how psychia-

tric factors can be conceptualised, and how the divisionlines between mind and body are being fundamentallyredrawn.

Enrolling brain chemicals

The CFS clinic } as with most, if not all clinics }

relates to its patients on an individual and pragmatic


basis. As well as serving as a site for detailed physicalexamination, it is also a place for speculation, hunches,

untested hypotheses, guesswork about causes andconsequences and perpetuating factors. In the absenceof any firm evidence of physical pathology, of course,

the room for speculation may be considerable. In fact,the existence of undetected physical pathology can neverbe ruled out, and the possibility that there may be‘something lurking’ in the patient’s body is always a

cause for some concern with both primary andsecondary care physicians. Nevertheless, as far astreatments are concerned, there is limited room for

manoeuvre. Recommendations to exercise, or to followa programme of physiotherapy, or of CBT are far fromuncommon. In the following extracts, however, we have

elected to focus on consultations where the contestabout psychological states was most marked and wherethe physician tended to bring to the fore evidence of

previous psychiatric problems. What is of particularinterest to us, is the way in which the psychiatric statesare redrafted in the language of chemistry therebyenabling the physician to link the physical sense of

disease with psychological states, without in any waymentioning concepts of mental illness or psychiatricdisorder. Thus:

120 D: Um. In the sense that you’ve had, and this issomething that you’ve got in common with them,

panic attacks before/121 P18 Yeah/122 D Which is really, really, interesting becausethat’s caused by the same chemical as gives rise to

fatigue124 P18: Right.125 D: They’re not a coincidence.

126 P18: Okay.127 D: They’re both controlled by a hormone calledserotonin and that in turn controls melatonin levels.

Whilst in the following extract the physician isattempting to coax a patient who remains insistent that

she has a viral induced disorder, that her suffering can beinterpreted in other ways.

129 D: What we’ve got to try and do is ignore

everything that you believe it is or we believe it is andinvestigate you and say, ‘right what biologicalabnormality can we find in you’. My guess is, my

guess is that you don’t have enough blood pressure tosustain you when you’re standing up.133 P23: Yeah, with that I see what you’re saying,

but I still find the same thing when I haven’t done it.135 D: Right. The cause of that is a drop ofserotonin, a chemical in the brain, which if we don’t

have enough of that it will make everything gowrong, or some things and not others. Completely

unpredictable. . .Simply because when we give peopleserotonin lot’s of these things, including the blood

pressure problem disappears. . .

By enrolling serotonin as an ally, the physician opens

up the possibility of prescribing, at a later point, anti-depressant drugs such as Paroxetine (Seroxat), Sertraline(Lustral), or Fluoxetine (Prozac). Further, it enables heror him to introduce psychological factors into the

consultation in a physicalist rather than a psychiatricframe of thinking. That is to say, in a frame that wouldbe more acceptable to patients. In the clinic in which our

work was executed, the physician often recruited a‘natural’ remedy } St John’s Wort } in place of thesynthetic drugs mentioned above. The use of St John’s

Wort (Hypericum) } a preparation often referred to as‘nature’s Prozac’ in the literature (Chavez & Chavez,1997), and which is widely used in many European

countries } also found favour with many patients onaccount of it status as a herbal remedy. In the extractthat follows the ‘herb’ is not so well received, butmention is made of some other key therapies in the

treatment of CFS (lines 150–2). Readers may furthernote the reference in lines 148–9 to secrecy } this was onaccount of the patient’s reluctance to accept that his

problems may be psychological.

140 D: In the first instance okay I’d like you to try a

herb okay?141 P3: A herb!142 D: It might fix it, it might fix it. We’ll give you ago on it before you come back then ‘we’ll say yes or

no does it work, yes or no’. I’ll take one look at youwhen you come back and [the psychiatrist] here willtake one look at you and say it hasn’t worked or

okay this works. It’s called St John’s Wort ever heardof/146 P: No.

147 D:. . .The Germans use it for anxiety, you buy ityourself in a health food shop. It’s a148 way of taking a low dose of serotonin and

nobody knows do they?. You say, ‘oh I’ve149 got to take some supplements for my health’.This is something, this is just the start150 mind, because what we gotta do is teach your

body to stop switching this anxiety151 response on. So that involves: A } some form ofmedication but B } more importantly

152 what is called, Cognitive Behaviour Therapy.That is. . .

References to serotonin reflect a distinctively modernway of looking at psychiatric disorder. Serotonin } a5HT compound } was identified and described between

1947 and 1953. Its implication in depressive states was along drawn and complicated business (Healy, 1997). It


owes its involvement to the so called monoaminehypothesis } in this case, the hypothesis that low amine

states produce depressed psychological states. Duringthe 1970s 5HT was said to be associated with anxietystates, catecholamine with depression and dopamine

with schizophrenia. Whatever the merits of those claims,the interpretation of depressed states as being due tochemical imbalance opened the way to a focus on a newchemical fix for psychological problems. In the case of

5HT, the chemical fix was eventually referred to as anSSRI (of which Prozac is one, and Seroxat another).Interestingly, the ME sufferers newsletter Perspectives(1998, 69,19) reported, ‘seeing that our illness is mainlyneurological, affecting brain chemicals, it makes sensethat [SSRI’s] will help’. In this clinic an alternative

chemical hypothesis for depression was also called uponin those cases where SSRI’s seemed to lack beneficialeffects. That hypothesis invoked a surplus of acetylcho-

line (another neurotransmitter) rather than a deficiencyof serotonin, and necessitated the use of alternative(trial) drugs. In the extract that follows, it is of interestto note the use of the strategy that (a) discusses

psychological states in terms of physiological factors,and (b) links physical symptoms with psychologicalstates via references to brain chemistry. Thus:

153 D: . . .I see you’ve tried Seroxat before.154 P7: Yeah. I went to one of the doctors and she

said it could be depression and so I give it a try and itmade me feel worse to be honest.156 D: But, guess what? Sometimes in some peoplethe blood pressure responses are cured by that, so

they’ll say, ‘well yeah it must have been depressionthen because I feel miles better on this’.157

158159 P7: hmm. But I’m not a depressed person yousee. It can get you down but I want to do things, I

want to get on with it

181 D: [addressing others present] . . .we know he’s

not short of serotonin because he’stried Seroxat andthat made him worse, so that moves us on then toacetylcholine as the other main culprit. . .

During the later 1950s, the psychiatrist Roland Kuhnargued that vital depression did not always express itselfin terms of overt sadness, but often in terms of lowered

vitality, retardation in thinking and acting, and‘hysterical reaction’. Moreoever, such depression wasno longer to be framed in terms, say, of the old

psychoanalytic language of ‘object loss’, or of existentialdespair, but in terms of brain chemistry and neuro-transmitters. The discovery of Chlorpromazine, after all,

had indicated how the psychoses could be modifiedchemically, and now what was required was a chemical

equivalent for the treatment of the neuroses. Kuhn’ssolution to the equation was the use of a drug called

imprimamine } a drug that can legitimately be referredto as the first anti-depressant (Healy, 1997). By linkingthe tricyclics with psychological states, Kuhn, together

with others, moved psychiatry into the realm ofpsychopharmacology and gave a new interpretation tothe meaning of ‘depression’, ‘anxiety’ and obsessive-compulsive behaviour.

In retrospect it is clear that biological psychiatry’sways of linking mind and body also facilitated thepossibility of by-passing psychological language entirely.

For the vocabulary of serotonin, acetylcholine, andsteroid states, involves no real reference to mood, stillless to ‘depression’ and anxiety } though, as we have

seen, both terms appeared in the CFS clinic. Instead,patient and physician can situate themselves on commonground by indulging in a materialist language of

neurotransmitters and their receptors. Psychiatry isthereby turned into neurology. The adoption of thisstrategy doesn’t resolve every point of conflict, ofcourse. Thus patients still voiced scepticism about the

imperative to ‘exercise, exercise, exercise’, or theplausibility, for them, of a programme of physiotherapy.Yet, where psychiatric states were highlighted by the

physician, the lexicon of biochemistry at least enabledthe contesting parties to focus on soma rather thanpsyche as the site of disorder and thereby to engage

in a distinctively late twentieth century interpretationas to how emotional states might enter into states ofillness.

Conclusion

In an essay concerned with the history of plastics,Bijker (1989, p. 168) introduces the concept of atechnological frame. Such a frame, he states, specifies,

‘what counts as a problem as well as the strategiesavailable for solving the problems and the requirementsthe solution has to meet’. Bijker argues that technolo-

gical frames link things to people in a ‘seamless web’,and further serve to structure the interactions ofmembers of a social group. For example, frames call

for the enrollment of proponents and allies (both humanand non-human), and foster the exclusion of opponents.Each social group involved in the development of atechnological process will thereby seek to mobilise its

forces and allies so as to propagate its variant of boththe problem and the solution. The contests between suchgroups will proceed until a position of ‘closure’ (Pinch &

Bijker, 1989) is arrived at. The latter depends, of course,on a general agreement among all contesting parties thatthe real problem has been identified and, finally, solved.

Borrowing from Bijker’s conceptual toolbox we havealso spoken of frames, and of the enrollment of non-


human agents (such as Serotonin) so as to promote aspecific interpretation of, and solution to, a problem.

Though, whatever the terminology used, it is clear thatin the realm of CFS/ME ‘closure is far from apparent.Patient groups of the type mentioned earlier, clearly

have a different conception of their problem than do themembers of the Royal Colleges. Consequently, laysufferers seek alliances with experts who disagree with,or even contradict, the position adopted by the authors

of the 1996 Report (see, for example, Jason et al., 1997).In this respect, it is important to emphasize that clinicalmedicine is far from unified in its response to CFS/ME.

In the UK, for example, the National ME Centrerecruits the work and efforts of neurologists andvirologists so as to promote an understanding of what

they primarily regard as a ‘neurological illness’. In asimilar manner, the Persistent Virus Disease ResearchFoundation } whose research committee is composed

of virologists, biochemists and neurologists } arguesthat the major cause of ME/CFS is ‘viral disease’. (Ofthe 114 patients in our sample only two were eventuallydiagnosed as suffering from post viral fatigue syn-

drome).Indeed, determining the networks of people that,

more or less, support, and those who openly oppose the

(official) medical frame of the Royal Colleges wouldform an interesting exercise in the sociology of scientificknowledge in itself. Such a task lies well beyond the

scope of this paper, however.In the clinic that we have reported upon it was the

frame of the Royal Colleges that was adopted. Conse-quently, any disagreements that occurred among physi-

cians were restricted to the pragmatics of treatmentrather than interpretations about what CFS might be. Ina similar manner, most of the patients gave at least some

indication that they allied themselves with an alternativeframe (either by supporting a viral or immunologicaltheory of causation, or a strictly physicialist interpreta-

tion of symptoms). In that respect the politics of diseasethat are evident at large, were replicated in the locality ofthe clinic.

Naturally, the adoption and perpetuation of techno-logical and medical frames involves political action.Such action as Bailey (1969) points out, has bothnormative and pragmatic dimensions. The pragmatic

relate to the identification of strategies that are effectiverather than to ideals that ought to be advanced at allcost. In the CFS clinic we see the exercise of pragmatic

judgements most clearly at the stage where thephysicians turn psychiatric symptoms into abnormalitiesof ‘brain chemistry’. It is a translation that carries with it

some paradoxes for medical sociology. For, during thelater decades of the twentieth century it has beencommonplace to criticise ‘biomedicine’ for its highly

restrictive view of patients and their ailments (see, forexample, Lock & Gordon, 1988; Greco, 1998). Biome-

dicine, it is claimed, is liable to treat bodies as machinesand to search only for technical fixes to the problems of

bodily suffering, ignoring the individual within. ThusMargaret Lock, 1988 argues that, ‘the body is not amachine, [and] health and illness are not merely

biological states, but rather they are conditions whichare intimately related to and constituted by the socialnature of human life’ (1988, p. 8). In the CFS clinic,however, it is evident that physicians are more than

ready to consider the patient in her or his environment,to see patients as ‘whole persons’, and even to be the firstto recommend ‘natural’ remedies. Indeed, the body that

the physician examines has many dimensions } socialand psychological as well as physical. Interestingly,however, it is the patients who seek to restrict the field of

vision and of inquiry to the physical body that theypresent at the clinic. It is the patients who are mostanxious to rule out the adoption of the so-called

‘biopsychosocial’ frame, and it is the patients who seekto recruit the representatives of traditional, laboratorybased, biomedicine as their allies. This apparent reversalof positions serves as a corrective to those who see

medicine as something of a monolith. It is alsoemphasises the ways in which human pathologies aresubject to ‘interpretative flexibility’ and produced

through alliances and networks as much as discoveries.What the content and implications of interpretationswill be, how and by whom they are promoted and

advanced, and how they are eventually to be resolved isforever a question of empirical (social scientific) inquiry.For the manner in which lay and expert parties combineto construct diseases and their treatments is, as Arksey

(1998) and Epstein (1996) have shown, always con-tingent and rarely predictable.

References

Ainsworth-Vaughn, N. (1998). Claiming power in doctor–

patient talk. New York: Oxford University Press.

Arksey, H. (1998). RSI and the experts. The construction of

medical knowledge. London: UCL Press.

Bailey, F. G. (1969). Stratagems and spoils. A social

anthropology of politics. Oxford: Blackwell.

Bijker, W. E. (1989). The social construction of Bakelite,

Toward a theory of invention. In W. E. Bijker, T. P.

Hughes, & T. Pinch, The Social Construction of Technolo-

gical Systems (pp. 159–187). Cambridge, MA: MIT Press.

Boseley, S. (1998). Government accepts ME syndrome is ‘real

entity’. The Guardian, July 17th, p. 11.

Brown, P. (1992). Popular epidemiology and toxic-waste

contamination, lay and professional ways of knowing.

Journal of Health and Social Behaviour, 33, 267–281.

Brown, P. (1997). Popular epidemiology revisited. Current

Sociology, 45 (3), 137–156.

Chavez, M. L., & Chavez, P. I. (1997). St John’s Wort.

Hospital Pharmacy, 32 (12), 1621–1632.


Eisenberg, L. (1977). Disease and illness. Distinctions between

professional and popular ideas of sickness. Culture, Medicine

and Psychiatry, 1, 9–23.

Elliott, H. (1999). Use of formal and informal care among

people with prolonged fatigue, a review of the literature.

British Journal of General Practice, 49, 131–134.

Epstein, S. (1996). Impure science. AIDS, activism, and the

politics of knowledge. Berkeley: University of California

Press.

Fabrega, H., & Manning, P. (1972). Disease, illness and

deviant careers. In R. A. Scott, & J. D. Douglas, Theoretical

perspectives on deviance. New York: Basic Books.

Feinstein, A. R. (1967). Clinical judgement. Huntingdon: UK

Krieger.

Furnham, A., & Kuyken, W. (1991). Lay theories of

depression. Journal of Social Behaviour and Personality,

6(2), 329–342.

Greco, M. (1998). Illness as a work of thought. London:

Routledge.

Hahn, R. A. (1983). Rethinking ‘‘illness’’ and ‘‘disease’’.

Contributions to Asian Studies’, 18, 1–23.

Healy, D. (1997). The anti-depressant era. London: Harvard

University Press.

Hedrick, T. (1997). The Royal Colleges report on CFS,

insidiously biased and potentially harmful. The CFIDS

Chronicle (Winter).

Hickie, I. B.,Hooker, A. W., & Hadzi-Pavlovic, D., et al.

(1996). Fatigue in selected primary care settings, socio-

demographic and psychiatric correlates. Medical Journal of

Australia, 164, 585–588.

Holmes, G. P., Kaplan, J. E., Gantz, N. M., & Komaroff, A. L.,

et al. (1988). Chronic fatigue syndrome, a working case

definition. Annals of Internal Medicine, 108 (3), 387–389.

Hyden, L. C., & Sachs, L. (1998). Suffering, hope and

diagnosis, on the negotiation of chronic fatigue syndrome.

Health, 2 (2), 175–193.

Jason, L. A., Richman, J. A., Friedberg, F., & Wagner, L., et al.

(1997). Politics, science and the emergence of a new disease.

The case of chronic fatigue syndrome. American Psychologist,

52 (9), 973–983.

Kerr, A., Cunnigham-Burley, S., & Amos, A. (1998a). The new

genetics and health, mobilizing lay expertise. Public Under-

standing of Science, 7, 41–60.

Kerr, A., Cunnigham-Burley, S., & Amos, A. (1998). Drawing

the line, an analysis of lay people’s discussions about the new

genetics. Public Understanding of Science, 7, 113–133.

Kirmayer, L. J. (1988). Mind and body as metaphors, hidden

values in biomedicine. In M. Lock, & D. R. Gordon,

Biomedicine examined (pp. 57–93). Dordrecht: Kluwer.

Kleinman, A. (1973). Medicine’s symbolic reality. On a central

problem in the philosophy of medicine. Inquiry, 16, 206–213.

Latour, B. (1987). Science in action. How to follow scientists and

engineers through society. Buckingham, UK: Open University

Press.

Latour, B., & Woolgar, S. (1979). Laboratory life. The social

construction of scientific facts. London: Sage.

Lawrie, S. M., Manders, D. N., Geddes, J. R., & Pelosi, A. J.

(1997). A population-based incidence study of chronic

fatigue. Psychological Medicine, 27, 343–353.

Lock, M. (1988). Introduction. In M. Lock, & D. R. Gordon,

Biomedicine examined (pp. 3–9). Dordrecht: Kluwer.

(1988). Relationships between society, culture, and biomedi-

cine, Introduction to the essays. In: M Lock, DR Gordon

(Eds.) Biomedicine examined. Dordrecht: Kluwer. pp. 11–16.

ME/CFS Charities Alliance. (1997). Royal Colleges’ Report

Response. Wells, Somerset, ME/CFS Charities Alliance.

Perakyla, A. (1997). Reliability and validity in research based

on transcripts. In D. Silverman, Qualitative research (pp.

201–220). London: Sage.

Popay, J., & Williams, G. (1996). Public health research and

lay knowledge. Social Science & Medicine, 42(5), 759–768.

Pinch, T. J., & Bijker, W. E. (1989). The social construction of

facts and artifacts, Or how the sociology of science and the

sociology of technology might benefit each other. In W. E.

Bijker, T. P. Hughes, & T. Pinch, The social construction of

technological systems (pp. 17–50). Cambridge, MA: MIT

Press.

Potter, J. (1997). Discourse analysis as a way of analysing

naturally occuring talk. In D. Silverman, Qualitative

research (pp. 145–160). London: Sage.

Radley, A., & Billig, M. (1996). Accounts of health and illness,

dilemmas and representations. Sociology of Health and

Illness, 18(2), 220–240.

Risdale, L., Evans, A., & Jerret, W., et al. (1994). Patients

who consult with tiredness, frequency of consultation,

perceived causes of tiredness and its association with

psychological distress. British Journal of General Practice,

44, 413–416.

Joint Working Group (1996). Chronic fatigue syndrome, report

of a Joint Working Group of the Royal Colleges of Physicians,

Psychiatrists and General Practitioners. London: Royal

College of Physicians, Royal College of Psychiatrists, and

Royal College of General Practitioners.

Salmon, P., Peters, S., & Stanley, R. (1999). Patient’s

perceptions of medical explanations for somatisation dis-

orders, qualitative analysis. British Medical Journal, 318,

372–376.

Sharpe, M. (1998). Cognitive behaviour therapy for chronic

fatigue syndrome, efficiency and implications. American

Journal of Medicine, 105(3A), 104S–109S.

Sharpe, M., Chalder, T., Palmer, I., & Wessely, S. (1997).

Chronic fatigue syndrome. A practical guide to assessment

and management. General Hospital Psychiatry, 19(3),

185–199.

Strauss, S. E. (1996). ‘‘Biopsycosocial’’ approach may be

dufficult in practice. British Medical Journal, 313, 831–832.

Van Mens-Verhulst, J., & Bensing, J. (1998). Distinguishing

between chronic and non-chronic fatigue. The role of gender

and age. Social Science & Medicine, 47, 621–634.

Wessely, S. (1995). The epidemiology of chronic fatigue

syndrome. Epidemiological Review, 17, 139–151.

Wessely, S., Hotopf, M., & Sharpe, M. (1998). Chronic fatigueand its syndromes. Oxford: Oxford University Press.

Further reading

Other documentary sources

What is ME? (1999). Romford, Essex, UK: The National ME

Centre, Harold Wood Hospital


Unravelling the mysteries of ME/CFS (1998). Beaconsfield,

Bucks. UK: The Persistent Virus Disease Foundation

(pamphlet)

‘Perspectives’. The Magazine of the ME Association (UK)

Published quarterly

‘InterAction’. The Magazine of ME Action (UK). Published

quarterly

http//www.meassociation.org.uk/

http//www.afme.org.uk/


Doing things with illness. The micro politics of the CFS clinic

Documents

Transcript of Doing things with illness. The micro politics of the CFS clinic