Chronic Fatigue Syndrome: Illness or Disease?
The debate about chronic fatigue
syndrome, as played out in popular publications and the media is replete with
stories of charismatic physicians, fighting for the rights of their patients
to be seen as having a 'real' disease with unarguably organic pathology.[1] Such doctors act as magnets for somatizing patients. The history of
medicine illustrates that such physicians often fail to recognise psychogenic
emotionally caused disorder in other forms as well. For the last hundred years
the same physicians as have taken an interest in the physical treatments of
writers' cramp (RSI) have also had a side line in offering physical remedies
for neurasthenia.[2][3][4][5] They have attracted numerous
sufferers of each disorder to their clinics. They hold out the promise of
empirical remedies and do not undertake any close examination of their patients'
predicaments. The press glorifies such entrepreneurial doctors as 'scientists
trying to solve a problem' and 'medical sleuths' involved in a 'quest' until
they invariably 'crack' a case, or 'dent a medical world mystery'.[6][7]
The question, 'is it real?' locates
the debate in the constructions of nominalists and realists. Nominalists argue
that we give names to abstract entities, to functions, to ideas which have
no necessary physical correlates in the world. Realists say that it is our
senses tell us about the world and that we give names to our experiences as
if they corresponded with objects in the real world. In the realist view,
we are justified in giving names to actions, processes and feelings using
words which make them sound as if they are real 'things.' In the medical world
such 'things' are designated as syndromes and diseases which, because they
are assumed to be 'real', are then assumed to be accessable through physical
or chemical means. Hence to call a way of experiencing one's sensory world
a somatoform disorder, or hysteria, does not make somatization or hysteria
a 'thing'.
Whether or not chronic fatigue
syndrome is 'real' in the terms of the scholastics or in common parlance the
social consequences of physical interventions on its behalf are real.
Many physicians feel entitled
to intervene with a physical mode of treatment where they diagnose organic
disease. However there is precious little, if any evidence at all that the
immunological system is implicated in chronic fatigue, any more than it might
be in any stress related disorder. If a physican fails to diagnose a disease,
he makes a type I error. If a physician is wrong and, on the basis of no more
than a report of symptoms, diagnoses a disease which is not there, he makes
a type II error. There are sanctions against the making of type I errors.
There are few, if any such sanctions against the making of type II errors.
Sociologists of medicine point out that the consequences of type II errors
create infinitely more problems for patients, for medical costs and for the
community than do the consequences of missing a non-fatal diseases.[8] At the present time there is
no evidence to support a notion of immunosuppression as a basis for chronic
fatigue yet some physicians tell their patients that they have problems with
their immune system. This has two effects: first it legitimises the belief
that there is an abnormality in the body and this places the patient in a
sick role. Secondly, it fails to address the real issues in that person's
life whch are manifesting as fatigue without an oraganic basThe empirical
evidence concerning the behaviour of patients who claim to be suffering from
chronic fatigue is that they not happy until they have found a physician who
concurs with their own opinions regarding the organic nature of their problems,
is prone to make type II errors., and to intervene on their behalf, in a pas
de déux of illness behaviour and treatment behaviour. If that person
or patient also becomes a claimant seeking compensation and retirement, then
he or she will, in an effort to establish the state of disease will accept
any medical service that is offered by the diagnostician.
The idea that a person who has
a symptom has a disease is firmly entrenched by out medical education. No
specialist College examines its candidates to see if they can differentiate
the oragnic conditions whicxh mimic or suggest the diseases of interest from
the real thing. Physiicans in private practice soon learn that patients are
defenceless against misdiagnosis, and readily accept intervention tha dodtor
knows best. In less sophisticated societies, it was believed that people became
ill because their bodies were possessed by demons. Kennedy points out that
the notion of possession still persists, in the medical assumption that the
body of a person who is ill is possessed by disease.[9] This is the rhetoric of medicine,
the positivist, empiricist language which seeks to give the medical profession
jurisdiction over illness as well as over disease. It has created illusions
and had influenced the way physicians think, pre-empting if not hijacking
rational clinical intervention.[10] The word 'rational' in this sense is used to differentiate measures
which claim a basis in a theory of aetiology from empirical remedies which
have not been subjected to clinical trials and whose depend on the placebo
effect combined with the natural history of most problems which involves recovery.
In the simplest terms, corporeal
disease ( including immunosuppression) may be treated by physical measures,
while, on the other hand psychogenic illness is considered to be accessible
to mental influences, since the mind, in the absence of psycho tropic insult,
is accessible only to ideas and desires.
Medical intervention is euphemistically
termed 'treatment' regardless of its effects and its theoretical under-pinning.[11] The illness/disease complex is commonly defined as 'what doctors treat.'[12] Although vacuously circular, this is the view that informs today's
debate, and passes for common knowledge in the community. It is not in the
interest of Western medicine to differentiate that which doctors treat from
that which is treatable by medical means. Unless such distinctions are rigorously
made by doctors, their offers of services consistent with the disease model
will be ineffective and will continue to generate epidemics of illness, of
morbidity, and demands for medical services will continue to increase. is.
As most medical services are offered within a medical, that is a disease,
framework they tend not to be very effective for symptoms without signs, and
symptoms without signs are usually evidence of emotional causation.
Sedgwick suggests that all disease
is a social construction. He has no difficulty with the conceptualising of
mental illness 'within the disease framework, together with lumbago and TB.
The realist case points, 'not to the technologizing of illness, but to the
medicalizing of moral values.'[13] In short, the realist case gives unbridled power to the medical profession
do do sucjh things as they are programmed to do: to give 'medical model' explanations.
In the case of CFS, a realist viewpoint gives the physicain who favours action
over inaction justification for physical intervention. A nominalist view justifies
observation, interpretation, encouragement, guidance and masterly inactivity.
Ancient scholastic doctrines
can define the problem, but are of little use in its resolution. Clarification
is needed and Jeremiah Barondess, a clinician, cuts across the debate between
the 'nominalists' and the 'realists' and offers the following definitions
of disease and illness:[14]
Disease may be viewed
as a biological event, characterized by anatomic physiologic or biochemical
changes or by some mixture of these. It is a disruption in the structure and/or
function of a body part or system. It may be due to a variety of causes, may
persist, advance or regress through a variety of mechanisms and may or may
not be clinically apparent.
Illness, on the
other hand, is not a biologic, but a human event. It consists of an array
of discomforts and psycho-social dislocations resulting from interactions
of a person with his environment. The environmental stimulus may be a disease,
but frequently it is not. (It is estimated that 50% of doctor-patient contacts
are without a demonstrable basis) It may be a stressful series of life events
or a set of reactions to perceived threats which are largely symbolic.
The relationship between disease
and illness is generally taken for granted but a moments reflection will show
that it is, as Barondess suggests, actually obscure and inconstant. For example,
how does a brain tumour cause the illness known as a symptomatic psychosis?
Why in one person rather than another? Is it through the location of the tumour,
or by means of a toxin it releases, or is the psychosis a human reaction to
a perceived threat? If a large and visible tumour has such an inconstant consequence,
how can we be asked to assume that a symptom such as fatigue is the consequence
of hypothetical damage to an unidentified tissue such as the immune system?
Could it be that the clustering
of irredeemably ill people with obscure diseases has some relationship to
the belief systems, hopes and aspirations of those involved in their treatment?
In the early sixties, seminal
research into recovery from disease was carried out by Imboden at Johns Hopkins
on a group of thirty laboratory workers who were accidentally infected with
brucellosis.[15] At that time, 'chronic brucellosis' was a diagnosis commonly cited
to account for what was earlier known as neuraestenia and is now known as
chronic fatigue syndrome of myalgic encephalomyelitis. A group of thirty accidentally
became infected: full psycho-social studies were done on all of them. Those
with extraneous difficulties took significantly longer to recover symptomatically
than those without such troubles, while the disease, as measured by serological
studies, remitted at the same time in both groups.
In the mid sixties, Hirschfield
and Behan and Weinstein demonstrated an 'Accident Process' and an 'Illness
Process' in which social and emotional conflicts are resolved by substituting
an 'acceptable disability' of medical impairment, attributable to accident
or disease for the unacceptable disabilities of illness arising out of psychological
and social problems.[16][17] In psychiatry, we call this
somatization.
Three patients were told by a
teaching hospital clinic that they had 'chronic fatigue syndrome' or ME and
that it was due to some degree of failure of their immunological systems.
They were referred to me by their disability insurer.
The first case:
Bill was admitted to the local hospital with acute chest pain but no diagnosis
was made. Returning to his job, he became increasingly incapacitated by fatigue
although he was allowed to work on his own days at his own pace. He started
attending various ME or CFS theorists for slow infusions of vitamin C and
similar nostrums and he was promised a trial of gamma globulins in a research
program. The story of his career helped me to understand the reasons for his
illness-like behaviour. About five years earlier he had become the NSW manager
of an international firm. Flushed with his own success, he had resigned to
open his own consultancy which was a total failure and he lost a lot of money.
He then drove a taxi for a few years, and he decided to go back to sales and
the only job he had been able to get was as a travelling salesman for an outfit
identical to the one of which he had formerly been the NSW manager. The permanent
disability policy was part of the package he was able to negotiate. At the
same time, his wife, in her forties, had come into her own professionally
and held an excellent management position.
James, a lawyer
had taken eight years to get through Law school 'being no good at exams'.
Armed with the literature on BME from the waiting room of his treating specialist,
he gave me his history in obsessional detail. He had worked unhappily in a
four man practice as the junior partner, and, ten years ago, he had failed
to recover from a bout of 'flu'. 'They kicked me out,' he told me. He maintained
contact with a few clients but his chronic debilitating fatigue precluded
employment. He had become involved full time on a family matter, sorting out
his father's will, from which he stood to gain a modest amount but it took
over ten years to do that. He did not want to become involved with a psychiatrist
as his brother committed suicide three days after his first appointment with
one. When I asked him about his relationship with his friends he said 'Nobody
wants to know you when you are well,' then he picked up on his Freudian slip,
smiled and asked 'I wonder why I said that'. He later wrote me a letter thanking
me for the interview from which he said that he had gained some insights.
The third case:
John was an accountant with a successful practice earning whatever successful
accountants earn, until he suffered a common influenza-like illness. His blood
showed a high titre of Coxsackie B; glandular fever was the presumed diagnosis.
When he returned
to work, he was acutely embarrassed because he could not remember his clients'
business histories, nor recall their names, nor their tax problems, nor find
his files, nor remember the investments which he wanted to advise. After a
few days he gave up. Thereafter, he felt unable to return to work, and this
manifested as chronic unremitting fatigue, so he gave away his practice. CFS
was diagnosed by telephone by a professor of medicine and he was offered intravenous
gamma globulin, which he declined. I saw him for the disability insurer, who
was paying him $1000.00 a month, a relative pittance. A CT scan, taken six
months after the initial infection revealed generalized cortical atrophy.
My diagnosis was one of organic neurological compromise of unknown aetiology.
My interpretation was that his fear of returning to confront his cognitively
impaired state was being experienced as fatigue. He tried to rehabilitate
himself by doing a locum for a colleague, but was again struck down by an
illness characterized, inter alia, by grossly abnormal liver function tests.
The last diagnosis under consideration was toxoplasmosis. The cognitive impairment
and cortical atrophy remain unexplained for some time and he was seen annually
until the diagnosis became clear. By his wife's account, he never resumed
his former levels of interest in books or journals, he slept a great deal
and never returned to his work or to his hobbies. He had a further two bouts
of undiagnosable febrile illness and then developed toxoplasmosis which was
thought to be an opportunistic infection. A physician formed the opinion that
the first viral infection, although never accurately identified was caused
by a virus which was simultaneously neurotropic and immunotropic, and this
hypothesis could account for both his increased susceptibility to viral and
other infections and his loss of intellectual capacity (from an IQ of 150+
based on his academic record and professional performance to a measured IQ
of 125). His fatigue was a symptom, either indirectly or directly of his continuing
neurological and cognitive impairment.
The literature on somatization,
especially that out of Canada[18][19][20] and England[21][22] provides a post Freudian theoretical
structure whereby such patients can be understood, and even occasionally helped.
Goldberg suggests that a number of purposes are served by somatization: it
allows people who are unsympathetic to psychological illness or who live in
cultures where it is stigmatized, to nonetheless occupy the sick role while
being psychologically unwell. It is blame avoiding: instead of being responsible
for the mayhem, one is cast in the role of suffering victim. Finally, by reducing
responsibility, it appears to save patients from being as depressed as they
otherwise might have been.
These three men all exchanged
an unacceptable psycho-social disability for an acceptable one, a medical
impairment. The first avoided confronting his spoilt career, made more painful
by his wife's success, and the second avoided dealing with his marginal performance,
and his personal unpopularity. The third did not want a neurological diagnosis
or disease and his physician did not want to acknowledge it. They both avoided
confronting the patient's cognitive impairment, something which could lead
to error and legal problems. If there was a common thread, it was that by
adopting the CFS nomencalture, each man was avoiding a confrontation with
his failure. Illness, attributable to disease, legitimated by experts, had
provided the solution to each problem and in each case, the history revealed,
the problem had predated the onset of fatigue. All were in need of a comprehending
and empathic interventio n but were being denied it.
It is far easier for treating
doctors to legitimate and to support the patient's claim to the status of
being ill than to challenge it by working through obdurate resistances. But
is the taking of supportive position the same thing as practicing psycho therapy.
As Janet pointed out, psychotherapy is treatment by the mind, by the subtle
imposition of ideas. Is not then telling a person that he has a disease a
form of negative psychotherapy? And do physicians do it unnecessarily to further
their own goals?
Research psychiatrists however
do not have a way of categorising and measuring such human difficulties as
the inconvenient and value laden concepts of human unhappiness, shame, failure,
embarrassment and guilt. They use impeccably validated inter subjective scales
to measure such anxiety and depression as exist, and thereby they can demonstrate,
as the patients want them to, that where that measurable anxiety and depression
exist, these affects are secondary to 'the syndrome' for whose existence they
do not try to account.[23] In my opinon they ask all the
wrong questions, and the answers that they receive are then used to support
their beliefs that their patients are not suffering from a 'sychiatric condition.'
Their medical model assumes that the affective symptoms are related to the
patient's problem by being a consequence of it. This approach ignores the
undiagnosable nature of the thing they call 'the syndrome.' An explanatory
theory bringing into play the concept of somatization accounts for both the
undiagnosable physical symptoms, and, when one considers the patient's predicament,
the unexpectedly low level of anxiety and depression, much of which has been
somatized.
Such researchers and those whom
they educate pay a heavy price for their naive reliance on measurement and
their anti-psychiatry posturing. Their actions de-humanise the practice of
psychiatry, the healing the soul, as they reduce human beings to organisms,
to biology and symptoms. A century after Charcot, we have researchers utilising
funds in a search for the physical basis of hysteria. Plus ça change.
Many studies suggest that about
half of doctor patient contacts are for illness without a diagnosable physiological
basis.[24] The physical treatment of somatization is a massive, lucrative industry
and one which produces iatrogenic illness. The cost of the NSW Workers' Compensation
Scheme blew out from $426 million over 1892-1983 to $521 million, to a rather
staggering $666 million in 1984-1985 and rose further to $838,401,582 in 1986,
during a period when total industrial accidents actually decreased.[25] The culprit was a mysterious collection of arm discomforts which were
medicalized, called an injury and betwen twenty and forthy thousand patents
in Australia were disabled by a relatively small coterie of inept, psychologically
blind doctors. Worldwide, cases, undiagnosed and untreated are being being
expressed in mythical numbers: '200,000' sufferers in the UK,[26] 200 000 litigants in the United
States.[27][28]
Kennedy believes that the practice
of medicine is a political enterprise.[29] Had the patients in that epidemic of somatization been routinely processed
through psychologicaly sensitive physicains and had their insights into the
reasons for behaviour been attended, then the outcome could well have been
different in both costs and morbidity. This aspect of medicine, if it is taught
at all in medical schools and postgraduate programs, is poorly learnt indeed.
Any government would be well
advised to mop up its doctor surplus by training them in the diagnosis and
management of the somatizing patient. It would be well advised to pay general
practitioners for taking time in comprehending those reasons for illness which
cannot be seen on an MRI scan. The supply of these patients is limitless,
but many are in the hands of doctors who fail to recognize the nature of their
problems. Psychotherapists do not prescribe expensive and useless drug treatments,
nor do they generate costs in ancillary services. The need is for more educational
resources to help physicians to manage illness and possibly lat the expense
of the pursuit of the exclusion of disease.
[1] Sicherman B. The uses of a diagnosis: doctors, patients
and neuraesthenia. Journal of the History of Medicine and Allied Sciences
1977;32(1):33-54.
[2] Beard GM. A Practical Treatise on Nervous Exhaustion
(Neuraesthenia): Its symptoms, nature, sequences, treatment. (2nd Revised
ed.) New York: 1880
[3] Beard GM. Conclusions from the study of 125 cases
of writer's cramp and allied affectations. The Medical Record: the official
journal of the Association of Medical Record Officers 1879;:224-247.
[4] Poore GV On Fatigue, Lancet, 1875:2 127
[5] Poore GV. An analysis of 75 cases of writer's cramp
and impaired writing power. Transcripts of the Royal Medico-Chirurgical Society
1878; 61:111-145.
[6] Wesseley S. The history of chronic fatigue syndrome.
In: S S, ed. Chronic Fatigue Syndrome. New York: Mark Deckler, 1994: 41-82.
[7] Malden AN, Halle K. Chronic fatigue bug. Time 1987
[8] Scheff TJ. Decision rules, types of error and their
consequences in medical diagnosis. In: Tuckett D, Kaufert JM, ed. Basic Readings
in Medical Sociology. London: Tavistock Publications, 1978: 245-253.
[9] Kennedy I. The Unmasking of Medicine. London: George
Allen and Unwin, 1981
[10] for a discussion of "rational intervention, see Wulf
HR. Rational Diagnosis and Treatment. Oxford: Blackwell Scientific, 1976
[11] Wootton B, Seal VG, Chambers R. Social Science and Social
Pathology. London: George Allen and Unwin Limited, 1959:138.
[12] Merskey H. Variable meanings for the definition of disease.
Journal of Medicine and Philosophy 1986;11(3):215-232.
[13] Sedgwick P. Illness - mental and otherwise. In: Caplan
AL, Engelhardt HT, McCartney JJ, ed. Concepts of Health and Disease: Interdisciplinary
perspectives. Reading, Massachusetts: Addison-Wesley Publishing Company, 1973:
119-129. vol 11:3)
[14] Barondess JA. Disease and illness - a crucial distinction.
American Journal of Medicine 1979;66(3):375-376.
[15] Cluff LE, Imboden JB. Brucellosis. II: Medical aspects
of delayed convalescence. Archives of Internal Medicine 1959;103:398-405.
[16] Hirschfield AH, Behan RC. The accident process: III. Disability
acceptable and unacceptable. JAMA: the journal of the American Medical Association
1963;186(July 11):193-199.
[17] Weinstein MR. The illness process. Psychosocial hazards
of disability programs. JAMA - the journal of the American Medical Association
1968;204(3):117-121.
[18] Lipowski ZJ. Somatization, a borderland between medicine
and psychiatry. Canadian Medical Association Journal 1986;135(6):609-614.
[19] Lipowski ZJ. Editorial. Somatization: medicine's unsolved
problem. Psychosomatics 1987;28(6):294, 297.
[20] Lipowski ZJ. Somatization: The experience and communication
of psychological distress as somatic symptoms. Psychotherapy and Psychosomatics
1987;47(3-4):160-167.
[21] Bridges KW, Goldberg DP. Somatic presentation of DSM-III
psychiatric disorders in primary care. Journal of Psychosomatic Research 1985;29(6):563-569.
[22] Goldberg D. The management of medical out patients with
non-organic disorders: the reattribution model. In: Creed F, Mayou R, Hopkinds
A, ed. Medical Symptoms not Explained by Organic Disease. London: Royal College
of Psychiatrists and Royal College of Physicians of London, 1992
[23] Hickie I, Lloyd A, Wakefield D, Parker G. The psychiatric
status of patients with chronic fatigue syndrome. British Journal of Psychiatry
1990;156:534-540.
[24]
[25] Christie A. The costs of workers' compensation. In: Government
Insurance Office, 1991
[26] Verral op cit.
[27] Korrick, S.A.,
Rest, K.M., Davis, L.K. & Christiani, D.C. Am. J.Ind. Med.25, 837-850
(1994).
[28]
[29] Kennedy.
opp. cit.
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