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General practitioners' perceptions of chronic fatigue syndrome and beliefs about its management, compared with irritable bowel syndrome: qualitative study

BMJ 2004; 328 doi: https://doi.org/10.1136/bmj.38078.503819.EE (Published 03 June 2004) Cite this as: BMJ 2004;328:1354

Rapid Response:

Re: Professor Wessely and Dr White's views

Editor-

Dr White stated (18th June) - "People only need to read my papers to
know that I do not think CFS/ME is primarily psychological."

In "Physical or mental? A perspective on chronic fatigue syndrome"
(1) Richard Sykes "..... examines the question of whether chronic fatigue
syndrome (CFS), often known as myalgic encephalomyelitis (ME), should be
classified as a physical or mental illness.

Medically unexplained somatic syndromes are difficult to classify as
either physical or mental illnesses. I will take CFS as an example (for a
recent review of CFS see Pinching, 2000). The problem is that many
patients experience CFS as a physical illness – they often say that they
had something like bad influenza or a viral attack from which they have
never properly recovered. Komaroff (2000) reviews the biology of CFS,
citing evidence of biological abnormalities of the central nervous system
and the immune system. However, medical scientists have not yet been able
to establish an undisputed physical basis for the continuing symptoms and
some people therefore conclude that the illness must be a mental one,
caused by mental or psychological problems and hence it should be
classified as a mental illness.

I will argue that, even taking a sympathetic stance on psychological
causation, there are no good grounds for saying that CFS is generally due
to psychological problems. It should therefore not be classified as a
mental illness"

Included in a response (2) to Sykes, Dr. Peter White states:

"Sykes is correct in pointing out that many of the symptoms of CFS
are somatic. These include a sensation of physical fatigue or exhaustion,
weakness, heaviness in the limbs, muscle and joint pain, headache and even
transient sore throat and tender lymph nodes (Fukuda et al, 1994; Wessely
et al, 1998). However, a conversion disorder can similarly cause entirely
physical sensations and the corollary is that a frontal brain tumour can
present with wholly ‘psychological’ symptoms and signs. So, the presence
of physical symptoms proves nothing.

We then turn to aetiology. Certain viruses have been shown to trigger
CFS (White et al, 2001), but there is no replicated evidence of a
persistent viral infection (Wessely et al, 1998). Immunological findings
are inconsistent and have no established relationship with clinical
findings (Peakman et al, 1997). A down-regulated
hypothalamic–pituitary–adrenal axis is found in most studies (Cleare et
al, 2001), but this could be the consequence of prolonged inactivity,
rather than a primary event (White, 2000). The same finding is also
evident in several psychiatric disorders (Wessely et al, 1998). Physical
deconditioning is a reasonably reliable finding (Fulcher & White,
2000; White et al, 2001), but it would be expected to be due to the
inactivity associated with CFS (White, 2000).

The most consistent findings regarding the aetiology of CFS are
‘psychosocial’ (Wessely et al, 1998). These include higher prevalence
rates of both current and past mood disorders, compared with other chronic
medical disorders (Wessely et al, 1998). Somatic illness perceptions and
consequent avoidant behaviour are equally established findings (Deale et
al, 1998; Vercoulen et al, 1998). ‘Psychosocial’ factors predict slower
recovery and are associated with greater disability (Wessely et al, 1998).
The quotation marks around the word ‘psychosocial’ are an important
reminder of the need for a deeper understanding of how biological factors
are determined by, and themselves determine, psychosocial phenomena.
Sykes’s suggestion that either a psychiatric diagnosis or a psychological
problem can be considered as an additional diagnosis to CFS misses this
point and bypasses the possibility that such factors may be central to
fatigue"

Dr White concludes :

"The most effective treatments of CFS are based on an integrated,
biopsychosocial understanding of the illness. To regard CFS as a physical
disease would be as great an error as to regard it as a psychological
illness"

In response (3), Richard Sykes points out:

"As regards the classification of CFS/ME, neither Kendell nor White
addresses the crucial question that is posed by my paper. This is, ‘Given
that currently all illnesses are classified as physical or as mental ones,
how should CFS/ME be classified?’ Although criticising my view that, in
this situation, CFS/ME should be classified as a physical illness, neither
of them is prepared to advocate the only alternative, that it should be
classified as a mental illness. White, for example, says that ‘to regard
CFS as a physical disease would be as great an error as to regard it as a
psychological illness’.

In failing to address this crucial question, they have failed to
address the situation faced by patients with CFS/ME whose illness will be
classified in the real situations in which they are placed.

White states that ‘the most consistent findings regarding the
aetiology of CFS are "psychosocial"’. But both the findings and their
significance are strongly debated. In reality, research findings give no
clear answers as to how CFS/ME should be classified"

Richard Sykes goes on to point out:

"As regards the distinction between physical and mental illness, some
psychiatrists today would have us believe that any distinction between
body and mind, and with it any distinction between mental and physical
factors, is just a relic of Cartesian dualism and is incompatible with a
modern biopsychosocial model.

But this, as Fulford forcibly points out, is ‘plainly nonsense. The
"biopsycho-" part of the model directly depends on the body/mind
distinction’. The reality is that the distinction between mind and body,
between mental and physical factors, is a fundamental one which has not
yet been replaced. The difficulties in drawing the distinction precisely
cannot be disposed of simply by declaring the distinction out of date and
ignoring the difficulties.

Final comments

The misperception of CFS/ME as a mental illness or as generally due
to psychological problems, has led to much mistreatment of patients in the
National Health Service and to much unnecessary suffering. This is well
documented in the recent Government-commissioned report (Department of
Health, 2002). At Westcare UK, we have specialised in providing
psychological help to patients with CFS/ME for the past 13 years. In our
view, in the current situation, CFS/ME is generally best classified as a
physical illness, which like other physical illnesses has psychological
and social dimensions (Sykes & Campion, 2002a,b). This view is
supported by a large majority of patients. Is it now time to take this
shared perspective seriously?

More generally, confusion about basic concepts associated with
illnesses that are currently called ‘mental’ illnesses creates unnecessary
problems. The task of finding and agreeing a clear conceptual structure
within which to describe and classify these illnesses is both important
and urgent. My hope is that this task will be undertaken soon in an open,
collaborative and cooperative way, with contributors from many fields.
Linguistic philosophy, as Fulford (1990) has demonstrated, could have a
valuable contribution to make"

The following information contained within "THE PACE TRIAL
IDENTIFIER" (4) clearly infers that White, Wessely, Sharpe et al believe
in ME/CFS as primarily psychological, leading to deconditioning :

"The chronic fatigue syndrome (CFS) is a condition characterised by
chronic disabling fatigue and other symptoms, which is not associated with
either an identifiable disease process or a major psychiatric illness.1-3"

"CBT will be based on the illness model of fear avoidance, used in
the three positive trials of CBT.15,17,18 There are three essential
elements: (a) Assessment of illness beliefs and coping strategies, (b)
Structuring of daily rest, sleep and activity, with a graduated return to
normal activity, (c) Challenging of unhelpful beliefs about symptoms and
activity (see appendices 2 & 6).

GET will be based on the illness model of both deconditioning and
exercise avoidance, used in the previous trials.19,20,22 Therapy involves
an assessment of physical capacity, negotiation of an individually
designed home aerobic exercise programme with set target heart rates and
times, and sessional feedback with mutual planning of the next fortnight's
home exercise programme"

"Inclusion criteria: Subjects will be required to meet
operationalised Oxford criteria for CFS.2 This means 6 months or more of
medically unexplained, severe, disabling fatigue affecting physical and
mental functions"

"The trial will be run by the trial co-ordinator who will be based at
Barts and the London , with the principal
investigator (PI), and alongside two of the six clinical centres. He/she
will liaise regularly with staff at the
Clinical Trials Unit (CTU) who themselves will be primarily responsible
for randomisation and database design and management (overseen by the
centre statistician Dr Tony Johnson), directed by Professor Simon Wessely,
in collaboration with Professor Janet Darbyshire at the MRC CTU"

"Drs. Peter White (PW), Michael Sharpe (MS) and Trudie Chalder (TC)
will be centre leaders. PW will be the co-trainer and co-supervisor of GET
(with Ms Lucy Darbishire) and will supervise the trial coordinator. MS and
TC will oversee training and supervision of CBT (with Mr Vincent Deary).
TC will oversee training and co-supervise APT (with Dr Diane Cox). PW, MS,
and TC will oversee treatment adherence"

1. Fukuda K et al. The chronic fatigue syndrome: a comprehensive
approach to its definition and study. Ann Intern Med 1994; 121: 953-959.

2. Sharpe MC, et al. A report – chronic fatigue syndrome. JR Soc Med
1991; 84: 118-121.

3. Wessely SC et al. Chronic fatigue and its syndromes. Oxford,
Oxford University Press, 1998.

15. Priiis JB et al. Cognitive behaviour therapy for chronic fatigue
syndrome. Lancet 2001; 357: 841-7.

16. Ridsdale L et al. Chronic fatigue in general practice: is
counselling as good as cognitive behaviour therapy? A UK randomised trial.
Br J Gen Pract 2001; 51: 19-24.

17. Sharpe M et al. Cognitive behaviour therapy for the chronic
fatigue syndrome: a randomised controlled trial. 5M/1996; 312: 22-26.

18. Deale A et al. Cognitive behavior therapy for chronic fatigue
syndrome: a randomized controlled trial. Am J Psychiatry 1997; 154: 408-
414.

19. Fulcher KY & White PD. Randomised controlled trial of graded
exercise in patients with the chronic fatigue syndrome. BMJ 1997; 314:
1647-52.

20. Wearden A et al. A randomised, double-blind, placebo controlled
treatment trial of fluoxetine and a graded exercise programme for chronic
fatigue syndrome. Br J Psychiatry 1998; 172: 485-90.

21. Lloyd A et al. Immunologic and psychologic therapy for patients
with chronic fatigue syndrome: A double-blind, placebo-controlled trial.
Am J Med 1993; 94: 197-203.

22. Powell P et al. Randomised controlled trial of patient education
to encourage graded exercise in chronic fatigue syndrome. 5M/2001; 322:
387-92.

Included in The Canadian Guidelines- "Myalgic
Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case
Definition, Diagnostic and Treatment Protocols" by Carruthers et al (5),
the following commentary and critique of these views is offered:

"Cognitive Behavior Therapy (CBT) and Graded Exercise Therapy (GET)

Two hypotheses have been presented as underlying the CBT model of
chronic fatigue syndrome (105). The first hypothesis "assumes that the
pathophysiology of CFS is largely irreversible, but considers that a fine-
tuning of the patient's understanding and coping behavior may achieve some
improvement in his or her quality of life."

The second hypothesis is based on the premise that the patient's
impairments are learned due to wrong thinking, and "considers the
pathophysiology of CFS to be entirely reversible and perpetuated only by
the interaction of cognition, behavior, and emotional processes. According
to this model, CBT should not only improve the quality of the patient's
life, but could be potentially curative" (105). Some proponents suggest
that "ideally general practitioners should diagnose CFS and refer patients
to a psychotherapist for CBT without detours to medical specialists as in
other functional somatic syndromes" (106,107).

The first hypothesis seems reasonable within the multi causal
biopsychosocial model of disease and illness, however a cure may be found.
But there is much that is objectionable in the very value-laden second
hypothesis, with its implied primary causal role of cognitive, behavioral
and emotional processes in the genesis of ME/CFS. This hypothesis is far
from being confirmed, either on the basis of research findings or from its
empirical results. Nevertheless, the assumption of its truth by some has
been used to influence attitudes and decisions within the medical
community and the general cultural and social milieu of ME/CFS. To ignore
the demonstrated biological pathology of this illness, to disregard the
patient's autonomy and experience and tell them to ignore their symptoms,
all too often leads to blaming patients for their illness and withholding
medical support and treatment.

It is unlikely that the CBT and GET studies that were included in the
recent review of treatments (108) dealt with comparable homogeneous groups
since different inclusion and exclusion criteria were used in selecting
the test patients and control groups. For example, in the Prins et al.
(106) CBT study on ME/CFS, patients had to meet the CDC criteria "with the
exception of the criterion requiring four of eight additional symptoms to
be present." If the sole CDC criterion that patients had to meet was
prolonged fatigue, is not this study on chronic fatigue, rather than
ME/CFS? In a study by Fulcher and White (109), comparing graded aerobic
exercise to flexibility therapy, ME/CFS patients who had an appreciable
sleep disturbance were excluded because of the effect that poor sleep has
on fatigue. This is puzzling as in a study of symptom prevalence and
severity by De Becker et al. (45), 94.8% of 951 patients meeting the
Holmes criteria, and 91.9% of 1,578 patients meeting the Fukuda criteria,
reported sleep disturbance with an average severity of 2.5 and 2.4,
respectively, out of 3. When sleep disturbance is such an integral part of
ME/CFS, do the findings in the Fulcher and White study (109) apply to
ME/CFS?

A systematic review of prognosis studies show that the less stringent
the clinical criteria, the better the prognosis (74). In two of the
studies reviewed (110,37), 22% and 26% of patients with chronic fatigue
reported recovery, respectively, whereas none and 6% of the ME/CFS
patients recovered from fatigue. Therefore, care must be taken not to
classify patients experiencing chronic fatigue as ME/CFS patients unless
they meet all the criteria for ME/CFS, as the outcomes for these two
patient groups are substantially different. It is interesting to note that
in the treatment review (108), all the CBT and GET studies that indicated
improvement used the less restrictive Oxford criteria with the exception
of the Prins study (106) that used the CDC criteria for prolonged fatigue
but eliminated the other CDC criteria. All studies excluded ME/CFS
patients who were too ill to regularly attend treatment sessions.

The complexity of CBT studies, their varied inclusion and exclusion
criteria, the very limited portions that can be properly blinded, and the
subjective means used for most evaluations, puts in question the validity
of their results. In addition, the numerous variables between the CBT
studies, the CBTs and control programs, the different comparison
therapies, and the varied frequency and duration of therapy, make it very
challenging to determine which parts are responsible for any perceived
improvement. Are any effects due to the shift in cognitive beliefs, the
exercise involved, the amount and quality of the attention and
counselling, the discontinuance of other medical therapies during the test
period, etc.? Thus the Powell et al. study (111) found GET alone to be as
effective as CBT, and the Risdale et al. study (112) found CBT to be no
more effective than counseling.

The GETs included in the review (108) generally involved graded
aerobic activities with variable amounts of supervision. These three
studies (109,111,113) showed positive effects but the results were modest.
Although the more carefully supervised study of Fulcher and White (109)
found that 55% of the patients improved over a three month period compared
to 27% of patients given flexibility and relaxation exercises, the most
common result in both groups was "feeling a little better." Since "graded
aerobic exercises programs can help reduce incapacity and symptoms in many
chronic and painful conditions" (109), one wonders about the specificity
of any effects in ME/CFS patients.

Do study results represent a true reflection of the ME/CFS population
when there is a high dropout rate? The Prins et al. study (106) on CBT
reported significant improvement in fatigue severity in 35% (20 of 58) of
the patients. However, these figures do not reflect that 26% (99 of 377)
of the patients who were eligible for the study "refused to take part,"
and of the 93 patients who were assigned to CBT, 41% (38) did not complete
the trial. In a British study (100), 1,214 of 2,338 patients had tried
graded exercise. Of these 417 found it to be helpful, 197 reported no
change and 610 (50%) indicated that it made their condition worse. This
was the highest negative rating of any of the pharmacological, non-
pharmacological and alternate approaches of management covered in the
questionnaire and may help explain the high drop out rates noted in some
of these programs.

The question arises whether a formal CBT or GET program adds anything
to what is available in the ordinary medical setting. A well informed
physician empowers the patient by respecting their experiences, counsels
the patients in coping strategies, and helps them achieve optimal exercise
and activity levels within their limits in a common sense, non-ideological
manner, which is not tied to deadlines or other hidden agenda.

Physicians must take as much care in prescribing appropriate exercise
as in prescribing medications to ME/CFS patients (100). Attending
physicians should only approve of exercise programs in which the patient's
autonomy is respected, appropriate pacing is encouraged, fluctuations in
severity of symptoms are taken into account, and adequate rest periods are
incorporated. Patients should be monitored frequently but unobtrusively
for signs of relapse"

37. Bates DW, Schmitt W, Buchwald D, Ware NC, Lee J, Thoyer E,
Kornish RJ, Komaroff AL. Prevalence of fatigue and Chronic Fatigue
Syndrome in a primary care practice, Arch of Intern Med 1993 Dec;153:2759-
2765.

38. Lloyd AR, Hickie I, Boughton CR, Spencer O, Wakefield D.
Prevalence of chronic fatigue syndrome in an Australian population. Med.
J. Aust. 1990;153:522-528.

45. De Becker P, McGregor N, De Meirleir K. A definition-based
analysis of symptoms in a large cohort of patients with chronic fatigue
syndrome. J Intern Med 2001;250:234-240.

74. Joyce J, Hotopf M, Wessely S. The prognosis of chronic fatigue
and chronic fatigue syndromes: a systematic review. QJ Med 1997;90:223-
233.

100. Sheperd C. Pacing and exercise in chronic fatigue syndrome.
Physiother 2001 Aug;87(8):395-396.

101. White PD, Naish V. Graded exercise therapy for chronic fatigue
syndrome. Physiother 2001;87:285-288.

102. Jones KD, Clark SR. Individualizing the exercise prescription
for persons with fibromyalgia. Rheum Dis Clin of NA 2002;28:1-18.

103. DeBecker P, Roeykens J, Reynders M, McGregor N, De Meirleir K.
Exercise capacity in chronic fatigue syndrome. Arch of Intern Med 2000,
Nov 27;160(21): 3270-3277.

104. Clapp LL, Richardson MT, Smith JF, Wang M, Clapp AJ, Pieroni RE.
Acute effects of thirty minutes of light-intensity, intermittent exercise
on patients with chronic fatigue syndrome. Phys Ther 1999 Aug;79:749-56.

105. Sharpe MC, in Demitrak MA, Abbey SE (editors). Chronic Fatigue
Syndrome. Guilford Press, NY. 1996, pp. 248.

106. Prins JB, Bleijenberg G, Bazelmans E, Elving L, de Boo TM, et
al. Cognitive behaviour therapy for chronic fatigue syndrome; a
multicentre randomised controlled trial. Lancet Mar 17, 2001;357:841-847.

107. Wessley S, Nimnuan C, Sharpe M. Functional somatic syndromes:
one or many? Lancet 1999 Sept 11;354(9182): 936-939.

108. Whiting P, Bagnall AM, Sowden AJ, Cornell JE, Mulrow CD, Pamirez
G. Interventions for the treatment and management of chronic fatigue
syndrome. A systematic review. JAMA 2001Sep 19;286(11):1360-1368.

109. Fulcher KY, White PD. Randomised controlled trial of graded
exercise in patients with the chronic fatigue syndrome. BMJ June 7,
1997;314:1647-1662.

110. Buchwald D, Umali P, Umali J, Kith P, Pearlman T, Kormaroff AL.
Chronic fatigue and the chronic fatigue syndrome: prevalence in a Pacific
Northwest Health Care System. Ann Intern Med 1995;123:81-88.

111. Powell P, Bentall RP, Nye FJ, Edwards RH. Randomised controlled
trial of patient education to encourage graded exercise in chronic fatigue
syndrome. BMJ 2001;322:387-392.

112. Ridsdale L, Godfrey E, Chalder T, Seed P, King M, et al. Chronic
fatigue in general practice: is counseling as good as cognitive behaviour
therapy? A UK randomised trial. Br J Gener Pract, Jan. 2001;51:19-24.

113. Wearden AJ, Morris RK, Mullis R, Strickland PL, Pearson DJ, et
al. Randomised, double-blind, placebo-controlled treatment trial of
fluoxetine and graded exercise for chronic fatigue syndrome. Br J Psychiat
1998;172:485-490."

It seems to me that Dr. Peter White`s statement- "People only need
to read my papers to know that I do not think CFS/ME is primarily
psychological"- may contain a typographical error.

Douglas T Fraser

1.Advances in Psychiatric Treatment (2002) 8: 351-358

http://apt.rcpsych.org/cgi/content/full/8/5/351?ijkey=380885f4978437b17a...

2.Advances in Psychiatric Treatment (2002) 8: 363-365

http://apt.rcpsych.org/cgi/content/full/8/5/363

3.Advances in Psychiatric Treatment (2003) 9: 78-79
http://apt.rcpsych.org/cgi/content/full/9/1/78

4.Journal of Chronic Fatigue Syndrome, Vol. 11(1) 2003, pp. 7-115

http://www.cfids-cab.org/MESA/ccpc-1.html

For an analysis of the "biopsychosocial model" underpinning the
beliefs of White, Wessely, Sharpe et al, see the work of Dr. Niall McLaren
at : http://www.futurepsychiatry.com/Chap7.html

Competing interests:
None declared

Competing interests: No competing interests

19 June 2004
Douglas T Fraser
ex-violinist
London W6