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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

Re: GPs are powerless without better models

Chris Burton’s honest response in these pages was extremely
interesting. Dr Burton finds that there are problems in the bio psycho-
social approach to ‘Chronic Fatigue Syndrome’, and that a ‘multifactorial
model’ of illness with regard to ‘CFS’ is not ‘yet’ robust enough.

I think that Dr Burton’s discussion illustrates a number of points:

1. Despite many years of international biomedical research which has
yielded some explanations as to the organic nature of ME/CFS, the WHO -ICD
-10 classification of the disease as neurological, the production of the
Canada Definition and Protocols which shows “somatization disorder” to be
as low as 5 % in the ME/CFS population, (7) doctors, in Britain at least,
are being fed the misinformation that ME/CFS is primarily a psychiatric
illness. This misinformation is coming from somewhere. Indeed, as recently
as this year and highlighted here in previous Rapid Responses, a WHO
Collaborating Centre had been promulgating such misinformation,
specifically around the ICD-10 classification. Such misinformation has
also been promulgated in other publications that might be used by GPs and
other health professionals.

2. Doctors are not being encouraged to do specific biophysical
investigations that may uncover the abnormalities present in ME/CFS
sufferers. In neglecting to do so, physical abnormalities remain
undetected, and the notion of ’medically unexplained’ illness becomes a
self-fulfilling prophecy.

3. Patients will not ‘buy into’ an explanation for their serious
physical problems that is logically flawed, such as the ‘somatization’
model. At the risk of flippancy, the somatization explanation for ME/CFS
seems in many ways like a “demonic possession” explanation for symptoms:
it cannot be verified, there are elements of moral judgement within it,
and it does depend on the subjective beliefs of he or she making the
diagnosis, which will be subject to complex cultural assumptions. To
expect patients to accept without question such explanations is actually
quite unfair, and unrealistic.

This may be a major reason why doctors get such a sceptical response
from patients when delivering the ‘psychosomatic’ explanation. Often the
explanations of ‘psychosomatic’, somatizing’ or other terms used to
describe biophysical health problems becomes a cruel distortion of a
holistic approach (1) , and, specifically, nearly always accompanied by a
belief that the sufferer of an illness diagnosed as such is the author of
her own illness, (2) even if, in good old Freudian terminology,
‘unconsciously’ so. Many doctors do not seem to be aware of the
theoretical and epistemological problems associated with the idea of
‘hysteria’ and ‘somatization’ (terms often used interchangeably with other
terms such as “psychosomatic”, or “psychogenic”) of which there are many,
but my guess is that at least some of them will have exercised their
critical faculties and found the ’bio-psychosocial model wanting’ (3)

So, as I understand it, GP’s in particular, across the land, are
being told, incorrectly, that ME/CFS is a ‘psychosomatic’ illness caused
by behavioural problems, by key figures in British ME/CFS practice, a
powerful psychiatric lobby who have persistently socially constructed
ME/CFS sufferers as mentally ill and also socially deviant, (4, 5) rather
than the seriously organically ill and disabled people they actually are.
(6) Possibly against their own clinical judgements and critical faculties,
many GP’s nevertheless attempt to convince patients presenting with
symptoms that the illness is ‘psychosomatic’. Patients, exercising their
own critical faculties, often inevitably find such explanations
inadequate and possibly downright irrational. This presents a major
conflict for both patients and doctors. The situation can then become
extremely tense at best, and lead to frequent breakdowns in the patient-
doctor relationship.

4. Doctors need a sensible model of care for ME/CFS patients, a
conceptual framework that allows them to plan a model of care with their
patients, that will help them address the underlying seriously biomedical
problems that CAN be addressed, even if the full aetiology of ME/CFS is
still uncertain, provide the support needed to help sufferers cope with a
serious illness such as financial and psycho-social (NOT a CBT approach
that aims to change the sufferer’s belief that they are ill, which many
current CBT programmes appear to be doing), and help to prevent further
disability and, where possible, decrease levels of disability. The Canada
Case Definition and Treatment Protocols provide just such an up-to-date
framework. (7)

I would recommend, if I may, to Dr Burton, and indeed, any doctor
caring for ME/CFS sufferers, that he reads these guidelines, as they
provide a model of care that doctors can use. He may already have done so.
He can judge for himself whether they seem robust enough, but the
important thing is that he would be engaging with them. At present, key
players in British psychiatric approaches to ME/CFS appear to be ignoring
them. This is possibly because many of their own psychiatric assumptions
about ME/CFS are critically analysed in this document, and found wanting.
The “bio- psychosocial” approach to ME/CFS, as it currently stands, has
been causing enormous problems for GPs and other doctors presented with
ME/CFS patients: but the profound devastation caused to ME/CFS suffers by
the approach has been unconscionable. A critical appraisal of this
approach is now due.

REFERENCES

1.Kennedy, A. (2004) “The distortion of holistic approaches to health
care in ME.doc”:
http://www.theoneclickgroup.co.uk/documents/ME-CFS_docs/

2. McWhinney, I.R. Epstein, R.M. Freeman, T.R. “Rethinking
Somatization” January, 1997.

http://www.uwo.ca/fammed/ian/somatizationmain.htm

3. Butler CC, Evans M, Greaves D, Simpson S. “Medically Unexplained
Symptoms: the biopsychosocial model found wanting.” J R Soc Med
2004;97:219 -222

4. Kennedy, A. (2004) “The Doctors Say Psychosomatic, What Do They
Mean?”:
http://www.theoneclickgroup.co.uk/documents/ME-CFS_docs/

5 Williams, M. “Denigration by Design: Update: 1996 - 1999: (2000).

http://www.25megroup.org/denigration%20by%20design/denigration%201.htm

6. Marshall, E.P., Williams, M. Hooper, M. “What is ME? What is CFS?
Information for Clinicians and Lawyers”, December 2001.

http://www.meactionuk.org.uk/What_Is_ME_What_Is_CFS.htm

7. Carruthers et al (2003) “ Myalgic Encephalomyelitis/chronic
Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and
Treatment Protocols” Journal of Chronic Fatigue Syndrome, VO. 11 (1) 2003.

http://www.theoneclickgroup.co.uk/documents/ME-CFS_res/

Competing interests:
Carer, Social Science Lecturer and Researcher, Director of the One Click Group

Competing interests: No competing interests

16 June 2004
Angela P. Kennedy
Social Science Lecturer
IG8