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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:

Some worrying doctor's attitudes towards ME/CFS sufferers uncovered

This is indeed a very interesting study that allows the reader a
glimpse of some
of the belief systems in operation within the British Medical Profession
around
ME/CFS. There are a number of points to make about this particular
project, and
its relevance to the ways in clinical guidelines are developed:

1.As with all research that is published in the third person, the
reader has to
rely on the mediating interpretations, by the researchers, of the
responses
under study. Even with this in mind, however, it is clear that some of the
doctors under study (the response group) exhibited a worrying tendency to
confuse Myalgic Encephalomyelitis, for which Chronic Fatigue Syndrome is
merely
another name, with Chronic Fatigue, a different condition. ME/CFS is
classified
in the WHO ICD-10 as a neurological disease (G93.3), whereas Chronic
Fatigue is
classified in ICD-10 as F48 (a mental disorder). It appears from anecdotal
evidence that this is a common misapprehension among doctors. This may
well be
in part due to the misinformation that was promoted by the WHO
Collaborating
Centre for Research and Training for Mental Health, Institute of
Psychiatry,
Kings College London, in their publication the 'WHO Guide to Mental Health
in
Primary Care', and on their website. Some psychiatrists have been
(incorrectly)
using the two terms interchangeably for some time. This incorrect
information
had eventually to be clarified (and ultimately corrected) by Lord Warner,
at the
instigation of the Countess of Mar, earlier this year. (1) The lack of
knowledge
by the respondents about the neurological features of ME/CFS was quite
astounding, with one doctor bemoaning the lack of 'precise location' of
ME/CFS
because it "isn't like a broken leg".

In fact, the authors themselves appear unaware of this major issue,
and
therefore have been unable to clarify whether they or the responding
doctors are
actually discussing ME/CFS sufferers, or sufferers of Chronic Fatigue. For
the
purposes of this discussion, I am assuming that they mean ME/CFS sufferers

2. Some of the response group also exhibited clear tendencies to
socially
construct ME/CFS sufferers as 'deviant', another worrying development
within
many in the medical profession in recent years. (2, 3) 'Deviant'
personality
categories were assigned to ME/CFS sufferers. The social and material
inequalities experienced by ME/CSF sufferers, because of the social
stratification and resulting prejudices arising from such cultural
constructions
of 'deviance', based on health status, has been enormous, (4, 5) and the
attitudes and beliefs of the respondents in this study yet another
illustration
of this.

3. Raine et al describe both the patient' and 'doctor' as violating
expected
roles in the case of ME/CFS. My concern here is firstly that the socially
constructed 'roles' themselves were not critically interrogated at all
within
this article. Earlier in the article the authors describe ME/CFS sufferers
as
ignoring the "normal obligation of the 'sick role' to make every effort to
get
well as possible". Of course, ME/CFS sufferers are not the only people who
do
not get well easily, if at all. By the rationale inherent in this theme,
Doctors
would describe many of their patients as 'heartsink', for example: AIDS
sufferers, Cancer sufferers, Asthmatics, Congestive Cardiac Failure
sufferers,
MS or Parkinson's or Alzheimer sufferers, to name but a few. The fact that
such
a prejudicial term is applied to ME/CFS sufferers, but NOT AIDS or cancer
sufferers, for example, is highly significant. Although some of these
illnesses
have been subject to detrimental cultural construction in the past, work
such as
Susan Sontag's (6) has changed that. ME sufferers now appear to be
suffering
from prejudice from certain members of the health professions, that would
not
now be tolerated against sufferers of these illnesses. (7) Interestingly,
Raine
et al did not elaborate on how doctors 'violate' their expected roles. A
further
discussion of this would have allowed deeper levels of understanding as to
the
decision making process by doctors with regard to CFS, and how this can be
improved.

4 An interesting theme that arose was the hostility and resentment
expressed by
some of the respondents towards ME/CFS self-help and pressure groups. This
is of
course highly ironic, especially when the British government are currently
promoting the concept of the 'expert' patient. As with other highly
politicised
illnesses (such as AIDS), pressure and self help groups have arisen to
advocate
for patient's rights and provide support and advice, because of the
shortfall of
agencies such as the health service and benefits agencies, and the social
exclusion suffered by ME/CFS sufferers, some of the very reasons for this
uncovered both in this correspondence and in Raine et al's article itself.

5. The authors of this article were uncritical of the 'mental health
interventions' that have been promoted by some as a 'treatment' for
ME/CFS. They
appeared unaware of the intense controversy over these treatments,
including the
evidence that there is little or benefit to many patients from them, and
that
these interventions may actually be harmful to patients (for example see
8, 9,
10, ). What was also of concern was that the doctors themselves appeared,
from
the article's findings, unaware of these also, although it appears the
patients
and their advocates may be perfectly aware, hence their tendency of
'non-compliance'.

6. As a qualitative social science researcher myself, I was
fascinated by some
of the responses, and I would have been very interested to have indulged
in some
further projects of discourse analysis of the responses, which I believe
would
have uncovered some of the deeper levels of meaning in the respondents'
answers,
especially as situated subjects in the production of certain discourses of
power. A Foucauldian discourse analysis (11) may well have been pertinent
in
this project, as well as a semiotic analysis of the thymic categories of
euphoric (perceived as 'good') and dysphoric (perceived as 'bad')
categories
(12, 13) assigned by the doctors to both ME/CFS and IBS sufferers. These
may
well have provided some clues as to the how certain illnesses, such as
ME/CFS
for example, are socially constructed within the medical profession and
society
at large, and why the common experience of ME sufferers (including
children) is
one of social and material inequality and social exclusion, and hostility
and
disbelief from others, including health and social welfare professionals
(14).

7. I do question the decision to elucidate comparative responses
between ME/CFS
and IBS, which, although a painful sometimes moderately disabling illness
in
which psychological and physiological aetiology is contested, nevertheless
has a
much better prognosis and much lower rates of disability than ME/CFS. More
serious physiological illnesses where the physiological aetiology is NOT
contested may have yielded more stark polarisations of doctor's beliefs.
On the
other hand, the starkness of the polarisations even within this project
were
highly significant.

8. I agree with the author's conclusions about the deeply held
beliefs of
doctors mediating their understandings of complex disease mechanisms. In
the
case of ME/CFS, these have led to many serious problems in the way
sufferers are
treated, and an improvement in knowledge about this misunderstood illness
is
vital. This will need to involve the widespread correction of many
instances of
misinformation being propagated throughout the medical profession, and
this is
where the issue become highly politicised, which presents major problems
for
sufferers, the field of medicine and governments. What is clear though, is
that
patients, in Britain and internationally, are no longer prepared to
continue to
suffer because of these problems, hence the rise and rise of politically
astute
patients and advocates.

ANGELA KENNEDY

REFERENCES

1. See for example, Hansard:
http://www.publications.parliament.uk/pa/ld199900/ldhansrd/pdvn/lds04/
text/40122\ -12.htm#40122-12_unstar0.

2. See "The Doctors Say Psychosomatic, What Do They Mean"
http://www.theoneclickgroup.co.uk/documents/ME-
CFS_docs/When%20Doctors%20Say
%20Psychsomatic,%20What%20Do%20They%20Mean.doc

3. See my own BMJ Rapid Response "Re: Your own worst enemy" (Angela
Kennedy) at
:

http://bmj.bmjjournals.com/cgi/eletters/327/7429/1449#44881

4. Munson, P. (2000) Stricken: Voices from the Hidden Epidemic of
Chronic
Fatigue Syndrome, Haworth Press, New York.

5. Hyde, B. Bastien, S. Jain, A. The Clinical and Scientific Basis of
ME/CFS
(1992) Nightingale Research Foundation, Canada.

6. Sontag, S. (1991) "Illness as Metaphor" and "AIDS and Its
Metaphors",
Penguin, London.

7. See "The distortion of holistic approaches to health care in
ME.doc"
http://www.theoneclickgroup.co.uk/documents/ME-
CFS_docs/The%20distortion%20o
f%20holistic%20approaches%20to%20health%20care%20in%20ME.doc

8. 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.

9. Van Hoof, E. "Cognitive Behavioural Therapy as Cure-All for CFS"
Journal:
Journal of Chronic Fatigue Syndrome, Vol. 11(4) 2003, pp. 43-47

10. Van de Sande, M. (2003) "ME/CFS Post-Exertional Malaise / Fatigue
and
Exercise"

Originally printed in "Quest", the newsletter of the National ME/FM
Action
Network, 3836 Carling Ave., Nepean ON K2K 2Y6, Canada. Available online
at:

http://www.mefmaction.net/default.aspx?Page=selectedarticlesmedical

11. Foucault, M. The Archaeology of Knowledge (1985) Routledge,
London.

12. Martin, B. Semiotics and Storytelling: an Introduction to
Semiotic Analysis
(1997) Philomel, Dublin.

13. This method is practised by the Paris School of Semiotics,
founded by A.J.
Greimas: see Martin, B. Ringham, F. Dictionary of Semiotics (2000)
Cassell,

London.

14. TYMES Trust publication, "The Forgotten Children: A Dossier of
Shame"
available online at:
http://www.tymestrust.org/pdfs/theforgottenchildren.pdf

Competing interests:
Carer, Social Science Lecturer and Researcher, Co-Director of the ONECLICK Group

Competing interests: No competing interests

04 June 2004
Angela P. Kennedy
Social Science Lecturer
Essex IG8 9QX