Some serious problems in Doctors' attitudes towards ME/CFS sufferers uncovered.
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Primary Care
General practitioners' perceptions of chronic fatigue syndrome and beliefs about its management, compared with irritable bowel syndrome: qualitative study
Some serious problems in Doctors' 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.
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.
Rapid Response:
Some serious problems in Doctors' 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.
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, Sociology Researcher, Co- Director of the ONECLICK Group.
Competing interests: No competing interests