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
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We are a registered charity that informs, supports and represents
many of the estimated 10,000 adults and children in Sussex and Kent that
are affected by CFS/ME and as such have contact with hundreds of patients
and professionals. Although there are some GPs that are having trouble
managing patients with this illness, in our experience most doctors these
days recognise CFS/ME as a serious organic illness and do their best to
treat and support their patients. We accept that some CFS/ME patients can
benefit from a specialised form of Cognitive Behavioural Therapy, but we
would point out that many manage their illness very well without these
types of interventions. Many patients are able to work in partnership with
their doctors looking at different approaches that may help with
controlling the symptoms of this illness and working towards improvement.
Presently our organisation is working in partnership with two Primary Care
Trust groups that are setting up specialist Multi-disciplinary CFS/ME
services in Sussex and Kent. It must be said that those we are working
with have been most helpful and have shown a genuine desire to see
improved services for this previously neglected patient group. Any
difficulties encountered by both patients and their doctors, just
highlights the urgent need for research into this complex illness.
Competing interests:
None declared
Competing interests: No competing interests
Congratulations BJM........ You've just identified the very problem
YOU have created.
Medical professionals read from editorial biased journals like yours,
totally devoted to publish only articles with a psychological spin to
them. And you wonder why there is so much discrimination
You should take some responsibility and publish at least one
scientifically based study that proves a real physiological abnormality,
there are hundreds to choose from. Pay attention to all the feedback you
get on this subject, and consider finding a medical editor that releases
fair and balanced reporting.
All I can say is thank God I'm an American.
Competing interests:
None declared
Competing interests: No competing interests
It was very disappointing to see the comparison of GP’s attitudes
between patients with CFS/ME and IBS. Particularly disappointing was that
the study was conducted in the months after the Chief Medical Officer
recognised – with considerable attendant publicity - the severity and
impact of CFS/ME on the lives of those affected.
One outcome of the study was that pressure groups were perceived as
influencing clinical encounters, making it harder to legitimise the
symptoms. It was interesting in itself to see patient organisations
labelled by the authors as “pressure groups”.
In fact the organisations cover a spectrum of views on the illness
and the solutions needed. In our own case we carry out an information
role for patients and professionals and provide a range of services no
different from that of any other medium sized charity. (see
www.afme.org.uk ) We campaign vigorously of course for recognition of
CFS/ME and for funding to remedy years of neglect in this field.
We are not “anti doctor” and our members mostly view their GP’s as
supportive and understanding, but faced with a complex illness, lacking a
toolkit to help. Despite this a commonly expressed view of a good doctor
can be identified, through the typical statement reported back by our
members with slight variations:
“I think you’ve got CFS/ME. I know there is no cure, and to be
honest I’m not sure what will help you most, but let’s both try and find
out and see if we can work this through together.”
Far from patient organisations wishing to politicise the consulting
room, we simply ask for a little more understanding, mixed with a little
humility and matched with an eagerness to obtain training and information
about diagnosis and treatment.
We do not seek a special status, just that people who are ill with
CFS/ME should be treated with the standard of care and professionalism
that the severity and impact of their illness merits. Is this politics?
Chris Clark
Chief Executive,
Action for M.E.
Competing interests:
Chief Executive
Action for M.E.
Competing interests: No competing interests
Editor- In case readers of the BMJ evaluate this article by Raine et
al without first learning something of the nature of ME/CFS, may I point
out that the following list of replicated findings appears on the MERGE
website (1):
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
"Physiological and biochemical abnormalities found in groups of
patients meeting the broad criteria for 'CFS'. Example references are
given in the brackets.
BIOCHEMICAL
Oxidative stress — explained on the next page (Richards et al., 2000;
Manuel et al., 2001; review by Pall, 2001; Kennedy et al., 2003; Vecchiet
et al., 2003)
Dysregulation of anti-viral pathways — i.e., abnormal activity of the
anti-viral immune responses (Suhadolnik et al., 1994; De Meirleir et al.,
2000; Tiev et al., 2003)
VASCULAR (relating to the circulation)
Endothelial dysregulation — i.e., abnormal responses of small blood
vessels selectively to acetylcholine (Spence et al., 2000; Khan et al.,
2003 and 2004)
Altered brain perfusion — i.e. areas of reduced blood flow in the
brain (Ichise et al., 1992; Costa et al., 1995; Tirelli et al., 1998)
Orthostatic hypotension — i.e., physiological changes to blood
pressure/cardiovascular mechanisms on standing (Streeten et al., 2001;
Naschitz et al., 2002; Stewart et al., 2003)
BRAIN
Metabolic abnormalities — e.g., alterations of brain choline
(important in brain function) (Tomoda et al., 2000; Puri et al., 2002;
Chaudhuri et al., 2003)
MUSCLE
Altered metabolism — e.g., changes in muscle composition or use of
fuel (Fulle et al., 2000, Vecchiet et al., 2003, Fulle et al., 2003)
Abnormal response to exercise (Lane et al., 1998; Paul et al., 1999;
McCully et al., 2004)
Enteroviral sequences in muscle — i.e., evidence of a persisting
virus in some CFS patients (Lane et al., 2003; Douche-Aourik et al.,
2003)"
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Ensuring that GP`s are kept up to date with reliable scientific facts
of the matter would be a start, but clearly a more effective way to combat
the negative stereotyping of others will ultimately be found through the
proper and generous funding of biomedical scientists, many of whom are
already doing excellent work to unravel causal and other mechanisms in
ME/CFS, on a shameful shoestring.
Sincerely,
Douglas T Fraser
1.http://www.meresearch.org.uk/melibrary/publications/advances.html
Competing interests:
None declared
Competing interests: No competing interests
We are a family living with Asperger Syndrome, and ME/CFS. Not only
are GP's failing families needing support for ME they are equally failing
families who need multi-agency services for Asperger Syndrome. If
families are being denied health services for long term input for Autistic
Spectrum Disorders the neglect is compounded when faced with the
additional conundrum of ME/CFS.
Without informed GP's and Health Professionals, Education becomes a
mine field that families are simply unable to navigate.
This situation is so serious that families are becoming subjects of
Child Protection proceedings and experts in both chronic conditions are
being dismissed, their extensive knowledge ignored in favour of the bad
parenting, and using children to gain attention for parents own need
judgements. These conclusions are reached by ignorance to the medical
needs of both conditions and refusal to accept expert input or research
current publications and appropriate interventions.
Any family's first point of contact is their GP, if the understanding
of a recognised Sydnrome is being neglected families are being left in
serious danger. The implications of the many co-morbidities of Asperger
Syndrome those that are recognised and documented are anxiety and
depression.
How can GP's justify ignoring expert opinion and input leaving
families vulnerable, when in too many cases the families have been denied
multi-agency care for years? The situation is left unsupported until
today's crisis becomes tomorrow's headline. Rather than the neglectful
actions of professionals from every service becoming public, it is easier
to cover up the failure by turning it back on the parents and making it a
Child Protection issue.
If a GP is not confident that they are informed enough to take the
necessary steps to protect the family, or feel it is out of their remit
then it is inexcusable to leave the family feeling isolated and afraid of
seeking medical attention.
In this situation a safe and justifiable action would be to refer on
to those who do have the expertise rather than believe those persecuting
the family yet not medically qualified to make this assumption that it is
simply a case of difficult uncaring parents especially when one parent
also has Asperger Syndrome. The anxieties that are part of Asperger's are
not taken in the right and fair context but used against the parent as
proof of abuse; the years of experience said parent has gained by living
personally with the Syndrome are also used a proof of abuse because the
parent is too informed about a medical condition.
The failure to act early to diagnose and the continued failure to
offer medical support first and foremost following diagnosis, added to
inability to provide suitably qualified services is continuing inspite of
Autism becomingly widely recognised. This leaves us with serious
questions needing answers. Why with the increase in the Autistic
population are GP's and Hospitals not better prepared and better informed?
Why with ME/CFS gaining recognition and better understood is the same
thing happening?
Competing interests:
None declared
Competing interests: No competing interests
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
Turning the clock back on ME/CFS
Editor -
Firstly, as a doctor with personal experience of this genuine and
very disabling illness, I have encountered many of the negative
observations expressed by my colleagues who participated in this study.
And even though there are now many more who do not share their views, the
media quickly picked up the negative stereotyping of ME/CFS patients to
produce yet more unhelpful publicity about 'work-shy' individuals who were
'lacking in motivation' (1). Having failed to provide any proper balance
by referring to evidence which does not support these views, or relevant
conclusions contained in the 2002 Chief Medical Officer's report into
ME/CFS, the authors should not be suprised to find that their paper has
been very badly received by the ME/CFS patient community (2).
Secondly, as a Trustee of The ME Association, I believe that the
authors have seriously misunderstood the role of charities working in this
difficult area of medicine. Yes, The ME Association campaigns and we
recently presented around 30,000 signatures on a petition to the Prime
Minister which called for urgent government-funded research into the
physical cause of this illness - something which the Medical Research
Council has so far refused to acknowledge as being of high priority. But
The ME Association also plays a vital role in providing information to
doctors, patients and researchers in the absence of any official sources
taking a lead. In addition, we are actively involved with the Department
of Health initiative to fund new clinical services for people with ME/CFS.
Finally, as a doctor who likes to receive balanced information in the
British Medical Journal, I was concerned at what appears to be a clear
bias by the authors in favour of the psychosomatic explanation for ME/CFS.
For example, they conclude that: 'For chronic fatigue syndrome and
irritable bowel syndrome, effective management includes discussion about
mental health interventions, particularly for patients who have responded
poorly to other management interventions'. Yet the Department of Health
and World Health Organisation both now accept that ME and CFS should be
classified as neurological disorders under section G93.3 in the current
International Classification of Diseases (ICD 10). Would the authors
conclude that a patient with multiple sclerosis who was responding poorly
to treatment should then be referred to the mental health services? I
think not.
Charles Shepherd
References
1 Doctors unsympathetic to ME patients, research finds. Society
Guardian 28 May 2004. Available on-line at:
http://society.guardian.co.uk/health/story/0,7890,1227016,00.html
2 The MEA criticises new CFS/IBS paper in BMJ. MEA website announcement
28 May 2004. Available on-line at:
http://www.meassociation.org.uk/fwhats_new.htm
Competing interests:
Person with ME/CFS who has no psychiatric co-morbidity
Competing interests: No competing interests