RESEARCH ARTICLE Open Access
Making the diagnosis of Chronic Fatigue
Syndrome/Myalgic Encephalitis in primary care:
a qualitative study
Carolyn Chew-Graham
1
, Christopher Dowrick
2
, Alison Wearden
3
, Victoria Richardson
1
, Sarah Peters
3*
Abstract
Background: NICE guidelines emphasise the role of the primary care team in the management of patients with
Chronic Fatigue Syndrome/Myalgic Encephalitis (CFS/ME). A key stage in effective management is making an
accurate early diagnosis, supported by appropriate referral.
Methods: A nested qualitative study within a multi-centre randomised controlled trial which aimed to explore GPs’
views on their role in making the diagnosis of CFS/ME and subsequent management of patients in primary care.
Semi-structured interviews with 22 GPs. Interviews were transcribed verbatim and an iterative approach used to
develop themes from the dataset.
Results: GPs described difficulties in defining CFS/ME and suggested that their role in making a diagnosis was to
exclude physical causes for the patient’s symptoms, but they reported little confidence in positively attributing the
label of CFS/ME to a patient and their symptoms. GPs suggested that the label of CFS/ME could be potentially
harmful for the patient. The role of referral to secondary care was debated and GPs struggled defining their own
role in management of this group of patients.
Conclusions: Until GPs feel comfortable making the diagnosis of CFS/ME and facilitating initial management, and
have appropriate services to refer patients to, there will continue to be delays in confirming the diagnosis and
patients presenting in primary care with fatigue may not receive appropriate care.
Trial Registration: ISRCTN 74156610
Background
Chronic Fatigue Syndrome (CFS) or Myalgic Encephali-
tis (ME) is a symptomatically defined condition with a
principal complaint of severe, disabling fatigue which
has been present for 6 months or more [1]. The symp-
tom of fatigue must be of new or definite onset (i.e. not
lifelong), and produces a substantial reduction in the
patient’s previous level of occupational, educational,
social, or personal activities [2]. The diagnosis of CFS/
ME remains controversial and debated but it is increas-
ingly recognised as a clinical entity in primary care.
A recent report produced for the UK Chief Medical
Officer by the CFS/ME working group [3], placed UK
population prevalence at 0.2-0.4%, being twice as com-
mon in women as in men and affecting all social classes.
The Chief Medical Officer report stated that patients
should be diagnosed earlier and given better access to
treatment, with a mutual management approach as its
key component. This approach should be patient-
centred therapy delivered by a trained multi-disciplinary
team. The report also emphasised the need to provide
these services locally [3]. This approach is echoed in the
NICE guidelines for CFS/ME [4] which advocates a pro-
minent role for primary care and suggests that health-
care professionals should aim to establish a supportive
and collaborative relationship, working in partnership
with the adult or child with CFS/ME, family, and carers
to facilitate their effective management. The guidelines
emphasise the importance of a definitive diagnosis and
suggest that referral to a specialist should be made on
thebasisoftheperson’s needs and symptoms: within
six months of presentation to those with mild
* Correspondence: sarah.peters@manchester.ac.uk
3
School of Psychological Sciences, University of Manchester, Manchester, UK
Chew-Graham et al. BMC Family Practice 2010, 11:16
http://www.biomedcentral.com/1471-2296/11/16
? 2010 Chew-Graham et al; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative
Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and
reproduction in any medium, provided the original work is properly cited.

symptoms, within three to four months to those with
moderate symptoms, and immediately to those with
severe symptoms [4].
There is a literature on the negative views and scepti-
cism that some GPs have expressed towards people with
CFS/ME, [5,6] who, unsurprisingly therefore, are often
dissatisfied with the medical care they receive [7]. Some
doctors perceive patients with CFS/ME to have undesir-
able traits, and it has been argued that these negative
attitudes towards patients often lead to problems with
management [5]. The origins of these attitudes were
perceived to be a lack of precise bodily location for the
complaints, and the reclassification of the syndrome
over time, producing conflict between doctor and
patient over causation and management [8] and an
apparent unwillingness of patients to disclose psychoso-
cial components of their illness models [9]. Previous lit-
erature provides evidence of doctor-patient conflict due
to disagreement over the causes and management of
CFS [7,8], and of more positive attitudes amongst those
GPs who accept CFS/ME as a recognisable clinical
entity [10].
Surveys of GPs [10] and patients [11] quantify the dif-
ficulties patients with a CFS diagnosis and their GPs
experience in their encounters [12]. Qualitative studies
have explored these encounters and illustrate the diffi-
culties found in managing patients with an established
diagnosis [5,6,13]. There are no previous studies exam-
ining how the diagnosis of CFS/ME is made in primary
care, the role played by the GP and the difficulties
encountered in making that diagnosis.
The NICE guidelines encourage GPs to take an active
role in the management of CFS/ME but, in particular,
to make an early diagnosis. Recognising the condition
and the impact it can have on the lives of patients and
their families is a necessary preliminary to improving
care[14].Itisthusessential to explore GPs’ beliefs
about the value of the label of CFS/ME, implications of
the diagnosis and attitudes towards patients suffering
with this condition. This was the aim of the study
reported here.
Methods
This was a qualitative study using semi-structured inter-
views with GPs in North West England working in prac-
tices that had been previously approached to participate
in the FINE trial [15]. The study was reviewed and
approved by the Eastern MREC (reference 03/5/62) and
had PCT R&D approval. Sampling for the study was
purposive and sought to achieve maximum variation in
relation to GPs’: age, ethnicity, practice location and size
of practice as well as number of patients referred to the
FINE trial at the time of the interview. Hence, we did
not seek to recruit a representative sample of GPs,
rather to access a range of views. Forty-six GPs in parti-
cipating practices were invited by letter with an accom-
panying information sheet and contacted subsequently
by telephone to discuss the study and ask them to parti-
cipate in an interview. Of these, 22 agreed to be inter-
viewed. Semi-structured interviews were conducted
between 2005 and 2008. Interviews lasted between ten
and 72 minutes (median duration 34 minutes).
An interview guide (see Appendix 1) provided a flex-
ible framework for questioning and explored a number
of areas: ideas about the cause of CFS/ME, previous
experience of patients with CFS/ME, how the diagnosis
of CFS/ME was achieved, and their role in management
of these patients. The interviewer combined open ques-
tions to elicit free responses with focused questions for
probing and prompting. Interviews were digitally
recorded and transcribed verbatim.
Analysis proceeded in parallel with the interviews and
was inductive, taking an interpretative stance [16,17].
Transcripts were read and discussed by researchers
from different professional backgrounds (primary care
(CCG, CD), psychology (SP, AW), and medicine (VR))
so increasing the trustworthiness of the analysis [18].
Coding was iterative and was informed by the accumu-
lating data and continuing thematic analysis. Thematic
categories were identified in initial interviews which
were then tested or explored in subsequent interviews
where disconfirmatory evidence was sought [16]. Inter-
pretation and coding of data was undertaken by CCG,
VR and SP individually and themes agreed through dis-
cussion within the whole team. The importance of
reflexivity was discussed within the research team, with
medical researchers (CCG, CD, VR) particularly reflect-
ing on how their clinical perspective impacted on gen-
eration, analysis and interpretation of the data [17]. In
reporting the final analysis the data are presented to
illustrate the range and commonality of meaning of
each category.
Results
Data are presented verbatim and the GP identifier is dis-
played in brackets. Data are organised into five themes:
defining CFS/ME, excluding the physical, potential harm
from the label, the role of referral and moving on from
making the diagnosis.
Defining CFS/ME
GPs described a struggle, trying to make sense of a diffi-
cult set of symptoms and attributed different causes to
the illness:
’It’s an illness they’ve got from life, whatever that is,
and would be completely different for different peo-
ple. So I wouldn’t like to attribute it to one particular
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thing, but often it’stodowithtoomuchemotional
stress going on in their life.’ (GP17)
’I thought it was very much a sort of somatic presen-
tation of a mental health problem and that was
pretty much it. Probably quite patronising...sort of
acknowledge that there was the fatigue, but didn’t
really see it as a separate entity. And I thought it
was people sort of passively giving into symptoms
and just sort of saying “right that’sit”, giving up. So I
think it can be quite frustrating to work with.’ (GP9)
In addition, there was some debate over whether CFS/
ME actually existed as a medical condition:
’Well it’s a relatively recent diagnostic term and I’m
not so sure yet that it’s recognised throughout the
medical profession as an illness.’ (GP0)
’I think that’s increasingly wrongly medicalising it....to
reinforce the fact that it’s a medical disease that a
specialist can cure, I think, gives the wrong messages.’
(GP16)
Such beliefs about CFS/ME necessarily will lead to dif-
ficulties in labelling the symptoms or making the diag-
nosis of CFS/ME.
Excluding the physical
GPs articulated a process of diagnosis that prioritised
excluding a physical cause for a patient’s symptoms and
presentation:
’Well I’m a doctor, so I’d take a very full medical his-
tory, I would examine them and look for relevant
things, and I’d do some investigations which would
include looking for anaemia, thyroid problems, liver
problems, vitamin D deficiency, that kind of thing’
(GP18)
GPs described looking for physical causes for symptoms
and rarely suggested that exploring psycho-social issues
would be important. Some GPs suggested that this bio-
medical focus could be therapeutic since investigating
symptoms communicates to the patient that the GP is
interested in their symptoms and taking them seriously:
’In the sense that if I sent, for example, the patient
for a full blood count and ESR, the patient will feel
two things, one is that he will feel that I have taken
him seriously, if that comes back as negative, then
they feel that “yes, the doctor has something to back
up, to say I haven’t got any cancer or anything”,so
they are doubly reassured. So I know it’s a £10 inves-
tigation, but it is therapeutic in that respect...and
they feel at least you have taken them seriously, and
they go away reassured, that in itself is therapeutic,
because the word therapy means to be cured doesn’t
it?’ (GP13)
Other GPs suggested that taking this bio-medical
approach was important since they were excluding trea-
table causes of the patient’s symptoms:
’Clearly I’m excluding the treatable’ (GP14)
This implies that some GPs may feel that CFS/ME is
not treatable, making their role in managing people
whose symptoms are not easily categorized challenging.
Potential harm from the label
SomeGPsbelievedthatthelabelofCFS/MEcanbe
helpfulforthepatientingivinganametotheir
symptoms:
’Some people like a label, some people like to know
what’s causing their symptoms whether it’s the truth or
not and some people are looking for a label to attach to
their symptoms.’ (GP17)
However, this value was generally considered to be
limited and short-lived:
’At a superficial level it’s empowering because it gives
them control over their life and their work, but at a
deeper level it prevents them from engaging fully with
the existential conditions of their life which is what
they can’t cope with.’ (GP18)
Furthermore, the majority of GPs felt that the label of
CFS/ME could be harmful because it did not offer a
clear management pathway for either the GP or the
patient:
’I try to avoid it because once you give them the label
you’re actually setting them off on a track which will
get them nowhere.’ (GP14)
’Once you start labelling a patient if you’re not care-
ful you might have a self-fulfilling prophecy.’ (GP15)
Role of referral
Those GPs who felt that making the diagnosis, or label-
ling the patient’s condition, was helpful suggested that
referring the patient to secondary care could potentially
assist in achieving a diagnosis and providing support to
GPs who lack confidence in making the diagnosis alone:
’If someone else saw them who I felt was a good phy-
sician and also came to the same diagnosis as me
then I would feel more confident that we were right.’
(GP15)
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’I’d be referring to them to actually make the diagno-
sis because I think they do extra testing. I think there
may be other things in blood tests that they can
search for that we don’t.’ (GP22)
GPs, however, reported experiences of limited avail-
ability of potentially helpful places to support them in
either making the diagnosis or managing the patient:
’Well, I don’t think there is anyone to refer to. The
specialist clinic is a waste of time; they just hold
their hands up, “what can we do? Why, what are
they sending this to us for?"’ (GP14)
Moving on from making the diagnosis
GPs alluded to the difficulties they had experienced
working with patients with CFS/ME once the diagnosis
was agreed:
’I think you have to be very patient, accept yourself
that you’re not going to cure them but there are
many things that you can do to alleviate the symp-
toms. Accept that it fluctuates, it’snotsomething
that comes on rapidly and then gradually gets better,
it goes up and down. So you have to be prepared for
a patient to appear to become worse despite your
best efforts.’ (GP20)
The role of supporting the patient was stressed by
respondents:
’I think one of the crucial things for these kinds of
people is for a doctor to say “I’monyourside,I’m
going to be with you through thick and thin”, and for
the doctor to accept their relative powerlessness, but
none the less to accompany the patient through this.’
(GP17)
A number of GPs reported frustrations with this work,
implying that CFS/ME was difficult to manage as no
“cure” was possible:
’Imean,it’s quite difficult for the Dr...So I think we
have to learn, and you can walk alongside people
with something you can’t cure.’ (GP12)
And that the work invested in working with such
patients is largely unrecognised:
’That’s terribly hard work for the doctor, it’svery
hard work. And there’s no rewards in it...I don’t refer
the patient to twelve clinics so I’ve saved the health
service millions of pounds and nobody gives a toss.
Nobody says “thank you very much doctor, you’re
doing really hard work, you’re seeing her every month
and keeping her through a very difficult time, and
you’re going to do that year in year out for fifteen
years.” That kind of highly skilled work is completely
disregarded and undervalued in the health service.’
(GP17)
Discussion
Summary of main findings
The study demonstrates a lack of confidence amongst
GPs about making the diagnosis of CFS/ME and expres-
sions of uncertainty about CFS/ME as a medical condi-
tion. GPs are reluctant to make the diagnosis of CFS/ME,
possibly because for them no logical management deci-
sions flow from the diagnosis. This contrasts with making
the diagnosis of depression [19], perhaps because GPs
believe they can offer treatment to most patients with
depression which is more common compared with CFS/
ME [8]. Some GPs expressed concern that giving the
label of CFS/ME could actually cause harm to the patient
and impair chances of recovery. In addition, the value of
referral to secondary care was disputed, either in enabling
a diagnosis to be made or offering support to the GP in
supporting and managing the patient. This may be
because of GPs’ previous experience of the lack of specia-
list services but could also be because of their ambiva-
lence about the role of the label of CFS/ME. GPs alluded
to their own difficulties in making a diagnosis of a condi-
tionwheretheyperceivednocurewaspossibleand
wheretheirownroleinsupportingandmanaging
patients with CFS/ME is under-valued.
Strengths and Limitations
Data are presented from interviews with GPs over a
wide geographical area and drawn from suburban, rural
and inner city areas. This purposive sampling enabled
us to access a range of views, intended to represent the
range of views of the GP population from which the
sample was recruited. However, because we employed a
theoretical rather statistical sampling approach, the pro-
portions of GPs holding the different views cannot be
inferred. Further quantitative large scale surveying
would be required, for example, to identify the specific
percentages of GPs who consider providing a CFS/ME
label to be helpful or harmful. Using authors from dif-
ferent professional and academic backgrounds is a
recognised technique for increasing the trustworthiness
of the analysis [18]. The opinions expressed in the inter-
views may not be similar to GPs in all practices, particu-
larly those working in practices not participating in the
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FINE trial. GPs who participated in this trial, and the
nested qualitative study, were likely to have been sensi-
tized to CFS/ME and be more knowledgeable about the
condition than the generality of their peers. Their
uncertainties concerning diagnosis and management are,
however, likely to be at least reflected, if not amplified,
amongst other GPs.
Comparison with existing literature
CFS/ME was seen as a contentious illness by many of
the GPs in this study, viewing the condition of CFS/ME
with scepticism, similar to descriptions in previous
research [5,6], where GPs did not consider CFS/ME to
be a genuine illness. This qualitative study confirms
findings from previous quantitative work suggesting that
GPs are unconfident in the diagnosis of CFS/ME [10].
Most GPs don’t see enough patients with CFS/ME to
become experienced in the diagnosis of this condition,
and it has been shown that GPs can change their atti-
tudes towards CFS/ME when a person who they know
developed it [8]. The NICE guidelines suggest that nega-
tive attitudes and uncertainty about the condition make
it difficult for GPs to establish a relationship with
patients and that healthcare professionals should
acknowledge the reality and impact of the condition and
it’s symptoms [4]. The NICE guidelines also recognise
the need for a supportive and collaborative relationship
with patients with CFS/ME to facilitate their effective
management [4,14] and other guidelines stress that
wherepossibleCFS/MEshouldbemanagedlocally[3].
GPs in this study reported lack of confidence in con-
firming the diagnosis of CFS/ME themselves, and that
there were limited referral options locally. In addition,
they expressed scepticism about the value of referral,
having had previous negative experiences.
GPs in this study recognised that the diagnosis of
CFS/ME is not the end-point for the professional or the
patient and that managing a patient involves investment
in a long-term relationship, which echoes previous work
suggesting that diagnoses such as CFS/ME should be
the beginning, not the end, of the therapeutic encounter
[20]. Patients with CFS/ME are perhaps perceived to be
more complex than those with other medically unex-
plained conditions, and GPs may feel less supported and
competent to manage such patients [21,22]. Recognition
ofthecomplexityofthisroleisvital,andthereisa
need to acknowledge the valuable work that a GP might
contribute to the management of patients with CFS/ME.
For some conditions, treatment is straightforward and
bio-medical, but for conditions like CFS/ME, GPs need
to employ a wider range of skills, such as engagement,
problem solving and developing a model of the illness
in collaboration with the patient. GPs may lack
confidence in taking a psychological approach with
patients with CFS/ME [23] and commonly devalue their
skills in psychological management of patients with
unexplained symptoms [24].
Implications for future research and clinical practice
Current training and education for GPs fails to prepare
them for diagnosing and managing patients with CFS/
ME as recommended by current guidelines. It seems
that GPs do not have a clear model for CFS/ME. Educa-
tional initiatives are needed that are aimed at providing
GPs with an acceptable model of the condition, support-
ing them in confidently making the diagnosis and help-
ing them to initiate management based on their model.
Passive educational interventions, however, have been
shown to be ineffective [25] and more interactive educa-
tional initiatives perhaps involving patients as teachers
should be considered [26].
Conclusions
Until GPs feel comfortable making the diagnosis of CFS/
ME and facilitating initial management, and have appro-
priate services to refer patients to, there will continue to
be delays in confirming the diagnosis and patients pre-
senting in primary care with fatigue may not receive
appropriate care. It is necessary to recognise the com-
plex nature of managing patients with long-term condi-
tions. A model of support for GPs, which may include
supervision [27], is needed. The provision of services to
support GPs develop confidence to make the diagnosis
of CFS/ME and manage and support patients with this
complex debilitating condition [3,14] is necessary.
Appendix 1. The Interview Guide
What follows is a guide; some themes may emerge
spontaneously so the order of the questions varied as
the interview and analysis phase developed allowing for
the exploration of themes from the initial interview.
The researcher probed and asked for examples to
explore each topic as time permitted.
1. Tell me about your experience of working with
patients with chronic fatigue
a. What do you understand by the term CFS/
ME?
b. What factors do you think cause it? Maintain
it?
2. What do you do when someone presents with
tiredness?
3. When and why would a diagnosis of CFS/ME
come about?
a. How do you feel about making a diagnosis?
Why?
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b. What role do you think GPs have in diagnos-
ing CFS/ME?
c. What role do guidelines (e.g. NICE) play in
your diagnosis?
d. What could help with diagnosis?
4. What do you feel a diagnosis does for the patient?
For how you manage the patient?
5. Do you refer patients to a specialist? If so, who to
and why?
6. [How] does a diagnosis effect your interactions or
relationship with a patient?
a. Do your perceptions/feelings about that
patient change?
b. What kind of doctor-patient relationship helps
manage effectively with these patients?
7. How would you approach a newly registered
patient with a pre-existing diagnosis of CFS/ME?
Acknowledgements
This paper is written by the authors on behalf of the FINE Trial Group which
consists of: Colette Bennett, Richard Bentall, Laura Booth, Greg Cahill, Anna
Chapman, Carolyn Chew-Graham, Susan Connell, Christopher Dowrick,
Graham Dunn, Deborah Fleetwood, Laura Ibbotson, Diana Jerman, Karina
Lovell, Jane Mann, Richard Morriss, Sarah Peters, Pauline Powell, David
Quarmby, Gerry Richardson, Lisa Riste, Alison Wearden, Jennifer Williams.
We are indebted to all the GPs who took part in the study and to Greg
Cahill who undertook some of the data collection.
The study was funded by Medical Research Council G200212 [ISRCTN
74156610]. The views expressed are those of the authors and not necessarily
those of the funders.
Author details
1
Primary Care Research Group, School of Community-Based Medicine,
University of Manchester, Manchester, UK.
2
School of Population, Community
and Behavioural Sciences, University of Liverpool, Liverpool, UK.
3
School of
Psychological Sciences, University of Manchester, Manchester, UK.
Authors’ contributions
CCG designed and managed this qualitative study. She contributed to the
data collection and analysis and drafted the paper. She is guarantor for the
study and paper. CD contributed to recruitment of GPs, data analysis and
writing the paper. AW contributed to recruitment of GPs, data analysis and
writing the paper. VR contributed to recruitment of GPs, data collection and
analysis and writing the paper. SP designed and managed this qualitative
study and contributed to the data collection and analysis and writing the
paper. All authors read and approved the final manuscript.
Competing interests
The authors declare that they have no competing interests.
Received: 26 May 2009
Accepted: 23 February 2010 Published: 23 February 2010
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Pre-publication history
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doi:10.1186/1471-2296-11-16
Cite this article as: Chew-Graham et al.: Making the diagnosis of Chronic
Fatigue Syndrome/Myalgic Encephalitis in primary care:
a qualitative study. BMC Family Practice 2010 11:16.
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