Horton et al. BMC Family Practice 2010, 11:89
http://www.biomedcentral.com/1471-2296/11/89
RESEARCH ARTICLE
Open Access
Chronic fatigue syndrome/myalgic encephalomyelitis
(CFS/ME) in adults: a qualitative study of perspectives
from professional practice
Simon MC Horton1*, Fiona Poland1, Swati Kale1, Maria de Lourdes Drachler1, Jose Carlos de Carvalho Leite1,
Maggie A McArthur1, Peter D Campion2, Derek Pheby3, Luis Nacul4
Abstract
Background: Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) can cause profound and prolonged
illness and disability, and poses significant problems of uncertainty for healthcare professionals in its diagnosis and
management. The aim of this qualitative study was to explore the nature of professional ‘best practice’ in working
with people with CFS/ME.
Methods: The views and experiences of health care practitioners (HCPs) were sought, who had been judged by
people with CFS/ME themselves to have been particularly helpful and effective. Qualitative semi-structured
interviews following a topic guide were carried out with six health care practitioners. Interviews were audiorecorded, transcribed and subject to thematic analysis.
Results: Five main themes were developed: 1) Diagnosis; 2) Professional perspectives on living with CFS/ME;
3) Interventions for treatment and management; 4) Professional values and support for people with CFS/ME
and their families; 5) Health professional roles and working practices. Key findings related to: the diagnostic
process, especially the degree of uncertainty which may be shared by primary care physicians and patients
alike; the continued denial in some quarters of the existence of CFS/ME as a condition; the variability,
complexity, and serious impact of the condition on life and living; the onus on the person with CFS/ME to
manage their condition, supported by HCPs; the wealth of often conflicting and confusing information on the
condition and options for treatment; and the vital role of extended listening and trustful relationships with
patients.
Conclusions: While professional frustrations were clearly expressed about the variability of services both in primary
and specialist care and continuing equivocal attitudes to CFS/ME as a condition, there were also strong positive
messages for people with CFS/ME where the right services are in place. Many of the findings from these
practitioners seen by their patients as helping them more effectively, accord with the existing literature identifying
the particular importance of listening skills, respect and trust for establishing a therapeutic relationship which
recognises key features of the patient trajectory and promotes effective person-centred management of this
complex condition. These findings indicate the need to build such skills and knowledge more systematically into
professional training informed by the experience of specialist services and those living with the condition.
* Correspondence: s.horton@uea.ac.uk
1
School of Allied Health Professions, University of East Anglia, Norwich NR4
7TJ, UK
Full list of author information is available at the end of the article
© 2010 Horton 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.
Horton et al. BMC Family Practice 2010, 11:89
http://www.biomedcentral.com/1471-2296/11/89
Background
Chronic fatigue syndrome/myalgic encephalomyelitis
(CFS/ME) can cause profound and prolonged illness
and disability, with wide-ranging impacts on quality of
life [1] and continues to pose significant problems of
uncertainty for healthcare professionals in its diagnosis
and management [2]. Previous research has identified a
number of problematic issues posed for health professionals, for example: the acceptance by GPs and primary
care staff of CFS/ME as a legitimate condition, with
many GPs remaining sceptical about its existence [3,4];
low GP confidence in making a diagnosis and managing
CFS/ME [4,5]; and lack of empathy, disbelief or negative
attitudes towards people with CFS/ME [6-8]. GPs who
do accept CFS/ME as a recognisable clinical condition
or who know someone socially with the condition have
been found to have more positive attitudes [4]. The
National Institute for Health and Clinical Excellence
(NICE) guidelines [2] emphasize the role of primary
care and the importance of working in partnership with
the person who has CFS/ME [9]. Nonetheless the NICE
guidelines have not been greeted with universal enthusiasm, either by people with CFS/ME or by health professionals [10]. Objections have ranged from the
composition of the Guideline Development Group to
the quality of evidence for recommended treatments
such as Cognitive Behaviour Therapy (CBT) [11] or
Graded Exercise Therapy (GET) [12]. One correspondent to BMJ Rapid Responses characterised the guidelines as “unfit for purpose” [13]; another argued that the
evidence base for the Guidelines was poor [14]. A family
doctor pointed out that the guidelines failed to identify
the precise nature of the specialism for onward referral
from primary care, asking in the light of the geographical differences in specialist care available “how do family
doctors access best referral practice?” [15].
It has been argued that the role of primary care
remains paramount in the treatment and management of
CFS/ME because “multidisciplinary teams have not yet
been set up in the United Kingdom” [9]. However, after
the publication of the CFS/ME Working Group’s Report
to the Chief Medical Officer [16] specialist multidisciplinary teams (both in-patient and primary care-based) were
set up in the UK. For example, the NHS Improvement
Network (East Midlands) identifies teams in Derbyshire,
Nottinghamshire, Lincolnshire and Leicestershire [17].
Such multidisciplinary teams usually consist of a coordinator, rehabilitation consultant or GP specialist, physiotherapist and occupational therapist, and some may
have a psychologist or access to psychological services. It
is claimed that 65% of the population of England is now
covered by the new CFS/ME services [17].
Good communication between practitioner and
patient is now recognised as a key element of good
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practice [2,18]. NICE guidelines state that all healthcare
professionals involved in the care of people with CFS/
ME should have a high standard of consultation and
communication skills [2], so enabling people with CFS/
ME (and their family carers) to participate in all decisions about their healthcare. Clearly, a more team-based
approach should enhance communication between all
healthcare professionals involved in supporting people
with CFS/ME. Nonetheless, the need for better communication and education about diagnosis and management of CFS/ME has been consistently highlighted
[19-21]. Despite evidence that CFS/ME should be diagnosed as early as possible to mitigate further deterioration and improve prognosis, diagnosis and the
consequences of ‘labelling’ patients is not unproblematic,
given the sometimes negative attitudes towards people
identified as having CFS/ME [20,22] and the concern
expressed by some GPs that giving a label of CFS/ME
could actually cause harm and impair recovery [5].
Nonetheless, getting a diagnosis has been mentioned by
patients as the single most helpful event for them in
managing their condition [8,23]. GPs can play an important role in helping patients to understand unexplained
symptoms, but while training enables them to exclude
physical causes, limitations of knowledge about CFS/ME
often make diagnosis uncertain, leading to frustration
and impacting in turn on the quality of their relationship with the patient [9]. This may accord with the
observation that doctors can struggle to maintain their
professional authority when under “considerable scientific uncertainty” [20].
The medical profession is clearly not alone in supporting people with CFS/ME. Interdisciplinary and multidisciplinary rehabilitation, including peer-facilitated
programmes [24] may well offer the most effective management approach to improving quality of life for people
with CFS/ME. Good professional-client communication
is often integral to lifestyle and educational approaches
to management. Collaboration and teamwork between
professionals and the person with the condition is fundamental to success [25]. Strategies which increase
understanding, a sense of control and participation in
treatment can have great benefit [26]. For example 42%
of patients in an occupational therapy lifestyle management programme were able to return to work, voluntary
work or training at 18 month follow-up [27]. This type
of approach, which emphasises patient control through
education, pacing and progression within a balanced
programme of activity and rest, is also advocated in the
management of CFS/ME-related musculoskeletal pain
[28]. Goal attainment was found to be the only significant predictor of quality of life improvement in a supportive and educational group programme for people
with CFS/ME [29].
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The negative attitudes of health and social care professionals that have been reported may be largely explained
by: well-known problems with case definition and misleading labels such as CFS, which tend to too easily
aggregate a heterogeneous group of patients; the current
failure of the biomedical model to explain CFS/ME;
physicians’ discomfort with continuing uncertainty over
diagnosis and management protocols; pressure from
health service funders and patients for rapid diagnosis
and treatment [30]; and problems in communication
between people with CFS/ME and health and social care
professionals, which may lead to their further exclusion
from adequate treatment or social care benefits. New
and emerging scientific knowledge about the condition
will continue to provide clinicians with plausible treatment strategies which can be tested in trials [28]. However, good management of the condition and its
consequences for people living with CFS/ME remains a
highly contended issue, exemplified in responses to the
publication of the NICE guidelines.
Aim of the present study
The aim of this study was to explore the nature of professional ‘best practice’ in working with people with
CFS/ME. The views and experiences of health care practitioners (HCPs) were sought, who had been judged by
people with CFS/ME themselves as having been particularly helpful and effective. The study therefore aims to
describe, from the perspective of such HCPs, practices
that: enable patients to establish the legitimacy of their
condition; impact positively on the process of diagnosis
and care; and enable patients to overcome experiences
of social isolation and other negative effects.
Methods
This was a qualitative study using semi-structured interviews with specialist and non-specialist health care practitioners working with patients with CFS/ME. The study
was reviewed and approved by London MREC (reference 06/MRE02/58) and had PCT R&D approval.
Participants
Potential participants were nominated by people with
CFS/ME who had taken part in an associated England-
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wide study of their support needs (Social inequalities in
the impact of living with CFS/ME: CFS/ME Observatory
project). Between them, 36 people with CFS/ME nominated eight health care practitioners as having provided
them with particularly helpful or effective care, based on
their perceptions of the quality of care they had
received. One practitioner was named by six different
people with CFS/ME, and one person with CFS/ME
nominated two practitioners. Of the eight practitioners
then contacted by the research team, two declined to
take part in the study. Participants were from the East
of England and London; further participant characteristics are set out in Table 1.
Procedures and data collection
The eight practitioners who had been proposed were
contacted, provided with information about the study
and invited to participate. Six gave written consent to
take part and arrangements were made for them to be
interviewed individually by a member of the research
team. Five interviews were conducted face-to-face at the
participant’s workplace, and one by telephone. Two of
the authors carried out semi-structured interviews based
on a topic guide (see Appendix 1).
This was developed by members of the research team,
so as to reflect research literature identifying key aspects
of service user and practitioner experiences of CFS/ME;
provisional findings from an associated study of service
user experiences (Social inequalities in the impact of living with CFS/ME: CFS/ME Observatory project); and to
deploy a framework of question types (e.g. experience;
opinion; feeling) [31] to organise the guide and to
explore the lived experiences of the individual participants [32]. The following topics were covered in the
interviews:
i) general experiences of working with people with
CFS/ME;
ii) enabling people to access information and
resources;
iii) recognising and responding to the needs of people with CFS/ME, including coping with uncertainty,
unpredictability and stigma;
iv) enabling people to take an active role;
Table 1 Participant characteristics
Specialist services
Non-specialist services
Professional groups
HCP1
HCP2
Medicine; Occupational therapy; Physiotherapy
HCP6
HCP3
HCP4
HCP5
Medicine; Occupational Health; Holistic Practice
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v) experiences of working with people from ethnic
minorities, or from manual or routine occupations,
or who had a severe condition.
Interviews lasted between a half to a full hour, and all
(including the telephone interview) were audio-recorded.
Data analysis
The audio-recordings were transcribed in full using English orthography, according to an agreed protocol (e.g.
line numbering; speaker identification; emphatic stress
in CAPS). To maintain the anonymity of the participants, transcripts were labelled simply as Health Care
Practitioner numbered 1 to 6 (e.g. HCP1). Analysis followed three stages:
i) the first two transcriptions were scrutinised by two
of the authors and provisional codes agreed;
ii) these codes were used as the basis for an iterative
process of thematic analysis taking an interpretative
stance [33] where data were organised and indexed by
three of the authors using qualitative data analysis software [34] to support the process. Each of these
researchers initially analysed one transcribed interview.
Themes and sub-themes were identified and developed
by the individual researchers and a two-stage process
of cross-checking and discussion (peer triangulation)
was used to validate the analysis: coding was crosschecked and the analysis subsequently refined; refined
codes were then used as a basis for analysing the next
transcript and these codings were cross-checked in the
same way, with final cross-checking and discussion
before themes and subthemes were finalised for the
whole data set. The nine main themes and eighty five
sub-themes which were developed initially were consolidated through further discussion and interpretive
synthesis into five main themes;
iii) these themes and subthemes were then deployed
in the development of materials (narrative vignettes;
diagrammatic overview) used subsequently to engage
with groups involved in the research (people with
CFS/ME and professionals) for the purposes of participant validation. This was carried out in two
researcher-facilitated workshops where feedback and
comments were recorded.
Participant validation
Two validation meetings were held. At the first in April
2009, summaries of main study themes and related samples of data were presented to twenty-three people living
with CFS/ME, family carers; and ten health professionals.
Findings were presented in different ways, including discussion groups, short summaries, audio recordings,
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diagrams and narratives over the course of a five hour
event. Findings were discussed in small, facilitated
mixed-constituent groups and one-to-one conversations
with members of the research team and written records
made. These were then reviewed by the research team.
Comments of both professionals and people living with
CFS/ME involved in the validation exercises showed
strong accord with the findings of this study. Evidence of
good face validity was provided in comments from professionals (e.g. “same stories we hear time and again, so
nothing new to health professionals”) and from people
living with the condition (e.g. “if only all doctors were as
understanding”, “this confirms the need for health professionals to have the right training”). Comments which
took issue with the findings focussed on the small number of professionals participating in the study; and those
findings related to the demographic profile of people
with CFS/ME accessing services. Comments from this
event were also used to test the accessibility and perceived relevance to these groups of materials summarising the research. The presentation of study theme
summaries and data extracts were revised and reorganised in the light of participants’ responses to the first
event. These revised materials were made available to a
second group of invited participants before they attended
a second, smaller, validation meeting held in October
2009 which lasted for four hours. This meeting was
attended by eleven people living with CFS/ME and
carers; and five health professionals. Comments from
people living with the condition (e.g. “We do need to be
able to trust the people who treat us"; “I would like to
know that this will be seen by clinicians and other health
professionals”) and health professionals (e.g. “this emphasises the stigma of ME and the need to educate the public
that this is a fluctuating condition and the complexity of
the condition needs to be recognised”) arising in discussion groups and individual conversations further confirmed the main themes of this study.
Results
The following five themes were developed from the
interview data: 1) Diagnosis; 2) Professional perspectives
on living with CFS/ME; 3) Interventions for treatment
and management; 4) Professional values and support for
people with CFS/ME and their families; 5) Health professional roles and working practices. These are set out
in Table 2 below, which displays each main theme with
associated subthemes and illustrative quotes from participants. These themes and incorporated subthemes are
set out in the following sections.
1. Diagnosis
It was generally acknowledged that reaching a firm diagnosis of CFS/ME can be challenging for GPs working in
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Table 2 Main themes, subthemes and illustrative quotes from interviews with health care practitioners (HCPs)
Main theme
Associated sub-themes
Illustrative quotes
Diagnosis
The process of diagnosis
“I think there’s still some doubt you know amongst quite a lot of
professionals as to what, what the condition is ... in fact I think whether it
exists at all” (HCP3)
Professional experience and
expert practice
“... the more people you come across the more you pick up these little
differences all round the edges ... because they kind of sound very significant
actually there’s variability and the differences ‘cause often there’s a set range
of symptoms that we use to diagnose...” (HCP2)
No diagnosis, delayed
diagnosis, or misdiagnosis
“I think most people by the time they’ve got to us they’ve been round the
houses so many times or they’ve seen other consultants or they’ve been to
the GP backwards and forwards” (HCP1)
Confirming the diagnosis
“I think there’s always some I suppose that we would say are sort of
idiopathic chronic ... they perhaps appear to have all the kind of signs and
symptoms but maybe they still don’t they don’t quite fit the criteria...” (HCP1)
“I think they find it difficult to accept that they’ve got anything wrong with
them and if they have got something wrong with them that anybody else
will believe that there’s anything wrong with them” (HCP3)
Professional perspectives on the
impact of living with CFS/ME
Treatment and management
Accepting the diagnosis
The impact on life and living
“there’s lots of activity that they don’t even acknowledge they’re doing just
because it’s such basic day to day stuff ... they’ll only think about the big
things but um it isn’t just the big things” (HCP2)
Families & family burden
“carers find it quite difficult to know how to help and they might give very
mixed messages sometimes ‘cause they don’t know whether they should be
telling them to get off their bottom and get on with it or whether they
should be telling them to rest” (HCP2)
Financial burden
“people get incredibly stressed about their benefits” (HCP2)
“some people obviously financially have to work even if maybe it’s not the
best thing for their health” (HCP1)
Initial stages
“I think those people who come in with the kind of mind of ‘you’re going to
kind of give me information and advice and I’m going to go away and put it
in place’ those people do really well. I think those people who come in and
want you to do something to them and make it better I think inevitably
those people are disappointed because we can’t do that” (HCP1)
Complexity and severity of
the condition
“... everybody’s different and you know people haven’t always got one thing...
um they might have other problems as well, so then it starts to get even
more complicated because they’re supposed to be doing one thing for one
medical condition but the fact that they’ve got their ME means they’re
struggling to do what they should be doing for the other one...” (HCP2)’’
Progress and change
“she slowly moved forwards with initially hardly being able to do anything at
all to now she’s going out on a daily basis, now this is an illness that is
spread over seven years, eight years, and she is now improving, we also had
another patient in there who, who improved completely and has gone back
to work” (HCP6)
Alternative treatment
approaches & the evidence
base
“...we see people who’ve tried all sorts of different things and some of those
things are useful ...or those people feel like they’re useful but it it’s very it’s
difficult for our point of view because there’s no sort of evidence base for
any of those things...” (HCP1)
“We have different types of treatments looking after them, like acupuncture,
herbal remedy, tonics, and life style. I give them a guide line to say you
should do that and try not do that and diet wise we give them suggestions,
certain diet is good for this condition but something else are not too good”
(HCP5)
Cognitive, psychological &
counselling approaches
“some people ... perhaps maybe don’t need that kind of formal input and
maybe just access counselling or they use the kind of link worker service via
their local GP surgery um again just as a sort of means of more support ...
that works well for some people depending on what the issues are - some
people don’t need a kind of a whole formal sort of CBT process some people
just need some simple counselling...” (HCP1)
“...if you push yourself and you get tired and you get symptoms then ...
some people will tend to remain within the comfort zone, that’s not the
natural reaction, those are the people who actually do the best from CBT
because it actually helps them to break that cycle...” (HCP6)
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Table 2: Main themes, subthemes and illustrative quotes from interviews with health care practitioners (HCPs)
(Continued)
Professional values and support for
The existence of CFS/ME as a “I would say probably half of general practitioners don’t understand it and
people with CFS/ME and their families condition
regard it as a psychological manifestation, rather than a physical [one]”
(HCP6)
“you sometimes get whole practices which decide ME doesn’t exist” (HCP6)
“we do have patients who see GPs who will quite happily say to them they
don’t believe that CFS exists” (HCP1)
Therapeutic relationships and “I think most people go into their GP with a symptom that’s really worrying
client centeredness
them at that point or something they really need help with but they
probably don’t tell them the whole because they’ve got five, ten minutes”
(HCP1)
“with this particular condition they have to keep having help in different time
periods - it means what I did for her she could have been better for six
month and a little stress or something, symptoms came back so she’s back”
(HCP5)
Health professional roles and working
practices
Information available for
people with CFS/ME and
others
“... there is quite a lot of other stuff out there ... nowadays it’s very easy for
people to just type it into the internet and all sorts of stuff comes up ... that
is very confusing for people - you know there’s lots of people offering all
kinds of magic wonderful answers and I think when you want to get better
it’s very easy to believe all those things so I suppose we’re quite careful
about where we direct people to...” (HCP1)
Supporting people with CFS/
ME in the workplace
“..the kind of return to work programs that they are used to doing with
people who have broken their leg its completely different in that you can’t
get someone back to work with a condition like this in six weeks and they
are not going to go from no hours to full time in a short space of time”.
(HCP1)
Enabling self-management
“I do advise them very basically and very basic things on the boom and bust
here in terms of the charging the battery and not to spend it immediately,
that they will have good days and bad days and, and again to actually have
a constant energy expenditure on good and bad days” (HCP4)
“if you think how people normally deal with an illness if you get the flu you
go to bed for a week don’t you and then as it goes away you start to get up
and you just get going and you do a bit more every day ‘till you get back to
normal and that’s a normal response we all understand to illness, and so
people think they can do the same thing with this but it doesn’t work quite
the same” (HCP2)
“...certainly sometimes people have to push to get referrals to a clinic like
ours um or quite often we see people who’ve they’ve been on the internet
and they’ve found us and given the GP the details and then the GPs made a
referral” (HCP1)
“it’s never going to just affect that one person in isolation they have to have
that support set up around them so most people we see we would see with
someone else like that’s often and again because most people’s maybe
concentration isn’t very good they often need someone else to remember all
the information” (HCP1)
“..yeah I think we very much have a kind of ninety ninety-five percent of our
case load is a very kind of standard set of people and we really don’t have
very many people from kind of lower socio-economic groups or from ethnic
minorities - a few but probably even the people we have from ethnic
minorities probably still fall into that very kind of middle class group...we
don’t have many people who fall outside of that it’s very unusual and [this is]
a very ethnically diverse place” (HCP1)
“what I’ve seen over time is the middle class turning up in my clinic because
they want an explanation” (HCP6)
Specialist services & working
partnerships
Diverse populations
Professional frustrations
“I feel a bit frustrated if people need help and probably society doesn’t realise
they are ill - I do have a patient with ME who said my GP said it’s in your
mind, I don’t believe she has something in her mind, she’s depressed and
she’s very tired she struggled to get up but probably even family members
and friends don’t understand, they think you are lazy” (HCP5)
“some people never get past that and so they’re very stuck uh so it’s quite
difficult to get in there unless you’ve got that cooperation and the
willingness to work together” (HCP2)
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primary care, who may have little experience of the condition. Even though several participants thought that the
NICE guidelines were proving helpful, they saw the lack
of any diagnostic test giving conclusive proof of the condition as impacting on practitioners and patients alike.
One view was that until such a test is developed the
existence of the condition will remain in doubt amongst
some medical practitioners and policy-makers; patients
on the other hand may continue to demand more investigations to try and prove the authenticity of their condition. However, the process of diagnosis in primary
care was thought to have improved in recent times:
becoming more timely, with earlier referral to specialist
services, more certain and more accurate.
Exposure to new presentations of CFS/ME was considered important for improving primary care practice.
It enabled practitioners to recognise the condition and
develop confidence in their diagnostic skills. Very careful case history-taking, listening carefully and patiently
to presentation of symptoms, with appropriate investigation were all considered vital elements of practice. It
was acknowledged that some people with CFS/ME had
had “quite a rough time with the medical profession”
(HCP2) or worse still, “had been terrified by their previous contacts with medical services” (HCP6). Specialist
practitioners develop awareness of the wide range of
symptoms, whether physical or psychological, that can
be associated with the condition, and their significance,
through extensive exposure to CFS/ME.
The negative impact of ‘no diagnosis’, a delayed diagnosis or a mis-diagnosis were clearly acknowledged by
these participants. Consequences of delayed diagnosis
for improvement and recovery were considered significant, acknowledging that this left patients uncertain and
with entrenched and often unhelpful patterns of behaviour. Misdiagnoses which were mentioned by these
participants included depression and treatment for
depression. One respondent talked about a woman who
had been on antidepressants for two years and described
her as feeling, “emotionally numb but not physically any
better” (HCP3). One practitioner spoke about a patient
who had been told by her GP, “it’s in your mind”
(HCP5) and pointed out that she was clearly depressed
because she was tired, struggling to get up, and facing
disbelief even from family members and friends. They
realised that there are still patients whose diagnosis
remains uncertain and where practitioners face the continuing challenges of unravelling conflicting evidence
and beliefs. They affirmed that confirmation of diagnosis
may represent the end of a long period of uncertainty
for a person with CFS/ME and may thus be a significant
relief: “they know what’s wrong with them and they
have an idea of what to do” (HCP1). However, they also
observed that for someone who may have only been
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experiencing symptoms for a short period of time, the
presentation of this diagnosis may not be quite so
welcome.
2. Professional perspectives on the impact of living
with CFS/ME
These practitioners felt that despite the periods of great
uncertainty, doubt in themselves and growing mistrust
of the medical profession, experienced by people living
with CFS/ME, they may still find it very hard to accept
the ultimate diagnosis. They highlighted how negotiating
such ambivalence on the part of their patients could in
turn create particular challenges for the health professionals engaged in imparting the diagnosis and supporting patients in managing its consequences. Adjusting to
and accepting a long-term illness and its disabling consequences was acknowledged as being extremely testing,
whatever walk of life a person may be from; yet people
living with that illness may also be faced with the doubts
of others about the authenticity of their condition. Practitioners found that while some people will accept that
this is a long-term condition which may entail slow progress towards recovery, others will struggle to accept
and then adjust or even to acknowledge that they have
made any progress. People may go through a grieving
process and experience bereavement for the things they
have had to let go; this often takes time to work through
and deal with, all issues which may call for sensitive
support from the health practitioner.
Specialist practitioners found they therefore needed to
provide holistic and flexible support for patients faced
with managing serious restrictions to their lives and lifestyles which may lead them to stop work, and in
extreme cases to become bed- or housebound for long
periods. At the very least they have to constantly manage their activity levels so as not to push themselves
into over-activity which can trigger the ‘boom and bust’
experience described by most of these practitioners, and
being forced to remain in bed for several days to
recover. These practitioners felt that people with CFS/
ME may be stigmatised in the workplace, pressurised
into downplaying their symptoms; living in fear both of
losing what they have and of having a relapse due to
consequent overactivity.
Specialist practitioners highlighted that CFS/ME
impacts not only on the ‘big things’ such as employment, but even on basic day-to-day leisure activities
such as reading or watching TV, which need concentration and entail a significant memory load. People’s ability to sustain a conversation and take in information
may also be impaired, with implications for how intervention is managed by healthcare practitioners. Even
very simple things can cause a great deal of stress: not
being able to get the children to school, getting into
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difficulties with the Local Education Authority, and consequently unable to do anything else until such ramifications are all resolved.
These practitioners identified that such dilemmas can
further complicate access to support. Perhaps because of
fears that family, friends or colleagues will not understand the condition, people with CFS/ME may try and
keep other people, including members of their support
network, away when they are at a low ebb. This can also
prevent them really understanding the seriousness of the
condition. People who do have good support tend to do
better, but some people’s lives and commitments make
it very hard for them to act on advice. Parents of people
seriously affected by CFS/ME may come under extreme
pressure to have them back at home. It can be very difficult for carers to know how to act for the best, and
they may end up giving very mixed messages, which
may be confusing.
Financial pressures were identified as having a significant negative impact on health and recovery for people
with CFS/ME. Personal and workplace pressures may be
exacerbated by negative or inflexible responses from
agencies involved in assessing eligibility for incapacity
benefit (although there was some praise for doctors who
conducted the medical assessments entailed here),
potentially causing additional stress. People with CFS/
ME may also end up paying for various types of private
treatment, such as holistic or alternative treatments, but
also CBT. Again, this makes access to health practitioner support less straightforward and more complex.
3. Treatment and management
Practitioners from specialist services felt that initially,
receiving a diagnosis of CFS/ME may be so overwhelming that some people are unable to contemplate the
implications or take anything in. Others, however, are
well-prepared and well-informed, expecting to manage
the condition themselves and implement changes to
their lives and lifestyles. Those who do so tend to do
well, whereas those who expect “you to do something to
them and make it better” (HCP1) are inevitably disappointed and may not do well. They saw these patients
as needing time to adjust to the necessity of making life
changes; but even so, some may carry on, “fighting the
idea” (HCP2) of CFS/ME.
The vast majority of people seen by the HCPs from specialist services were described as being ‘up and about’, able
to attend a clinic and hold conversations. However, participants emphasised the variability between patients presenting with symptoms apart from the fatigue and where
some other symptoms, such as headaches, gut symptoms
or muscle pain may be predominant for some individuals.
Additional complications arise with co-occurring medical
conditions where, “the fact that they’ve got their ME
Page 8 of 13
means they’re struggling to do what they should be doing”
(HCP2). A very small proportion of people seen by specialist HCPs were living with a severe condition and were significantly unwell, confined to home, or bedbound in a
darkened room, unable to communicate. Even the specialist HCPs found this extremely challenging and they may
have very few helpful suggestions. Specialist HCPs would
visit people with a serious condition at home, or if appropriate maintain contact by phone, especially to offer support for the family. People who had been living with a
serious condition for a long period (e.g. 7 to 10 years)
were particularly vulnerable due, for example, to the complex psychological issues associated with making the transition from childhood to adulthood while socially isolated
and set apart from their peer group.
For this, admittedly minority, group these practitioners
saw progress and change for the better as fraught with
difficulty. They saw some of these patients as not knowing how to move forward, how to recognise or acknowledge improvement, even when this seemed obvious to
the practitioner, and that their experience might well be
enhanced with highly specialist psychological support,
which, however, practitioners may not be able to access
on their behalf. For other patients, even those with a
severe condition, the messages tended to be positive that “most people do come out in the end and they do
start to move forwards” (HCP1).
These specialist practitioners recognised that for those
with long-term illness, changing established patterns can
be very hard. Some did report success stories, such as
examples of people making a full recovery and returning
to work, as well as examples of relapse and the breakdown of family support systems. While they thought
that most of such individuals coped, “incredibly well”
(HCP1) progress in itself can be difficult. Some people
continue to fight the idea of CFS/ME and its implications, including actively seeking to engage with health
professional services. It may take many months before
they accept the condition and decide to make positive
steps to change their lives by giving up work, reducing
working hours, and making significant lifestyle changes.
Then they may return to a specialist HCP for support.
However, it is often hard for people to see that they
have made progress, and progress when it comes may
never be quick enough, in turn placing understandable
pressure of expectations on the practitioner-patient
relationship.
People try all sorts of alternative treatments and therapies, including diets, acupuncture, herbal remedies,
tonics and lifestyle interventions. While some of these
are reported as helpful, or at least found helpful by people with CFS/ME, from an NHS practitioner’s point of
view making any recommendations of such treatments
is difficult because there is no evidence base for them.
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Aspects of cognitive behavioural therapy (CBT) can be
very useful in helping people break counterproductive
patterns of thought and behaviour in some cases. However, engaging in the whole formal CBT process may
not be necessary. Specialist practitioners were of the
view that, in fact, for those who are very poorly, it is
pointless. The stage at which CBT is brought in is
important and relevant, but for many, the sort of counselling service available through a GP practice may be
enough. Specialist HCPs said they often used CBT principles in their practice, especially where unhelpful patterns of thought and behaviour, anxiety or stress were
evident. NHS HCPs all emphasised how difficult it was
for adults with CFS/ME to access formal CBT, despite
there being a small proportion of patients who would
definitely benefit. Adults with CFS/ME rarely met the
strict acceptance criteria set by NHS mental health services for CBT.
4. Professional values and support for people with
CFS/ME and their families
Specialist HCPs identified a core minority group of GPs
in their region who made referrals to their service, but
contrasted these GPs with the many who did not understand CFS/ME, and who see it as a psychological rather
than a physical condition. They reported whole practices
as having decided that CFS/ME did not exist and that
many GPs would never make a referral to a specialist
service. Participant HCPs reported how some patients
told them that their GP openly stated their lack of belief
in the existence of CFS/ME.
All participants emphasised the importance and
powerful therapeutic value of listening. One specialist
said that, “patients will often say ‘you’re the first people
that have actually listened to me’” (HCP2). Time limits
in the primary care system often constrain patients from
recounting their full story, and, “the doctor is too busy,
they don’t have time really facing the patients for five
minutes just to say OK, then the computer, then done”
(HCP5). However, these participants reiterated the need
for practitioners to be knowledgeable, empathic, inventive and capable of learning, acknowledging the patient’s
condition and taking it seriously. They should be able to
respond flexibly to people’s needs, accommodate the difficulties inherent in the condition that affect concentration and/or physical access, remain positive and
encouraging and work in ways that engender a trusting
relationship.
Trust was considered to be a primary issue. For example, specialist practitioners were very clear in saying that
not all sources of information were to be trusted. For
some people with CFS/ME the internet may provide
valuable information on specialist services; for others, it
may be hard to access and a source of confusing and
Page 9 of 13
misleading information, “offering all kinds of magical,
wonderful answers” (HCP1). Practitioners therefore
reported exercising care about where they direct people
for information which will help them understand or
explain their condition to others; HCPs from specialist
services reported using standard information packs and
DVDs, and directing people to local support groups or
expert patient programmes. They also reported recommending leaflets produced by Action for ME or the ME
Association, and referring people to the Citizen’s Advice
Bureau (CAB) or Disability Information and Advice Line
services (DIAL UK) for advice on disability-related support matters such as benefits or mobility issues. They
highlighted the importance of providing appropriate and
accurate information for employers of people with CFS/
ME as well as employees with the condition. It could take
pressure off the employee by making it clear that, “recovery [would] be a matter of months rather than weeks”
(HCP4). One specialist practitioner felt that people with
CFS/ME were stigmatised when it came to the workplace
and advised them to, “tell their employer that you’ve just
got post viral fatigue and it will get better, don’t tell them
you’ve got low grade ME” (HCP6). Specialist HCPs
would often see people from high-stress, highly demanding jobs but felt it was unusual to get them back into the
same type of job. They would often choose not to return
to the kind of work that might have been part of the problem. However, some people might not have the choice,
and would have to continue in full-time employment,
limiting the potential for the practitioner to support life
and work change strategies. Participants found that
patients who were not in work mostly wanted to get back
to employment, but that they needed to be supported to
establish a consistent pattern of activity as an essential
precursor to any successful return.
5. Health professional roles and working practices
Specialist HCPs all focused on the importance of engaging patients and enabling them to manage their own
condition. Succeeding in doing this depended on their
developing a relationship of trust, where they could support people to think things through, and then make
their own decisions based on a clear understanding of
what might need to be changed. Specialist HCPs
described using a number of skills to enable patients to
gain clarity and insight. They encouraged people with
CFS/ME to manage their overall activity in different
ways, rather than always just to reduce their activity. To
develop a constant and consistent expenditure of energy,
people with CFS/ME needed to understand their symptoms but it was not helpful for them to become too
symptom-focused. These practitioners recognised that
the challenges for people with CFS/ME were often
highly complex and not to be underestimated.
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Specialist HCPs acknowledged how much pressure
some people had had to exert just to get a referral to
their service. They emphasised that there was a need for
specialist services to be more ‘visible’ and to provide education for other HCPs, GPs especially, because, “there is
quite a lot of ignorance about the condition in the GP
population” (HCP3). This perhaps was understandable
because GPs lacked frequent exposure to these patients.
Specialists had both experience and expertise to be able
to support GPs and other HCPs in reaching or confirming a diagnosis (e.g. post viral fatigue vs CFS/ME), giving
advice on appropriate medication, or providing services
such as specialist Occupational Therapy. Specialists were
involved in supporting people applying for benefits, often
trying to help other agencies understand the variability
inherent in the condition. They reported working in flexible ways with families or partners as well as with the
person with CFS/ME themselves. This is partly because
the family is naturally implicated due to the nature of the
condition in restricting many everyday activities, but also
because the person themselves may be unable to take in
information and advice. They did indicate that referrals
to the specialist service from GPs who did refer were
becoming more timely.
Most of the specialist HCP caseload was reported to
be white middle class and female, despite the participants’ services being located in an ethnically diverse
area. Patients seen were mostly in the twenty to thirty
age group, far fewer men than women and far fewer
people from manual or routine occupations, again
despite the demographic structure of the catchment
areas. One specialist HCP thought that the people from
ethnic minorities who were seen in their service tended
to be middle class anyway, and that men in particular,
found it hard to come to terms with the loss of role
associated with giving up work. The one exception was
the HCP from London who was a holistic practitioner
and who saw a range of nationalities: “...Pakistani,
Indian, English local...no huge difference [in treating
people from different ethnic groups]” (HCP5).
All HCPs who were interviewed described several
sources of professional frustration in the course of
working with people with CFS/ME. These included the
lack of recognition or common acknowledgement of the
condition by society and its institutions, such as health
or benefits agencies; poor access to resources such as
CBT or other psychological services when they were
thought to be necessary; people with CFS/ME themselves, who either refused to acknowledge progress or
ignored the advice that had been given but came back
again and again; and finally, feelings of inadequacy due
to the general limitations of knowledge and understanding about the condition and how to help people who are
stuck and not making progress.
Page 10 of 13
Discussion
This study has explored the views and experiences of a
small number of healthcare professionals who were considered by people with CFS/ME to have been particularly helpful and effective in their management and
support. Despite the small number of participants in the
study the amount and type of data collection was consistent with qualitative studies of this type. By accessing
participants with varying levels of experience and expertise this study was able to explore issues through a
range of viewpoints [32], capitalising on the unique circumstances of the individual participants but open to
the recurrence of shared issues and insights [35].
It is perhaps worth more than passing consideration
that from a group of 36 people with CFS/ME only eight
practitioners were nominated on the grounds of helpful
and effective management and support. Findings from
these interviews reflect practitioner experiences over a
number of years, covering periods before and after publication of the NICE guidelines, but before the introduction of ‘Employment and Support Allowance’ and the
associated ‘Work Capability Assessment’ by the U.K.
Government. Some comments, however, specifically
relate to the period following publication of the NICE
guidelines in 2007. The findings highlight key themes
which reflect a clear and sensitive recognition by these
practitioners of the experience of living with CFS/ME,
and the sometimes complex challenges to delivering
‘best practice’. Such challenges certainly include the frequent and marked uncertainty which may be shared by
primary care physicians and patients alike, and those
also associated with being given a diagnosis of CFS/ME;
the continued denial in some professional quarters of
the existence of CFS/ME as a condition; the variability,
complexity, and serious impact of the condition on life
and living, the ‘big’ issues such as employment and
finance and also routine activity; the onus on the person
with CFS/ME to manage their condition, which can and
should be eased with support from HCPs, and the need
for appropriate and timely specialist intervention in
some circumstances; the wealth of often conflicting and
confusing information on the condition, options for
treatment; the vital role of extended listening and trustful relationships with patients and the need to actively
‘co-ordinate’ the patchwork of support potentially available to them.
The scepticism of some GPs that CFS/ME actually
exists [3,5] is still seen to be an ongoing and complicating issue. While the introduction of the NICE guidelines
was reported to have improved the efficiency of onward
referrals to specialists, there was clearly a well-founded
perception that for people presenting with symptoms in
primary care management of the condition was still a
lottery. Practitioners in this study thought such inequity
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had an impact not only on a patient’s current well-being
but also on their prognosis. GPs accepting CFS/ME as a
clinical entity tend to have more positive attitudes to
this group of patients [4], but there are clearly still GPs
whose lack of confidence in diagnosis, views on the
legitimacy of the condition and attitudes to onward
referral to specialist services reflect those of studies elsewhere [5]. Positive attitude, encouragement and ongoing
support were linked with successful outcomes by participants in this study. These practices align well with the
general principles of good patient-centred communication for building trustful relationships [26] and the
expressed needs of people living with CFS/ME [8].
Being given a firm diagnosis of CFS/ME could clearly
be just the start of a difficult struggle to get well for
many people with CFS/ME, according to the specialist
practitioners in this study. They underlined the complexity of the condition in terms of health and psychosocial impacts, which were challenging not only for
patients but also for HCPs supporting them. Wider
scepticism about their condition and conduct [7] was
encountered within the family, the workplace and in
dealings with statutory services such as benefits agencies. Flexible attitudes and ongoing support was considered an essential part of specialist HCP working
practice, as emphasised in the NICE guidelines [2], but
working in these ways was also described as challenging,
not only in the health and social care context, but also
within the context of the client-practitioner relationships, especially where clients expected speedy treatment
and recovery [30].
A self-management approach was clearly advocated by
all participants in the study for an otherwise often-disempowered patient group. Self-management programmes [24] which include strategies such as clientcentred goal setting, self advocacy training, education
and peer mentoring encouraged cautious optimism
among participants for improvements in quality of life
of people living with CFS/ME. The impression from
specialist HCPs in this study was that flexibility and
responsiveness, combined with additional support from
peers or peer groups and third sector organisations contributed to a necessarily patchworked set of approaches.
These practitioners did not consider interventions such
as CBT as simple panaceas for all people living with the
condition, but to be implemented where appropriate,
and working effectively if well-targeted. There was a
clear need expressed by practitioners for more knowledge on the part of their colleagues about the condition
and about interventions for the condition, including
CBT. The need for more research into specifically how
CBT may contribute to physical improvement and
which elements of it are essential to recovery has been
underlined [18].
Page 11 of 13
The positive message that most people do well - eventually - echoes the single case study of a young woman
with a severe condition [25]. The authors emphasise the
challenges faced by client and practitioners alike, stress
the vital role of teamwork in addressing the complexities
of CFS/ME, as well as the problems and pitfalls facing
patients after a lengthy illness, and that “a fear of progress is real for some patients” [25]. According to HCPs
in our study, located across rural, semi-rural and urban
populations, teamwork happens pragmatically across a
distributed network of locations, services and individuals. Providing information and keeping knowledge
about specialist services up-to-date may be hard to
achieve, but was clearly a key means for developing and
sustaining quality provision for people presenting with
symptoms or living with CFS/ME. It has been argued
[9] that people with CFS/ME themselves could also be a
valuable resource in interactive educational initiatives
for family doctors’ training and Continuing Professional
Development (CPD), and that such initiatives might
counter the evident lack of preparation for primary care
management of this condition. Training of medical and
other health professionals clearly needs to address not
only shortfalls in knowledge but also the significant attitudinal barriers that clearly still abound [8,21].
The validation process, with careful attention to presentation and discussion of findings with relevant
groups generally gave credence to the study findings.
However, one of the workshop delegates commented
that the study participants’ assertion that the majority of
people they saw were white, middle class and female,
did not accord with their own experience. The findings
from this small qualitative study of HCPs’ experiences
clearly do not permit generalisation on this and other
counts. Nonetheless the sample includes participants
from a specialist team which covers urban and rural
areas in a region with a widely ranging socio-demographic profile, suggesting that even in such a context
individuals from other groups may find accessing specialist and/or constructive care to be problematic.
Conclusion
This study has reported on the views and experiences of
a small number of health professionals from a range of
disciplines, who were judged by people with CFS/ME to
have been particularly helpful and effective in their management and support. Professional frustrations were
clearly expressed about the variability of services both in
primary and specialist care and continuing equivocal
attitudes of some professional colleagues to CFS/ME as
a condition and which could impact both on timely
diagnosis and on consequent timely access to other support. However, there were also strong positive messages
for people with CFS/ME, where the right services are in
Horton et al. BMC Family Practice 2010, 11:89
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place. Many of the findings from these practitioners
seen by their patients as helping them more effectively,
accord with the existing literature both from the practitioner and patient perspective identifying the particular
importance of listening skills, respect and trust for
establishing a therapeutic relationship which recognises
key features of the patient trajectory and promotes
effective person-centred management of this complex
condition. The findings of this study indicate the need
to build such skills and knowledge more systematically
into professional training informed by the experience of
specialist services and those living with the condition.
Appendix 1
Interview topic guide
1. What is it like in your experience to work with
people with CFS/ME? Perhaps you could think of a
client who you have worked with and tell me what
you did.
2. If I was someone with CFS/ME, how would you
help me get the information and help I needed?
3. How well do you think you recognise and respond
to the needs of people with CFS/ME?
4. There is often a good deal of uncertainty or
unpredictablity in people’s CFS/ME symptoms over
time - can you think of ways in which you have
helped people deal with this?
5. Think about someone with CFS/ME who has
experienced stigma (negative attitudes) - tell me
what happened and why it came about.
6. There is a great deal of emphasis these days on
clients taking an active role in their health/social
care - how do you understand this client role in
working with people with CFS/ME?
7. There are people from some socio-economic groups,
ethnic minorities or who have a severe condition who
may have especial difficulties in accessing services have you had experience of working with any of these
groups? Can you describe your experiences?
8. In your experience, what training is needed for
professionals working in your field?
Acknowledgements
The authors would like to acknowledge the contributions of the CFS/ME
Observatory Reference Group in general for critical revisions to the
manuscript and the following members in particular: Catherine Hislop; Susan
A Sykes; Margaret E Norwood; Nina Crummy; Sarah Feehan. This study is
part of the CFS/ME Observatory project, sponsored by Action for ME (AfME)
and funded by the Big Lottery Fund.
Author details
School of Allied Health Professions, University of East Anglia, Norwich NR4
7TJ, UK. 2Department of Primary Care Research, University of Hull, Castle Hill
Hospital, Castle Road, Hull HU16 5JP, UK. 3Faculty of Society and Health,
Buckinghamshire New University, Uxbridge Campus, 106 Oxford Road,
1
Page 12 of 13
Uxbridge, Middlesex, UB8 1NA, UK. 4Department of Nutrition and Public
Health Intervention Research, London School of Hygiene and Tropical
Medicine, Keppel Street, London WC1E 7HT, UK.
Authors’ contributions
MdeLD, JCdeCL, SH, MM, DP, LN and FP were responsible for conception of
the study; MM, FP, MdeLD, JCdeCL, DP and LN were responsible for the
ethics application (REC 06/MRE02/58); MdeLD, JCdeCL, SH, FP and MM
designed the methodology; SH, FP, MdeLD, JCdeCL, MM, PC and DP
developed the topic guide; SH and JCdeCL conducted the interviews; SH,
MdeLD, SK and FP carried out the data analysis; MM, FP and SH organised
the validation exercises and dissemination events; SH, FP and SK organised
the writing up of the article; SH, SK and FP wrote the first draft of the
manuscript; DP, LN, and PC commented on the manuscript and all authors
approved the final version.
Competing interests
The authors declare that they have no competing interests.
Received: 10 August 2010 Accepted: 15 November 2010
Published: 15 November 2010
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Cite this article as: Horton et al.: Chronic fatigue syndrome/myalgic
encephalomyelitis (CFS/ME) in adults: a qualitative study of perspectives
from professional practice. BMC Family Practice 2010 11:89.
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