RESEARCH Open Access
 Social support needs for equity in health and
 social care: a thematic analysis of experiences of
 people with chronic fatigue syndrome/myalgic
 encephalomyelitis
 Jose C de Carvalho Leite1, Maria de L Drachler1, Anne Killett1, Swati Kale1, Luis Nacul2, Maggie McArthur1,
 Chia Swee Hong1, Lucy O?Driscoll4, Derek Pheby3, Peter Campion5, Eliana Lacerda2 and Fiona Poland1*
 Abstract
 Background: Needs-based resource allocation is fundamental to equitable care provision, which can meet the
 often-complex, fluctuating needs of people with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME).
 This has posed challenges both for those providing and those seeking support providers, in building shared
 understanding of the condition and of actions to address it. This qualitative study reports on needs for equity in
 health and social care expressed by adults living with CFS/ME.
 Methods: The participants were 35 adults with CFS/ME in England, purposively selected to provide variation in
 clinical presentations, social backgrounds and illness experiences. Accounts of experienced needs and needs-
 related encounters with health and social services were obtained through a focus group (n = 6) and semi-
 structured interviews (n = 35). These were transcribed and needs related topics identified through data-led
 thematic analysis.
 Findings: Participants emphasised needs for personalised, timely and sustained support to alleviate CFS/ME
 impacts and regain life control, in three thematic areas: (1) Illness symptoms, functional limitations and illness
 management; (2) practical support and social care; (3) financial support. Access of people with CFS/ME to support
 from health and social services was seen to be constrained by barriers stemming from social, cultural,
 organisational and professional norms and practices, further heightened for disadvantaged groups including some
 ethnic minorities. These reduced opportunities for their illness to be explained or associated functional limitations
 and social disadvantages to be addressed through social support. Participants sought more understanding of bio-
 psycho-social aspects of CFS/ME, of felt needs of people with CFS/ME and of human rights and disability rights, for
 providing person-centred, equitable care.
 Conclusions: Changes in attitudes of health practitioners, policy makers and general public and more flexibly
 organised health and social care provision are needed to address equity issues in support needs expressed by
 people with CFS/ME, to be underpinned by research-based knowledge and communication, for public and
 professional education. Policy development should include shared decision-making and coordinated action across
 organizations working for people with CFS/ME, human rights and disadvantaged groups. Experiences of people
 with CFS/ME can usefully inform an understanding of equity in their health and social care.
 Keywords: Chronic Fatigue Syndrome/Myalgic Encephalomyelitis, thematic analysis, social support, experiences,
 recognition, social welfare
 * Correspondence: f.poland@uea.ac.uk
 1School of Allied Health Professions, University of East Anglia, Norwich,
 England, United Kingdom, NR4 7TJ, UK
 Full list of author information is available at the end of the article
 de Carvalho Leite et al. International Journal for Equity in Health 2011, 10:46
 http://www.equityhealthj.com/content/10/1/46
 ? 2011 de Carvalho Leite 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.
Background
 Providing equitable care for people with Chronic Fatigue
 Syndrome/Myalgic Encephalomyelitis, commonly known
 as CFS/ME, has posed particular challenges for health
 and social services. The concept of health equity takes a
 critical perspective on determinants of health. As Mar-
 mot (2008) [1] argues, differences in health between
 groups of people that could be prevented by reasonable
 action are unfair. A health equity perspective requires
 inequities in the distribution of resources that shape
 health outcomes to be questioned. This article reports a
 qualitative research study that examines challenges for
 equitable access of people with CFS/ME to appropriate
 health and social services in England where there are
 state-provided services. Access to these, however, is
 linked to, and often constrained by official recognition
 of health conditions. Where, as with CFS/ME, these are
 difficult to diagnose and to recognise as genuine ill-
 nesses, inequalities of access arise to health and to
 health-relevant social care.
 CFS/ME is a serious problem, which in other coun-
 tries has been shown to affect up to 0.4% of the popula-
 tion [2]. It may thus affect up to a quarter of a million
 people in Britain. However, exact numbers for the UK
 are not yet known, due to a lack of empirical population
 evidence. It is up to three times more common in
 women than in men, and affects all classes and social
 groups [3]. Up to 25% of people may at any one time be
 severely ill (housebound or bedbound) [4]. Little is
 known about prognosis [5], except that the illness may
 last for many years, with complete recovery unusual,
 and with a worse prognosis in those severely ill [6,7].
 Inappropriate care in early stages of illness appears to
 be associated with the development of severe disease
 and a poorer prognosis [8].
 Quality of life is linked to a broad range of human
 experiences related to overall well-being [9]. These are
 influenced not only by morbidity and functional status,
 but a wide range of domains like health promotion,
 personal care, independent living, family roles, work,,
 leisure and material well-being [10]. Social exclusion
 implies restriction in participating in these domains.
 Considerable evidence suggests the needs of people
 with CFS/ME for illness management and social inclu-
 sion are often unmet and lead to a lower quality of life
 [11] for themselves and their familiesThe disease is
 poorly recognized by health and social professionals
 and the general public. It affects neurological, gastroin-
 testinal, cardiovascular and muscular systems, with a
 variety of symptoms, including severe muscular pain
 and physical and mental fatigue, which may fade, reap-
 pear or worsen over time, varying between individuals
 [12]. About 25 per cent of those with confirmed
 diagnoses become housebound or bedridden and most
 experience adverse effects on functional status [13,14].
 Lack of consensus about the nature of the illness, case
 definition and even terms such as CFS or ME contri-
 bute to uncertainty on clinical guidance and epidemio-
 logical information.
 Diagnosis can be complex; a study of patients having
 fatigue lasting more than six months and seen by GPs,
 using the ?Centres for Disease Control? criteria, [15]
 found one third had CFS/ME [16]. A lack of specific
 diagnostic tests or physical signs restricts the process of
 diagnosis to clinical history-taking, examination and
 exclusion of other diseases. Delay in establishing a diag-
 nosis of CFS/ME delays access to many types of sup-
 port. It is often only diagnosed after long term suffering,
 sometimes over ten years after symptoms began [4].
 Lack of knowledge and inadequate communication
 between patients and professionals has often been bar-
 riers to diagnosis and care as a CFS/ME diagnosis may
 rely on patients accurately relating histories of their
 health problems. There is no specific treatment, and
 those offered mostly focus on alleviating impairments
 and improving functionality.
 Some doctors lack acceptance and knowledge of
 CFS/ME [17-21]. Group discussions with 46 GPs in
 England [22] showed that they tended to negatively
 stereotype patients with CFS/ME as having anti-social
 characteristics, including failing to conform to the
 work ethic or to acceptable sick roles, in conflict with
 their doctors about the causes and management of
 their illness, so raising barriers to effective care. A
 recent survey found that while 72% of GPs accepted
 CFS/ME as a recognised clinical illness, 48% lacked
 confidence in diagnosing and 41% in treating it [23].
 GPs who recognized CFS/ME as a genuine condition
 [24] saw more patients with the disease or knew some-
 one socially who had it, had more positive attitudes
 towards patients with CFS/ME. Where their GPs do
 not acknowledge or do not know about living with
 CFS/ME, this may lead to people with CFS/ME having
 higher levels of depression, anxiety and social exclu-
 sion [25]. Health professionals negative attitudes may
 be explained by problems with case definition and con-
 tested labels such as CFS, making it easier to aggregate
 a heterogeneous mix of patients as a single group, or
 to view the illness wholly as a psychological condition.
 Physicians? discomfort with uncertain diagnosis and
 management protocols [26], increasing pressures to
 rapidly diagnose and treat, and communication pro-
 blems between people with CFS/ME and care profes-
 sionals, may exclude patients from available treatment
 and social benefits and lead them to seek complemen-
 tary forms of treatment [27].
 de Carvalho Leite et al. International Journal for Equity in Health 2011, 10:46
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Evidence based clinical guidelines for CFS/ME recom-
 mend a holistic management based on biological and
 clinical research, expert opinions and social research on
 users? views on their illness and needs. The UK guide-
 lines point to insufficient evidence about the felt needs
 of people with CFS/ME [28].
 Exclusion from welfare benefits also follows from a
 lack of acknowledgement of the impact of CFS/ME on
 functional ability. Thanawal and Taylor [29] found that
 lack of financial resources and of knowledge of service
 availability were the two most frequently reported bar-
 riers to service use in a sample of 47 adults with CFS.
 People with CFS/ME are more likely than people with
 other diseases to have their claims for disability benefits
 denied by occupational doctors, but to receive such ben-
 efits after legal appeal [30].
 Social exclusion relates to lack of participation in
 domains related to wellbeing, and may be particularly
 severe if discrimination is due, not only to having CFS/
 ME, but also to other factors which make participation
 difficult. These include age, gender, sexual orientation,
 ethnic background, poverty and local facilities.
 There is evidence of widespread social inequalities in
 the health of the CFS/ME community [23]. Social exclu-
 sion from healthcare may be even greater for the non-
 White population and for women [31,32]. Community-
 based studies related to CFS/ME have found higher
 levels of this illness in non-White populations [33] but
 lower levels of shared recognition of it [34], other types
 of social inequalities in health which may be associated
 with poor prognosis [35].
 This indicates the need for studies specifically addres-
 sing the needs of people more likely to be disadvantaged
 in their access to adequate care, such as those living in
 low socio-economic conditions and from ethnic minor-
 ity groups. The study reported here therefore aimed to
 investigate the impact of CFS/ME on people from varied
 social backgrounds, including those from ethnic minori-
 ties, and what challenges may be posed to health care
 practitioners in providing appropriate and equitable care
 for this condition.
 This study is part of a National Observatory of people
 with CFS/ME in England. This aims to produce and to
 facilitate epidemiological and social research, in
 response to the needs of these people so as to fill a
 major gap in the evidence of the occurrence and the
 impact of this disease.
 The research to be reported here provides analytic
 findings from the views of people with CFS/ME them-
 selves about support they need from health and social
 services, identifying major sources of inequities in
 healthcare, and indicating strategies needed for their
 needs to be equitably provided.
 Methods
 The study design was a qualitative inquiry using in-
 depth, semi-structured interviews and thematic analysis.
 Participants and procedures
 The participants were 35 adults (18 years and older)
 with CFS/ME in England. Purposive sampling proce-
 dures aimed to recruit participants representing maxi-
 mum variation in the experience of living with CFS/ME,
 and of opinions about what is needed from health and
 social services across England, drawing on diverse ethnic
 and socio-economic backgrounds, illness severity and
 duration.
 Recruitment began in November 2006, after ethical
 approval (MREC 06/MRE02/58), and ended in March
 2008. Initially, the researchers (MD and CS) contacted
 relevant support groups, community organisations and
 centres, practitioners, and media to publicise the CFS/
 ME Observatory and this study across England.
 People living with CFS/ME who approached the
 research team as willing to take part were posted gen-
 eral information on the CFS/ME Observatory and
 detailed information about the study aims and proce-
 dures,, a brief questionnaire of illness experience and
 socio-demographic details, and a stamped addressed
 envelope to return a slip confirming willingness to
 take part. From the pool of 52 potential participants
 who returned this slip, the researchers successively
 selected participants purposively, until the sample cap-
 tured a diverse range of illness severity, duration, social
 variation (age, gender, ethnic background and socio-
 economic conditions)and year of diagnosis (Table 1).
 Saturation in relation to types of illness experiences
 and needs were also seen to have emerged in the inter-
 view dataset.
 Six of the 35 participants were purposively selected (to
 include a diverse range of illness severity, duration and
 social variation) for both an initial focus group discus-
 sion as well as later one-to-one interviews with a
 researcher. The other 29 were invited to take part in
 one-to one interviews only.
 Description of participants
 Table 1 lists characteristics of the 35 participants,
 including age, gender, education, employment, ethnicity,
 illness duration and time since diagnosis.
 Data collection
 The research data elicited through focus group discus-
 sion and the one-to-one interviews were descriptions of
 experiences, beliefs and feelings about living with CFS/
 ME and being managed within health and social care
 services in England. These were tape-recorded and
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transcribed verbatim with the written informed consent
 of all participants.
 The focus group with six people with CFS/ME was
 used to identify the main themes and issues to be
 explored more deeply in the subsequent interviews. The
 group?s dynamic facilitated participants to consider their
 own and others? views. It took place in a quiet room
 and lasted for two hours, with a break for refreshment
 and rest. The group was conducted by a researcher
 (MM), while another researcher (JL) supported the
 group dynamics, observed and took notes to facilitate
 later analysis. The discussion was managed as a conver-
 sation,, encouraging participants to tell their own stories
 to help articulate their ideas about the experience of liv-
 ing with CFS/ME. Three broad areas of enquiry
 reflected in guide questions were used as starting points
 to encourage story-telling and discussion to facilitate the
 emergence of story line narratives within these areas: (a)
 becoming ill and being diagnosed; (b) the impact of liv-
 ing with CFS/ME; and (c) self-management and being
 managed within health and social care services. Story-
 telling allowed themes to emerge, without being fixed to
 a set research agenda. The sequence and wording of
 questions were decided in the course of the discussion
 to respond to participants? preferences and conversa-
 tional styles.
 One-to-one semi-structured interviews of about 45
 minutes (up to a maximum of 3 interviews per partici-
 pant, 45 interviews in total) were conducted with the 35
 participants by a researcher (JL) at the participant?s
 Table 1 Social, demographic and illness characteristics of the study sample
 Participants Age group (gender) Ethnicity Highest level of education Employment Disease duration1
 P1 41 to 55 (female) White British university retired 7 ?
 P2 41 to 55 (female) White British university unemployed 7 ?
 P3 26 to 40 (female) White British university self-employed 1-3
 P4 56? (female) White British university employed 7 ?
 P5 41 to 55 (female) White British college unemployed 7 ?
 P6 26 to 40 (female) White British secondary school unemployed 4-6
 P7 26 to 40 (female) White British college unemployed 7 ?
 P8 18 to 25 (female) White British college student 4-6
 P9 56 ? (male) White British university unemployed 7 ?
 P10 18 to 25 (female) White British college student 4-6
 P11 41 to 55 (female) White British university unemployed 7 ?
 P12 18 to 25 (female) White British secondary school unemployed 1-3
 P13 56 ? (male) White British university employed 7 ?
 P14 26 to 40 (female) White British college sick leave 7 ?
 P15 56 ? (female) White British secondary school retired 7 ?
 P16 41 to 55 (female) White British university unemployed 4-6
 P17 ? 56 (male) White British university unemployed 4-6
 P18e 41 to 55 (female) German-Jewish university employed 7 ?
 P19 41 to 55 (female) White British college employed 7 ?
 P20 41 to 55 (male) White British university retired 7 ?
 P21e 26 to 40 (female) Chinese university employed 7 ?
 P22 56 ? (male) White British university retired/self-employed 7 ?
 P23 56 ? (male) White British secondary school retired self-employed 7 ?
 P24 41 to 55 (female) White British university employed 7 ?
 P25 41 to 55 (male) White British secondary school retired self-employed 7 ?
 P26 41 to 55 (female) White British university retired 7 ?
 P27e 41 to 55 (female) African university sick leave 7 ?
 P28e 41 to 55 (female) White-black African secondary school unemployed 7 ?
 P29e 41 to 55 (female) White-black Caribbean secondary school unemployed 4-6
 P30e 26 to 40 (female) White & Asian university sick leave 1-3
 P31 56 ? (female) White British college Housewife 7 ?
 P32 26 to 40 (male) White British secondary school retired 7 ?
 P33e 41 to 55 (female) Portuguese secondary school unemployed 7 ?
 P34e 18 to 25 (female) Chinese & White college student 7 ?
 P35 26 to 40 (female) White British university unemployed 7 ?
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home or another place convenient for them. The inter-
 views were managed as a conversation guided by ques-
 tions informed by analysis of the focus group data.
 Data analysis
 The focus group and interview data having been tran-
 scribed verbatim, thematic analysis was used, as a sys-
 tematic method of identifying themes or patterns within
 the data [36]. This method is accessible to an educated
 public, and recommended for research aimed at inform-
 ing policy and service development [37]. Inductive the-
 matic analysis was carried out on both the focus group
 and interview datasets.
 The focus group data transcript was analysed by four
 researchers (JL, MD, AK and FP), who together identi-
 fied the main storylines and emerging thematic areas of
 support needs, and then adapted the question guides for
 the one-to-one interviews.
 The one-to-one interview transcripts were analysed by
 five researchers (JL, MD, AK, SK and FP) drawing on
 the inductive approach suggested by Miles and Huber-
 man [38]. They first independently read and re-read the
 transcripts to identify and extract words and text sec-
 tions which appeared to describe experiences of living
 with CFS/ME and encountering health and social ser-
 vices. They independently selected, focused and con-
 densed the data in tabulated written notes, with codes
 such as ?not believed?, ?understanding from employers
 helpful? and ?coping strategies?. Each code was linked in
 the table to text ?chunks? [38] and pre-analytic remarks
 together used to establish a preliminary code system
 which yielded many themes detailing experience of
 symptoms and their effects on their lives, relationships
 and changes over time related to the responses and sup-
 port they received from health professionals, family and
 others. Following the initial development of the preli-
 minary coding system, three researchers (JL, AK, SK)
 met to compare the reliability of codes and to agree the
 developed coding scheme. Before comparative subject
 analyses were carried out, these researchers developed
 new codes emerging during further individual analysis
 which included a richer variety of experiences of living
 CFS/ME and services and to ensure data saturation.
 Finally, a wider group of researchers (JL, AK, SK, L?OD,
 FP) drew conclusions for the whole dataset by identify-
 ing themes or patterns, contrasts, clarifying relationships
 and building an interpretative understanding from the
 set of narratives. The codes and themes identified
 emerged from participants? own issues over the whole
 data set, without reference to themes identified in pre-
 vious research.
 Steps to enhance trustworthiness aimed to ensure that
 project findings accurately represented participants?
 viewpoints [39]. Different researchers independently
 analyzed the data, and then checked understandings
 with each other (researcher triangulation, including
 authors from diverse professional and academic back-
 grounds in analysis and reporting, using a variety of
 research methods); individual and focus group inter-
 views and observation to gather data (methodological
 triangulation); comparing the issues arising from this
 project with literature (theoretical triangulation); sharing
 the study results with participants to check whether
 their expressed main views were included, to be
 amended to take account of their response (respondent
 validation); review of the draft report by the steering
 group and reference group of the CFS/ME Observatory,
 with members of the CFS/ME community and other
 stakeholders to also inform the report (member check-
 ing); dissemination events to share key findings with
 CFS/ME community members to check their perceived
 relevance (member validation).
 Participant narratives consistently highlighted how
 CFS/ME is a complex, distressing, problematically-per-
 ceived and debilitating condition with a major impact
 on quality of life.
 Results
 The interpretative process helped to organize the narra-
 tives of equity in support needs into three interrelated
 thematic areas of perceived need for equity. These are
 summarized here as:
 (1) Illness symptoms, functional limitations and ill-
 ness management;
 (2) Practical support and social care;
 (3) Financial support.
 (1) Illness symptoms, functional limitations and illness
 management
 Participants all reported that before becoming ill with
 CFS/ME they had had an active family, social and pro-
 ductive life as housewives, parents, offspring, friends,
 students, researchers, professionals, manual or clerical
 workers. They reported illness-related experiences of a
 wide range of distressing and debilitating impairments
 and functional limitations, varying greatly in combina-
 tion and intensity between participants and over time.
 Seeking support for managing their health challenges
 characteristically involved them in lengthy and proble-
 matic processes, reflected in the sub-themes which fol-
 low, of: gaining recognition of their symptoms,
 impairments and limitations as illness; achieving a diag-
 nosis; and gaining appropriate health services support to
 manage their illness.
 Experienced symptoms and impairments commonly
 included severe fatigue experienced as highly dispropor-
 tionate to the activities preceding them, not relieved by
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rest, usually accompanied by cognitive impairments such
 as memory and concentration difficulties. Pain was
 another major and common symptom, as well as sleep
 problems, such as overwhelming drowsiness alternating
 with frantic sleeplessness. Other distressing symptoms
 reported by some participants were: gastro-intestinal
 problems,, sensory and chemical hypersensitivities,,
 tachycardia, dizziness on moving, and frequent
 infections.
 Experienced limitations on activities were also seen to
 vary greatly between individuals and between differing
 periods of the same individuals? experience with this
 condition. These ranged from being able to maintain
 activities of daily living, employment and communica-
 tion at the cost of much effort and restriction in other
 activities, to major limitations, being wheel-chair-,
 house- or bed-bound with multiple hypersensitivities
 and pain.
 Participants revealed how they were facing distinctive
 illness-related barriers, in gaining recognition of their ill-
 ness. To manage this complex illness required people to
 gain access to appropriate health expertise which, in
 turn, could affect their likelihood of gaining family and
 wider social support . However, their encounters with
 health professionals were reported as often problematic
 in ways which both delayed or reduced access to such
 support and greatly exacerbated emotional pressures.
 There were reiterated experiences of not being lis-
 tened to by healthcare practitioners, as one young Asian
 woman commented:
 ?...actually what she said to me.? I?m the doctor I know
 best....?. You see, when they say that to you, when they
 are not really listening to you, that?s frustrating? (P30
 White-Asian female, educated to university level)
 This often posed particular problems in the earliest
 stages of the condition. Nearly all participants, from
 both white and non-White groups spoke of their illness
 not being taken seriously by GPs, with individual symp-
 toms being dismissed, perhaps as ?a virus? or as a com-
 mon cold. Many participants experienced this as a
 profound lack of acknowledgement:
 ?(...). when I was telling them it was like this (...). They
 said. oh no, just shhh, we?ll give you anti depressants so
 you can just go, go be quiet somewhere and it?s just like,
 they weren?t listening? (P34 Chinese-White female col-
 lege student).
 This was echoed by most non-White participants as
 in:
 ?I don?t think I was treated seriously, they didn?t take
 on board what I was saying and my symptoms?(P29
 White-Black Caribbean female, educated to secondary
 school level).
 Such difficulties have a particularly marked impact on
 equity, as GPs are frequently required to act as
 gatekeepers to other health services, or to social
 resources, leading to treatment delays. As one person
 commented:
 ?She was often very reluctant to provide a formal letter
 and I always dreaded having to go and see her when I
 needed another letter because I felt I was always having
 to justify my illness and justify myself and I felt that she
 thought I was making an excuse.? (P2 White British
 female, educated to university level).
 Such recognition was also central to gaining most
 forms of assistance from health or social care needed to
 enable them to participate in both public and private
 social life, including work, education, leisure and family
 life. While clearly an issue for the majority of partici-
 pants challenging such lack of recognition could be
 especially difficult for people from ethnic minority
 groups in which such illnesses were less commonly
 identified as self-recognition and belief of the symptoms
 and experiences was also problematic.
 ?I never heard of any black person, or any other ethnic
 minority who?s got this illness (...) I just thought maybe,
 you know, this is a white middle class illness? (P27 Afri-
 can woman, educated to university level).
 This was reflected in participants across all ethnic
 groups wanting health care practitioners to have the
 time to help the patient feel ?empowered? (P24), and
 ?believed? (P1, P34), to increase their sense of inclusion
 and acknowledgement.
 Achieving a diagnosis was seen as the crucial mile-
 stone for most participants (P1, P3, P4, P5, P7, P9, P11,
 P14, P32, P34). Where this led to advice from doctors
 and other health care professionals with particular
 knowledge of CFS/ME, this was almost invariably a
 positive experience. For example, one participant com-
 mented on his unusual luck in gaining a prompt GP
 diagnosis, leading to coordinated care and support from
 his manager, which allowed him to work part-time
 within his capabilities and to gain sick leave and retire-
 ment as the illness progressed (P32). Most participants,
 however, found doctors saying they could not help,
 resulting in their feeling abandoned to fight the problem
 by themselves:
 ?I don?t think I have seen anybody for about two years
 now, and I haven?t had my medication reviewed properly
 during that time or any specific help from a doctor since.
 I?ve been pretty desperate really, because (...) I want to
 move forward. (...) a lot of people don?t believe me while
 the GP doesn?t seem to believe that these symptoms
 exist.? (P1 White British female, educated to university
 level).
 Even when bed-bound, participants encountered
 unsupportive attitudes from health professionals which
 greatly undermined their chances of wider belief and
 support:
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?I was more or less bed bound for a couple of years, (...)
 and meanwhile the doctors were telling me there was
 nothing wrong with me. So I was under pressure from
 employers, family and everyone else to stop imagining
 that I was ill, and to get out of bed and get on with my
 life.?(P9 White British male, educated to university level).
 Disagreements over diagnoses and over-attention to
 psychological symptoms could lead to inappropriate
 treatments which paradoxically contributed to deteriora-
 tion in emotional well-being:
 ? (...)the only stress I?m suffering now is the stress of
 being ill, you know the frustration of it. I wanted to get
 back to work; I was anxious about my classes, so the doc-
 tor kept putting on my medical certificate chronic anxi-
 ety state.? (P20 White British female, educated to
 university level)
 While these participants felt that the health care sys-
 tem should explore useful interventions, they more
 often encountered oppositional health services
 responses. Some therefore decided to use a private or
 alternative health services as a way of getting diagnosis
 or help, often exacerbating stress, uncertainty and finan-
 cial pressures:
 ?I was lying on the floor in pain a lot of the time and
 all I had was the doctor just giving me pain killers. (...)I
 said I wasn?t suffering from stress. I am stressed because
 you?re not doing anything about it (....). Then I had some
 private medical insurance. (...I saw so many different
 people and I saw this osteopath that I paid privately. He
 thought I had ME so I paid privately to go and see Dr **
 (NHS consultant) (...) so I could get a diagnosis.? (P16
 White British female, educated to university level).
 Illness management. Participants suffered from lack of
 control over choices of treatment for managing their ill-
 ness, which they saw as due to both lack of resources in
 the National Health and social systems and relative lack
 of recognition or value given to their own experience
 with the illness. Where participants? and GPs? views dif-
 fered on appropriate treatment, typically around graded
 exercises or antidepressants, a refusal to take antidepres-
 sant medication was often interpreted by the GP as a
 refusal of treatment. Participants desperate for relief of
 feelings of pain or illness reported finding treatments
 such as massage, osteopathy, dietary advice and acu-
 puncture helpful, and it caused ongoing frustration that
 such interventions were not funded by either the NHS
 or by private health insurance for CFS/ME (P12, P16,
 P21 P27, P28, P29, P34). Citations show these as espe-
 cially likely to be mentioned by participants from ethnic
 minorities.
 People who had hospital care described their need for
 designated wards for CFS/ME, with environments
 adapted to their needs, as in keeping light and noise
 levels low (P10). Some participants highlighted the
 limited time for consultations as a barrier to appropriate
 care provision and another reason for seeking support
 outside the NHS. For example, one Asian woman (P30)
 explained that her NHS acupuncturist limited treatment
 to only three needles, whilst the private service she
 eventually attended but could only afford for a limited
 time allowed the acupuncturist time for enough needles
 for pain relief and to discuss her situation.
 People from minority ethnic backgrounds reported
 particular difficulties in accessing health and social care
 support systems, experiencing more stigmatisation and
 stereotyped responses that did not fit their health needs.
 For example a Caribbean woman said she was not taken
 seriously because of her ethnicity, with all symptoms
 interpreted as psychiatric in origin;
 ?They sent a psychiatrist round to ask me if I was hav-
 ing problems and you?ve got so many children and you?re
 separated from your husband and I was saying no, I?ve
 been separated from my husband for years why would it
 just come now? (P29 White-Black Caribbean female, edu-
 cated to secondary school level).
 They expressed a need for workers from the same cul-
 ture who could relate to their background. An African
 woman (P27) observed that ?pain in Black people is stig-
 matised and you see more black people in mental health
 than other people...? going on to report being given
 injections roughly, within a system where attitudes were
 often unsympathetic to both her illness and her ethnic
 background.
 Some non-White participants therefore experienced
 ethnic group-specific lack of understanding of their
 condition and situation in trying to access a diagnosis.
 Just as the quality of social relationships was seen to
 be closely bound up with processes of accessing
 health services, access to social care and support was
 seen as vital for managing their lives and for practical
 support.
 (2) Practical support and social care
 In relation to the theme of practical support and social
 care, sub-themes detailed the importance participants?
 attached to securing: practical support to avoid escalat-
 ing the illness, and associated financial problems; social
 care given and received in gaining control over their
 lives; and so to secure social and cultural inclusion to
 optimise wellbeing within the limits of their illness.
 Practical support for personal care, family roles, inde-
 pendent living and support for carers was invariably
 seen as extremely important for people with moderate
 to severe illness. Many participants described needing
 help with all personal and domestic tasks: with moving
 around the house, getting out of bed and from chairs,
 washing and dressing, feeding and self-care, running a
 home, including meals preparation, shopping or cleaning
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(P5, P6, P9, P11, P12, P35 P10, P27), and how these
 intensified with childcare:
 ?When you have children it?s not just the meals, it?s the
 homework, it?s the washing and ironing, you know, it?s
 the full Monty.? (P16 White British female, educated to
 university level).
 One person described teaching her five year old
 daughter to phone for help and to make herself a drink
 in case she found her mother unable to move. She com-
 mented that in appointments GPs never asked her
 about how the home was being run (P26). Participants
 described other family members having to cover such
 family responsibilities, as with a young mother, a single
 parent, whose own mother covered this role (P35),
 whose ten year old child was doing the housework (P16)
 and, refused practical home social care support even
 when, as with a Chinese participant her older mother-
 carer, became ill, this led to an eleven year old friend
 cooking and doing housework for both of them (P21).
 While participants were aware of the need for a
 balanced diet to maximise their limited health and
 energy, several described having to go without food
 when they were physically unable to prepare it:
 ?I needed complete rest and somebody to do the shop-
 ping, to do the cooking and (...) sometimes I needed
 weight builders? food because I didn?t even have the
 energy to hold a fork so I needed complete care really.?
 (P9 White British male, educated to university level).
 Social care, both given and receivedcould be seen as
 an issue of paramount importance for most participants?
 life priorities which often included sustaining their own
 roles as family caregivers. A participant who was mostly
 bedbound with hypersensitivities to sound, light, touch
 and chemical products said that, to support an indepen-
 dent life, she would need trained carers and highly spe-
 cific home adaptations (P35). These required improved
 access to social care.
 They highlighted how lack of access to social care and
 practical support was exacerbated when health practi-
 tioners would not recognise their illness, making a pro-
 found impact on their ability to carry out their family
 caregiving roles, particularly as parents. Participants
 described how ?most people with CFS/ME don?t get
 social care? raising serious questions about how people
 might go on and manage their lives with the debilitating
 symptoms they reported. Nonetheless, until a diagnosis
 was gained, social services often could not even assess
 their needs (P5). Without social care support, often
 partners, parents and sometimes children had to become
 carers. One, not unusual, example was described:
 ?On my bad days I didn?t have any help. I?ve got a four
 and a half year old and a six year old (who) couldn?t
 have gone to school. She would have been here on her
 own with me. (...) ...I couldn?t do anything physical at
 all. (...) I had to tell her how to programme the phone in
 case I collapse.? (P3 White British female, educated to
 university level).
 Inevitably minimal access to other forms of support
 also had an impact on carers, as P1 explained:
 ?My husband has been ill at times and I?m sure it?s
 just the stress because he never stops, he has to do all
 the shopping, (...). He has to do everything. Without him
 I would just never survive on my own. We paid for a
 cleaner to come in for three hours on a Wednesday
 morning (...) as my husband has to work and we get no
 social help or no disabled badges or anything.? (P1
 White British female, educated to university level).
 A participant whose mother had given up work to
 care for her described the severe strain on family life in
 providing care for two adult offspring with CFS/ME and
 her grandchildren (P8). A male participant recounted
 the collapse of his relationship with his partner, under
 such strain (P13).
 Maintaining social and cultural inclusion. Participants?
 daily living was therefore greatly affected, both directly
 and indirectly, by CFS/ME, from inequities in access to
 health and, relatedly, social support and social inclusion.
 Participants recognised that CFS/ME was a chronic con-
 dition, which could have a catastrophic impact on their
 lives, with no ready ?cures?. However, even if treatments
 were not available, they still needed services to help
 reduce the impact of the condition, to make life more
 bearable and to reduce exclusion:
 ?(...) if somebody cannot use their legs properly you
 should give them a wheelchair? (P20 White British
 female, educated to university level).
 Instead many underlined their heightened experiences
 of social isolation and dependency.
 ?I?m house trapped and my husband does most things?
 (P15) linking these to extensive needs for practical sup-
 port: ?I couldn?t lift a cup or get downstairs by myself. I
 couldn?t get out of the house.? (P6, White British, edu-
 cated to secondary school level). Such perceptions of
 exclusion were heightened for some non-White
 participants:
 ?I know if I happened to be a white person the story
 will be different. They ?d probably be more sympa-
 thetic, yes it does affect whether you?re black or white,
 Asian? (P27 African woman, educated to university
 level).
 Where people could not find alternative ways of get-
 ting support for practical tasks, the home environment,
 where they had to spend most of their time, becoming,
 not their refuge, but a further source of stressful experi-
 ences of deteriorating well-being. Such issues pointed
 up further inequities in the financial burden arising
 from the health and social demands of living with this
 condition.
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(3) Financial support
 Financial support was consistently identified as crucial
 for illness- and life-management, and to maintain educa-
 tion, social relationships and material well-being. Yet all
 participants described many financial constraints arising
 in the absence of other forms of support to live with
 CFS/ME. There were primary consequences of impover-
 ishment, but then secondary consequences for social
 standing, relationships and future entitlements. Limited
 incomes imposed hard choices about what money
 would be spent on, which debts to run up. These are
 presented in sub-themes concerning: private income,
 savings and insurance; accessing welfare benefits and;
 accessing employment.
 Private income, savings and insurance. As well as find-
 ing their ability to gain income reduced, participants
 faced additional expenses with CFS/ME. Feeling ?written
 off? by state health provision, many described paying for
 relatively expensive treatments to manage pain, or diets
 to optimise their wellbeing (P23, P34). Some participants
 had benefited from resources such as medical- or
 employment-related insurance (P16, P13, P11, P25),
 some using these to get specialist assessment and diag-
 nosis more speedily. One participant found that private
 insurance quickly stopped paying for treatments for
 CFS/ME, arguing that they were not known to be effec-
 tive (P13). Another refused to pay out on a critical
 insurance policy when the participant had to give up
 work through CFS/ME, seemingly just as poorly
 acknowledged in the private sector. A few participants
 had managed by living on savings or renting out prop-
 erty, but saw their financial situation drastically reduced
 by the impact of CFS/ME (P13, P25). For participants
 affected from school age, their parent(s) may have had
 to reduce or to stop working altogether to care for
 them, affecting the whole family?s income (P30, P35).
 For people with no private insurance or savings to fall
 back on, and unable to work, the main way forward was
 to apply for state benefits.
 Accessing welfare benefits. Participants described the
 frustrations of attempting to apply for welfare benefits
 while affected by CFS/ME.
 ?I have recently been running around even though I?ve
 got problems, because of the DLA [Disabled Living
 Allowance], to try and get everybody to speak to each
 other? (P28 female White-black African)
 The nature of CFS/ME symptoms, with extreme fati-
 gue, pain and cognitive impairment, meant that compli-
 cated forms having to be completed even to start the
 process, were especially daunting. Where benefits assess-
 ments were based on questions about function, people
 felt acutely that their limitations, which often varied
 greatly over a time period, could not be adequately
 represented and recognised.
 ?the way they ask the questions and (...) when you
 answer, can you prepare a meal, (...) because you say
 ?occasionally I can? they disregard you straight away.?
 (P33 White European female, educated to secondary
 school level).
 Many participants described the clear official lack of
 understanding of the variable nature of the condition,
 and that despite occasionally being able to carry out cer-
 tain activities, the overall impact on functioning was
 severely limiting. One person insisted on an assessing
 doctor spending several hours with her to appreciate the
 impact on fatigue and function of carrying out tasks
 (P10). Participants frequently found the benefits system
 complicated and confusing, something to ?fight? rather
 than a source of support. Not being able to predict what
 they were entitled to, people found out in a hit-and-
 miss way, making arduous applications for benefits that
 were then often refused. While some from both White
 and non-White groups, pursued appeals, with help from
 welfare rights services (P10, P14, P7, P35, P32, P33, P23,
 P29, P34, P1, P16), several did not feel well enough to
 pursue such battles (P5, P9, P30, P29, P3). Many partici-
 pants, especially from non-White groups, expressed
 their needs for much more information on entitlement
 to help focus their applications on attainable benefits
 (P3, P5, P7, P16, P19, P20, P21, P23, P27, P28, P32, P34,
 P35). However, most participants saw the inflexibility of
 such forms as ?inappropriate for assessing the level of
 disability in ME term: they don?t give scope to express
 the worsening of symptoms restricting activities? (P35,
 White female, educated to university level).
 Some described the irony of only being able to appeal
 and succeed in gaining benefit when they were better.
 One Chinese woman, advised by welfare rights workers
 to make claims on the basis of symptoms such as anxi-
 ety and depression rather than CFS/ME, saw her diag-
 nosis of CFS/ME as impossible for the system to
 recognise (P21).
 Some participants, unable to claim any benefits,
 whether through lack of support from benefits staff or
 their current financial situation, experienced profound
 effects on their lives, being bereft of resources, and
 enforced total dependence on family or partner.
 ?Me never having any income of my own really became
 a really big issue with me and my partner and that
 became the stick he beat me with metaphorically (...)
 and the same with your social standing with your peers
 (...) if you are not getting sickness benefit you are seen as
 a sort of a drain.? (P5 White British female, educated to
 college level).
 Where not getting benefit and feeling too unwell to
 sign on for unemployment benefit, people could then
 experience a lack of acknowledged civil status and, with-
 out being credited for National Insurance payments,
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worries about the implications for later claiming pen-
 sions (P27, P5).
 Where benefits were successfully secured, these were
 always perceived as helpful. Two participants were able
 to use their Incapacity Benefit to regain social engage-
 ment by supporting themselves to study part time (P2,
 P16). A few gained Disability Living Allowance (P6, P15,
 P32). One person described being helped by Social Ser-
 vices staff to apply for ?direct payments?, to employ
 somebody to carry out personal and domestic tasks,
 help with managing finances and, importantly, leaving
 the house for social contact (P32).
 Some people could use state benefits, private insur-
 ance or savings to pay for different forms of practical
 help, including: employing an au pair for help with
 domestic tasks and childcare, (P24, P6), and employing
 a ?personal assistant?, not just for physical domestic
 tasks but with home administration, like managing
 finances (P26).
 Accessing employment: For people beginning to
 recover and wanting to increase their activities gradually
 to include limited part time work, income support was
 seen as too inflexible to allow this. The benefit stopped
 if people started work, even when they could not work
 sufficient hours to earn enough money to support them-
 selves (P15, P19, P24). Their condition posed other
 dilemmas; to obtain essential benefits they needed to
 represent themselves as very impaired, yet in attempting
 to move back into employment or education, they had
 to represent themselves as minimally affected (P16, P18,
 P19, P12). Pressures from both rigid benefits systems
 and inflexible routines were found often to impede their
 recovery and continued employment or social
 participation.
 The specific inequities participants faced were
 therefore closely linked to the attitudes, knowledge
 and behaviours of practitioners in health and social
 services and the lack of appropriately responsive, per-
 sonalised services to meet their complex needs for
 health and other practical support, including means
 to manage financial demands. The interactions
 between these factors frequently increased rather than
 reduced barriers, so creating a socially unsupportive
 system experienced as unresponsive and inequitable.
 However, while non-White groups were seen to high-
 light their difficulties in securing financial support (as
 for social and practical support) they mostly did not
 draw further, explicit links with their ethnicity. Most
 participants called for more research to help evidence
 the treatment, management and social support for
 CFS/ME, together with more training for health pro-
 fessionals (P2, P15, P15, P18, P20, P21, P22, P25, P26,
 P35).
 Discussion
 This study investigated the expressed needs for health
 and social care of CFS/ME of people from varied social
 backgrounds, including those from ethnic minorities,
 and the challenges posed to health care professionals in
 providing appropriate and equitable care for this condi-
 tion. As Marmot [1] argues, differences in health
 between groups of people, that could be prevented by
 reasonable action, are unfair and analysing these partici-
 pants? accounts reveals devastating and exclusionary
 experiences stemming from the limited understanding
 and responses of others to their condition. Their
 accounts offer detailed reasons for their low quality of
 life as found by other studies such as Anderson and
 Westwing [40]. However, these findings ground these in
 wider experiences of cumulative exclusions from pre-
 vious life activities and relationships and also from the
 social and health professional support needed to help
 regain health or at least manage their lives with some
 respect. Our results point up the pressures imposed in
 seeking to live acceptably with the illness, the vital role
 of social and professional acceptance, knowledge and
 support and, where these are absent, the systematic
 inequities in health and social care that follow.
 The underlying structure of their expressed needs is
 summarised in Table 2 and discussed in two parts, (1)
 the barriers to equity in meeting support needs in health
 and social care, and (2) the priority policies and strate-
 gies for equity suggested by participants? accounts and
 considered in the context of other findings.
 Barriers to equity in meeting support needs in health and
 social care
 For these participants, making sense of the illness and
 gaining a diagnosis was seen to be crucial for self-manage-
 ment. These become vital where illness-related needs fluc-
 tuate requiring prompt and sensitive responses which
 include appropriate management within the health system
 and gaining support in other areas of life, as within net-
 works of family and friends, education, work, social secur-
 ity and pensions. Although fulfilling these needs depends
 on the ability to communicate symptoms by the person
 with CFS/ME, family and friends, the key to gaining a
 diagnosis is seen to lie with the health professionals they
 encounter, crucially at the GP consultation stage. Partici-
 pants described unhelpful successive meetings with health
 professionals which made them feel ?powerless?, ?disbe-
 lieved? and ?isolated?; whilst in helpful meetings they
 referred to feeling ?relieved?, ?trusted?, ?confident?. Scepti-
 cism of health professionals, particularly GPs, in recognis-
 ing that CFS/ME exists, still poses a problem. A survey in
 the UK, of 46 GPs? beliefs relating to CFS/ME, showed
 44% as considering this illness condition not to exist [41].
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Research findings since 1995, are not yet incorporated in
 health professionals? training [42].
 Caring for people with CFS/ME can challenge health
 professionals. Negative attitudes toward GPs were
 expressed by almost all participants, as reported in other
 studies [43,44]. Similarly, GPs often perceive this patient
 group as difficult to deal with [24]. But GPs are also
 known to be important in helping people to understand
 and deal with this incapacitating illness [45]. While
 being believed seems crucial to building participants?
 trust in their relations with health professionals, medical
 training specifically encourages reliance on objective
 signs. Restrictions on time, specialist knowledge of CFS/
 ME and cultural attitudes including age, gender and eth-
 nicity stereotyping may also contribute to uneven trust
 in treatment relationships.
 Table 2 Support needs and priority strategies for equity in health and social care, and risk factors for increased
 inequity from participants? experiences of living with CFS/ME
 Priority policies and strategies from experiences of CFS/ME Public and professional relevant knowledge
 CFS/ME
 Human and disability needs and rights
 Needs-based care
 Social inclusion and health and social equity
 Understanding of needs of people with CFS/ME
 Acceptance
 Illness recognition
 Proactive attitudes
 ? Supporting
 Values and practices
 Support needs for equity in health and social care User power and control
 Needs-based choice
 Inclusive
 Non-stereotyping
 Policies and systems
 Responsive and flexible
 Integrated and coordinated
 Health and social services
 Supportive
 Personalised
 Mutually respectful
 Timely
 Continuous
 Quality of life
 Social inclusion
 Wellbeing optimised
 Purposeful living sustained
 Illness managed
 Social support
 ? Undermined
 Illness/disease status not recognised or legitimised
 Risk factors for increased inequity in CFS/ME experience Limited psychological/physical explanation for illness
 Age and gender stereotypes
 Ethnicity (soc exclusion, cultural boundaries, services access, stereotypes)
 Health and social benefits knowledge, accessibility, entitlement
 Citizenship (postcode lottery, national insurance entititlement)
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Social cognition models applied to other chronic ill-
 nesses point to the roles of significant others where the
 mediating factors of support and understanding help in
 coping with chronic illness. To counter powerlessness,
 people with chronic illness are advised to attempt to
 pass on control to significant others, like their families,
 or sympathetic health professionals who can protect the
 person from stressors, by reducing the stigmatizing
 potential of the illness through increasing self-esteem
 [46,47], by providing practical support and facilitating
 access to care [3]. However, for these study participants
 sources of such social support were less common, their
 need for support was frequently disbelieved, their social
 and civic status diminished and their access to both
 health and social support consequently reduced. Partici-
 pants therefore either remained overwhelmed, or turned
 to self-management activities, often forced to rely on
 their own knowledge and on scarce and dwindling
 resources.
 These participants expressed clear awareness that their
 quality of life was seriously affected by inequities in care
 closely linked to attitudes, knowledge and behaviours of
 service practitioners, and to unfair policies, systems and
 services which were inadequate to meet their specific
 needs for health, other practical and financial support.
 Their consequent attempts to access services were fre-
 quently reported as exhausting, demoralising and
 isolating.
 Insufficient expertise in dealing with people with com-
 plex and partially-explained needs, and lack of respect
 for human and disability rights lead to discriminatory
 norms and practices towards people with CFS/ME.
 Their situation was seen to socially disadvantage them,
 and also people connected with them, within an envir-
 onment of prejudice and inadequate resources.
 Participants explained how appropriate care could be
 provided through empathic, personalised, timely, holistic
 and coordinated support from health and social services.
 Guidelines for overall management of CFS/ME and for
 supporting people with long-term conditions and com-
 plex needs (3) point out that health professionals should
 act as advocates for their patients in negotiations with
 employers, educational institutions and social welfare
 organisations, and also in arranging part-time work or
 school alternatives as needed to enable them to partici-
 pate equitably in both public and private social life,
 including health care, work, education, leisure, family
 life and social security. Participants? accounts describe
 devastating and isolating experiences, resulting from the
 scant understanding of their condition and individual
 and systemic disrespects to human and disability rights.
 Their stories affirmed the critical place of choice and
 control identified by Larun and Malterud [48] as contri-
 buting to whether people with CFS experienced physical
 activity as beneficial or harmful, and in developing suita-
 ble strategies to achieve positive energy-activity balance
 across life activities which facilitate inclusion.
 However, the difficulties in overcoming barriers to
 access support appeared overwhelming for people
 unused to the complicated welfare support system, for
 those from minority backgrounds or in disadvantaged
 socio-economic conditions, and also when criteria for
 accessing support were too rigid to apply. The dimen-
 sions of equity and inequity and attitudes undermining
 and supporting them are set out in Figure 1. The inter-
 actions between these factors frequently heightened
 rather than ameliorated barriers to their well being.
 Many people with CFS/ME are unable to work full-
 time, and those moderately to severely affected cannot
 work at all, so that financial difficulties often rapidly
 arise. Similarly, CFS/ME frequently disrupts educational
 studies. This study shows those participants, where state
 benefit was secured and who were willing or able to do
 some work, then faced losing their entitlement to social
 security benefit. Successful return to work or school,
 after a such a prolonged illness, requires a personalised
 and coordinated rehabilitation programme incorporating
 medical treatment, psychological support, occupational
 therapy and a more flexible policy towards the mainte-
 nance of state benefits.
 The findings of health inequity may help explain pre-
 viously reported widespread social inequalities for the
 CFS/ME community [23]. Social exclusion from health-
 care was seen to be greater for the non-White popula-
 tion and for women [31,32]. While studies have found a
 higher ratio of White people with CFS/ME in tertiary
 care than in the local ethnic mix, studies outside the UK
 of community prevalence CFS/ME have found higher
 levels of CFS/ME within non-White populations
 [34,49,50]. Luthra and Wesseley [33] and Buchwald et
 al. [34] found people with CFS/ME from non-White
 populations as having less social support than those in
 White populations. Such associations in disparities in
 health and social access between ethnic minority groups
 and others in the UK are supported by wider reviews of
 evidence like that of Szczepura [51] which identified the
 clear need for health services to be responsive to the
 cultural needs and practices of patients if diverse popu-
 lations are to have more equitable access to health care.
 In our study, ethnic minority respondents? experiences
 could be seen to mirror many aspects of those of White
 people with CFS/ME, but in some cases as undergoing
 additional exclusions, not always self- linked to ethnic
 groups. A recent CFS/ME Observatory epidemiological
 study of CFS/ME in primary care in England [52], found
 relatively lower proportions of non-White than White
 people diagnosed, suggesting that practices may under-
 diagnose CFS/ME in these groups. This complements
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 Page 12 of 17
evidence for adolescent girls from less deprived areas,
 that consulting behaviours may affect chances of gaining
 a CFS/ME diagnosis [53], However no studies have yet
 explored possible ethnic disadvantages linked to consult-
 ing practices relating to CFS/ME in primary care.
 Other types of social inequalities in health within the
 CFS/ME community such as poorer education and
 employment have also been associated with poor health
 outcomes [35]. These raise the need for studies to
 address the needs of people with CFS/ME who seem
 likely to be at even greater disadvantage in their access,
 via consultation and help-seeking practices, to adequate
 care, such as those living in disadvantaged socio-eco-
 nomic conditions, and people from black and other
 minority groups.
 If the current health and social system based on work
 status, conditional citizenship and similar criteria has
 been seen to restrict access to adequate care, as in this
 study, this suggests a human rights-based system may
 be needed to secure more equitable support for people
 with CFS/ME and similarly complex conditions.
 Priority policies and strategies suggested by participant
 experiences
 The practical value and impact of available health and
 social services was seen to be constrained by experi-
 enced inequities in care, driven by lack of wider under-
 standing of bio-psycho-social aspects of CFS/ME,
 dismissal of felt needs and experiences of people with
 CFS/ME, insufficient expertise in dealing with people
 with complex needs and overlooking human and disabil-
 ity rights.
 Pro-active attitudes towards health and social equity
 should be backed up by producing and communicating
 Figure 1 Summary of dimensions of equity and inequity in managing support needs and strategies expressed by people with CFS/ME
 and factors undermining and supporting equity.
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knowledge and advocacy, based on further research, and
 through public and professional education. Expertise in
 CFS/ME and a multidisciplinary holistic approach to
 people with unexplained long term conditions and com-
 plex needs was seen to facilitate early diagnosis and
 satisfaction with care. Health professionals, particularly
 GPs, have a direct role in diagnosis, illness management
 and emotional support to deal with an incapacitating ill-
 ness. Crucially, they are also gate keepers and advisers
 for relevant people and organizations who might provide
 support. Chances of support therefore often depend on
 encountering GPs, who consider their symptoms as
 legitimate, have knowledge of CFS/ME, actively support
 the client to diagnosis and beyond [54]. Our study also
 confirmed the importance of patients? belief in the med-
 ical encounter for building successful therapeutic clinical
 alliances, identified in studies such as Deale and Wesse-
 ley?s [55], of patient perceptions of medical care in a
 specialist fatigue clinic,. Our findings confirmed the per-
 ceived consequences of such alliance-building for acces-
 sing further medical treatment and appropriate social
 and financial support.
 Improving the by contrast, often-challenging, client-
 professional relationships was given priority in most par-
 ticipants? suggestions for policies and strategies, again,
 reflected in other studies [3,34,43,44]. In 2007, the UK
 Department of Health launched National Institute for
 Health and Clinical Excellence (NICE) guidelines for
 CFS/ME diagnosis and management [28]. While the
 comprehensiveness of these guidelines is still debated,
 aspects strongly supported by CFS/ME organisations
 and findings of this study include the importance of
 multidisciplinary and partnership working between
 healthcare professionals and patients, their families and
 carers. Setting up multidisciplinary teams across Eng-
 land is still in progress, with the role of primary care
 commissioners to ensure equitable provision of such
 services across England, remaining crucial.
 In contrast to the NICE guideline recommendation
 that people with CFS/ME should be able to make
 informed decisions about their care and treatment [28],
 participants in this study indicated that their control
 over choices about health care remains in the hands of
 doctors many of whom appeared to lack the knowledge
 or ability to enable the personalised support needed.
 Fundamental care in diagnosis and treatment and
 diverse types of therapy and complementary care were
 valued as important (especially by members of ethnic
 minority groups) but not usually or sufficiently provided
 by the National Health Service, sometimes being acces-
 sible only to those in a position to pay but distancing
 them further from their GPs [27] Such differences con-
 tribute markedly to social inequalities in health for
 those in disadvantaged socio-economic conditions, who
 are less likely to receive the care they need. Advice on
 managing symptoms should be given from the outset,
 and not withheld until a diagnosis has been made.
 Healthcare professionals should proactively advise on
 flexible adaptations to work or study, referring to specia-
 list CFS/ME care based on need. The benefits system as
 a whole needs procedures which can recognise the
 social support needs of those with cognitive impair-
 ments and communications cultural barriers for
 socially-disadvantaged groups including some ethnic
 minority groups.
 The UK Department for Work and Pensions policy
 launched in 2008 [56], instituted a new benefit called
 Employment and Support Allowance (ESA) which aims
 to support disabled and ill people to return to work, by
 assessing what people can do rather than what they can-
 not. This encourages people lightly and moderately
 affected with CFS/ME to increase social participation by
 working. However, this study?s findings indicate that the
 ESA?s potential to improve equity in social care can only
 be fully realised if expert health professionals effectively
 assess their clients? potential, allowing for disease sever-
 ity and fluctuation [57].
 Policies and strategies should, therefore, focus on
 acknowledging the complexity of CFS/ME and the high
 intensity needs of people and families with this condi-
 tion [58,59], enhancing professionals? expertise on CFS/
 ME, increasing coverage, personalisation and complexity
 of their care, ME, drawing on the expert opinions of ser-
 vice users, amplifying inclusion criteria, simplifying
 pathways and protocols to access care and benefits, and
 acknowledging human rights and disability rights. The
 study findings indicate that those policies and strategies
 suggested by people with CFS/ME sit well with evi-
 dence-based guidelines for overall management of their
 condition (19) and of chronic illnesses in general [60],
 as well as with wider policy recommendations for over-
 coming social inequalities in health [61] and for social
 inclusion of people with disabilities [62].
 Strengths and limitations
 A strength of this study, is the diversity in professional
 and academic backgrounds of its authors, recognized to
 increase data analysis trustworthiness [36]. The relatively
 large purposive sample of 35 people, with greater diver-
 sity of social backgrounds and illness severity than many
 other studies of experiences of this illness, is also likely
 to have covered wider variations in experiences of the
 health and social services. The topic question guidelines
 for the data collection facilitated the emergence of story
 lines and of diverse needs. The data-led analysis, and
 the multiple trustworthiness mechanisms (including
 researcher and methodological and theoretical triangula-
 tion, respondent validation and member checking),
 de Carvalho Leite et al. International Journal for Equity in Health 2011, 10:46
 http://www.equityhealthj.com/content/10/1/46
 Page 14 of 17
increase the likelihood of ensuring that the findings
 represent participants? views [28,29]. Original contribu-
 tions of this study include its overview of felt needs for
 support from health and social services and other social
 support, the identification of major sources of inequities
 in care and the priority policies and strategies suggested
 by people with CFS/ME.
 A study limitation is its reliance on individuals? retro-
 spective reports of experiences, and their fatigue, may,
 perhaps, have affected participants? ability to compre-
 hensively communicate accounts of their needs. Another
 limitation is the lack of opportunity to test suggested
 strategies or solutions to improve such support and to
 decrease the financial plights encountered. However, an
 in-depth examination of best practice [37], and a
 detailed description of the pathways for health and
 social support (article in preparation), are among studies
 recently conducted by the CFS/ME Observatory to
 advance such knowledge. Further studies should explore
 how far these findings have resonance for a representa-
 tive sample of people with CFS/ME and to compare eth-
 nic groups? consultation and help-seeking behaviours
 and their impact on access to appropriate care for CFS/
 ME.
 Conclusions
 People with CFS/ME in this study highlighted the com-
 plexity of their illness, its impact on well being and the
 intensity of their consequent needs to regain control
 over their lives. For health services to respond more
 equitably to these needs, they should provide earlier
 diagnosis, more holistic health-and social care manage-
 ment, and more coordinated, pro-active comprehensive
 support across services and support networks. These are
 vital to maintain social inclusion, secure practical sup-
 port to manage life and to decrease the impact on carers
 and finances. Well-being was seen to depend on needs-
 based, personalised, provision which could acknowledge
 the expertise of people living with CFS/ME. In contrast,
 the experiences reported here consistently highlighted
 damaging cumulative health and social consequences of
 living with a life-disrupting long term condition that has
 been largely dismissed and stigmatised by care profes-
 sionals, services and systems. For many, such conse-
 quences were amplified by socio-economic disadvantage,
 cultural and ethnic factors and lost work and civil sta-
 tus. The barriers to accessing health, social and financial
 support may be overwhelming for people who must
 often fight in isolation for their health and subsistence.
 Study participants? experiences identified health and
 social policies and strategies needed to overcome these
 barriers to equity, by increasing wider understanding of
 high-intensity CFS/ME needs and their management,
 acknowledging the expertise of those living with the
 illness and developing a more inclusive care system.
 Enabling such policies was seen to require better-
 informed, more pro-active attitudes on the part of prac-
 titioners, policy makers and general public towards CFS/
 ME, advocacy, social justice and equitable care through
 investment in research and public and professional
 education.
 A more equitable care system therefore requires more
 coordinated actions between people living with CFS/ME,
 service providers, policy makers and public, private and
 voluntary organizations for people with CFS/ME and for
 human rights. Further research to explore the resonance
 with a larger group of people with CFS/ME, of these
 indicative findings on the importance of social support
 for equity, is now needed.
 In summary, the study has highlighted the damaging
 bio-psychosocial effects of living with CFS/ME within a
 system which has engendered health and social care
 provision which is socially-unsupportive of their specific
 needs. Its findings suggest for health practice and future
 studies that, as Marmot and Friel urge [1], as well as
 acting to understand and manage the illness, creative
 responses to inequity should draw on joint ventures
 with communities of people with CFS/ME, their carers
 and families, health professionals and social policy
 makers. Where individuals are affected by long-term,
 fluctuating conditions with complex needs, as exempli-
 fied in CFS/ME, health professionals should be espe-
 cially prepared to act as advocates for patients in
 negotiations with employers, educational and social wel-
 fare organisations to respond flexibly if more equity in
 health and social inclusion is to be enabled for these
 groups.
 Acknowledgements
 The authors acknowledge the contributions of the CFS/ME Observatory
 Steering Group and Reference Group for critical revisions to the manuscript
 and the following members in particular: Catherine Hislop; Susan Sykes;
 Margaret Norwood; Nina Crummy; Sarah Feehan. Angela Bradley, Sally
 Crowe, for their insightful comments on the manuscript, Mike Stevens for
 technical help with Figure 1, and Joan North for administrative support.
 The authors of this paper work with the Big Lottery Funded ?CFS/ME
 Observatory? (see http://www.actionforme.org.uk/Resources/Action%20for%
 20ME/Documents/get-informed/ME%202008%20%20What%20progress.pdf).
 This study was enabled by the CFS/CFS Observatory, a collaborative research
 initiative between Action for ME and three UK Universities, and funded by
 The Big Lottery Fund (grant No. RG/1/010166702). The Big Lottery Fund was
 not involved in the design, analysis or writing up of this research. The
 sponsors of the CFS/ME Observatory are Action for ME, some members of
 which reviewed the draft. Views and opinions expressed in this paper are
 not necessarily those of the AfME or of other members of the CFS/ME
 Observatory.
 Author details
 1School of Allied Health Professions, University of East Anglia, Norwich,
 England, United Kingdom, NR4 7TJ, UK. 2London School of Hygiene and
 Tropical Medicine, Keppel Street, London, England, United Kingdom, WC1E
 7HT, UK. 3Faculty of Society and Health, Buckinghamshire New University,
 Uxbridge Campus, 106, Oxford Road, Uxbridge, Middlesex, UB8 1NA,
 de Carvalho Leite et al. International Journal for Equity in Health 2011, 10:46
 http://www.equityhealthj.com/content/10/1/46
 Page 15 of 17
England, UK. 4Sports Therapy and Physiotherapy Division, University of
 Bedfordshire, Park Square, Luton, Bedfordshire, LU1 3JU, England, UK.
 5Postgraduate Medical Institute, University of Hull, Daisy Building, Castle Hill
 Hospital, Castle Road, Cottingham, East Yorkshire, HU16 5JQ, England, UK.
 Authors? contributions
 JL, LN, DP conceived the study; JL, LN, MD, MM and FP designed the
 methodology and JL, MD, LN, DP and FP worked to gain ethical clearance
 from London MREC; MD organised the process of recruitment,. JL, MD, CH
 and FP recruited the subjects. MM and JL conducted the focus group and
 JL conducted the one-to-one interviews. JL coordinated the data analysis
 and initial writing up of the article; JL, AK and SK analysed the data; MM, FP,
 AK and SK organised the validation exercises and dissemination events; JL,
 AK, MD, SK and FP wrote the first draft of the article. FP coordinated the
 final writing up of the article.. All authors contributed to the manuscript and
 approved the final version.
 Authors? Information
 School of Allied Health Professions, University of East Anglia, Norwich NR4 7TJ,
 UK
 FP, Senior Lecturer in Health and Society and Joint Principal Investigator for
 the CFS/ME Observatory; AK, Lecturer in Occupational Therapy, CSH, Lecturer
 in Occupational Therapy; SK, Lecturer in Physiotherapy; MdeLD, Reader in
 Health Equity and Social Inclusion and Joint Principal Investigator for the
 CFS/ME Observatory; JL, Senior Research Associate in Social Research; MM,
 MSc Pre-registration OT Programme Director, LO?D, Senior Lecturer in
 Physiotherapy.
 Postgraduate Medical Institute, University of Hull, Daisy Building, Castle Hill
 Hospital, Castle Road, Cottingham, East Yorkshire, HU16 5JQ.
 PC, Emeritus Professor of Primary Care Medicine
 London School of Hygiene and Tropical Medicine, Keppel Street, London WC1E
 7HT, UK.
 LN, Clinical Lecturer; EL, Research Fellow
 Faculty of Society and Health, Buckinghamshire New University, Uxbridge
 Campus, 106, Oxford Road, Uxbridge, Middlesex, UB8 1NA.
 DP, Visiting Professor of Epidemiology
 Competing interests
 The authors declare that they have no competing interests.
 Received: 1 November 2010 Accepted: 2 November 2011
 Published: 2 November 2011
 References
 1. Marmot M, Friel S: Global health equity: evidence for action on the social
 determinants of health. J Epidemiol Community Health 2008, 62:1095-1097.
 2. Jason LA, Richman JA, Radernaker AW, et al: A community-based study of
 chronic fatigue syndrome. Arch Intern Med 1999, 159:2129-2137.
 3. CFS/ME Working Group: Report to the Chief Medical Officer of an
 Independent Working Group London: Dept of Health; 2002, P6, para. 1.4.2.
 4. Action for ME: Severely Neglected. London 2001.
 5. Joyce J, Hotopf M, Wessely S: The prognosis of chronic fatigue and
 chronic fatigue syndrome: a systematic review. Quarterly J of Medicine
 1997, 90(3):223-33.
 6. Pheley AM, Melby D, Schenck C, Mandel J, Peterson PK: Can we predict
 recovery in chronic fatigue syndrome? Minnesota Medicine 1999,
 82(11):52-6.
 7. Hill NF, Tiersky LA, Scavalla VR, Lavietes M, Natelson BH: Natural history of
 severe chronic fatigue syndrome. Archives of Physical Medicine &
 Rehabilitation 1999, 80(9):1090-4.
 8. Pheby D, Saffron L: Risk factors for severe ME/CFS. Biology and Medicine
 2009, 1(4):50-74.
 9. Revicki DA, Osoba D, Fairclough D, Barofsky I, Berzon R, Leidy NK,
 Rothman M: Recommendations on health-related quality of life research
 to support labeling and promotional claims in the United States. Quality
 of Life Research 2000, 9:887-900.
 10. Burckardt CS, Anderson KL: The Quality of Life Scale (QOLS): Reliability,
 Validity, and Utilization. Health Quality of Life Outcomes 2003, 1(1):60.
 11. Drachler M, Leite J, Hooper L, Hong CS, Pheby D, Nacul L, Lacerda E,
 Campion P, Killett A, McArthur M, Poland F: The self-expressed needs of
 people with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: A
 systematic review. BMC Public Health 2010, 9:458.
 12. Ong BN, Evans E, Bartlam A: A patient?s journey with myalgic
 encephalomyelitis. BMJ 2005, 330:648-650.
 13. Taillefer SS, Kirmayer LJ, Robbins JM, Lasry J-C: Psychological correlates of
 functional status in chronic fatigue syndrome. J of Psychosomatic Research
 2002, 53:1097-1106.
 14. Gray ML, Fossey EM: Illness experience and occupations of people with
 chronic fatigue syndrome. Austral Occup Ther J 2003, 50:127-136.
 15. Fukuda K, Strauss SE, Hickie I, Sharpe MC, et al: The Chronic Fatigue
 Syndrome: a comprehensive approach to its definition and study. Ann
 Intern Med 1994, 121(12):953-959.
 16. Darbishire L, Ridsdale L, Seed PT: Distinguishing patients with chronic
 fatigue from those with chronic fatigue syndrome: a diagnostic study in
 UK primary care. Brit J of Gen Pract 2003, 53:44-45.
 17. Fitzgibbon EJ, Murphy D, O?Shea K, Kelleher C: Chronic debilitating fatigue
 in Irish general practice: a survey of general practitioners? experience.
 British J of General Practice 1997, 47(423):618-622.
 18. Denz-Penhey H, Murdoch JC: General practitioners acceptance of the
 validity of chronic fatigue syndrome as a diagnosis. New Zealand Medical
 J 1993, 106(953):122-124.
 19. Prins JB, Bleijenberg G, Rouweler EK, et al: Doctor-patient relationship in
 primary care of chronic fatigue syndrome: perspectives of the doctor
 and the patient. J of Chronic Fatigue Syndrome 1997, 7(4):3-15.
 20. Thomas MA, Smith AP: Primary healthcare provision and chronic fatigue
 syndrome: a survey of patient?s and general practitioners? beliefs. BMC
 Family Practice 2005, 6:49.
 21. Wu HS: Unexplained prolonged fatigue in primary care. J of Chronic
 Fatigue Syndrome 2006, 13:115-34.
 22. Raine R, Carter S, Sensky T, Black N: General practitioners? perceptions of
 chronic fatigue syndrome and beliefs about its management, compared
 with irritable bowel syndrome: qualitative study. BMJ 2004,
 328:1354-1357.
 23. Alliance ME: ME Diagnosis: delay harms health ME Alliance; 2005.
 24. Bowen J, Pheby D, Charlett A, McNulty C: Chronic Fatigue Syndrome: a
 survey of GPs? attitudes and knowledge. BMC Fam Prac 2005, 22:389-393.
 25. Lehman AM, Lehman DR, Hemphill KJ, Mandel DR, Cooper LM: Illness
 experience, depression, and anxiety in chronic fatigue syndrome. J of
 Psychos Res 2002, 52:461-465.
 26. Stein E: Chronic fatigue syndrome: overcoming the attitudinal impasse. J
 of Chron Fatig Syndr 2001, 8(3/4):53-61.
 27. Brace MJ, Smith M, McCauley E, et al: Family reinforcement of illness
 behaviour: a comparison of adolescents with chron ic fatigue syndrome,
 juvenile arthritis, and healthy controls. J Dev Behav Pediatr 2000,
 21(5):332-339.
 28. NICE CG 53: Chronic fatigue syndrome/myalgic encephalomyelitis (or
 encephalopathy) guideline 2007 [http://sacfs.Asn.Au/download/
 CG53NICEGuideline.pdf], (Accessed Sep 21, 2007).
 29. Thanawal S, Taylor R: Service utilisation, barriers to service access, and
 coping in adults with chronic fatigue syndrome. J of Chron Fatig Syndr
 2007, 141:5-21.
 30. Anonymous: Negotiating the maze of disability insurance: one patient?s
 perspective. J of Chron Fatig Syndr 1997, 3(4):99-109.
 31. Song S, Jason LA, Taylor RR: The relationship between ethnicity and
 fatigue in a community based sample. J of Gender, Culture and Health
 1999, 4(4):255-268.
 32. Clarke JN: Chronic fatigue syndrome: gender differences in the search
 for legitimacy. Australian and New Zealand J of Ment Health Nurs 1999,
 8:123-133.
 33. Luthra A, Wessely S: Unloading the trunk: neurasthenia, CFS and race. Soc
 Sci & Med 2004, 58:2363-2369.
 34. Buchwald D, Manson SM, Pearlman T, Umali J, Kith P: Race and ethnicity in
 patients with chronic fatigue. J of Chron Fatig Syndr 1996, 2(1):53-66.
 35. Brimacombe M, Helmer D, Natelson BH: Clinical differences exist between
 patients fulfilling the 1988 and 1994 case definitions of chronic fatigue
 syndrome. J of Clin Psych in Medical Settings 2002, , 9: 309-314.
 36. Patton MQ: Qualitative evaluation and research methods London: Sage; 1990.
 37. Braun V, Clarke V: Using thematic analysis in psychology. Qual Res in
 Psychol 2006, , 3: 77-101.
 38. Miles MB, Huberman AM: Qualitative data analysis: an expanded sourcebook
 London: Sage; 1994.
 de Carvalho Leite et al. International Journal for Equity in Health 2011, 10:46
 http://www.equityhealthj.com/content/10/1/46
 Page 16 of 17
39. Henwood KL, Pidgeon NF: Qualitative research and psychological
 theorizing. Br J Psycho 1992, 83(Pt.1):97-111.
 40. Anderson J, Estwing C: The quality of life of persons with chronic fatigue
 syndrome. J of Nervous & Mental Disease 1997, 185(6):359-367.
 41. Thomas MA, Smith AP: Primary healthcare provision and Chronic Fatigue
 Syndrome: a survey of patients? and General Practitioners? beliefs. BMC
 Family Practice 2005, 49:1-6.
 42. Horton S, Poland F, Kale S, Drachler M, Leite J, McArthur M, Campion P,
 Pheby D, Nacul L: Chronic Fatigue Syndrome/Myalgic Encephalomyelitis
 (CFS/ME) in adults: perspectives from professional practice. BMC Family
 Practice 2010, 11:89[http://www.biomedcentral.com/1471-2296/11/89].
 43. Chew-Graham CA, Cahill G, Dowrick C, Wearden A, Peters S: Using Multiple
 sources of knowledge to reach clinical understanding of chronic fatigue
 syndrome. Annals of Family Med 2008, 6(4):340-348.
 44. Asbring P, Narvanen : Ideal versus reality: physicians? perspectives on
 patients with chronic fatigue syndrome (CFS) and fibromyalgia. Soc Sci
 Med 2003, 57(4):711-720.
 45. Steven ID, McGrath B, Quereshi F, et al: General practitioners? beliefs,
 attitudes and reported actions towards chronic fatigue syndrome. Aust
 Fam Physician 2000, 29(1):80-5.
 46. Ogden J: Stress and Illness. Health Psychology Maidenhead: Open
 University Press; 2004.
 47. Symister P, Friend R: The influence of social support and problematic
 support on optimism and depression in chronic illness: A prospective
 study evaluating self-esteem as a mediator. Health Psychology 2003,
 22(2):123-129.
 48. Larun L, Malterud K: Finding the right balance of physical activity: A
 focus group study about experiences among patients with chronic
 fatigue syndrome. Patient Ed & Counselling 2011, 83(2):222-226.
 49. Jason LA, et al: A community-based study of chronic fatigue syndrome.
 Arch Intern Med 1999, 159(18):2129-37.
 50. Njoku MG, Jason LA, Torres-Harding SR: The prevalence of chronic fatigue
 syndrome in Nigeria. J Health Psychol 2007, 12(3):461-74.
 51. Szczepura A: Access to healthcare for ethnic minority populations.
 Postgrad Med J 2005, 81:141-147.
 52. Nacul L, Lacerda EM, Pheby D, Campion PD, Molokhia M, Fayyaz S, Leite JC,
 Poland F, Howe A, Drachler ML: Prevalence of myalgic encephalomyelitis/
 chronic fatigue syndrome (ME/CFS) in three regions of England: a
 repeated cross-sectional study in primary care. BMC Medicine 2011, 9:91.
 53. Haines LC, Saidi G, Cooke RW: Prevalence of severe fatigue in primary
 care. Arch Dis Child 2005, 90(4):367-8.
 54. Ho-Yen DO, McNamara I: General practitioners?experience of chronic
 fatigue syndrome. Br J Gen Pract 1991, 41(349):342-6.
 55. Deale A, Wessely S: Patients? perceptions of medical care in chronic
 fatigue syndrome. Soc Sci & Med 2001, 52:1859-1864.
 56. Carruthers BM, Jain AK, De Meirleir K, Peterson P, Klimas N, Lerner AM,
 Bested AC, Flor-Henry P, Joshi P, Powles Sherkey J, van de Sande M:
 Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working
 Case Definition, Diagnostic and Treatment Protocols. J of Chron Fatig
 Syndr 2003, 11(1)[http://www.cfids-cab.org/MESA/ccpccd.pdf].
 57. Department of Work and Pensions: The end of Incapacity Benefit for new
 claimants and the start of employment support 2008 [http://webarchive.
 nationalarchives.gov.uk/+/http://www.dwp.gov.uk/mediacentre/
 pressreleases/2008/oct/hse108-271008.Asp/], (Accessed Oct 27, 2008).
 58. Elliot H: Use of formal and informal care among people with prolonged
 fatigue: a review of the literature. Br J Gen Prac 1999, 49(439):131-4.
 59. Ax S: Coping differences between chronic fatigue syndrome sufferers
 and their carers. J of Chron Fatig Syndr 1999, 5(2):27-62.
 60. Woodward RV, Broom DH, Legge DG: Diagnosis in chronic illness;
 disabling or enabling - the case of chronic fatigue syndrome. J R Soc
 Med 1995, 88(6):325-9.
 61. Raphael D: Social Determinants of Health: Canadian perspectives.
 Toronto, CSPI; 2004.
 62. ILO, UNESCO, WHO: CBR: A Strategy for Rehabilitation, Equalization of
 Opportunities, Poverty Reduction and Social Inclusion of People with
 Disabilities (Joint Position Paper 2004) 2004.
 doi:10.1186/1475-9276-10-46
 Cite this article as: de Carvalho Leite et al.: Social support needs for
 equity in health and social care: a thematic analysis of experiences of
 people with chronic fatigue syndrome/myalgic encephalomyelitis.
 International Journal for Equity in Health 2011 10:46.
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