Quest, chaos and restitution: living with chronic fatigue syndrome/myalgic encephalomyelitis

Chronic illness is disruptive, threatening people's sense of identity and taken for granted assumptions. Transformations in values, expectations and life priorities are likely to be experienced and in order to regain a coherent sense of self, people must interpret their experiences. People with difficult to diagnose illnesses can find themselves living with greater uncertainty and stigma. This paper explores how people with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) describe and interpret their illness experience by applying Arthur Frank's narrative typologies to analyse interviews with 17 British people with CFS/ME. The analysis proposes that a trajectory of narrative typologies is experienced, starting with a restitution narrative, moving to a chaos narrative and, for most, back to a restitution narrative and on to a quest narrative. The presentation of narrative types put forward by people living with CFS/ME differ to those presented by people who are HIV positive and have been treated for breast cancer.     

The financial and psychological impacts on mothers of children with chronic fatigue syndrome (CFS/ME)

Background Paediatric chronic fatigue syndrome or myalgic encephalopathy (CFS/ME) is relatively common and children can be severely affected attending little or no school for extended periods. There are no studies quantifying the financial impact of having a child with CFS/ME and there is little information of the impact on parental mood. Methods Forty mothers of children with CFS/ME from a regional specialist CFS/ME service completed inventories to assess their psychological well‐being (Hospital Anxiety and Depression Scale, General Health Questionnaire‐12) loss of earnings and increased expenditure. In addition, eight mothers took part in a semi‐structured qualitative interview. Results Most parents of children with CFS/ME experience loss of monthly income (mean =£247) and increase in monthly expenditure (mean =£206). Twenty‐eight (72%) mothers were above the cut‐off for the General Health Questionnaire‐12 compared with 20% in the healthy population (95% CI 55, 85, P < 0.001) suggesting they probably have a mental health problem. This may be explained by the qualitative interviews where mothers described five areas contributing to poor parental health: lack of understanding from others; marital tension; concern about their child's distress; concern about the impact on siblings and emotional distress causing physical symptoms. Conclusions The majority of families of children with CFS/ME experience decreased income and increased expenditure with a marked impact on maternal psychological health. Clinicians need to be aware of this to provide appropriate support to families who care for children with CFS/ME.     

Disorder and disconnection: parent experiences of liminality when caring for their dying child

Parents caring for a child with a life threatening or life limiting illness experience a protracted and largely unknown journey, as they and their child oscillate somewhere between life and death. Using an interpretive qualitative approach, interviews were conducted with parents (n = 25) of children who had died. Findings reveal parents’ experiences to be characterised by personal disorder and transformation as well as social marginalisation and disconnection. As such they confirm the validity of understanding these experiences as, fundamentally, one of liminality, in terms of both individual and collective response. In dissecting two inter‐related dimensions of liminality, an underlying tension between how transition is subjectively experienced and how it is socially regulated is exposed. In particular, a structural failure to recognise the chronic nature of felt liminality can impede parents’ effective transition.     

Migrants and HIV stigma: findings from the Stigma Index Study (UK)

This paper is based on data collected in 2009 for the international Stigma Index Study which measured the experiences of stigma among participants living with HIV in the UK. Data were collected using a self‐completed survey questionnaire and focus group discussions. Quantitative data were analysed using SPSS, while qualitative data were subjected to thematic analysis. The Stigma Index attempts to establish a baseline for documenting the experience of stigma and discrimination by people living with HIV while also acting as an advocacy tool whose power lay in the involvement of people living with HIV in the design of study instruments and data collection. Participants were recruited through collaborations with a broad range of UK HIV support organisations. The ethics protocols used were those described in the Stigma Index guidebook. A total of 867 people living with HIV took part, of whom 276 described themselves as ‘immigrants’. Most of this ‘migrant’ subsample (70%) was women. Nearly, all (91%) identified as heterosexual, while 9% were attracted to someone of the same sex as them. Socioeconomic deprivation was a key theme and they reported other stigmatised chronic conditions in addition to HIV. It is not possible to ascertain from the questionnaire, the migrants’ countries of origin and length of stay in the UK. Control of information about HIV was critically managed, with respect to family and partners. Felt stigma increased anxieties about personal safety, particularly among men. Strategies for safeguarding against the negative impact of stigma included avoiding social gatherings, intimacy, and clinical and HIV social care settings. Most participants were unaware of policies and declarations that protected them as persons living with HIV. Specific recommendations include creating awareness about rights as enshrined in various legal frameworks that protect the right of people living with HIV, which has been reconfigured as a ‘disability’.     

Social support needs for equity in health and social care: a thematic analysis of experiences of people with chronic fatigue syndrome/myalgic encephalomyelitis

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.     

‘I became more aware of my actions’—A qualitative longitudinal study of a health psychological group intervention for patients with myalgic encephalomyelitis/chronic fatigue syndrome

Objectives

To explore myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) patients' experiences of a health psychological group intervention and its usefulness, non-usefulness or harmfulness for illness management and adjustment.

Design

A qualitative longitudinal study using inductive content analysis.

Methods

Semistructured interviews were conducted with 10 adults. Interviews were conducted before the 16-week intervention, immediately after its completion, and at 3 months after completion.

Results

Participants reported that the intervention was useful and not harmful. The model improved their ability to cope with ME/CFS by providing them with useful information about the illness along with peer support and professional guidance. Participants reported improved illness management and adjustment, which they perceived as an outcome of achieving new ways of thinking, feeling and acting.

Conclusions

Participants viewed the health psychological approach to group intervention as meeting their needs. To achieve better illness management and adjustment, more consideration should be given to supportive interactional processes with peers and healthcare professionals.

Patient or Public Contribution

The intervention was developed to meet patients' needs of finding ways to manage their illness. The research team consulted eight patients with ME/CFS and three clinical centres working with ME/CFS treatment and rehabilitation at the intervention planning stage. Their comments influenced the planning and content of the intervention as well as ethical issues that should be considered, such as potential harm to participants. All participants were informed about the theoretical foundations of the study and the principles guiding the intervention. Participants were not involved in the data analysis.

Clinical Trial Registration

NCT04151693     

Myalgic Encephalomyelitis and the medical encounter1

In the history of twentieth century western medicine several ‘syndromes’ have been denied the legitimate status of ‘organic disease’. Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) are examples of such syndromes, in that their status within biomedicine as ‘real, organic’ diseases is still a matter of controversy. These ‘non-diseases’ or ‘illegitimate illnesses’ are usually defined in terms of symptoms, with few consistent signs, and scientists and doctors have failed to agree on aetiology and pathogenesis. There are no obvious visible abnormalities present in sufferers, and ME cannot be diagnosed by standard medical tests. This paper explores the consequences of uncertainty and controversy for those who suffer from ME. It is based primarily on a series of ten life history interviews with sufferers of ME. These accounts of illness careers focus on the difficulties in obtaining a correct diagnosis and achieving legitimate sick role status, and on problems of miscommunication, dismissal and disbelief. As are sult, respondents changed their attitudes towards either particular doctors, or the medical profession. These altered perceptions are discussed in the context of the emergence of critical lay perspectives, and a growing public ambivalence towards biomedicine.     

Contrasting case definitions for chronic fatigue syndrome, Myalgic Encephalomyelitis/chronic fatigue syndrome and myalgic encephalomyelitis

This article uses data from patients recruited using the 1994 case definition of chronic fatigue syndrome (CFS) to contrast those meeting criteria for the Myalgic Encephalomyelitis/chronic fatigue syndrome (ME/CFS) Canadian case definition with those that did not meet these criteria. The study also contrasts those meeting criteria for Myalgic Encephalomyelitis (ME) based on criteria from Ramsay and other theorists with those that did not meet the ME criteria. The ME/CFS case definition criteria identified a subset of patients with more functional impairments and physical, mental, and cognitive problems than the subset not meeting these criteria. The ME subset had more functional impairments, and more severe physical and cognitive symptoms than the subset not meeting ME criteria. When applied to a population meeting the 1994 CFS case definition, both ME/CFS and ME criteria appear to select a more severe subset of patients.     

A systematic review describing the prognosis of chronic fatigue syndrome

AIM: To perform a systematic review of studies describing the prognosis of chronic fatigue (CF) and chronic fatigue syndrome (CFS) and to identify occupational outcomes from such studies. METHOD: A literature search was used to identify all studies describing the clinical follow-up of patients following a diagnosis of CF or CFS. The prognosis is described in terms of the proportion of individuals improved during the period of follow-up. Return to work, other medical illnesses and death as outcomes are also considered, as are variables which may influence prognosis. RESULTS: Twenty-eight articles met the inclusion criteria and, for the 14 studies of subjects meeting operational criteria for CFS, the median full recovery rate was 5% (range 0-31%) and the median proportion of patients who improved during follow-up was 39.5% (range 8-63%). Less fatigue severity at baseline, a sense of control over symptoms and not attributing illness to a physical cause were all associated with a good outcome. Return to work at follow-up ranged from 8 to 30% in the three studies that considered this outcome. CONCLUSIONS: Full recovery from untreated CFS is rare. The prognosis for an improvement in symptoms is less gloomy. This review looks at the course of CF/CFS without systematic intervention. However, there is increasing evidence for the effectiveness of cognitive behavioural and graded exercise therapies. Medical retirement should be postponed until a trial of such treatment has been given.     

The prognosis of different fatigue diagnostic labels: a longitudinal survey

BACKGROUND: Several different diagnostic labels exist for the fatigue syndromes, including chronic fatigue syndrome (CFS), myalgic encephalomyelitis (ME) and postviral fatigue syndrome (PVFS). An allied condition is fibromyalgia. No study has examined prognostic differences across these different labels. OBJECTIVE: To compare the prognoses of patients labelled with different fatigue syndromes in primary care. METHODS: We performed a longitudinal survey, using electronic records from the General Practice Research Database. All 18,122 patients diagnosed by their GP with a fatigue syndrome from 1988-2001 with a minimum of one year of records after diagnosis were collated into four groups: CFS, ME, PVFS and fibromyalgia. CFS and ME were combined for the main analysis as no code for CFS was available until 1995. The length of illness was calculated as the interval between the diagnosis and the last recorded fatigue symptom, expressed as days per year, to account for differing lengths of record after diagnosis. RESULTS: Patients with CFS/ME combined had a worse prognosis (median length of illness 80 days per year; interquartile range 0-242) than fibromyalgia (51; 0-244) or PVFS 0 (0-108), a significant difference, P < 0.001. In a subgroup analysis, ME had a worse prognosis (median length of illness in days per year 106; interquartile range 0-259) than CFS (33; 0-170), P < 0.001, in spite of a better course before diagnosis. Secondary outcome measures were consistent with these results. CONCLUSION: There were important differences in outcome between the various fatigue labels, with ME having the worst prognosis and PVFS the best. This could be an adverse effect of the label ME itself. Alternatively, patients who are destined to have a worse prognosis may preferentially attract the ME label. Our data support the first interpretation.     

‘Your whole life is lived through your teeth’: biographical disruption and experiences of tooth loss and replacement

The experience and meaning of tooth loss and replacement has varied historically and culturally but has received relatively little attention from social scientists. Our study set out to understand these experiences in the context of the arrival of newer, dental implant treatments. Semi‐structured qualitative interviews were carried out with 39 men and women who had experienced tooth loss and replacement. A thematic analysis was sensitised by previous sociological work on chronic illness, particularly Bury's notion of biographical disruption. We found that while for some individuals the loss of a tooth was relatively insignificant, for others it was devastating and disruptive. In seeking to understand this difference, the concept of biographical disruption was a helpful analytical tool. Our analysis identified two forms of disruption. The first related to the meanings of tooth loss (the neglected mouth) and denture wearing (a marker of old age). The second, embodied, disruption concerned the relationship between the self and mouth in those wearing dentures (the invaded, unreliable mouth) and could occur even where tooth loss and denture wearing had been biographically anticipated.     

Neither ‘foolish’ nor ‘finished’: identity control among older adults with HIV in rural Malawi

Prevalence of HIV after age 50 is considerable, especially in southern Africa. Negative social constructions of HIV in older age, and the health consequences of ageing with the virus, mean that having HIV presents a challenge for many people's roles and social memberships, threatening to disrupt their sense of self. Using constructivist grounded theory and qualitative data from rural Malawi, this paper describes how older men and women deal with these identity challenges. Drawing on a symbolic interactionist framework, it uses identity control theory to explore how the study's participants presented their post‐diagnosis behaviours in ways that maintained their most significant pre‐diagnosis identities as ‘adults’, a label they gave to the core identity of being a person who belongs in the social world. Considering the processes through which older people with HIV navigated challenges to their identities in light of the intersectional influences of HIV and age‐related stigma and illness, provides insight into how older people might experience HIV, as well as informing theoretical understandings of identity formation and maintenance in light of chronic and/or stigmatising illness more broadly.     

Severity Scales for Use in Primary Health Care to Assess Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is a physical and cognitive disabling illness, characterized by severe fatigue and a range of physiological symptoms, that primarily affects women. The immense variation in clinical presentation suggests differences in severity based on symptomology and physical and cognitive functional capacities. In this article, we examine a number of severity scales used in assessing severity of patients with CFS/ME and the clinical aspects of CFS/ME severity subgroups. The use of severity scales may be important in CFS/ME because it permits the establishment of subgroups that may improve accuracy in both clinical and research settings.     

A definition of recovery in myalgic encephalomyelitis and chronic fatigue syndrome should be based upon objective measures

Introduction

Adamowicz and colleagues recently proposed to use “a consistent definition of recovery that captures a broad-based return to health with assessments of both fatigue and function as well as the patients’ perceptions of his/her recovery status” for patients with chronic fatigue syndrome (CFS).

Methods

A qualitative analysis of case definitions for Myalgic encephalomyelitis (ME) and CFS and methods to assess the symptoms and clinical status of ME and CFS patients objectively.

Results

The criteria of CFS define a heterogeneous disorder. ME, often used interchangeably with CFS, is principally defined by muscle weakness, cognitive impairment etc., but above all post-exertional “malaise”: a long-lasting increase in symptoms, e.g. muscle pain and cognitive deficits, after a minor exertion. The principle symptom of CFS however is “chronic fatigue”. Since post-exertional “malaise” is not obligatory for CFS, only part of the CFS patients meet the diagnostic criteria for ME, while not all ME patients qualify as CFS patients. There are several accepted methods to assess characteristic symptoms and the clinical status of ME and CFS patients using objective measures, e.g. (repeated) cardiopulmonary exercise tests.

Conclusion

To resolve the debate about the clinical status, proposed effectiveness of therapies and recovery in ME and CFS, it is crucial to accurately diagnose patients using well-defined criteria for ME and CFS and an objective assessment of various typical symptoms, since subjective measures such as “fatigue” will perpetuate the debate.     

Disruptive illness contexts and liminality in the accounts of young people with type 1 diabetes

We utilise Bury's (1982) biographical disruption to examine young people's experiences of type 1 diabetes. Our findings show that young adults adopted various ‘subject positions’ across different illness contexts. The subject positions deployed are intended to produce a particular kind of normal embodied identity unaffected by diabetes. First, participants concealed their illness in public spaces and challenged cultural stereotypes of diabetes to maintain a normal illness biography. Disruption was ever present and required careful negotiation to avoid exposure of illness in public. Young adults upheld a ‘normal public presentation’. Second, they resisted the medical system's pressure to adhere to glucose targets asserting and maintaining a subject position of ‘independent and autonomous young adults’. Here, disruption was transient and temporary, present in the clinic but not always beyond. It remained in the background for much of the time until it was reinforced by parents or at meal times. Third, young adults acquired a ‘pragmatic subject position’ with diabetes viewed as complex but manageable, no longer a target for resistance. Frank's (1995) ‘narrative restitution’ is adopted to describe the transition to life with ‘normal’ illness. We argue that illness experience was ‘liminal’ and reflected the subject positions adopted by young adults.     

Variability in diagnostic criteria for chronic fatigue syndrome may result in substantial differences in patterns of symptoms and disability

Chronic fatigue syndrome (CFS) is an illness that involves severe, prolonged exhaustion as well as neurologic, immunologic, and endocrine system pathology. Because the pathogenesis of CFS has yet to be determined, case definitions have relied on clinical observation in classifying signs and symptoms for diagnosis. The current investigation examined differences between CFS as defined by Fukuda and colleagues and a set of criteria that has been stipulated for myalgic encephalomyelitis (ME). Dependent measures included psychiatric comorbidity, symptom frequency, symptom severity, and functional impairment. The ME and Fukuda et al. (1994) CFS criteria were compared with a group having chronic fatigue due to psychiatric reasons. Significant differences occurred primarily with neurologic, neuropsychiatric, fatigue/weakness, and rheumatological symptoms. These findings suggest that it might be inappropriate to synthesize results from studies of this illness that use different definitions to select study populations.