Chronic Fatigue Syndrome Experience Research Articles

Living with Chronic Fatigue Syndrome during lockdown and a global pandemic

ABSTRACT Objective : Chronic Fatigue Syndrome, a condition characterised by extreme fatigue that is not explained by other medical conditions, places individuals at greater risk of COVID-19. The condition is also associated with a lack of social support and social isolation. These individuals may, therefore, have a unique experience of lockdown and the pandemic. The present study investigates the experiences of those with Chronic Fatigue Syndrome during the COVID-19 pandemic. Design : In the present study, we identified fifty online forum (Reddit) posts, discussing the personal lived experience of Chronic Fatigue Syndrome during lockdown and the global pandemic. These posts were subject to inductive thematic analysis. Results : Four themes were extracted from the data. These were (i) Symptom Change, (ii) Social Interactions, (iii) Comparing Experiences, and (iv) Positive Consequences. Themes highlighted both positive and negative experiences of the COVID-19 pandemic. For example, whilst some people reported more severe symptoms, lockdown also provided more accessible opportunities to interact (i.e. online videocalls). Conclusion : Chronic Fatigue Syndrome influenced physical, psychological, and social experiences, with both positive and negative outcomes of the lockdown and pandemic apparent. Findings have the potential to support those with Chronic Fatigue Syndrome and those who experience post-COVID-19 fatigue.

Similarities and differences between health-related quality of life in patients with exhaustion syndrome and chronic fatigue syndrome

ABSTRACT Background: Patients with exhaustion syndrome (ES), the clinical equivalent of long-lasting burnout, and chronic fatigue syndrome (CFS) report overlapping symptoms such as exhaustion, fatigue, cognitive deficits and intolerance to stressors. Additionally, patients with CFS experience somatic symptoms, including bodily pain, immune symptoms, and post-exertional malaise. Clinically, patients with CFS often have reduced functioning as compared to ES, but studies comparing quality of life have not been reported. Purpose: To compare quality of life between patients with ES (n = 31), CFS (n = 38) and healthy controls (HC) (n = 30) by using the Short Form 36 questionnaire (SF-36) and the Hospital Anxiety and Depression Scale (HADS). Results: Patients with CFS scored lower in all quality of life dimensions on the SF-36 as compared to the ES and HC groups, except for the role emotional and mental health subscales. Patients with ES scored lower on the subscales of physical role, vitality, social functioning and role emotional as compared to HC. Physical Component Summary scores were lower in CFS, while the Mental Component Summary scores were lower in ES as compared to CFS and HC. Higher scores for depression symptoms on the HADS and group membership explained the major part of variance. Conclusion: Findings indicated both similarities and differences on the SF-36 in patients with ES as compared to CFS. Both groups showed a substantial reduction in quality of life as compared to controls. Perhaps surprisingly, mental health was less affected in patients with CFS. Emotional status appears to be important in affecting health-related quality of life in both illnesses.

Chronic fatigue syndrome and quality of life.

Chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME), is a challenging long-term condition (LTC) with complex and fluctuating symptoms. It is heterogeneous in presentation without diagnostic indicators; therefore, in health care encounters, insight must be gained from the patient’s perspective. One indicator of impact can be gained by measuring quality of life (QoL). By applying a patient-reported outcome measure (PROM), professionals can gather insights with direct relevance to the patient questioned. Such a tool can act therapeutically tool to promote holistic and individualized professional interventions and interval measurement can inform commissioning of specialist services. Standard practice appears not fully to capture the experience of CFS, while a search of the literature turned up QoL patient-reported outcome tools, but failed to reveal a CFS/ME-specific measure. The author explores a valid and reliable PROM that can monitor change and evaluate the UK National Institute of Clinical Excellence rehabilitation program, as delivered by specialist National Health Service units. An alternative, the World Health Organization’s quality-of life instrument (WHOQoL)-Bref26, is reviewed for relevance to the condition, measuring treatment outcomes and the wider debate of measuring QoL in LTCs.

A reexamination of the cognitive behavioral model of chronic fatigue syndrome.

The cognitive behavioral model of chronic fatigue syndrome (CFS) suggests that cognitions and reduced activity level perpetuate the fatigue and impairment that individuals with CFS experience. The two empirical evaluations of this model resulted in conflicting findings. The current study examines the influence of case definition fulfillment on the applicability of this model to CFS. A moderated mediation analysis was conducted on 990 individuals with CFS to reexamine the behavioral pathway of this model. Case definition fulfillment was entered as a moderator. Findings were generally inconsistent with the cognitive behavioral model of CFS. Case definition fulfillment significantly moderated the relation between activity level and physical impairment (β=-0.08, p=0.03); individuals who met more stringent case definitions demonstrated a weaker relation between activity level and impairment. This model may not accurately represent the experience of individuals with CFS, particularly those who fulfill more stringent case definitions.

Differences in ME and CFS Symptomology in Patients with Normal and Abnormal Exercise Test Results.

Post-exertional malaise (PEM) is a cardinal symptom of myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS), which often distinguishes patients with this illness from healthy controls or individuals with exclusionary illnesses such as depression. However, occurrence rates for PEM fluctuate from subject to how the symptom is operationalized. One commonly utilized method is exercise testing, maximal or submaximal. Many patients with ME and CFS experience PEM after participating in these tests, and often show abnormal results. However, some patients still exhibit normal results after participating in the exercise testing. This study examined the differences between two patient groups with ME and CFS, those with normal results and those with abnormal results, on several PEM-related symptoms and illness characteristics. The results suggest those that displayed abnormal results following testing have more frequent and severe PEM, worse overall functioning, and are more likely to be bedbound than those that displayed normal results.

Sleep Disturbances in Pediatric Chronic Fatigue Syndrome: A Review of Current Research.

Children and adolescents with chronic fatigue syndrome (CFS) frequently report sleep disturbances. However, little is known about the nature and severity of sleep disturbance and factors associated with sleep problems in pediatric CFS. The purpose of this review was to synthesize and critically appraise existing literature relating to sleep disturbances in pediatric CFS. Embase, CINAHL, PsychINFO, PubMed. and Medline databases were searched to retrieve all studies that included an assessment of sleep in pediatric CFS. Two reviewers independently assessed eligibility, extracted data, and systematically assessed reporting quality. Six studies were included and these were mostly case-controlled designs. Findings varied across studies; however, most studies found that children and adolescents with CFS had significantly more sleep disturbances when compared to healthy controls. Significant methodological variations and limitations were apparent. This review suggests that children and adolescents with CFS experience sleep disturbances. However, results need to be interpreted cautiously given the limited evidence available and its overall low quality. More research is required to elucidate the nature and extent of sleep disturbance in pediatric CFS and should focus on (1) identifying the specific types, causes, and severity of sleep disturbances; (2) the specific consequences of sleep disturbances; and (3) the most effective interventions for sleep problems in this population.

Paediatric chronic fatigue syndrome: Complex presentations and protracted time to diagnosis

The diagnosis and management of paediatric chronic fatigue syndrome (CFS) remain ongoing challenges for paediatric clinicians, particularly given its unknown aetiology and the little research on effective treatments for this condition. The aim of this study was to describe the presenting features of new patients attending a specialist chronic fatigue clinic at a tertiary-level Australian children's hospital. The medical records of all patients with an initial consultation at the chronic fatigue clinic over a 12-month period were reviewed using a standardised data collection template. Functional impact was based on school attendance and classified according to the National Institute of Health and Clinical Excellence guidelines (2007). A total of 99 patients attending the clinic were identified. Of these, 59 were diagnosed with CFS. Median age was 15.4 years with almost two-thirds of patients of female sex. Median time between symptom onset and diagnosis was 15.5 months. There was a high occurrence of fatigue, sleep disturbance, pain, postexertional malaise, and autonomic and cognitive symptoms in the group. The functional impact of CFS was classified as mild for 20%, moderate for 66% and severe for 14% of patients. Most young people diagnosed with CFS experience symptoms for a protracted period, with considerable functional impact prior to initial tertiary service consultation. This audit has identified important areas for research, practice development and education in relation to the management of patients with CFS.

The End of Theological Education: An Analysis of the Contribution of Portfolio Learning to Formation in Ministry within a University Context

This article reflects upon five pieces of student work submitted for examination within the pastoral portfolio of the BTh degree of Cambridge University. The purpose of presenting and reflecting upon this work is to stimulate conversation about the use of portfolio in theological education and ministerial formation. The students' work arises from church contexts, placements in prison and in hospital, and from their own lives. They variously discuss the role of prophecy in church leadership; the interpretation of pastoral conversations; the role of prison visitors; the experience of chronic fatigue syndrome and pastoral responses to begging on the streets. The analysis of their work raises questions about the aims of theological education; the formational processes and the learning and assessment activities which are intended to meet those aims; the processes by which theological education is evaluated, and, in the current higher education climate in the UK, the possibilities and dangers for theological education of becoming separated from the academy.

A systematic review of chronic fatigue, its syndromes and ethnicity: prevalence, severity, co-morbidity and coping

Chronic Fatigue Syndrome (CFS) is characterized by unexplained fatigue that lasts for at least 6 months alongside a constellation of other symptoms. CFS was historically thought to be most common among White women of higher socio-economic status. However, some recent studies in the USA suggest that the prevalence is actually higher in some minority ethnic groups. If there are convincing differences in prevalence and risk factors across all or some ethnic groups, investigating the causes of these can help unravel the pathophysiology of CFS. A systematic review was conducted to explore the relationship between fatigue, chronic fatigue (CF--fatigue lasting for 6 months), CFS and ethnicity. Studies were population-based and health service-based. Meta-analysis was also conducted to examine the population prevalence of CF and CFS across ethnic groups. Meta-analysis showed that compared with the White American majority, African Americans and Native Americans have a higher risk of CFS [Odds Ratio (OR) 2.95, 95% confidence interval (CI): 0.69-10.4; OR = 11.5, CI: 1.1-56.4, respectively] and CF (OR = 1.56, CI: 1.03-2.24; OR = 3.28, CI: 1.63-5.88, respectively). Minority ethnic groups with CF and CFS experience more severe symptoms and may be more likely to use religion, denial and behavioural disengagement to cope with their condition compared with the White majority. Although available studies and data are limited, it does appear that some ethnic minority groups are more likely to suffer from CF and CFS compared with White people. Ethnic minority status alone is insufficient to explain ethnic variation of prevalence. Psychosocial risk factors found in high-risk groups and ethnicity warrant further investigation to improve our understanding of aetiology and the management of this complex condition.

Self within a climate of contention: Experiences of chronic fatigue syndrome

Chronic fatigue syndrome (CFS) is a contested condition associated with scepticism and dispute. This qualitative project examines the illness experiences, and specifically the experiences of self, for people affected with CFS living in Australia. Using grounded theory methods, theory related to the process of self-renewal and adaptation associated with CFS is explicated. Narratives were derived from semi-structured interviews with 19 adults, including 3 people recovered from CFS. Analysis generated the narrative of the struggling self seeking renewal that defined the illness experience of CFS. The struggling self articulated the negative effects to self and personhood associated with CFS, defined as the violation of self, and the consequent efforts of participants to manage symptoms and decrease their violation by use of what was termed the Guardian Response and the Reconstructing Response. The Guardian Response provided protection and self-reclamation. The Reconstructing Response fostered self-renewal and meaning. The struggling self occurred within a climate of threats, and it was these threats which provided the catalyst for violation and the responses. Under different conditions the relative strengths of violation, guardianship or reconstruction fluctuated, and it was these fluctuations that presented the participants with the ongoing struggle of CFS.

FATIGUE IN CHRONIC FATIGUE SYNDROME: A DISCOURSE ANALYSIS OF WOMEN'S EXPERIENTIAL NARRATIVES

Chronic fatigue syndrome (CFS) is a debilitating condition. Approximately 75% of sufferers are women. The etiology of CFS is debated, but remains inconclusive. "Fatigue" is ill defined and conceptually problematic. The international multidisciplinary literature on CFS reveals a paucity of studies on women. Qualitative research to analyze women's discourses on CFS is virtually absent. Eleven New Zealand women of European descent with experience of CFS were interviewed in depth. Within the complex facets of CFS, this article reports specifically on an analysis of discourses on "fatigue". The predominant theme that emerged was that fatigue is articulated as "lack" or absence, which is not representable as an identifiable entity in biomedical terms. Parallels with chronic pain are briefly drawn. We conclude that approaches to CFS must respond to the diverse and complex constructions of the experience of fatigue evident in women's narratives.

Relation between neuropsychological impairment and functional disability in patients with chronic fatigue syndrome

OBJECTIVESTo examine the relation between neuropsychological impairment and functional disability in patients with chronic fatigue syndrome, and determine whether the relation is independent of psychiatric factors.METHODSThe subjects were 53 patients...

Lack of seasonal variation of symptoms in patients with chronic fatigue syndrome

Several of the symptoms involved in chronic fatigue syndrome (CFS) such as fatigue, hypersomnia, hyperphagia, weight gain, and mood show seasonal variations in the general population. The aim of this study was to investigate whether patients with CFS experience seasonal fluctuations in these symptoms as well. Seasonal variation of symptoms was assessed in a group of 41 patients with CFS and 41 controls closely matched for age, gender, and city of residence. Participants were recruited across the US and were asked to complete the Seasonal Pattern Assessment Questionnaire (SPAQ) and the Profile of Mood States (POMS). CFS patients showed significantly lower scores on multiple SPAQ-derived measures as compared with controls. These included seasonal variation in energy, mood, appetite, weight, and sleep length. Patients also reported a significantly reduced sensitivity toward sunny, dry, and long days than controls. No association was noted between intensity of seasonal changes and severity of depressive symptoms. Patients with CFS exhibit an abnormally reduced seasonal variation in mood and behavior and would not be expected to benefit from light therapy.

Self-efficacy as a psychological moderator of chronic fatigue syndrome.

Chronic fatigue syndrome (CFS) is characterized by debilitating fatigue and a variety of somatic symptoms. Few studies have examined psychological aspects of CFS. In the present study, self-efficacy is shown to be a significant predictor of CFS symptoms beyond the variance accounted for by demographic variables and distress. Further psychological CFS research is encouraged by (1) identifying dimensions that are salient in the experience and study of CFS, (2) providing preliminary psychometric data for measures of those dimensions, and (3) identifying psychological variables that serve as moderators of the experience of CFS.