Natural history of severe chronic fatigue syndrome

Hill, Nancy; Tiersky, Lana A.; Scavalla, Vanessa R.; Lavietes, Marc H.; Natelson, Benjamin H.

doi:10.1016/s0003-9993(99)90066-7

Cited by 33 publications

(25 citation statements)

References 15 publications

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“…CFS affects between 400,000 and 800,000 people in the United States [2,3] and has an average duration of 5 years, but symptoms can persist as long as 20 years [4]. The prognosis for recovery of severely ill CFS patients is poor [5,6]. Despite CFS's disabling, enduring, and prevalent nature, scant studies have quantified its impact on the health and well-being of those affected, on the health care system, or on society as a whole.…”

Section: Introductionmentioning

confidence: 99%

“…Two population-based studies of CFS have been conducted in the United States, and both found that CFS is one of the more common chronic illnesses among women across all racial/ethnic groups and that less than 20% of those who suffer from CFS have been diagnosed by a health care provider [2,3]. Only three studies, all of which were clinic based, have attempted to quantify the impact of CFS, and each showed that people with the syndrome were likely to have lost their job or to be unemployed [6-8]. In addition, it was shown that persons with CFS pose a disproportionate burden on the health care system and their families since they are sick for long periods of time and since there is no known cure for the illness [9].…”

Section: Introductionmentioning

confidence: 99%

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The economic impact of chronic fatigue syndrome

Reynolds

Vernon

Bouchery

et al. 2004

Cost Eff Resour Alloc

206

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Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

The economic impact of chronic fatigue syndrome

Reynolds

Vernon

Bouchery

et al. 2004

Cost Eff Resour Alloc

206

View full text Add to dashboard Cite

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“…The results of an earlier Australian study by Schweitzer et al showed that 47% of the afflicted had to retire from work because of CFS, that these persons lost socially meaningful integration, and that their supportive social network was restricted to the family and the closest circle of friends [35]. In a prospective study by Hill et al the majority of patients were unemployed because of their ill health and remained so over a 3-year period [21]. It is noteworthy that, in spite of the persistent fatigue and exhaustion reported to accompany minimal effort, more than half the patients in our random sample were fit for work.…”

Section: Discussionmentioning

confidence: 99%

“…For this group of chronically ill individuals, the above differences were even more characteristic. Although some of the differences between the disabled group and the group fit to work could be perceived as representing a greater degree of symptomatic severity [21,31], the differences in subjective assessment and attitude, the lower occupational status in the disenabled group, and the general lack of differences in psychiatric diagnoses and physician-rated functional capacity would not support this assumption. Applying the notion of different degrees of severity to the assessment of CFS requires further research to clarify conceptual and etiological issues, since severity ratings have hitherto been based solely on selfassessments by the patients.…”

Section: Discussionmentioning

confidence: 99%

Chronic fatigue and indicators of long-term employment disability in psychosomatic inpatients

Tritt

Nickel

Mitterlehner

et al. 2004

Wien Klin Wochenschr

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The major goal of this study was to determine indictors of long-term disability for psychosomatic inpatients with chronic fatigue syndrome. To this end, a cross-sectional study was performed with a random sample of patients (n=1000, response rate: 83.9%) at a psychosomatic inpatient clinic. 51.1% of the patients (n=429) reported intensely persistent exhaustion that had no logical relation to actual exertion. 159 (37.1%) patients in this group were disabled from working and these comprised the main target group of this study. Significantly more patients in the target group worked part time, were disabled for a disproportionately long period of time (50.9% of all were disabled for more than 6 months in the previous year), and felt stressed because of conflicts with their superiors and/or colleagues (in each case, P<0.01). While more frequent psychological comorbidity was not found, they reported physical complaints more often. It was not the patients fit for work who felt more burdened with chronic fatigue, but rather the employment-disabled, who were actually exposed to fewer demands. These patients had, in comparison with those fit to work, a stronger fixation on somatic complaints, inadequate perception of physical and psychic sensations, difficulties getting along with other people and in coping with a regular job (in each case, P<0.01). Prospective examination of these indicators could help detect predictor variables for long-term disability in chronic fatigue. Such predictors could contribute to timely social-medical assessment and treatment.

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“…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].…”

Section: Introductionmentioning

confidence: 99%

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

Leite

Drachler

Killett

et al. 2011

Int J Equity Health

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BackgroundNeeds-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.MethodsThe 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.FindingsParticipants 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.ConclusionsChanges 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.

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Natural history of severe chronic fatigue syndrome

Cited by 33 publications

References 15 publications

The economic impact of chronic fatigue syndrome

The economic impact of chronic fatigue syndrome

Chronic fatigue and indicators of long-term employment disability in psychosomatic inpatients

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

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