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The Face of CFS in the U.S.
Abstract
What does the face of chronic fatigue syndrome look like? Is it male or female,
adult or child, Caucasian, African American or Latino? Is it the face of someone
who has been ill for 15 months or 15 years? Is it someone who became ill suddenly
or gradually? Read on for what we know so far.
... ME/CFS is an example of an enigmatic disease [48] in that it has a range of symptoms, little clinical consensus on effective treatment [75], and a lack of symptom specificity. While ME/CFS is thought to affect 0.2-0.4% of the world's population [26,32,36], research indicates that up to 90% of cases go undiagnosed [32], suggesting that people with ME/CFS are substantially undercounted and undertreated [19]. This is problematic because the condition has an array of debilitating symptoms, including extreme tiredness following exertion, cognitive fatigue, rheumatic pain and disrupted sleep. ...
... ME/CFS is an example of an enigmatic disease [48] in that it has a range of symptoms, little clinical consensus on effective treatment [75], and a lack of symptom specificity. While ME/CFS is thought to affect 0.2-0.4% of the world's population [26,32,36], research indicates that up to 90% of cases go undiagnosed [32], suggesting that people with ME/CFS are substantially undercounted and undertreated [19]. This is problematic because the condition has an array of debilitating symptoms, including extreme tiredness following exertion, cognitive fatigue, rheumatic pain and disrupted sleep. ...
... ME/CFS is also characterized by neurocognitive impairment (known as "brain fog" [57]) that impacts memory, concentration and problem-solving ability [67]. Other recognized symptoms include rheumatic pain affecting the muscles and joints [1,4]; poor quality of sleep, which typically leaves individuals feeling unrefreshed and thus prolongs feelings of tiredness [4,67]; and flu-like symptoms including sore throat and headaches [32]. ME/CFS patients can experience these symptoms with different degrees of severity. ...
Chronic Fatigue Syndrome (CFS) is a debilitating medical condition that is characterized by a range of physical, cognitive and social impairments. This paper investigates CFS patients' perspectives on the potential for technological support for self-management of their symptoms. We report findings from three studies in which people living with CFS 1) prioritized symptoms that they would like technologies to address, 2) articulated their current approaches to self-management alongside challenges they face, and 3) reflected on their experiences with three commercial smartphone apps related to symptom management. We contribute an understanding of the specific needs of the ME/CFS population and the ways in which they currently engage in self-management using technology. The paper ends by describing five high-level design recommendations for ME/CFS self-management technologies.
... In identifying ME affected according to the CCC, the sampling strategy had to be selected carefully. Some U.S. studies indicated that as many as 84%-91% of ME patients might go undiagnosed (Jason et al., 1999(Jason et al., , 2006(Jason et al., , 2020Solomon and Reeves, 2004), and we did not want to miss undiagnosed cases. Given the diagnostic process's on average 6-year duration in Norway, the choice of sampling approach had to consider that underdiagnosing ME with ICD register code G93.3 was nontrivial (Bragée et al., 2020;Kielland et al., forthcoming;ME Foreningen, 2021;Owe et al., 2016). ...
Public health and welfare systems request documentation on approaches to diagnose, treat, and manage myalgic encephalomyelitis and assess disability-benefit conditions. Our objective is to document ME patients' experiences with services/interventions and assess differences between those meeting different diagnostic criteria, importantly the impact of post-exertional malaise. We surveyed 660 fatigue patients in Norway using respondent-driven sampling and applied validated DePaul University algorithms to estimate Canadian and Fukuda criteria proxies. Patients on average perceived most interventions as having low-to-negative health effects. Responses differed significantly between sub-groups for some key interventions. The PEM score was strongly associated with the experience of most interventions. Better designed and targeted interventions are needed to prevent harm to the patient group. The PEM score appears to be a strong determinant and adequate tool for assessing patient tolerance for certain interventions. There is no known treatment for ME, and "do-no-harm" should be a guiding principle in all practice.
... The cause of CFS remains unknown, although in many cases, symptoms may have been triggered by an infection or other prodromal event, such as immunization, anesthetics, physical trauma, exposure to environmental pollutants, chemicals and heavy metals, and rarely blood transfusions. 2,3 The incidence and prevalence of CFS remains unknown in most countries. The largest and most numerous epidemiological studies come from the United States. ...
Introduction. Chronic Fatigue Syndrome (CFS) is a collection of symptoms from a substantial reduction in the ability to engage in preillness levels of occupational, educational, social, or personal activities that persists for more than six months and is accompanied by fatigue, post-exertional malaise, and unrefreshing sleep. One of the effects of heavy metal exposure is the occurrence of CFS among workers. Artisanal and Small-scale Gold Mining (ASGM) workers used mercury in their work, and this leads to a higher risk of chronic mercury poisoning. One of the health problems due to mercury exposure is the occurrence of CFS and this has not been studied among ASGM workers.
... An epidemiological study conducted by Jason et al. (1999) estimated a CFS prevalence of 410 cases per 100,000 individuals, which suggests 1 million cases in the United States alone. As estimated by another study conducted by Jason and Njoku (2006), 850 thousand Americans suffer from the syndrome. The disease's first case definition is attributed to the United States Center for Disease Control and Prevention (CDC) (HOLMES et al., 1988) as a means of standardization for epidemiological studies. ...
Characterized by persistent fatigue, pain, cognitive impairment and sleep difficulties, Chronic Fatigue Syndrome (CFS) has been common in clinical practice. Studies indicate multiple factors contributing to CFS development: poor sleep, dehydration, psychological stress, hormonal dysfunction, nutrient deficiencies, among others. In risk work conditions, like the shift work of mines, CFS significantly increases the chance of fatal accidents. Work environments of mines suggest the presence of factors that increase the risk of developing CFS. Considering the severity/implications of CFS’s symptoms on the social and professional lives as well as on the economy, efforts are targeting its characterization and prevention. This study aims to assess the risk of CFS by studying cross-sectional data on absenteeism of 621 shift workers, measuring 8 anthropometric and 11 biochemical variables as well as age and gender, amounting 21 variables. After imputation, logistic regression was fitted by Stepwise selection, Lasso and Elastic-Net regularization. Results suggest that the models do not discriminate very well due to noise inherent to the dependent variable. However, all models agree on the effects of Sodium and Total Cholesterol on the risk of absenteeism. The Stepwise model also indicates LDL and Triglycerides as significant factors, both Lasso and Elastic-Net show effects for LDL instead. The Elastic-Net model suggests an effect of Potassium, though inconclusive according to the literature.
... Based on recent reports, between 836,000 and 2.5 million individuals are affected by CFS in the US [2,3]. The overall estimated minimal yearly incidence provided by another investigation conducted in England was 0.015% [4]. ...
Background
With an unclear pathomechanism, no confirmed treatment regimen has been established for chronic fatigue syndrome (CFS). Acupuncture is applied as an alternative therapy for CFS. As a kind of acupuncture therapy, Jin’s three-needle acupuncture (JTN) has been applied to treat CFS. However, few large-sample randomised controlled trials on JTN treatment for CFS have been reported. We designed this study to evaluate the efficacy and safety of JTN treatment for CFS.
Method/design
This study is a multicentre, single-blind, randomised controlled trial. Patients who meet the inclusion criteria will be recruited and randomly assigned to either the JTN treatment group or the basic acupuncture group. Both interventions will be conducted for five consecutive days per week and last for 2 weeks. The primary outcome is the effective rate based on the 14-item Fatigue Scale (FS-14) score. Other outcome measures include the Fatigue Assessment Scale (FAI), the Depression Status Inventory (DSI), and the Self-rating Anxiety Scale (SAS). Plasma adrenocorticotropic hormone (ACTH), plasma cortisol, and serum levels of IL-2 and IFN-γ will also be measured in this study. Adverse events will be observed and recorded for the safety evaluation.
Discussion
This study may help to identify the efficacy and safety of JTN acupuncture treatment for CFS.
Trial registration
Chinese Clinical Trial Registry, ID: ChiCTR-IOR-17011009. Registered on 29 March 2017.
Electronic supplementary material
The online version of this article (10.1186/s13063-019-3243-5) contains supplementary material, which is available to authorized users.
Symptoms of the central disorders of hypersomnolence extend beyond excessive daytime sleepiness to include non‐restorative sleep, fatigue and cognitive dysfunction. They share much in common with myalgic encephalomyelitis/chronic fatigue syndrome, recently renamed systemic exertion intolerance disease, whose additional features include post‐exertional malaise and orthostatic intolerance. We sought to determine the frequency and correlates of systemic exertion intolerance disease in a hypersomnolent population. One‐hundred and eighty‐seven hypersomnolent patients completed questionnaires regarding sleepiness and fatigue; questionnaires and clinical records were used to assess for systemic exertion intolerance disease. Sleep studies, hypocretin and cataplexy were additionally used to assign diagnoses of hypersomnolence disorders or sleep apnea. Included diagnoses were idiopathic hypersomnia (n = 63), narcolepsy type 2 (n = 25), persistent sleepiness after obstructive sleep apnea treatment (n = 25), short habitual sleep duration (n = 41), and sleepiness with normal sleep study (n = 33). Twenty‐one percent met systemic exertion intolerance disease criteria, and the frequency of systemic exertion intolerance disease was not different across sleep diagnoses (p = .37). Patients with systemic exertion intolerance disease were no different from those without this diagnosis by gender, age, Epworth Sleepiness Scale, depressive symptoms, or sleep study parameters. The whole cohort reported substantial fatigue on questionnaires, but the systemic exertion intolerance disease group exhibited more profound fatigue and was less likely to respond to traditional wake‐promoting agents (88.6% versus 67.7%, p = .01). Systemic exertion intolerance disease appears to be a common co‐morbidity in patients with hypersomnolence, which is not specific to hypersomnolence subtype but may portend a poorer prognosis for treatment response.
This review was written from the viewpoint of the treating clinician to educate health care professionals and the public about Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). It includes: the clinical definition of ME/CFS with emphasis on how to diagnose ME/CFS; the etiology, pathophysiology, management approach, long-term prognosis and economic cost of ME/CFS. After reading this review, you will be better able to diagnose and treat your patients with ME/CFS using the tools and information provided. Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex, chronic medical condition characterized by symptom clusters that include: pathological fatigue and malaise that is worse after exertion, cognitive dysfunction, immune dysfunction, unrefreshing sleep, pain, autonomic dysfunction, neuroendocrine and immune symptoms. ME/CFS is common, often severely disabling and costly. The Institute of Medicine (IOM) reviewed the ME/CFS literature and estimates that between 836,000 and 2.5 million Americans have ME/CFS at a cost of between 17 and 24 billion dollars annually in the US. The IOM suggested a new name for ME/CFS and called it Systemic Exertion Intolerance Disease (SEID). SEID's diagnostic criteria are less specific and do not exclude psychiatric disorders in the criteria. The 2010 Canadian Community Health Survey discovered that 29% of patients with ME/CFS had unmet health care needs and 20% had food insecurity - lack of access to sufficient healthy foods. ME/CFS can be severely disabling and cause patients to be bedridden. Yet most patients (80%) struggle to get a diagnosis because doctors have not been taught how to diagnose or treat ME/CFS in medical schools or in their post-graduate educational training. Consequently, the patients with ME/CFS suffer. They are not diagnosed with ME/CFS and are not treated accordingly. Instead of compassionate care from their doctors, they are often ridiculed by the very people from whom they seek help. The precise etiology of ME/CFS remains unknown, but recent advances and research discoveries are beginning to shed light on the enigma of this disease including the following contributors: infectious, genetic, immune, cognitive including sleep, metabolic and biochemical abnormalities. Management of patients with ME/CFS is supportive symptomatic treatment with a patient centered care approach that begins with the symptoms that are most troublesome for the patient. Pacing of activities with strategic rest periods is, in our opinion, the most important coping strategy patients can learn to better manage their illness and stop their post-exertional fatigue and malaise. Pacing allows patients to regain the ability to plan activities and begin to make slow incremental improvements in functionality.
Recent years have brought growing recognition of the need for clinical criteria for myalgic encephalomyelitis (ME), which is also called chronic fatigue syndrome (CFS). An Expert Subcommittee of Health Canada established the Terms of Reference, and selected an Expert Medical Consensus Panel representing treating physicians, teaching faculty and researchers. A Consensus Workshop was held on March 30 to April 1,2001 to culminate the review process and establish consensus for a clinical working case definition, diagnostic protocols and treatment protocols. We present a systematic clinical working case definition that encourages a diagnosis based on characteristic patterns of symptom clusters, which reflect specific areas of pathogenesis. Diagnostic and treatment protocols, and a short overview of research are given to facilitate a comprehensive and integrated approach to this illness. Throughout this paper, “myalgic encephalomyelitis” and “chronic fatigue syndrome” are used interchangeably and this illness is referred to as “ME/CFS.”
Although fatigue has been actively investigated for more than 100 years, we have progressed little in either its theoretical or practical understanding. Fatigue has been considered to be both a symptom and an illness. Fatigue is a primary reason for patient visits to the physician's office, but it is difficult to measure and offers doctors little important information for diagnosis. Fatigue as a Window to the Brain gathers experts on a wide variety of disorders to consider what the presence of fatigue tells us about how the brain works—more specifically, to identify the neural mechanisms potentially responsible for fatigue. The book looks at many of the major conditions in which fatigue is observed, with the hope that patterns may emerge that will suggest paths for future research. It will be of interest to neuroscientists, clinical researchers, and physicians and other clinicians.
After discussing the nature of fatigue—its history and epidemiology and its assessment, measurement, and interpretation—the book turns to specific conditions associated with fatigue. It considers neurological conditions, including multiple sclerosis and stroke; psychiatric conditions as well as the overall treatment of fatigue in psychiatry; and general medical conditions, including HIV, heart disease, lupus, cancer, and others. The book then offers an overview of treatment approaches. It concludes with a definition of fatigue—both "primary" and "secondary"—and suggestions for future study.
Bradford Books imprint
Because the pathogenesis of Chronic Fatigue Syndrome (CFS) has yet to be determined, case definitions have relied on clinical observation in classifying signs and symptoms for diagnosis. The selec-tion of diagnostic signs and symptoms has major implications for which individuals are diagnosed with CFS and how seriously the illness is viewed by health care providers, disability insurers and rehabilitation planners, and patients and their families and friends. Diagnostic criteria also have implications for whether research based on varying definitions can be synthesized. The current investigation examined differences be-tween CFS as defined by Fukuda et al. (1994) and a set of criteria that has been proposed for a clinical Canadian Case definition. There were twenty-three participants who met the Canadian criteria, 12 in the CFS (Fukuda et al. (7) criteria) group and the 33 from the chronic fatigue (CF)-psychiatric group. Dependent measures included: work status, psychiatric comorbidity, symptoms, and functional impairment (measured by the Medical Outcomes Study). People meeting the Fukuda et al. and Canadian criteria were compared with people who had a chronically
fatiguing illness explained by a psychiatric condition. Statistical tests
used included binomial logistic regression and analysis of variance. The
Canadian criteria group, in contrast to the Fukuda et al. criteria group,
had more variables that statistically significantly differentiated them
from the psychiatric comparison group. Overall, there were 17 symptom differences between the Canadian and CF-psychiatric group, but
only 7 symptom differences between the CFS and CF-psychiatric
group. The findings suggest that both the Canadian and Fukuda et al.
case definitions select individuals who are statistically significantly
different from psychiatric controls with chronic fatigue, with the Canadian criteria selecting cases with less psychiatric co-morbidity, more
physical functional impairment, and more fatigue/weakness, neuropsychiatric, and neurological symptoms.
Background: This study evaluated the prevalence of chronic fatigue syndrome (CFS) among children and adolescents (ages 5 to 17) in an ethnically and socioeconomically diverse community population.
Objectives: This investigation attempted to address limitations of previous studies by using a community-based sample and thoroughly evaluating each participant (i.e., using medical and psychological evaluations) to determine a proper diagnosis of CFS.
Methods: A community-based sample of children and adolescents aged 5 to 17 were screened for symptoms of chronic fatigue syndrome by telephone. Those reported to suffer from CFS-like symptoms were given medical and psychological evaluations to allow a determination of the CFS diagnosis.
Results: The overall prevalence rate for the sample was 60 per 100,000 or .06%. The prevalence for the adolescents (aged 13 to 17) was 181 per 100,000 or .181%.
Conclusions: The current prevalence estimate for CFS in adolescents is higher than previous estimates. CFS was more common in adolescents than pre-pubescent children.
The chronic Epstein-Barr virus syndrome is a poorly defined symptom complex characterized primarily by chronic or recurrent debilitating fatigue and various combinations of other symptoms, including sore throat, lymph node pain and tenderness, headache, myalgia, and arthralgias. Although the syndrome has received recent attention, and has been diagnosed in many patients, the chronic Epstein-Barr virus syndrome has not been defined consistently. Despite the name of the syndrome, both the diagnostic value of Epstein-Barr virus serologic tests and the proposed causal relationship between Epstein-Barr virus infection and patients who have been diagnosed with the chronic Epstein-Barr virus syndrome remain doubtful. We propose a new name for the chronic Epstein-Barr virus syndrome--the chronic fatigue syndrome--that more accurately describes this symptom complex as a syndrome of unknown cause characterized primarily by chronic fatigue. We also present a working definition for the chronic fatigue syndrome designed to improve the comparability and reproducibility of clinical research and epidemiologic studies, and to provide a rational basis for evaluating patients who have chronic fatigue of undetermined cause.
Most of the Chronic Fatigue Syndrome (CFS) epidemiological studies have relied on physicians who refer patients having at least six months of chronic fatigue and other symptoms. However, there are a number of potential problems when using this method to derive prevalence statistics. For example, some individuals with CFS might not have the economic resources to access medical care. Other individuals with CFS might be reluctant to use medical personnel, particularly if they have encountered physicians skeptical of the authenticity of their illness. In addition, physicians that are skeptical of the existence of CFS might not identify cases. In the present pilot study, a random community sample (N = 1,031) was interviewed by telephone in order to identify and comprehensively evaluate individuals with symptoms of CFS and those who self-report having CFS. Different definitions of CFS were employed, and higher rates (0.2%) of CFS were found than in previous studies. Methodological benefits in using more rigorous epidemiological methods when estimating CFS prevalence rates are discussed.
Most previous estimates of the prevalence of chronic fatigue syndrome (CFS) have derived largely from treated populations, and have been biased by differential access to health care treatment linked with sex, ethnic identification, and socioeconomic status.
To assess the point prevalence of CFS in an ethnically diverse random community sample.
A sample of 28,673 adults in Chicago, Ill, was screened by telephone, and those with CFS-like symptoms were medically evaluated. MAIN OUTCOME MEASURES AND ANALYSES: Self-report questionnaires, psychiatric evaluations, and complete medical examinations with laboratory testing were used to diagnose patients with CFS. Univariate and multivariate statistical techniques were used to delineate the overall rate of CFS in this population, and its relative prevalence was subcategorized by sex, ethnic identification, age, and socioeconomic status.
There was a 65.1% completion rate for the telephone interviews during the first phase of the study. Findings indicated that CFS occurs in about 0.42% (95% confidence interval, 0.29%-0.56%) of this random community-based sample. The highest levels of CFS were consistently found among women, minority groups, and persons with lower levels of education and occupational status.
Chronic fatigue syndrome is a common chronic health condition, especially for women, occurring across ethnic groups. Earlier findings suggesting that CFS is a syndrome primarily affecting white, middle-class patients were not supported by our findings.
Objective: To examine the presence of symptoms associated with chronic fatigue syndrome (CFS) over the course of the illness and determine the probability of self-defined recovery by duration of illness.
Design: Follow-up study.
Subjects: One hundred fifty-five CFS patients enrolled in the Centers for Disease Control and Prevention's (CDC) CFS surveillance system between August 1989 and July 1993 and followed to November 1997.
Measurements: Presence of symptoms, a self-defined period of recovery from CFS, and demographic differences between patients reporting and not reporting recovery. Period life-table methods were used to compute the probability of recovery from CFS for specific years of illness duration.
Results: At illness onset, the most commonly reported CFS symptoms (> 45%) were sore throat, fever, tender lymph nodes, general weakness, and muscle pain. As the illness progressed, the percentages of patients reporting symptoms fluctuated. At illness onset, patients with a sudden onset of CFS reported significantly higher frequencies of sore throat, fever, tender lymph nodes, chills, hypersomnia, difficulty thinking or concentrating, and depression when compared to patients with a gradual onset. As the illness progressed, these differences disappeared, but gradual onset cases reported more hypersomnia than sudden onset cases (p = 0.001). The cumulative probability of recovery from CFS was 31.4% during the first 5 years of illness and 48.1% during the first 10 years of illness. For each year of illness through year 15, both sudden and gradual onset cases had similar recovery probabilities. Thereafter, gradual onset cases had higher recovery probabilities, but these differences were not statistically significant. Patients reporting recovery and those remaining ill were similar demographically.
Conclusions: A period of recovery could be reported at any time during the course of CFS, but was more likely in the early years. Additional longitudinal studies are required to adequately describe the course of CFS in the early stages of illness, determine if the illness recurs over time, and predict the occurrence of symptoms over the course of illness. We recommend that researchers develop a standard definition of recovery from CFS and that future studies take into account the variable duration of illness and follow-up.
To investigate the point prevalence of the chronic fatigue syndrome and unexplained debilitating chronic fatigue in a community-based sample of persons and to describe demographic, clinical, and psychosocial differences among those with the chronic fatigue syndrome, those with chronic fatigue, and healthy controls.
Prospective cohort study.
A health maintenance organization in Seattle, Washington.
A random sample of 4000 members of the health maintenance organization was surveyed by mail for the presence of chronic fatigue.
Persons with chronic fatigue were evaluated using a questionnaire that requested information about medical history and fatigue and related symptoms; validated measures of functional status and psychological distress; a physical examination; and standardized blood tests. A structured psychiatric interview was done in persons who appeared to meet the original Centers for Disease Control and Prevention (CDC) criteria for the chronic fatigue syndrome. Participants completed self-report measures at 12 and 24 months. Those with chronic fatigue were reevaluated in person 1 year after study enrollment.
3066 (77%) of the 4000 members surveyed responded. Chronic fatigue was reported by 590 persons (19%). Of these, 388 (66%) had a medical or psychiatric condition that could account for the fatigue. Of the 74 persons (37%) with chronic fatigue who were enrolled in the study, only 3 met the CDC criteria for the chronic fatigue syndrome. The remaining 71 persons were designated as having chronic fatigue alone. Seventy-four healthy, age- and sex-matched controls who were drawn from the same sample but who denied having chronic fatigue were also studied. Demographic characteristics were similar in persons with the chronic fatigue syndrome, persons with chronic fatigue alone, and controls. Those with the chronic fatigue syndrome or chronic fatigue alone had more frequent cervical and axillary adenopathy, poorer functional status, and greater psychological distress than controls. Women and minorities were not overrepresented among cases with chronic fatigue.
Using different assumptions about the likelihood that persons who did not participate in the study had the chronic fatigue syndrome, the estimated crude point prevalence of the syndrome in this community ranged from 75 to 267 cases per 100,000 persons. The point prevalence of chronic fatigue alone was strikingly higher; it ranged from 1775 to 6321 cases per 100,000 persons.
Despite considerable research on chronic fatigue syndrome (CFS) and conditions associated with unexplained chronic fatigue (CF), little is known about their prevalence and demographic distribution in the population. The present study describes the epidemiology and characteristics of self-reported CF and related conditions in a diverse urban community. The study used a cross-sectional telephone screening survey of households in San Francisco, followed by interviews with fatigued and nonfatigued residents. Respondents who appeared to meet case definition criteria for CFS, based on self-reported fatigue characteristics, symptoms, and medical history, were classified as CFS-like cases. Subjects who reported idiopathic chronic fatigue (ICF) that did not meet CFS criteria were classified as ICF-like cases. Screening interviews were completed for 8,004 households, providing fatigue and demographic information for 16,970 residents. Unexplained CF was extremely rare among household residents <18 years of age, but was reported by 2% of adult respondents. A total of 33 adults (0.2% of the study population) were classified as CFS-like cases and 259 (1.8%) as ICF-like cases. Neither condition clustered within households. CFS- and ICF-like illnesses were most prevalent among women and persons with annual household incomes below $40,000, and least prevalent among Asians. The prevalence of CFS-like illness was elevated among African Americans, Native Americans, and persons engaged in clerical occupations. Although CFS-like cases were more severely ill than those with ICF-like illness, a similar symptom pattern was observed in both groups. In conclusion, conditions associated with unexplained CF occur in all sociodemographic groups but appear to be most prevalent among women, persons with lower income, and some racial minorities.