Causes of death among patients with chronic fatigue syndrome

Abstract:

Chronic fatigue syndrome (CFS) is a debilitating illness affecting thousands of individuals. At the present time, there are few studies that have investigated causes of death for those with this syndrome. The authors analyzed a memorial list tabulated by the National CFIDS Foundation of 166 deceased individuals who had had CFS. There were approximately three times more women than men on the list.

The three most prevalent causes of death were heart failure, suicide, and cancer, which accounted for 59.6% of all deaths. The mean age of those who died from cancer and suicide was 47.8 and 39.3 years, respectively, which is considerably younger than those who died from cancer and suicide in the general population. The implications of these findings are discussed.

 

Source: Jason LA, Corradi K, Gress S, Williams S, Torres-Harding S. Causes of death among patients with chronic fatigue syndrome. Health Care Women Int. 2006 Aug;27(7):615-26. https://www.ncbi.nlm.nih.gov/pubmed/16844674

 

The relationships among coping styles and fatigue in an ethnically diverse sample

Abstract:

The present study focused on coping strategies among African Americans, Latinos, and European Americans with chronic fatigue syndrome (CFS) and idiopathic chronic fatigue (ICF). The coping strategies examined were measured by using the COPE Scales, which assess Seeking Emotional Social Support, Positive Reinterpretation and Growth, Acceptance, Denial, Turning to Religion, Behavioral Disengagement, and Focusing on and Venting Emotions. In addition, the four coping strategies specifically designed for people with CFS, including maintaining activity, accommodating to the illness, focusing on symptoms, and information-seeking, were used in this study. It was hypothesized that African Americans and Latinos in comparison to European Americans would be more likely to use religious coping, behavioral disengagement, and denial.

As predicted, African Americans were significantly more likely to turn to religion than European Americans, and Latinos and African Americans used denial significantly more often than European Americans. An additional finding was that focusing on symptoms was associated with greater fatigue and more physical disability among African Americans. Within the Latino sample, acceptance was related to greater fatigue and less physical disability, and greater optimism predicted less mental disability. Among European American participants, maintaining activity was related to less mental disability, whereas accommodating to the illness predicted more physical disability.

These results indicate that coping varies among various ethnic groups with CFS and ICF; however, denial is consistently related to less adaptive outcomes. Therefore, healthcare professionals should find ways to reduce patient use of denial and promote alternative strategies for managing life events.

 

Source: Njoku MG, Jason LA, Torres-Harding SR. The relationships among coping styles and fatigue in an ethnically diverse sample. Ethn Health. 2005 Nov;10(4):263-78 http://www.ncbi.nlm.nih.gov/pubmed/16191727

 

Chronic fatigue syndrome: the need for subtypes

Abstract:

Chronic fatigue syndrome (CFS) is an important condition confronting patients, clinicians, and researchers. This article provides information concerning the need for appropriate diagnosis of CFS subtypes. We first review findings suggesting that CFS is best conceptualized as a separate diagnostic entity rather than as part of a unitary model of functional somatic distress. Next, research involving the case definitions of CFS is reviewed.

Findings suggest that whether a broad or more conservative case definition is employed, and whether clinic or community samples are recruited, these decisions will have a major influence in the types of patients selected. Review of further findings suggests that subtyping individuals with CFS on sociodemographic, functional disability, viral, immune, neuroendocrine, neurology, autonomic, and genetic biomarkers can provide clarification for researchers and clinicians who encounter CFS’ characteristically confusing heterogeneous symptom profiles.

Treatment studies that incorporate subtypes might be particularly helpful in better understanding the pathophysiology of CFS. This review suggests that there is a need for greater diagnostic clarity, and this might be accomplished by subgroups that integrate multiple variables including those in cognitive, emotional, and biological domains.

 

Source: Jason LA, Corradi K, Torres-Harding S, Taylor RR, King C. Chronic fatigue syndrome: the need for subtypes. Neuropsychol Rev. 2005 Mar;15(1):29-58. http://www.ncbi.nlm.nih.gov/pubmed/15929497

 

Chronic fatigue syndrome impairs circadian rhythm of activity level

Abstract:

Some of the symptoms of chronic fatigue syndrome (CFS) are the same as for disrupted circadian rhythm. Activity level is frequently used to study circadian rhythm. Continuous waist activity measurements taken every minute 24 h/day for from 5 to 7 days in 10 controls and from 2 to 7 days in 8 patients with CFS yielded two primary findings: (a) lower daytime activity and (b) less regular activity-rest cycles in persons with CFS than in controls.

 

Source: Tryon WW, Jason L, Frankenberry E, Torres-Harding S. Chronic fatigue syndrome impairs circadian rhythm of activity level. Physiol Behav. 2004 Oct 15;82(5):849-53. http://www.ncbi.nlm.nih.gov/pubmed/15451649

 

Improving the diagnostic criteria and procedures for chronic fatigue syndrome

Abstract:

Since the publication of the case definition for chronic fatigue syndrome (CFS) in 1988 the diagnostic criteria have been revised twice in the U.S. None of the case definitions were derived empirically. As a result, there is concern regarding the sensitivity, specificity, and reliability of the criteria.

The goal of the present study was to identify methods for improving the diagnostic criteria for CFS. Three groups of 15 participants each were recruited: participants with (1) CFS, (2) major depressive disorder (MDD), and (3) healthy controls.

Using statistical procedures, three methods for improving the diagnostic criteria were explored: identification of new diagnostic symptoms, the use of severity ratings for symptomatology, and the identification of standardized measures that differentiate cases of CFS from other conditions. Results of the present study suggest that these three methods hold promise for improving the sensitivity, specificity, and reliability of the diagnostic criteria for CFS.

 

Source: King C, Jason LA. Improving the diagnostic criteria and procedures for chronic fatigue syndrome. Biol Psychol. 2005 Feb;68(2):87-106. http://www.ncbi.nlm.nih.gov/pubmed/15450690

 

Chronic fatigue syndrome versus neuroendocrineimmune dysfunction syndrome:differential attributions

Abstract:

Since 1988, when the term chronic fatigue syndrome (CFS) was coined, considerable discussion has occurred about stigma associated with this diagnostic term. In particular, patients with CFS have felt that this term trivializes the serious nature of this disorder. A Name Change Work group, appointed by the CFS Coordinating Committee, developed an umbrella term: chronic neuroendocrineimmune dysfunction syndrome (CNDS), and proposed that there would be sub-types under this term, one being CFS. The present study examined attributions of this new umbrella term when compared with CFS.

Nurses and physician assistants (PAs) were presented a case study of a patient with symptoms of CFS. They were told that the patient had either “chronic fatigue syndrome,” “chronic neuroendocrineimmune dysfunction syndrome,” or “chronic neuroendocrineimmune dysfunction syndrome, which had formerly been called chronic fatigue syndrome.” The different terms led to different attributions, with PA respondents rating the “CNDS” label as more severe. Results suggest that a more medical sounding term (CNDS) may lead to attributions that this syndrome is a more serious, disabling illness. The policy implications of these findings are discussed.

 

Source: Jason LA, Holbert C, Torres-Harding S, Taylor RR, LeVasseur JJ, Breitinger P, LaBarbera D, Siegel L. Chronic fatigue syndrome versus neuroendocrineimmune dysfunction syndrome:differential attributions. J Health Soc Policy. 2003;18(1):43-55. http://www.ncbi.nlm.nih.gov/pubmed/15189800

 

Identification of ambiguities in the 1994 chronic fatigue syndrome research case definition and recommendations for resolution

Abstract:

BACKGROUND: Chronic fatigue syndrome (CFS) is defined by symptoms and disability, has no confirmatory physical signs or characteristic laboratory abnormalities, and the etiology and pathophysiology remain unknown. Difficulties with accurate case ascertainment contribute to this ignorance.

METHODS: Experienced investigators from around the world who are involved in CFS research met for a series of three day workshops in 2000, 2001 and 2002 intended to identify the problems in application of the current CFS case definition. The investigators were divided into focus groups and each group was charged with a topic. The investigators in each focus group relied on their own clinical and scientific knowledge, brainstorming within each group and with all investigators when focus group summaries were presented. Relevant literature was selected and reviewed independent of the workshops. The relevant literature was circulated via list-serves and resolved as being relevant by group consensus. Focus group reports were analyzed and compiled into the recommendations presented here.

RESULTS: Ambiguities in the current CFS research definition that contribute to inconsistent case identification were identified. Recommendations for use of the definition, standardization of classification instruments and study design issues are presented that are intended to improve the precision of case ascertainment. The International CFS Study Group also identified ambiguities associated with exclusionary and comorbid conditions and reviewed the standardized, internationally applicable instruments used to measure symptoms, fatigue intensity and associated disability.

CONCLUSION: This paper provides an approach to guide systematic, and hopefully reproducible, application of the current case definition, so that case ascertainment would be more uniform across sites. Ultimately, an operational CFS case definition will need to be based on empirical studies designed to delineate the possibly distinct biological pathways that result in chronic fatigue.

Comment in: Identification of ambiguities in the 1994 chronic fatigue syndrome research case definition and recommendations for resolution. [BMC Health Serv Res. 2005]

 

Source: Reeves WC, Lloyd A, Vernon SD, Klimas N, Jason LA, Bleijenberg G, Evengard B, White PD, Nisenbaum R, Unger ER; International Chronic Fatigue Syndrome Study Group. Identification of ambiguities in the 1994 chronic fatigue syndrome research case definition and recommendations for resolution. BMC Health Serv Res. 2003 Dec 31;3(1):25. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC317472/ (Full article)

 

Comparing symptoms of chronic fatigue syndrome in a community-based versus tertiary care sample

Abstract:

Chronic Fatigue Syndrome (CFS) is a debilitating condition characterized by six or more months of prolonged or relapsing, unexplained fatigue of new or definite onset and at least four of eight associated somatic and cognitive symptoms. Almost all studies of samples with patients with CFS have relied on referrals from physicians or health facilities.

Underserved minorities, who not only tend to manifest higher levels of chronic illness, but are also less likely to seek and receive adequate medical care, have not been adequately represented in these studies. The present study compared two groups of individuals with CFS, one from a community-based sample and another from a tertiary-based sample. Findings indicate that patients with CFS from tertiary care settings have a higher frequency of symptoms than those in the general population who have CFS.

 

Source: Jason LA, Plioplys AV, Torres-Harding S, Corradi K. Comparing symptoms of chronic fatigue syndrome in a community-based versus tertiary care sample. J Health Psychol. 2003 Jul;8(4):459-64. http://www.ncbi.nlm.nih.gov/pubmed/19127712

 

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

Abstract:

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.

 

Source: Jason LA, Helgerson J, Torres-Harding SR, Carrico AW, Taylor RR. Variability in diagnostic criteria for chronic fatigue syndrome may result in substantial differences in patterns of symptoms and disability. Eval Health Prof. 2003 Mar;26(1):3-22. http://www.ncbi.nlm.nih.gov/pubmed/12629919

 

Chronic fatigue syndrome: symptom subtypes in a community based sample

Abstract:

Most studies of Chronic Fatigue Syndrome (CFS) have been based on patients recruited from primary or tertiary care settings. Patients from such settings might not be typical of patients in the general population. The present investigation involved examining individuals with CFS from a community-based study. A random sample of 18,675 respondents in Chicago were first interviewed by telephone. A group of individuals with chronic fatigue accompanied by at least four Fukuda et al. (1994) symptoms associated with CFS were given medical and psychiatric examinations. From this sample, a physician review group diagnosed individuals with CFS. Those diagnosed with CFS were subclassified based on frequency of symptoms. Important differences emerged on measures of sociodemographics and disability. The implications of these findings and others are discussed.

 

Source: Jason LA, Taylor RR, Kennedy CL, Jordan KM, Song S, Johnson D, Torres-Harding S. Chronic fatigue syndrome: symptom subtypes in a community based sample. Women Health. 2003;37(1):1-13. http://www.ncbi.nlm.nih.gov/pubmed/12627607