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

 

Physicians’ diagnoses of psychiatric disorders for people with chronic fatigue syndrome

Abstract:

OBJECTIVE: To examine rates of psychiatric diagnoses given by patients’ primary or regular physicians to persons with chronic fatigue syndrome(CFS), persons with psychiatrically explained fatigue, and a control group. Physicians’ psychiatric diagnosis and participants’ self-reported psychiatric diagnoses were compared to lifetime psychiatric diagnoses as measured by a structured psychiatric interview.

METHOD: Participants were recruited as part of a community-based epidemiology study of chronic fatigue syndrome. Medical records of 23 persons with chronic fatigue syndrome, 25 persons with psychiatrically explained chronic fatigue, and 19 persons without chronic fatigue (controls) were examined to determine whether their physician had given a diagnosis of mood, anxiety, somatoform, or psychotic disorder. Lifetime psychiatric status was measured using the Structured Clinical Interview for the DSM-IV (SCID). Participants’ self reports of specific psychiatric disorders were assessed as part of a detailed medical questionnaire.

RESULTS: Physicians’ diagnosis of a psychiatric illness when at least one psychiatric disorder was present ranged from 40 percent in the psychiatrically explained group, 50 percent in the control group, and 64.3 percent in the CFS group. Participants in the psychiatrically explained group were more accurate than physicians in reporting the presence of a psychiatric disorder, and in accurately reporting the presence of a mood or anxiety disorder.

CONCLUSIONS: The present investigation found underrecognition of psychiatric illness by physicians, with relatively little misdiagnosis of psychiatric illness. Physicians had particular difficulty assessing psychiatric disorder in those patients whose chronic fatigue was fully explained by a psychiatric disorder. Results emphasized the importance of using participant self report as a screening for psychiatric disorder.

 

Source: Torres-Harding SR, Jason LA, Cane V, Carrico A, Taylor RR. Physicians’ diagnoses of psychiatric disorders for people with chronic fatigue syndrome. Int J Psychiatry Med. 2002;32(2):109-24. http://www.ncbi.nlm.nih.gov/pubmed/12269593

 

A factor analysis of chronic fatigue symptoms in a community-based sample

Abstract:

BACKGROUND: This study examined characteristics of fatigue in individuals with chronic fatigue from a community-based study. Most studies of chronic fatigue have been based on patients recruited from primary or tertiary care settings. Samples such as these might not be representative of patients within the general population. The purpose of this study was to determine the factor structure of participants’ symptoms in a random community sample of individuals with chronic fatigue.

METHOD: A random sample of 18,675 respondents in Chicago received a brief telephone questionnaire designed to identify individuals with chronic fatigue. A group of 780 (4.2%) with chronic fatigue received further interview via telephone questionnaire involving characteristics of their fatigue. The analyses for this study were based on those people identified with having chronic fatigue. A factor analysis was conducted on responses to questionnaire items, and a four-factor solution emerged. Mean factor scores were derived and analyzed in relation to sociodemographic characteristics and sample subgroups.

RESULTS: The four factors were labeled: Lack of Energy, Physical Exertion, Cognitive Functioning, and Fatigue and Rest.

CONCLUSIONS: Results indicated that individuals with chronic fatigue have symptoms that can be differentiated into theoretically distinct factors.

 

Source: Jason LA, Taylor RR, Kennedy CL, Jordan K, Huang CF, Torres-Harding S, Song S, Johnson D. A factor analysis of chronic fatigue symptoms in a community-based sample.  Soc Psychiatry Psychiatr Epidemiol. 2002 Apr;37(4):183-9. http://www.ncbi.nlm.nih.gov/pubmed/12027245

 

Evaluating attributions for an illness based upon the name: chronic fatigue syndrome, myalgic encephalopathy and Florence Nightingale disease

Abstract:

In recent years, considerable discussion has occurred about stigma surrounding the name given to an illness currently known as chronic fatigue syndrome (CFS). Although patients and medical personnel have expressed varying opinions on this issue, no studies have evaluated how beliefs about the illness change based upon the type of name used for diagnostic purposes. Proposals have been put forth to rename the illness with an eponym (a famous patient’s or researcher’s name) or with a less trivial sounding, more medically based type of name.

In this study, attributions about CFS were measured in three groups of medical trainees. All groups read the same case study of a person with classic symptoms of chronic fatigue syndrome, with the only difference being in the type of name given. Trainees then were asked to provide attributions about certain aspects of the illness, including its cause, severity, and prognosis.

Results suggested that, across name conditions, most trainees appeared to consider the symptom complex of CFS a serious illness resulting in poor quality of life. In addition, findings indicated that the name, chronic fatigue syndrome, may be regarded less seriously than the Myalgic Encephalopathy name with respect to some important aspects of the illness. In this study, specialty of medical trainee also played a role in how the illness was perceived.

 

Source: Jason LA, Taylor RR, Plioplys S, Stepanek Z, Shlaes J. Evaluating attributions for an illness based upon the name: chronic fatigue syndrome, myalgic encephalopathy and Florence Nightingale disease. Am J Community Psychol. 2002 Feb;30(1):133-48. http://www.ncbi.nlm.nih.gov/pubmed/11928774

 

Prognosis of chronic fatigue in a community-based sample

Abstract:

OBJECTIVE: This study examined predictors of fatigue severity and predictors of continued chronic fatigue status at wave 2 follow-up within a random, community-based sample of individuals previously evaluated in a wave 1 prevalence study of chronic fatigue and chronic fatigue syndrome that originally took place between 1995 and 1997.

METHODS: Wave 1 data were from a larger community-based prevalence study of chronic fatigue syndrome. In the present study, a second wave of data were collected by randomly selecting a sample of participants from the wave 1 sample of 18,675 adults and readministering a telephone screening questionnaire designed to assess symptoms of chronic fatigue syndrome.

RESULTS: Findings revealed that wave 1 fatigue severity was a predictor of fatigue severity at wave 2 in the overall sample of individuals with and without chronic fatigue. In the smaller sample of individuals with chronic fatigue, wave 1 fatigue severity, worsening of fatigue with physical exertion, and feeling worse for 24 hours or more after exercise significantly predicted continued chronic fatigue status (vs. improvement) at wave 2 follow-up.

CONCLUSIONS: These findings underscore the prognostic validity of postexertional malaise in predicting long-term chronic fatigue and also highlight the importance of using population-based, representative random samples when attempting to identify long-term predictors of chronic fatigue at follow-up.

 

Source: Taylor RR, Jason LA, Curie CJ. Prognosis of chronic fatigue in a community-based sample. Psychosom Med. 2002 Mar-Apr;64(2):319-27. http://www.ncbi.nlm.nih.gov/pubmed/11914449

 

Assessing attitudes toward new names for chronic fatigue syndrome

Abstract:

A questionnaire was distributed at the American Association of Chronic Fatigue Syndrome’s biannual convention in Washington in January 2001 as well as through various Internet Web sites and listserves during early February and March of 2001. The sample consisted of 432 respondents. Most respondents (86%) indicated they wanted a name change, although more patients than scientists were in favor of this change. It was also apparent that the patients and physicians were clearly split between adopting a name such as myalgic encephalopathy versus one such as neuro-endocrine immune disorder. Also, among those respondents who selected either of these two choices for a new name, less than 30% of them supported the other name. Although the majority of respondents feel the name should be changed at this time, this survey suggests there are different stakeholders involved in the name-change process, each with strong and sometimes disparate feelings about changing the name.

 

Source: Jason LA, Eisele H, Taylor RR. Assessing attitudes toward new names for chronic fatigue syndrome. Eval Health Prof. 2001 Dec;24(4):424-35. http://www.ncbi.nlm.nih.gov/pubmed/11817200

 

Symptom occurrence in persons with chronic fatigue syndrome

Abstract:

This investigation compared differences in the occurrence of symptoms in participants with CFS, melancholic depression, and no fatigue (controls). The following Fukuda et al. [Ann. Intern. Med. 121 (1994) 953] criteria symptoms differentiated the CFS group from controls, but did not differentiate the melancholic depression group from controls: headaches, lymph node pain, sore throat, joint pain, and muscle pain. In addition, participants with CFS uniquely differed from controls in the occurrence of muscle weakness at multiple sites as well as in the occurrence of various cardiopulmonary, neurological, and other symptoms not currently included in the current case definition. Implications of these findings are discussed.

 

Source: Jason LA, Torres-Harding SR, Carrico AW, Taylor RR. Symptom occurrence in persons with chronic fatigue syndrome. Biol Psychol. 2002 Feb;59(1):15-27. http://www.ncbi.nlm.nih.gov/pubmed/11790441