Assessing Attitudes Toward New Names for Chronic Fatigue Syndrome

Journal of Disability Policy Studies

Holbert

Torres-Harding

et al. 2004

Self Cite

Considerable discussion has occurred concerning the diagnostic label chronic fatigue syndrome (CFS). Many patient groups argue that using this term trivializes the seriousness of the syndrome. A federal government organization, the Chronic Fatigue Syndrome Coordinating Committee, appointed a Name Change Workgroup to attempt to develop different terminology for this disorder. This group distributed a poll to patients and health-care providers to obtain information about its recommendation to use an umbrella term, chronic neuroendocrineimmune dysfunction syndrome, and subtypes under it. In addition, the CFIDS Association, a national self-help advocacy organization, distributed a questionnaire to a group of health-care providers concerning these recommendations. The findings of both polls are presented. Overall findings indicated that the majority of patients want the name changed and that the term chronic neuroendocrineimmune dysfunction syndrome was acceptable to the majority of this group.

Section: Discussionmentioning

confidence: 99%

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confidence: 95%

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Stigma and the Term Chronic Fatigue Syndrome

Journal of Disability Policy Studies

Holbert

Torres-Harding

et al. 2004

Self Cite

“…The federally appointed name change working group solicited opinions from patients and scientists as well as through various Internet websites and listservs (Jason, Eisele, & Taylor, 2001). Our qualitative data indicated that 92% of patients wanted the name changed, and they indicated a variety of preferred names including Myalgic Encephalopathy (ME), Neuro-Immune Endocrine Disorder, Polyalgic Asthenia (a name that attempts to describe key symptoms), Ramsay’s Disorder, an eponym for one of the first physicians who had studied this illness, and Florence Nightingale Disease (who many believe had this illness).…”

Section: Introductionmentioning

confidence: 99%

The use of mixed methods in studying a chronic illness

Health Psychology and Behavioral Medicine

Reed

2015

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This article explores mixed methods approaches with an illness called Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS). Qualitative and Quantitative data were used to investigate the epidemiology of this illness, as well as explore attributions based on the name of the illness, and finally treatment approaches. In each of the domains within the ME and CFS research reviewed, our analyses were richer and our findings ultimately more impactful when we integrated qualitative and quantitative research methods. The use of a multiphase mixed methods research program provided our team unique vantage points for better understanding social and community issues involving this controversial chronic illness. Further, this approach allowed us to implement the insights gained through an advocacy lens to change policy, recommend and evaluate treatments, and amplify voices within the patient population. In this way, we believe that the practice of methodological pluralism is especially applicable and effective to the study of chronic illness, and believe other investigators will benefit from the use of these approaches with similar disenfranchised and unfairly treated populations.

“…The term myalgic encephalomyelitis had been used prior to the use of the term CFS (Acheson, 1959). In a re-cent study by Jason, Eisele, and Taylor (2001), a questionnaire was completed by 432 respondents, and most respondents (86%) indicated that they wanted a name change. It was also apparent that the patients and physicians were clearly split between adopting a name like myalgic encephalopathy (ME), versus one like neuro-endocrine immune disorder (NEID).…”

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confidence: 99%

Chronic Fatigue Syndrome versus Chronic Neuroendocrineimmune Dysfunction Syndrome

Journal of Health & Social Policy

Holbert

Torres-Harding

et al. 2003

Self Cite

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.