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Tattan M, Rosmalen J, Hanssen D. Factors associated with receiving a Functional Disorder diagnostic label: A systematic review. PLoS One 2025; 20:e0317236. [PMID: 39869577 PMCID: PMC11771906 DOI: 10.1371/journal.pone.0317236] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 04/25/2024] [Accepted: 12/25/2024] [Indexed: 01/29/2025] Open
Abstract
OBJECTIVES Functional Disorders (FD) are highly prevalent conditions that are diagnosed based on the presence of specific patterns of somatic symptoms. Examples of FDs include Fibromyalgia and Irritable Bowel Syndrome. Many patients who meet the criteria do not receive a formal diagnostic label. This systematic review aims to assess factors associated with receiving an FD diagnostic label. METHODS A systematic search of PubMed, PsycINFO, and Embase was performed following the PRISMA guidelines. All research methodologies and languages were included with a focus on experiences and impacts of receiving/having an FD diagnostic label. Excluded studies were those not mentioning diagnostic labels, only involving single pain symptoms, and studies solely focusing on functional neurological symptoms. Screening, data extraction and quality ratings (using the QuADS instrument) were performed by two independent reviewers. RESULTS 15 Studies were identified (10 quantitative and 5 qualitative). Our results show that female patients were more likely to receive an FD diagnostic label for their symptoms; other associations were less consistent and only found for specific labels or research designs. In general, quality of life and healthcare use did not seem to differ between patients with and without an FD diagnostic label. From the healthcare professional's perspective there was doubt about giving an FD diagnostic label, mainly due to concerns of harm for patients. Quality of included studies was rated low to moderate. CONCLUSION Better understanding of factors associated with receiving or having an FD diagnostic label, independently from symptom development can help healthcare professionals make evidence-based decisions in labelling or not; however, high quality studies on this topic are urgently needed.
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Affiliation(s)
- Mais Tattan
- Interdisciplinary Centre Psychopathology and Emotion Regulation, University Medical Center Groningen, University of Groningen, Groningen, the Netherlands
| | - Judith Rosmalen
- Interdisciplinary Centre Psychopathology and Emotion Regulation, University Medical Center Groningen, University of Groningen, Groningen, the Netherlands
| | - Denise Hanssen
- Interdisciplinary Centre Psychopathology and Emotion Regulation, University Medical Center Groningen, University of Groningen, Groningen, the Netherlands
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Terman JM, Awsumb JM, Cotler J, Jason LA. Confirmatory factor analysis of a myalgic encephalomyelitis and chronic fatigue syndrome stigma scale. J Health Psychol 2020; 25:2352-2361. [PMID: 30183363 PMCID: PMC7970268 DOI: 10.1177/1359105318796906] [Citation(s) in RCA: 5] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/16/2022] Open
Abstract
This study adapted a chronic illness stigma scale and explored its psychometric properties. The main purposes were to confirm the factor structure of the instrument with this population and address the previous factor intercorrelation discrepancies. Five hundred and fifty-four individuals with myalgic encephalomyelitis or chronic fatigue syndrome completed the adapted stigma scale. Results document the stigma experienced by an international sample of individuals with myalgic encephalomyelitis and chronic fatigue syndrome. Factors demonstrated good internal consistency, and a model fit was found in a confirmatory factor analysis. Participants endorsed high levels of stigma, estrangement, and disclosure. Implications of these findings and future directions are discussed.
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Johnson ML, Cotler J, Terman JM, Jason LA. Risk factors for suicide in chronic fatigue syndrome. DEATH STUDIES 2020; 46:738-744. [PMID: 32527207 PMCID: PMC9152620 DOI: 10.1080/07481187.2020.1776789] [Citation(s) in RCA: 11] [Impact Index Per Article: 2.2] [Reference Citation Analysis] [Abstract] [MESH Headings] [Grants] [Track Full Text] [Subscribe] [Scholar Register] [Indexed: 05/29/2023]
Abstract
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) includes symptoms such as post-exertional malaise, unrefreshing sleep, and cognitive impairments. Several studies suggest these patients have an increased risk of suicidal ideation and early mortality, although few have published in this area. This study explores risk factors for suicide among 64 individuals with ME/CFS using archival data, 17 of which died from suicide. Results indicated an increased risk of suicide for those for those utilizing the label CFS, for those with limited overall functioning, and for those without comorbid illnesses. Findings suggest that stigma and functional impairments limit access to care and social supports.
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Affiliation(s)
- Madeline L Johnson
- Center for Community Research, DePaul University, Chicago, Illinois, USA
| | - Joseph Cotler
- Center for Community Research, DePaul University, Chicago, Illinois, USA
| | - Julia M Terman
- Center for Community Research, DePaul University, Chicago, Illinois, USA
| | - Leonard A Jason
- Center for Community Research, DePaul University, Chicago, Illinois, USA
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Noble S, Bonner C, Hersch J, Jansen J, McGeechan K, McCaffery K. Could disease labelling have positive effects? An experimental study exploring the effect of the chronic fatigue syndrome label on intended social support. PATIENT EDUCATION AND COUNSELING 2019; 102:486-493. [PMID: 30514660 DOI: 10.1016/j.pec.2018.10.011] [Citation(s) in RCA: 4] [Impact Index Per Article: 0.7] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Subscribe] [Scholar Register] [Received: 02/25/2018] [Revised: 10/04/2018] [Accepted: 10/13/2018] [Indexed: 06/09/2023]
Abstract
Objective Chronic fatigue syndrome (CFS) patients report limited social support, which can affect symptom severity. Friends are a key source of social support for young adults with CFS, but there is limited research on friends' responses to the CFS label. We explored the potential benefits or harms of the CFS label for shaping the potential for social support from a friend's perspective. Method 207 university students responded to hypothetical scenarios about a close friend experiencing CFS. Participants were randomly allocated to either the CFS-label or no-label conditions. The potential for social support was operationalised as attitude (sympathetic or hostile), intended treatment support and intended behavioural support. Results The CFS label elicited a greater potential for social support, with significantly higher sympathetic responses, lower rejecting responses and greater support for active treatment. These effects were significantly greater in men compared to women. There was no effect on intended behavioural support. Conclusion This study suggests the CFS label may increase the potential for social support. Young adults, particularly men, held more supportive attitudes towards their friend when the CFS label was used. Practical Implications The effects of labels on the potential for social support need to be considered when evaluating the usefulness of a disease label.
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Affiliation(s)
- Samara Noble
- The University of Sydney, Faculty of Medicine and Health, School of Public Health, Sydney, Australia; Wiser Healthcare, Australia; The University of Sydney, Centre for Medical Psychology and Evidence-based Decision-making (CeMPED), Sydney, Australia.
| | - Carissa Bonner
- The University of Sydney, Faculty of Medicine and Health, School of Public Health, Sydney, Australia; Wiser Healthcare, Australia; The University of Sydney, Centre for Medical Psychology and Evidence-based Decision-making (CeMPED), Sydney, Australia
| | - Jolyn Hersch
- The University of Sydney, Faculty of Medicine and Health, School of Public Health, Sydney, Australia; Wiser Healthcare, Australia; The University of Sydney, Centre for Medical Psychology and Evidence-based Decision-making (CeMPED), Sydney, Australia
| | - Jesse Jansen
- The University of Sydney, Faculty of Medicine and Health, School of Public Health, Sydney, Australia; Wiser Healthcare, Australia; The University of Sydney, Centre for Medical Psychology and Evidence-based Decision-making (CeMPED), Sydney, Australia
| | - Kevin McGeechan
- The University of Sydney, Faculty of Medicine and Health, School of Public Health, Sydney, Australia; Wiser Healthcare, Australia; The University of Sydney, Centre for Medical Psychology and Evidence-based Decision-making (CeMPED), Sydney, Australia
| | - Kirsten McCaffery
- The University of Sydney, Faculty of Medicine and Health, School of Public Health, Sydney, Australia; Wiser Healthcare, Australia; The University of Sydney, Centre for Medical Psychology and Evidence-based Decision-making (CeMPED), Sydney, Australia
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5
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Terman JM, Cotler J, Jason LA. HOW PSYCHIATRIC REFERRALS INFLUENCE STIGMATIZATION IN PATIENTS WITH MYALGIC ENCEPHALOMYELITIS AND CHRONIC FATIGUE SYNDROME: AN EXAMINATION OF AMERICAN AND BRITISH MODELS. COMMUNITY PSYCHOLOGY IN GLOBAL PERSPECTIVE 2019; 5:19-29. [PMID: 33628951 PMCID: PMC7901827] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Subscribe] [Scholar Register] [Indexed: 06/12/2023]
Abstract
Myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) are controversial chronic illnesses with a myriad of debilitating symptoms. This study aimed to explore physician referrals to psychiatrists or psychologists, perceived stigma, and estrangement for patients with ME and CFS. Findings indicate that patients who have been referred to psychiatrists are likely to perceive illness stigma and feel estranged from others due to their illness. These relationships are moderated by the country of residence, the United States and the United Kingdom. The implications of physician referrals for people with ME and CFS are discussed.
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Lacerda EM, Mudie K, Kingdon CC, Butterworth JD, O'Boyle S, Nacul L. The UK ME/CFS Biobank: A Disease-Specific Biobank for Advancing Clinical Research Into Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Front Neurol 2018; 9:1026. [PMID: 30564186 PMCID: PMC6288193 DOI: 10.3389/fneur.2018.01026] [Citation(s) in RCA: 26] [Impact Index Per Article: 3.7] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 09/28/2018] [Accepted: 11/14/2018] [Indexed: 11/13/2022] Open
Abstract
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a disabling disease characterized by unexplained incapacitating fatigue, accompanied by variable multi-systemic symptoms. ME/CFS causes a significant personal and public health burden, and urgently requires the coordination of research efforts to investigate its etiology and pathophysiology and to develop and validate sensitive and specific biomarkers to confirm diagnosis. This narrative paper describes how people with ME/CFS, together with a multidisciplinary team of researchers, have established the UK ME/CFS Biobank (UKMEB), a unique research infrastructure specifically designed to expedite biomedical research into ME/CFS. We describe the journey that led to its conceptualization and operation, and how the resource has served as a model disease-specific biobank, aggregating human biospecimens alongside comprehensive health information on participants. The UKMEB currently has data and samples from 600 donors including people with ME/CFS and a comparison group with multiple sclerosis and healthy controls. A longitudinal sub-cohort has been established of participants having follow-up assessments at multiple time-points. As an open resource for quality and ethical research into ME/CFS, biological samples and data have not only been analyzed within our research team but have also been shared with researchers across Europe, America and the Middle East. We continue to encourage researchers from academic and commercial sectors to access the UKMEB. Major steps have been taken and challenges remain; these include sustainability and expansion, and harmonization of processes to facilitate integration with other bioresources and databanks internationally.
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Affiliation(s)
- Eliana M Lacerda
- Department of Clinical Research, Faculty of Infectious and Tropical Diseases, London School of Hygiene and Tropical Medicine, London, United Kingdom
| | - Kathleen Mudie
- Department of Clinical Research, Faculty of Infectious and Tropical Diseases, London School of Hygiene and Tropical Medicine, London, United Kingdom
| | - Caroline C Kingdon
- Department of Clinical Research, Faculty of Infectious and Tropical Diseases, London School of Hygiene and Tropical Medicine, London, United Kingdom
| | - Jack D Butterworth
- Department of Clinical Research, Faculty of Infectious and Tropical Diseases, London School of Hygiene and Tropical Medicine, London, United Kingdom
| | - Shennae O'Boyle
- Department of Clinical Research, Faculty of Infectious and Tropical Diseases, London School of Hygiene and Tropical Medicine, London, United Kingdom
| | - Luis Nacul
- Department of Clinical Research, Faculty of Infectious and Tropical Diseases, London School of Hygiene and Tropical Medicine, London, United Kingdom
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McManimen SL, McClellan D, Stoothoff J, Jason LA. Effects of unsupportive social interactions, stigma, and symptoms on patients with myalgic encephalomyelitis and chronic fatigue syndrome. JOURNAL OF COMMUNITY PSYCHOLOGY 2018; 46:959-971. [PMID: 30311972 PMCID: PMC7944645 DOI: 10.1002/jcop.21984] [Citation(s) in RCA: 26] [Impact Index Per Article: 3.7] [Reference Citation Analysis] [Abstract] [MESH Headings] [Grants] [Track Full Text] [Subscribe] [Scholar Register] [Received: 03/06/2018] [Revised: 03/26/2018] [Accepted: 03/26/2018] [Indexed: 05/29/2023]
Abstract
Prior research has found a heightened risk of suicide in patients with myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS). It is possible that a number of factors including stigma, unsupportive social interactions, and severe symptoms could lead to the development of depression, suicidal ideation, and heightened risk of suicide in this patient population. Prior studies have indicated that patients often report the legitimacy of their illness being questioned by family, friends, and even their physicians. This study aimed to determine whether stigma experienced, social support, symptomology, and functioning may be associated with depression and endorsement of suicidal ideation (SI) in patients with a self-reported diagnosis of ME or CFS. Findings indicated that participants that endorsed both SI and depression, in contrast to those that did not, experienced more frequent unsupportive social interactions in the form of blame for their illness, minimization of its severity, and social distancing from others. In addition, 7.1% of patients with ME and CFS endorsed SI but do not meet the criteria for clinical depression These findings highlight the importance of stigma and unsupportive social interactions as risk factors for suicidal thoughts or actions among patients with ME and CFS. Community psychologists have an important role to play in helping educate health care professionals and the public to these types of risk factors for patients marginalized by ME and CFS.
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Page LA, Wessely S. Medically Unexplained Symptoms: Exacerbating Factors in the Doctor-Patient Encounter. J R Soc Med 2017; 96:223-7. [PMID: 12724431 PMCID: PMC539474 DOI: 10.1177/014107680309600505] [Citation(s) in RCA: 52] [Impact Index Per Article: 6.5] [Reference Citation Analysis] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/16/2022] Open
Affiliation(s)
- L A Page
- Department of Psychological Medicine, Institute of Psychiatry, De Crespigny Park, London SE5 8AF, UK.
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McDermott C, Richards SCM, Ankers S, Selby M, Harmer J, Moran CJ. An Evaluation of a Chronic Fatigue Lifestyle Management Programme Focusing on the Outcome of Return to Work or Training. Br J Occup Ther 2016. [DOI: 10.1177/030802260406700606] [Citation(s) in RCA: 12] [Impact Index Per Article: 1.3] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/17/2022]
Abstract
This article presents the results of an audit of clinical outcomes from an occupational therapist led service for patients with chronic fatigue syndrome (CFS). The service offers group outpatient lifestyle management sessions, in which patients are encouraged to restructure lifestyle patterns in order to facilitate improvements in fatigue and function. The cohort studied consisted of 98 consecutive patients attending the service who fulfilled the 1994 Centers for Disease Control criteria for CFS. The median illness duration was 5 years. The treatment offered consisted of six group sessions in lifestyle management together with three additional review sessions. The primary outcome measure was a return by the patient to employment, voluntary work or training. The cohort was followed up at a median of 18 months using a self-report questionnaire. Among the treated patients, 42% (31/74) reported new part-time or full-time employment, voluntary work or training. The results of this study suggest that a lifestyle management programme offered by an occupational therapist led specialist service may provide positive outcomes, in terms of a return by patients to work and training, and indicates the need for a randomised controlled trial to provide definitive evidence of this.
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11
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McManimen SL, Devendorf AR, Brown AA, Moore BC, Moore JH, Jason LA. Mortality in Patients with Myalgic Encephalomyelitis and Chronic Fatigue Syndrome. FATIGUE : BIOMEDICINE, HEALTH & BEHAVIOR 2016; 4:195-207. [PMID: 28070451 PMCID: PMC5218818 DOI: 10.1080/21641846.2016.1236588] [Citation(s) in RCA: 26] [Impact Index Per Article: 2.9] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Subscribe] [Scholar Register] [Received: 08/17/2016] [Accepted: 09/12/2016] [Indexed: 12/21/2022]
Abstract
BACKGROUND There is a dearth of research examining mortality in individuals with myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS). Some studies suggest there is an elevated risk of suicide and earlier mortality compared to national norms. However, findings are inconsistent as other researchers have not found significant increases in all-cause mortality for patients. OBJECTIVE This study sought to determine if patients with ME or CFS are reportedly dying earlier than the overall population from the same cause. METHODS Family, friends, and caregivers of deceased individuals with ME or CFS were recruited through social media, patient newsletters, emails, and advocate websites. This study analyzed data including cause and age of death for 56 individuals identified as having ME or CFS. RESULTS The findings suggest patients in this sample are at a significantly increased risk of earlier all-cause (M = 55.9 years) and cardiovascular-related (M = 58.8 years) mortality, and they had a directionally lower mean age of death for suicide (M = 41.3 years) and cancer (M =66.3 years) compared to the overall U.S. population [M = 73.5 (all-cause), 77.7 (cardiovascular), 47.4 (suicide), and 71.1 (cancer) years of age]. CONCLUSIONS The results suggest there is an increase in risk for earlier mortality in patients with ME and CFS. Due to the small sample size and over-representation of severely ill patients, the findings should be replicated to determine if the directional differences for suicide and cancer mortality are significantly different from the overall U.S. population.
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Jason LA, Holbert C, Torres-Harding S, Taylor RR. Stigma and the Term Chronic Fatigue Syndrome. JOURNAL OF DISABILITY POLICY STUDIES 2016. [DOI: 10.1177/10442073040140040401] [Citation(s) in RCA: 14] [Impact Index Per Article: 1.6] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/17/2022]
Abstract
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.
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Basch MC, Chow ET, Logan DE, Schechter NL, Simons LE. Perspectives on the clinical significance of functional pain syndromes in children. J Pain Res 2015; 8:675-86. [PMID: 26504406 PMCID: PMC4605245 DOI: 10.2147/jpr.s55586] [Citation(s) in RCA: 8] [Impact Index Per Article: 0.8] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Download PDF] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 12/12/2022] Open
Abstract
Functional pain syndromes (FPS) characterize a subset of individuals who experience pain and related symptoms and disability without clear structural or disease etiology. In the pediatric population, FPS hold high clinical importance due to significant prevalence rates and potential to persist into adulthood. Although extensive research has been executed to disambiguate FPS, the syndromes that fall within its spectrum remain conceptually complex and sometimes ill-defined. This paper provides an overview of available research on the classification and multifaceted etiology of FPS in youth and their effects on interpersonal, psychological, and familial function. Vital aspects of a successful multidisciplinary approach to treating this population are described; however, it is evident that future research requires more longitudinal studies.
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Affiliation(s)
- Molly C Basch
- Division of Pain Medicine, Department of Anesthesiology, Perioperative and Pain Medicine, Boston Children’s Hospital, Boston University, Boston, MA, USA
- Boston Children’s Hospital, Center for Pain and the Brain, PAIN Research Group, Boston University, Boston, MA, USA
| | - Erika T Chow
- Division of Pain Medicine, Department of Anesthesiology, Perioperative and Pain Medicine, Boston Children’s Hospital, Boston University, Boston, MA, USA
- Boston University School of Medicine, Boston University, Boston, MA, USA
| | - Deirdre E Logan
- Division of Pain Medicine, Department of Anesthesiology, Perioperative and Pain Medicine, Boston Children’s Hospital, Boston University, Boston, MA, USA
- Department of Psychiatry, Harvard Medical School, Boston, MA, USA
| | - Neil L Schechter
- Department of Psychiatry, Harvard Medical School, Boston, MA, USA
| | - Laura E Simons
- Division of Pain Medicine, Department of Anesthesiology, Perioperative and Pain Medicine, Boston Children’s Hospital, Boston University, Boston, MA, USA
- Boston Children’s Hospital, Center for Pain and the Brain, PAIN Research Group, Boston University, Boston, MA, USA
- Department of Psychiatry, Harvard Medical School, Boston, MA, USA
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Twisk FNM. Accurate diagnosis of myalgic encephalomyelitis and chronic fatigue syndrome based upon objective test methods for characteristic symptoms. World J Methodol 2015; 5:68-87. [PMID: 26140274 PMCID: PMC4482824 DOI: 10.5662/wjm.v5.i2.68] [Citation(s) in RCA: 15] [Impact Index Per Article: 1.5] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 11/05/2014] [Revised: 02/10/2015] [Accepted: 05/27/2015] [Indexed: 02/06/2023] Open
Abstract
Although myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) are considered to be synonymous, the definitional criteria for ME and CFS define two distinct, partially overlapping, clinical entities. ME, whether defined by the original criteria or by the recently proposed criteria, is not equivalent to CFS, let alone a severe variant of incapacitating chronic fatigue. Distinctive features of ME are: muscle weakness and easy muscle fatigability, cognitive impairment, circulatory deficits, a marked variability of the symptoms in presence and severity, but above all, post-exertional “malaise”: a (delayed) prolonged aggravation of symptoms after a minor exertion. In contrast, CFS is primarily defined by (unexplained) chronic fatigue, which should be accompanied by four out of a list of 8 symptoms, e.g., headaches. Due to the subjective nature of several symptoms of ME and CFS, researchers and clinicians have questioned the physiological origin of these symptoms and qualified ME and CFS as functional somatic syndromes. However, various characteristic symptoms, e.g., post-exertional “malaise” and muscle weakness, can be assessed objectively using well-accepted methods, e.g., cardiopulmonary exercise tests and cognitive tests. The objective measures acquired by these methods should be used to accurately diagnose patients, to evaluate the severity and impact of the illness objectively and to assess the positive and negative effects of proposed therapies impartially.
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Haney E, Smith MB, McDonagh M, Pappas M, Daeges M, Wasson N, Nelson HD. Diagnostic Methods for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Systematic Review for a National Institutes of Health Pathways to Prevention Workshop. Ann Intern Med 2015; 162:834-40. [PMID: 26075754 DOI: 10.7326/m15-0443] [Citation(s) in RCA: 56] [Impact Index Per Article: 5.6] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 11/22/2022] Open
Abstract
BACKGROUND The diagnosis of myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS) is based on clinical criteria, yet there has been no consensus regarding which set of criteria best identifies patients with the condition. The Institute of Medicine has recently proposed a new case definition and diagnostic algorithm. PURPOSE To review methods to diagnose ME/CFS in adults and identify research gaps and needs for future research. DATA SOURCES MEDLINE, PsycINFO, and Cochrane databases (January 1988 to September 2014); clinical trial registries; and reference lists. STUDY SELECTION English-language studies describing methods of diagnosis of ME/CFS and their accuracy. DATA EXTRACTION Data on participants, study design, analysis, follow-up, and results were extracted and confirmed. Study quality was dual-rated by using prespecified criteria, and discrepancies were resolved through consensus. DATA SYNTHESIS Forty-four studies met inclusion criteria. Eight case definitions have been used to define ME/CFS; a ninth, recently proposed by the Institute of Medicine, includes principal elements of previous definitions. Patients meeting criteria for ME represent a more symptomatic subset of the broader ME/CFS population. Scales rating self-reported symptoms differentiate patients with ME/CFS from healthy controls under study conditions but have not been evaluated in clinically undiagnosed patients to determine validity and generalizability. LIMITATIONS Studies were heterogeneous and were limited by size, number, applicability, and methodological quality. Most methods were tested in highly selected patient populations. CONCLUSION Nine sets of clinical criteria are available to define ME/CFS, yet none of the current diagnostic methods have been adequately tested to identify patients with ME/CFS when diagnostic uncertainty exists. More definitive studies in broader populations are needed to address these research gaps.
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Affiliation(s)
- Elizabeth Haney
- From Oregon Health & Science University and Providence Cancer Center, Providence Health and Services Oregon, Portland, Oregon
| | - M.E. Beth Smith
- From Oregon Health & Science University and Providence Cancer Center, Providence Health and Services Oregon, Portland, Oregon
| | - Marian McDonagh
- From Oregon Health & Science University and Providence Cancer Center, Providence Health and Services Oregon, Portland, Oregon
| | - Miranda Pappas
- From Oregon Health & Science University and Providence Cancer Center, Providence Health and Services Oregon, Portland, Oregon
| | - Monica Daeges
- From Oregon Health & Science University and Providence Cancer Center, Providence Health and Services Oregon, Portland, Oregon
| | - Ngoc Wasson
- From Oregon Health & Science University and Providence Cancer Center, Providence Health and Services Oregon, Portland, Oregon
| | - Heidi D. Nelson
- From Oregon Health & Science University and Providence Cancer Center, Providence Health and Services Oregon, Portland, Oregon
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Picariello F, Ali S, Moss-Morris R, Chalder T. The most popular terms for medically unexplained symptoms: the views of CFS patients. J Psychosom Res 2015; 78:420-426. [PMID: 25791667 DOI: 10.1016/j.jpsychores.2015.02.013] [Citation(s) in RCA: 36] [Impact Index Per Article: 3.6] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 10/21/2014] [Revised: 02/18/2015] [Accepted: 02/19/2015] [Indexed: 11/28/2022]
Abstract
OBJECTIVE Medically unexplained symptoms/syndromes are common, highly distressing and are often associated with profound disability. One of the controversies surrounding this area relates to which umbrella term should be used to group such symptoms. The purpose of this research was to establish the preferences of patients with chronic fatigue syndrome (CFS) for an umbrella term for medically unexplained symptoms. METHODS A cross-sectional mixed methods survey design was used. Participants were asked to indicate their three most preferred terms out of a list of commonly used terms and to provide any extra comments. Frequency analysis was employed to look at the preferences of terms for each rank. Comments were analysed using principles of inductive thematic analysis. RESULTS Eighty-seven patients with CFS completed a self-report survey. The term "Persistent Physical Symptoms" was the most popular first choice term chosen by 20.7% of patients. Terms containing the word "physical" were consistently more likely to be chosen. Three main themes emerged from the thematic analysis: 1) Physical nature of the illness, 2) Stigma, and 3) Evaluation of the terms, giving a more in-depth understanding of the findings. CONCLUSION According to CFS patients, an umbrella term has to reflect the physical experience of MUS.
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Affiliation(s)
- Federica Picariello
- King's College London, United Kingdom; South London and Maudsley NHS Foundation Trust, United Kingdom
| | - Sheila Ali
- South London and Maudsley NHS Foundation Trust, United Kingdom
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Jason LA. Small wins matter in advocacy movements: giving voice to patients. AMERICAN JOURNAL OF COMMUNITY PSYCHOLOGY 2012; 49:307-316. [PMID: 21858612 DOI: 10.1007/s10464-011-9457-7] [Citation(s) in RCA: 9] [Impact Index Per Article: 0.7] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Subscribe] [Scholar Register] [Indexed: 05/31/2023]
Abstract
In this article, the various players are delineated in a story of a contested illness and patient advocacy, played out within the corridors of federal power. It is suggested that the mistreatment and negative attitudes that health care providers and others have towards those with chronic fatigue syndrome (CFS) is possibly due to the social construction of this illness as being a "Yuppie flu" disease. Institutional factors are identified that created these norms and attributions, as well as the multiple stakeholders and constituent groups invested in exerting pressure on policy makers to effect systemic change. This article also provides examples of how the field of Community Psychology, which is fundamentally committed to/based on listening to and giving voice to patients, is broadly relevant to patient activism communities. This approach focused, over time, on epidemiological studies, the name, the case definition, and ultimately the change in CFS leadership at the Centers for Disease Control and Prevention. Keys to this "small wins" approach were coalition building, use of "oppositional experts" (professionals in the scientific community who support patient advocacy goals) to challenge federal research, and taking advantage of developing events/shifts in power. Ultimately, this approach can result in significant scientific and policy gains, and changes in medical and public perception of an illness.
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Jason LA, Richman JA. How Science Can Stigmatize: The Case of Chronic Fatigue Syndrome. ACTA ACUST UNITED AC 2011. [DOI: 10.3109/10573320802092146] [Citation(s) in RCA: 10] [Impact Index Per Article: 0.7] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/13/2022]
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Horton-Salway M. The ‘ME Bandwagon’ and other labels: Constructing the genuine case in talk about a controversial illness. BRITISH JOURNAL OF SOCIAL PSYCHOLOGY 2010; 46:895-914. [PMID: 17535450 DOI: 10.1348/014466607x173456] [Citation(s) in RCA: 15] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/12/2022]
Abstract
This paper examines the discourse of morality surrounding 'ME' as a contested illness, looking at how GPs and ME group members differentiate between the category of 'genuine ME sufferer' and the 'bandwagon'. 'Jumping on the bandwagon' is a metaphor commonly used to describe the activity of 'following the crowd' in order to gain an advantage. This discursive analysis shows how 'bandwagon' categories are constructed in contrast to the category of genuine sufferer. People who jump on the bandwagon are accused of matching their symptoms to media stereotypes, adopting trendy illnesses ('fads'), or using 'tickets' to avoid facing up to psychological illnesses. Both GPs and ME group members construct a differential moral ordering of physical and psychological illness categories, where the latter assumes a lesser status. The paper concludes that against a background of medical uncertainty and controversy, the 'bandwagon' and other derogatory labels function as contrast categories that work to establish the existence of 'ME' as a genuine illness.
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Jason LA, Holbert C, Torres-Harding S, Taylor RR, LeVasseur JJ, Breitinger P, LaBarbera D, Siegel L. Chronic Fatigue Syndrome versus Chronic Neuroendocrineimmune Dysfunction Syndrome. ACTA ACUST UNITED AC 2008; 18:43-55. [PMID: 15189800 DOI: 10.1300/j045v18n01_03] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.1] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/18/2022]
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.
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Cho HJ, Menezes PR, Bhugra D, Wessely S. The awareness of chronic fatigue syndrome: a comparative study in Brazil and the United Kingdom. J Psychosom Res 2008; 64:351-5. [PMID: 18374733 DOI: 10.1016/j.jpsychores.2007.12.006] [Citation(s) in RCA: 9] [Impact Index Per Article: 0.5] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 10/02/2007] [Revised: 12/10/2007] [Accepted: 12/18/2007] [Indexed: 10/22/2022]
Abstract
OBJECTIVE While in many Western affluent countries there is widespread awareness of chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME), little is known about the awareness of CFS/ME in low- and middle-income countries. We compared the awareness of CFS in Brazil and the United Kingdom. METHODS Recognition and knowledge of CFS were assessed among 120 Brazilian specialist doctors in two major university hospitals using a typical case vignette of CFS. We also surveyed 3914 and 2435 consecutive attenders in Brazilian and British primary care clinics, respectively, concerning their awareness of CFS. RESULTS When given a typical case vignette of CFS, only 30.8% [95% confidence interval (CI), 22.7-39.9%] of Brazilian specialist doctors mentioned chronic fatigue or CFS as a possible diagnosis, a proportion substantially lower than that observed in Western affluent countries. Similarly, only 16.2% (95% CI, 15.1-17.4%) of Brazilian primary care attenders were aware of CFS, in contrast to 55.1% (95% CI, 53.1-57.1%) of their British counterparts (P<.001). This difference remained highly significant after controlling for patients' sociodemographic and socioeconomic characteristics (P<.001). CONCLUSIONS The awareness of CFS was substantially lower in Brazil than the United Kingdom. The observed difference may influence patients' help-seeking behavior and both doctors' and patients' beliefs and attitudes in relation to fatigue-related syndromes. Attempts to promote the awareness of CFS should be considered in Brazil, but careful plans are required to ensure the delivery of sound evidence-based information.
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Affiliation(s)
- Hyong Jin Cho
- Department of Psychological Medicine, Institute of Psychiatry, King's College London, United Kingdom.
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Jason LA, Corradi K, Torres-Harding S, Taylor RR, King C. Chronic fatigue syndrome: the need for subtypes. Neuropsychol Rev 2005; 15:29-58. [PMID: 15929497 DOI: 10.1007/s11065-005-3588-2] [Citation(s) in RCA: 85] [Impact Index Per Article: 4.3] [Reference Citation Analysis] [Abstract] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 01/04/2023]
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.
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Page LA, Wessely S. Medically unexplained symptoms: exacerbating factors in the doctor-patient encounter. J R Soc Med 2003. [PMID: 12724431 PMCID: PMC539474 DOI: 10.1258/jrsm.96.5.223] [Citation(s) in RCA: 92] [Impact Index Per Article: 4.2] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/18/2022] Open
Affiliation(s)
- L A Page
- Department of Psychological Medicine, Institute of Psychiatry, De Crespigny Park, London SE5 8AF, UK.
| | - S Wessely
- Academic Department of Psychological Medicine, Guy's, King's and St Thomas'
School of Medicine and the Institute of Psychiatry, London, UK
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Affiliation(s)
- Baruch Fischhoff
- Department of Social and Decision Sciences, Carnegie Mellon University, Pittsburgh, PA 15213, USA
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Jason LA, Eisele H, Taylor RR. Assessing attitudes toward new names for chronic fatigue syndrome. Eval Health Prof 2001; 24:424-35. [PMID: 11817200 DOI: 10.1177/01632780122034993] [Citation(s) in RCA: 8] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/17/2022]
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.
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Taylor RR, Jason LA, Kennedy CL, Friedberg F. Effect of physician-recommended treatment on mental health practitioners' attributions for chronic fatigue syndrome. Rehabil Psychol 2001. [DOI: 10.1037/0090-5550.46.2.165] [Citation(s) in RCA: 8] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/08/2022]
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