stigma – Page 3 – American ME and CFS Society

Stigma perceived by patients with functional somatic syndromes and its effect on health outcomes – A systematic review

Abstract:

Background: Patients with functional somatic syndromes (FSS) experience stigma which arguably affects their health.

Aim: To determine the presence of perceived stigma and its effects on physical and mental health in patients with FSS compared to patients with comparable explained conditions.

Methods: A comprehensive search of PubMed, Embase, PsycINFO, CINAHL and Cochrane Library was performed to select studies focusing on stigma perceived by patients with irritable bowel syndrome (IBS), fibromyalgia (FM) or chronic fatigue syndrome (CFS), comparing these patients to patients with comparable but explained conditions.

Results: We identified 1931 studies after duplicate removal. After screening we included eight studies: one study about all three FSS, one about IBS, five about FM and one about CFS. We found that patients with IBS did not consistently experience higher levels of stigma than those with a comparable explained condition. Patients with CFS and FM experienced higher levels of stigma compared to patients with comparable explained conditions. All studies showed a correlation between stigma and negative health outcomes.

Discussion: Patients with FSS experience stigma and negative health outcomes. However, experiencing stigma is not restricted to patients with FSS, as many patients with explained health conditions also experience stigma. Whether stigma has more negative health consequences in patients with FSS compared to patients with explained health conditions remains unclear and should be assessed in future research.

Source: Ko C, Lucassen P, van der Linden B, Ballering A, Olde Hartman T. Stigma perceived by patients with functional somatic syndromes and its effect on health outcomes – A systematic review. J Psychosom Res. 2022 Jan 6;154:110715. doi: 10.1016/j.jpsychores.2021.110715. Epub ahead of print. PMID: 35016138. https://pubmed.ncbi.nlm.nih.gov/35016138/

Causal attributions and perceived stigma for myalgic encephalomyelitis/chronic fatigue syndrome

Abstract:

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a chronic disease with the hallmark symptom of post-exertional malaise. Evidence for physiological causes is converging, however, currently no diagnostic test or biomarker is available. People with ME/CFS experience stigmatization, including the perception that the disease is psychosomatic.

In a sample of 499 participants with self-diagnosed ME/CFS, we investigated perceived stigma as a pathway through which perceived others’ causal attributions relate to lower satisfaction with social roles and activities and functional status. Higher perceived attributions by others to controllable and unstable causes predicted lower health-related and social outcomes via higher perceived stigma.

Source: Froehlich L, Hattesohl DB, Cotler J, Jason LA, Scheibenbogen C, Behrends U. Causal attributions and perceived stigma for myalgic encephalomyelitis/chronic fatigue syndrome. J Health Psychol. 2021 Jul 9:13591053211027631. doi: 10.1177/13591053211027631. Epub ahead of print. PMID: 34240650. https://journals.sagepub.com/doi/10.1177/13591053211027631# (Full text)

Suicidal ideation in non-depressed individuals: The effects of a chronic, misunderstood illness

Abstract:

Chronic illness is a risk factor for suicide but is often explained with depression. Research has shown an increased suicide rate in patients with myalgic encephalomyelitis and chronic fatigue syndrome, but specific risk factors have been unexplored. We qualitatively analyzed responses from 29 patients who endorsed suicidal ideation but did not meet depression criteria. Two themes were developed: (1) feeling trapped and (2) loss of self, loss of others, stigma and conflict. Myalgic encephalomyelitis and chronic fatigue syndrome caused patients severe disability, restructured their lives, and inflicted serious pain. Participants emphasized that they were not depressed, but felt trapped by the lack of treatments available.

Source: Devendorf AR, McManimen SL, Jason LA. Suicidal ideation in non-depressed individuals: The effects of a chronic, misunderstood illness. J Health Psychol. 2020 Nov-Dec;25(13-14):2106-2117. doi: 10.1177/1359105318785450. Epub 2018 Jul 11. PMID: 29992837. https://pubmed.ncbi.nlm.nih.gov/29992837/

Overcoming this is going to be difficult: Suicide risk, stigma, and chronic fatigue syndrome

Our findings revealed two broad themes in patients’ experiences with ME and CFS and suicidal ideation. The first theme captures how patients felt trapped by their illness. Many patients said they had no access to adequate resources, like a supportive friend or physician, to help them manage their illness. This sentiment was coupled with feeling hopeless about recovering from their disorder. Patients stated that many physicians wrongly think that ME and CFS are mental health conditions – when they are physical illnesses – which leads physicians to recommend inappropriate treatments like talk therapy.

Read the full article HERE.

Original Article: Devendorf A. R., McManimen S. L., Jason L. A. Suicidal ideation in non-depressed individuals: The effects of a chronic, misunderstood illness. Journal of Health Psychology. 25(13-14), 2106-2117 (2020). https://pubmed.ncbi.nlm.nih.gov/29992837/

Risk Factors for Suicide in Chronic Fatigue Syndrome

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.

Source: Johnson ML, Cotler J, Terman JM, Jason LA. Risk factors for suicide in chronic fatigue syndrome [published online ahead of print, 2020 Jun 12]. Death Stud. 2020;1‐7. doi:10.1080/07481187.2020.1776789

Modern-Day Relics of Psychiatry

Abstract:

Constantly shifting cultural views influence public perceptions of psychiatric diagnoses, sometimes accommodated by changes in diagnostic terminology. Evolving scientific knowledge of the era is at times used to justify and support mental illnesses. Too often, however, remasked nomenclatures fail to alter social stigma, in part because political arguments are used. Scientific validations of variant behaviors as symptoms with a pathologic status are unfortunately overshadowed.

Examples of cultural bias effects on recurring diagnostic challenges illustrate a need for scientific validation. Renaming fails to improve stigma or diagnostic clarity. For example, neurasthenia, or nervous exhaustion, was attributed to fast-paced urban life through the late 1970s. Its symptoms are now largely, to no real advantage, retitled as chronic fatigue syndrome. Diagnoses like “hysteria” have evolved into histrionic personality disorder and somatoform spectrum disorders, although less as a result of demonic possession or a “wandering uterus.” Decriminalized and depathologized homosexuality remains a political football, where religious “sin” conceptualizations have not been displaced by studies documenting healthy adjustments among groups with diverse sexual orientations and preferences.

Each of these remains severely socially stigmatized. The pseudoscience of “drapetomania,” once used to rationalize and pathologize a slave’s freedom, is perceived now as psychiatric incarcerations of mentally healthy individuals, more commonly in totalitarian regimes-a politicization of stigma. Research reviews and funding efforts need to emphasize a sound basis for individuals caught in perpetuated diagnostic challenges, not remedied by simple shifts in nomenclature.

Source: Tripathi S, Messias E, Spollen J, Salomon RM. Modern-Day Relics of Psychiatry. J Nerv Ment Dis. 2019 Sep;207(9):701-704. doi: 10.1097/NMD.0000000000001059. https://www.ncbi.nlm.nih.gov/pubmed/31464983

Fibromyalgia, Chronic Fatigue Syndrome, and Multiple Chemical Sensitivity: Illness Experiences

Abstract:

Fibromyalgia, chronic fatigue syndrome/myalgic encephalomyelitis, and multiple chemical sensitivity can be considered contested illnesses. The questioning of the status of these conditions as real diseases reduces feelings of legitimacy in those affected. The purpose of this study was to analyze subjectivity construction processes in people with these diseases.

A qualitative exploratory study was conducted from the perspective of hermeneutic phenomenology and ethnosociology. We used life stories for compiling data (13 informants were interviewed face-to-face), and sociological discourse analysis was developed. Three main categories were identified: (a) self and grieving; (b) images and practices relating to fibromyalgia, chronic fatigue syndrome/myalgic encephalomyelitis, and multiple chemical sensitivity; and (c) relationships with health professionals.

This study shows that daily experiences of people living with these diseases are marked by stigmatization processes. The ultimate purpose of nursing care for people with these conditions should be to reduce their vulnerability and exclusion.

Source: Alameda Cuesta A, Pazos Garciandía Á, Oter Quintana C, Losa Iglesias ME. Fibromyalgia, Chronic Fatigue Syndrome, and Multiple Chemical Sensitivity: Illness Experiences. Clin Nurs Res. 2019 Mar 27:1054773819838679. doi: 10.1177/1054773819838679. [Epub ahead of print] https://www.ncbi.nlm.nih.gov/pubmed/30917692

Hope, disappointment and perseverance: Reflections of people with Myalgic encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Multiple Sclerosis participating in biomedical research. A qualitative focus group study

Abstract:

BACKGROUND: The Clinical Understanding and Research Excellence in ME/CFS group (CureME) at the London School of Hygiene & Tropical Medicine has supported and undertaken studies in immunology, genetics, virology, clinical medicine, epidemiology and disability. It established the UK ME/CFS Biobank (UKMEB), which stores data and samples from three groups: participants with ME/CFS, Multiple Sclerosis (MS) and healthy controls. Patient and public involvement have played a central role from its inception.

AIM: To explore the views of participants with ME/CFS and MS on CureME research findings, dissemination and future biomedical research priorities.

METHOD: Five ME/CFS and MS focus groups were conducted at two UK sites. Discussions were transcribed and analysed thematically.

RESULTS: A total of 28 UKMEB participants took part: 16 with ME/CFS and 12 with MS. Five themes emerged: (a) Seeking coherence: participants’ reactions to initial research findings; (b) Seeking acceptance: participants explore issues of stigma and validation; (c) Seeking a diagnosis: participants explore issues around diagnosis in their lives; (d) Seeking a better future: participants’ ideas on future research; and (e) Seeking to share understanding: participants’ views on dissemination. Focus groups perceived progress in ME/CFS and MS research in terms of “putting together a jigsaw” of evidence through perseverance and collaboration.

CONCLUSION: This study provides insight into the emotional, social and practical importance of research to people with MS and ME/CFS, suggesting a range of research topics for the future. Findings should inform biomedical research directions in ME/CFS and MS, adding patients’ voices to a call for a more collaborative research culture.

Source: Lacerda EM, McDermott C, Kingdon CC, Butterworth J, Cliff JM, Nacul L. Hope, disappointment and perseverance: Reflections of people with Myalgic encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Multiple Sclerosis participating in biomedical research. A qualitative focus group study. Health Expect. 2019 Jan 10. doi: 10.1111/hex.12857. [Epub ahead of print] https://www.ncbi.nlm.nih.gov/pubmed/30632248

Effects of unsupportive social interactions, stigma, and symptoms on patients with myalgic encephalomyelitis and chronic fatigue syndrome.

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.

Source: 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. J Community Psychol. 2018 Nov;46(8):959-971. doi: 10.1002/jcop.21984. Epub 2018 May 4. https://www.ncbi.nlm.nih.gov/pubmed/30311972