Tag: stigma

The Journey Towards Becoming Diagnosed with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome – Patients’ Experiences

Abstract:

Background: Myalgic encephalomyelitis/chronic fatigue syndrome is a disease that negatively affects patients’ quality of life. Previous research has shown that these patients are commonly not taken seriously when seeking medical attention.

Aim: The aim was to examine the experiences of patients with ME/CFS regarding their interaction with Swedish primary healthcare professionals.

Method: The study used a qualitative and exploratory design, taking place in a specialist clinic in Sweden. Data consisted of interviews with 13 patients with ME/CFS, which were analysed using content analysis.

Findings: For patients, it was Feeling truly connected during the period before they received a diagnosis. Time is an important factor, and in the phase from initial symptoms to diagnosis, Knowledge is power.

Conclusion: Patients with ME/CFS were met with different levels of knowledge and interest from healthcare professionals. These challenges might be related to the relative unawareness and lack of knowledge of the disease and the underlying cultural scepticism still present.

Source: Bo Christer Bertilson., et al. “The Journey Towards Becoming Diagnosed with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome – Patients’ Experiences”. EC Neurology 14.2 (2022): 49-56.  https://www.ecronicon.com/ecne/pdf/ECNE-14-01012.pdf (Full text as PDF file)

Long Covid at the crossroads: Comparisons and lessons from the treatment of patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)

Abstract:

Whilst parallels have been drawn between Long Covid and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), there is a well-documented history of negative stereotyping and marginalisation of patients with ME/CFS. A socio-politically oriented comparison of scientific, clinical and societal responses to Long Covid and ME/CFS is thus important to prevent similar harms arising among Long Covid patients. We identify four reasons for injustices in the treatment of ME/CFS patients, and discuss the risk of Long Covid following a similar trajectory. We conclude with policy and practice recommendations to help prevent such injustices arising again, including consideration of critical reflexivity in medical education.

Source: Hunt J, Blease C, Geraghty KJ. Long Covid at the crossroads: Comparisons and lessons from the treatment of patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). J Health Psychol. 2022 Mar 27:13591053221084494. doi: 10.1177/13591053221084494. Epub ahead of print. PMID: 35341334. https://pubmed.ncbi.nlm.nih.gov/35341334/

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)

The circuit of symbolic violence in chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (ME) (I): A preliminary study

Abstract:

Objective: How can it be that a disease as serious as CFS affecting such a large number of people could be so unknown to the general population? The answer given to this question is based on Pierre Bourdieu’s analyzes of symbolic violence.

Method: The “letters to the editor” by CFS patients to three national Spanish newspapers were subjected to various qualitative and quantitative analyzes.

Results: Based on the qualitative analyzes and their theoretical interpretation, 13 mechanisms of symbolic violence were identified: non-recognition, institutionalized un-care, condescension, authorized imposition of illegitimate verdicts, delegitimization, disintegration, imposition of discourse, euphemization, silencing, invisibilization, isolation, uncommunication, and self-blaming. Multiple Correspondence Analysis made it possible to identify that the structural mechanisms (non-recognition, disintegration) were combined with the most symbolic ones, which came to the forefront producing the observed effects of symbolic violence. The 13 clusters obtained in the Agglomerative Hierarchical Clustering confirmed this result.

Source: Gimeno Torrent X. The circuit of symbolic violence in chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (ME) (I): A preliminary study. Health Care Women Int. 2021 Jun 14:1-36. doi: 10.1080/07399332.2021.1925900. Epub ahead of print. PMID: 34125009. https://pubmed.ncbi.nlm.nih.gov/34125009/

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