Tag: stigma

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.

© 2018 The Authors Health Expectations published by John Wiley & Sons Ltd.

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

Confirmatory factor analysis of a myalgic encephalomyelitis and chronic fatigue syndrome stigma scale

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.

Source: Terman JM, Awsumb JM, Cotler J, Jason LA. Confirmatory factor analysis of a myalgic encephalomyelitis and chronic fatigue syndrome stigma scale. J Health Psychol. 2018 Sep 5:1359105318796906. doi: 10.1177/1359105318796906. [Epub ahead of print] https://www.ncbi.nlm.nih.gov/pubmed/30183363

Netflix and Hill: The True Story Behind “Afflicted”

Reprinted with the kind permission of Jamison Hill.

By Jamison Hill

On August 10th Netflix released Afflicted, a seven-episode series in which I appear with six other chronically ill patients. Though I had high hopes for the series, and some parts were accurate, it has ultimately caused damage to the chronic illness community, portraying many of the participants as hypochondriacs and the illnesses they face as psychosomatic rather than their true physical nature.

I have debated about writing this blog post because in being honest about my experiences with Afflicted, I felt that might diminish my story and the stories of my fellow participants. I also didn’t want to diminish the work of some truly talented and genuine people who worked on the series and just happened to land a bad gig. But above all else I feel like this is an unjust outcome that needs to be brought to the public’s attention.

I’m not victimizing myself, or anyone else, but I am incredibly disappointed with the scope and slant of the overall series.

Nevertheless, I am still proud of my part in the series. There were some truly memorable moments to my story, glimpses into my life that I’m so grateful to have documented and to be able to revisit in the future. When filming commenced I had been bedridden for two years and was mostly unable to speak but for a few short, whispered words each day. The year and a half prior to that I had been too sick to chew food and had to survive on IV fluids and liquefied meals.

When I was approached about being in Afflicted, I had already written several essays about my fight for survival, but having it told visually was appealing to me. However, this meant giving control of the narrative to people who, unbeknownst to me at the time, had a dishonest agenda. That’s why, perhaps out of sheer instinct, I worked extremely hard to make sure my story was told in the best possible light. Now, after watching the finished product, I feel it very easily could have gone the other way.

In the days following the show’s release I’ve wondered why my story turned out relatively well when others did not. Perhaps I was the most debilitated participant and because I usually couldn’t speak loud enough for the microphones to pick up my voice, the producers decided to take it easy on me. It could also have been because, while on camera, I was fully aware that although the filmmakers said they had good intentions, people with ulterior motives can seem altruistic if they say the right thing in the right situation.

Continue reading “Netflix and Hill: The True Story Behind “Afflicted”” →

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. 2018 Jul 1:1359105318785450. doi: 10.1177/1359105318785450. [Epub ahead of print] https://www.ncbi.nlm.nih.gov/pubmed/29992837

Are ME/CFS Patient Organizations “Militant”?

Abstract:

Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) is a contested illness category. This paper investigates the common claim that patients with ME/CFS—and by extension, ME/CFS patient organizations (POs)—exhibit “militant” social and political tendencies. The paper opens with a history of the protracted scientific disagreement over ME/CFS. We observe that ME/CFS POs, medical doctors, and medical researchers exhibit clear differences in opinion over how to conceptualize this illness.

However, we identify a common trope in the discourse over ME/CFS: the claim of “militant” patient activism. Scrutinizing this charge, we find no compelling evidence that the vast majority of patients with ME/CFS, or the POs representing them, have adopted any such militant political policies or behaviours. Instead, we observe key strategic similarities between ME/CFS POs in the United Kingdom and the AIDs activist organizations of the mid-1980s in the United States which sought to engage scientists using the platform of public activism and via scientific publications.

Finally, we explore the contours of disagreement between POs and the medical community by drawing on the concept of epistemic injustice. We find that widespread negative stereotyping of patients and the marginalization and exclusion of patient voices by medical authorities provides a better explanation for expressions of frustration among patients with ME/CFS.

Source: Blease, C. & Geraghty, K.J. Are ME/CFS Patient Organizations “Militant”? Bioethical Inquiry (2018). https://doi.org/10.1007/s11673-018-9866-5

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: Stephanie L. McManimen, Damani McClellan, Jamie Stoothoff, Leonard A. Jason. Effects of unsupportive social interactions, stigma, and symptoms on patients with myalgic encephalomyelitis and chronic fatigue syndrome. Journal of Community Psychology, May 2018. https://doi.org/10.1002/jcop.21984

Research Volunteers’ Attitudes Toward Chronic Fatigue Syndrome and Myalgic Encephalomyelitis

Abstract:

Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) are stigmatizing illnesses characterized by cognitive difficulties, post-exertional malaise, unrefreshing sleep, and other symptoms. Patients are often incapacitated and stigmatized as having a psychological disorder.

The Chronic Fatigue Attitudes Test (CAT) assesses stigmatizing views toward individuals with Chronic Fatigue Syndrome, however, there is little research examining factors that may account for variation in stigmatizing attitudes toward this group. We examined CAT scores among college age research volunteers (N = 90), hypothesizing that exposure to information about ME and CFS as a result of volunteering on a ME and CFS-related research project would be associated with less stigmatizing attitudes compared to volunteers on unrelated projects.

Findings indicated that ME and CFS research volunteers expressed less stigmatizing attitudes. Educational efforts aiming to disseminate accurate information about ME and CFS may mitigate stigma and the experience of stigma among individuals with ME and CFS.

Source: Nehrke PI, Fox PA, Jason LA. Research Volunteers’ Attitudes Toward Chronic Fatigue Syndrome and Myalgic Encephalomyelitis. Neurology (ECronicon). 2017;7(4):172-178. Epub 2017 Aug 16.  https://www.ncbi.nlm.nih.gov/pubmed/29662969

Stigma in Myalgic Encephalomyelitis and its association with functioning

Abstract:

Background: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is categorised by the World Health Organisation as a neurological condition. It is poorly understood and people with ME/CFS report experiencing stigma. Research suggests that stigma might be linked to functional ability.

Purpose: This study investigated the relationship of stigma to factors associated with functional ability. Additionally, the use of standardised measures allowed for comparison of stigma severity in ME/CFS to other neurological conditions.

Method: A convenience sample of 206 people diagnosed with ME/CFS completed mailed or online self-report standardised measures of stigma, health, ability to participate in social roles and activities, and their satisfaction with this ability. Findings were compared to published data for three neurological conditions.

Results: Stigma scores were significantly correlated (p < .0001) with all self-report health and functional measures (range: −.30 to −.42). The ME/CFS sample reported higher levels of stigma (d = 1.30) and lower levels of health (d = 1.86–2.16) and functioning (d = 1.63) than the comparison conditions.

Conclusions: Consistent with studies over the last two decades, people with ME/CFS report higher levels of stigma when compared to the other conditions. The stigma is not just associated with health but also with specific measures of functional ability.

Source: Don M. Baken,Shane T. Harvey,David L. Bimler &Kirsty J. Ross., Stigma in Myalgic Encephalomyelitis and its association with functioning. Fatigue: Biomedicine, Health & Behavior Vol. 6, Iss. 1, 2018.  http://www.tandfonline.com/action/showCitFormats?doi=10.1080%2F21641846.2018.1419553

Contesting the psychiatric framing of ME/CFS

Abstract:

ME/CFS is a medically contested illness and its understanding, framing and treatment has been the subject of heated debate. This paper examines why framing the condition as a psychiatric issue—what we refer to as ‘psychiatrisation’—has been so heavily contested by patients and activists. We argue that this contestation is not simply about stigmatising mental health conditions, as some have suggested, but relates to how people diagnosed with mental illness are treated in society, psychiatry and the law. We highlight the potentially harmful consequences of psychiatrisation which can lead to people’s experiential knowledge being discredited. This stems, in part, from a psychiatric-specific form of ‘epistemic injustice’ which can result in unhelpful, unwanted and forced treatments.

This understanding helps explain why the psychiatrisation of ME/CFS has become the focus of such bitter debate and why psychiatry itself has become such a significant field of contention, for both ME/CFS patients and mental health service users/survivors. Notwithstanding important differences, both reject the way psychiatry denies patient explanations and understandings, and therefore share a collective struggle for justice and legitimation. Reasons why this shared struggle has not resulted in alliances between ME and mental health activists are noted.

Source: Helen Spandler, Meg Allen. Contesting the psychiatric framing of ME/CFS. Social Theory & Health. First Online: 16 August 2017. https://link.springer.com/article/10.1057/s41285-017-0047-0