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.

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

“…In the parent study (McManimen et al, 2018), participants completed the DePaul Symptom Questionnaire (DSQ), SF-36 (Ware et al, 2000), the Unsupportive Social Interactions Inventory (USII, Ingram et al, 2001), and a battery of stigma scales (Lennon et al, 1989). The DSQ assessed symptom frequency and severity (Jason et al, 2010).…”

“…These results highlight the importance of investigating the risk and protective factors related to suicide in chronic illness populations like ME and CFS. Our research group recently surveyed 551 patients and found that 39.5 percent endorsed SI (McManimen et al, 2018). Interestingly, 17.9 percent of this group did not meet criteria for clinical depression and reported better functioning on the Role Emotional and Mental Health subscales of the Medical Outcomes Study 36-Item Short-Form Health Survey (SF-36; Ware et al, 2000) compared to patients meeting depression criteria and those meeting depression criteria and SI.…”

Health Care Responsibility and Compassion-Visiting the Housebound Patient Severely Affected by ME/CFS

“…ME/CFS is a complex and multifactorial disease; the World Health Organisation has described ME/CFS as a neurological disorder in the International Classification of Functioning, Disability and Health since 1969 [1]. It is also highly stigmatised [2], and there is currently neither a validated biomarker nor an effective treatment. Disease manifestation can vary between affected individuals, and some routine clinical examinations and blood tests may not evidence abnormalities [3].…”

“Honorable Toward Your Whole Self”: Experiences of the Body in Fatigued Breast Cancer Survivors

“…The dynamic interplay between interpersonal relationships, perceived moral implications of low energy states, and the disease experience of chronic fatigue has been well documented in CRF (Holley, 2000;Oktay et al, 2011) as well as a number of other chronic conditions associated with fatigue (Ware, 1992;Arroll and Howard, 2013;McManimen et al, 2018). In our study we found that social factors often led participants to dismiss their experiences of fatigue, viewing exhaustion as being reflective of personal or psychological weakness instead of a biological phenomena beyond their control.…”