Discussion
Our study identified illness label, level of functionality, and lack of comorbidities as risk factors related to suicide among patients with ME/CFS. We found significantly higher rates of suicide for patients identifying with the illness label CFS, for patients with a moderate overall level of functionality, and for patients without comorbid diagnoses. Pain, however, was not significant as a risk factor between those who died by suicide versus those who died of other causes.
Those who utilized the CFS label were more likely to die of suicide. CFS is a stigmatizing term as this label only focuses on the symptom of ‘fatigue’ despite the presence of many other debilitating symptoms. Terms with the acronym ME suggest physiological aspects of the illness, as “myalgic” refers to muscle pain, whereas “encephalomyelitis” means inflammation of the brain and spinal cord (Jason, Paavola, et al., 2010). Several studies examining the attitudes associated with various labels found that medical students and college students have a more physiological explanation of this illness when using the term ME as opposed to CFS (Jason et al., 2002, 2004). What individuals associate an illness with, or how it is labeled, has a direct effect on illness treatment and outcomes (Wojcik et al., 2011). Perceptions of illnesses sometimes evolve (i.e., favoring physiological over mental causes), and subsequent biological findings associated with medical advancements contribute to these changes (Wojcik et al., 2011). Unfortunately, our study did not have a direct measure of stigma, but it is highly likely that the term CFS is stigmatizing to many patients with ME/CFS.
We found that patients who were housebound and demonstrated limited overall functioning were at the greatest risk for suicide. Patients who had enough energy and physical functioning to leave their bed, but who did not have the energy for activities outside the house, were at the greatest risk for suicide. This is compatible with Joiner (2007) who found that one’s capability to overcome physical limitations and fear associated with self-harm significantly increases one’s ability to carry out a lethal suicide attempt. It is possible that those patients who were bedbound and with the lowest level of physical functioning might have also wished to end their lives, but were without the physical energy levels required to accomplish this. In regard to the highest functioning group of patients, it is possible that although they possessed the physical capability to successfully engage in a suicide attempt, their ability to participate in social and vocational commitments, even if limited, served as protective factors for suicidal ideation and suicide (McLean et al., 2008).
In our sample, high levels of pain endorsement were not significantly different from the suicide and non-suicide groups. This suggests that pain may not be a primary factor contributing to one’s decision to die of suicide, whereas other factors such as thwarted belongingness, or perceived burdensomeness, may have greater influences on decisions to end life (Wilson et al., 2013). There might also be a threshold factor where above a certain amount of pain, there are comparable levels of difficulties, and that all the patients had reached this level.
We also found that those without comorbid illnesses, both prior to and following the onset of ME/ CFS, were at greater risk of suicide than those patients diagnosed with one or more comorbidities. Findings of this nature are unique in comparison to current literature that has found suicide risk to be greater for patients experiencing multiple illnesses (Druss & Pincus, 2000; Juurlink et al., 2004). However, for an illness such as ME/CFS that is largely misunderstood, it is possible that a second illness may serve as a social buffer. That is, a comorbid illness may allow the patient to present an illness label to others that is more acceptable and has fewer barriers to accessing support and resources (Jutel, 2015).
There were several limitations to the current study. The sample of participants recruited was small, of which only 17 indicated suicide as the cause of death. Still, because there are so few investigations of risk factors for suicide among those with ME/CFS, this preliminary study could provide investigators with ideas for future studies with larger samples. A second limitation is that the study was conducted following the deaths of each patient. Therefore, data were collected from close family members and friends, rather than directly from the deceased individuals. Because information was reported by way of a second party, data obtained might not match the conditions and experiences of the patients themselves. In addition, data were collected through an online survey. Future investigations could attempt to conduct assessments in person with patients who are critically ill and close to death so as to fully apprehend the feelings and experiences of those effected. However, collecting this type of data might be particularly difficult for those experiencing suicidal ideation.
In summary, this study identified label attribution, functional deficits, and the absence of comorbidities as possible risk factors for suicide in patients with ME/CFS. These findings might be due to the debilitating nature of this illness as well as the challenges encountered in regard to accessing care and convincing others of the seriousness of their illness. The findings highlight the importance of health care professionals developing ways to counteract these risk factors when interacting with patients and their family members or friends, particularly through efforts to legitimize their illness and provide needed medical resources, social resources, and support.
---
