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.

Over 800,000 people die from suicide every year worldwide, rendering suicide a serious public health issue (World Health Organization (WHO), 2015). According to estimates of psychological autopsies, 90 percent of people who die by suicide have a diagnosable psychiatric disorder (Cavanagh et al., 2003). Suicide prevention strategies have targeted psychiatric samples, but research has lacked in examining non-psychiatric populations. Physical illness, for instance, is a well-documented risk factor for suicide, but this relationship is often mediated by a psychiatric disorder like depression (Conwell et al., 2002). This study attempts to understand factors, other than a psychiatric disorder, that contribute to suicidal thoughts in patients with myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS).

ME and CFS are chronic, multisystem illnesses characterized by fatigue, post-exertional malaise, unrefreshing sleep, and neurocognitive deficits (Institute of Medicine (IOM), 2015). Despite the severity of these illnesses, patients have experienced notable stigma throughout the years. This stigma persists because the symptoms are invisible, the public lacks awareness of ME and CFS, and these illnesses were once considered depression variants (IOM, 2015). Controversy remains over which names to use for ME and CFS, or if these are distinct illnesses. Because they are often studied together and share overlapping symptoms, we use the terms ME and CFS. Patients with ME and CFS experience significant declines in quality of life, more so than experienced by patients with schizophrenia, depression, and cancer (Hvidberg et al., 2015), yet little research has examined suicide in this population.

While several studies have shown an increased risk of suicide-related mortality in patients with ME and CFS (Jason et al., 2006; McManimen et al., 2016; Roberts et al., 2016), the interpretation of these findings has been inconclusive. Roberts et al. (2016), for instance, found an increased suicide rate in CFS patients compared to the general population in England and Wales, but researchers have attributed this finding to untreated depression and anxiety (Kapur and Webb, 2016). However, only 60 percent of patients in Roberts et al.’s (2016) study had a lifetime history or current depression diagnosis, suggesting that other explanations exist. Chronic illness, alone, may be a sufficient risk for suicide. One study with over 36,000 participants found that chronic pain conditions increase the risk for suicidal ideation (SI) and suicidal behavior, while controlling for mental disorders and comorbidity (Ratcliffe et al., 2008).

Several factors other than depression may increase the suicide risk in ME and CFS. Patients experience a considerable decline from pre-illness states in multiple facets of life. ME and CFS decrease quality of life (Hvidberg et al., 2015), socially isolate patients, facilitate unsupportive social interactions (Ware, 1999), and cause significant work, disability, and financial losses (Taylor and Kielhofner, 2005). While the prognostic outlook for children is more optimistic (Beverley, 2005), adult recovery rates are low, which may exacerbate these factors. Cairns and Hotopf (2005) found a median recovery rate of 5 percent in 14 studies with clinical follow-ups; the median proportion of patients who improved during follow-up was 39.5 percent. A more recent review, which included treatment studies, found that recovery rates ranged from 0 to 66 percent depending on factors like sample characteristics and recovery criteria (Adamowicz et al., 2014).

The patient community has expressed discontent with two currently recommended treatments, cognitive–behavioral therapy (CBT) and graded exercise therapy (GET; Kindlon, 2011; ME Association, 2015). An analysis of two large patient surveys indicate that approximately 35 percent of patients improve following CBT and 25 percent of patients improve following GET. However, over half of the patients reported CBT being inappropriate to their needs and 78 percent of patients viewed GET as being inappropriate to their needs (Geraghty et al., 2019). Yet, few large-scale studies for other treatments are being explored.

These circumstances surrounding ME and CFS are likely to increase feelings of hopelessness, entrapment, and SI (Liu and Miller, 2014). Indeed, Jiménez-Ortiz (2015) found that lack of adequate medical care, delegitimizing interactions with physicians, financial instability, and dependence on family members for help with daily tasks were associated with an increased risk of suicide in patients. Such findings parallel other chronic illnesses (Breitbart et al., 2000; Cooper-Patrick et al., 1994; Joo et al., 2016). In a survey of 7589 individuals (Druss and Pincus, 2000), 16.3 percent endorsed a lifetime history of SI. However, 25.2 percent of respondents with a medical condition and 35.0 percent with two or more medical conditions had a lifetime history of SI. Controlling for depression and alcohol use, a general medical condition predicted a 1.3 times increased likelihood of endorsing SI compared to individuals without medical conditions. Similarly, Smith et al. (2004) investigated the prevalence of SI in chronic pain patients; 19 percent endorsed passive SI, 13 percent endorsed active SI, 5 percent had a current suicide plan, and 5 percent had attempted suicide. It should be emphasized that hopelessness, which is often conflated with depression, can be a distinct predictor of suicide (Breitbart et al., 2000).

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. This suggests that affective and psychological explanations are insufficient to explaining this group’s SI. To understand this non-depressed, SI group, we used a mixed-methods design to investigate factors, other than depression, that explain SI. Consistent with previous literature, we hypothesized that this patient group would report declines in quality of life, including losses in functioning, isolation, and hopelessness about their prognosis. However, because there is little research on this topic, our study is exploratory.

Methods

Design and participants

Data for this study were extracted from a project that examined illness severity, stigma, physician interactions, and depression (McManimen et al., 2018). The study was hosted online using Research Electronic Data Capture (Harris et al., 2009). Participants were recruited from patient advocacy websites, newsletters, social media, and Internet forums. To meet eligibility, respondents had to self-identify as having an ME or CFS diagnosis. In total, an international sample of 551 individuals participated. This study examines a subset (N = 39) of patients who endorsed SI but did not meet depression criteria.

We utilized a concurrent mixed-methods design (Creswell et al., 2011) to explore SI in non-depressed patients. After analyzing participants’ quantitative responses to the Beck Depression Inventory for Primary Care (BDI-PC; Beck et al., 1997), we qualitatively analyzed their open-ended responses that followed the survey. This approach, driven by a pragmatic research paradigm (Morgan, 2014), allowed us to elaborate and clarify the ostensible paradox of SI in non-depressed individuals (Johnson and Onwuegbuzie, 2004); namely, it was originally anticipated that comorbid depression would explain the SI in patients.

Measures

Participants completed the BDI-PC to assess for depression and SI. The BDI-PC excludes the somatic symptoms that overlap with ME and CFS symptoms and has been found to adequately assess depressive symptoms in this population (Brown et al., 2012). A score of four or higher was needed to meet criteria for depression (Beck et al., 1997). This score yields a sensitivity of .97, a specificity of .99, and a clinical efficiency of .98 for classifying outpatients with or without major depressive disorder (Steer et al., 1999). SI was measured as endorsing a one or higher on the “Suicidal Thoughts or Wishes” item of the BDI-PC. This score is predictive of mortality from suicide (Green et al., 2015). Thus, this study included participants who endorsed SI and scored three or lower on the BDI-PC.

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). The SF-36 assessed participants’ functioning and quality of life. A quantitative analysis of the full sample revealed considerable impairment among these patients (McManimen et al., 2018). However, the focus of this follow-up study was to delve further into participants’ salient experiences using their own voice.

Qualitative analysis

Participants could clarify or expand upon their survey responses through open-ended format. After the USII, Stigma Scales, and BDI-PC, participants were asked: “Do you have any additional comments that you would like to add that were not covered in the questionnaire?” We conducted an inductive content analysis on these responses, which consists of categorizing text data to “reveal trends, patterns, and differences no longer obvious to the untrained individual” (Krippendorff, 2012: 404). The units analyzed were words, sentences, and passages. We coded these units as they were written verbatim, but we corrected spelling for meaning (e.g. changing “its” to “it’s”) when presenting this article.

A.R.D. and S.L.M. conducted the analysis in several steps: (1) multiple readings of the data; (2) open coding; (3) developing a final codebook; (4) applying the final codebook, while considering the whole context of each response; (5) establishing inter-rater reliability (see Supplementary Material A); and (6) finalizing and categorizing codes into themes and subthemes (Elo and Kyngäs, 2008). Codes developed were not mutually exclusive, which led to themes partially overlapping. This is consistent with qualitative inquiry, which aims to highlight the nuances behind experiences and gain a deeper understanding of phenomena. An expert in the field, L.A.J., ensured that our analysis was credible, and two research assistants reviewed the data using the final themes. We reworked our themes according to feedback and repeated this process, verifying the accuracy and trustworthiness of our findings. Our analysis upholds the standards for reporting qualitative research (O’Brien et al., 2014).

It is important to note the authors’ perspectives to promote openness about potential reflexivity bias. Data were analyzed with a patient-driven orientation taken from community psychology principles (Rappaport, 1987). This perspective emphasizes the importance of empowering the group of interest through using their voice. In our themes, we reiterate patients’ assertions that they are not depressed, whereas a psychiatric perspective might argue that our themes of hopelessness represent undiagnosed depression, according to the Diagnostic and Statistical Manual of Mental Disorders (5th ed.; DSM-V). Prior to analysis, we felt that this patient-driven approach risked implicit bias for overinterpreting material. We remained aware of this bias and hoped to reduce its effects with discussion, our codebook, and reviews from outside assistants.

Results

Quantitative results

In total, 7 percent (n = 39) of the parent sample (N = 551) endorsed SI but did not meet the BDI-PC criteria for depression. To reiterate, this non-depressed, SI group reported significantly better functioning on the Role Emotional and Mental Health subscales of the SF-36 (Ware et al., 2000) compared to patients meeting depression criteria and those meeting depression criteria and SI (see McManimen et al., 2018).

Of the 39 non-depressed, SI-endorsing participants, 29 provided open-ended responses and were included in this study. This group was composed of predominantly female (79.3%), Caucasian (96.6%), non-Hispanic (96.6%), and non-US residents (72.4%). The mean age was 51.48 years. The mean score for the BDI-PC was 2.38, with a range of 1–3. One participant endorsed active SI (i.e. score of 3, “I would kill myself if I had the chance”) and the remaining 28 participants endorsed passive SI (i.e. score of 1, “I have thoughts of killing myself, but I would not carry them out”).

Qualitative results

A total of 14 categories were developed and applied during the coding process. We condensed these categories into two overarching themes—(1) feeling trapped and (2) loss of self, loss of others, stigma, and conflict—with subthemes. Table 1 provides percentages on the occurrence of each category. See Supplementary Material B for additional quotes.

Table 1.

Percentages of participants reporting each category (N = 29).

Theme	Subtheme	%	n
Feeling trapped	Having resources and lacking resources	79	23
	Systemic healthcare issues	66	19
	Hope(lessness)	48	14
	Illness-induced distress	48	14
	Desire to end pain	21	6
	Apathy	17	5
Loss of self, loss of others, stigma, and conflict	Lack of understanding and unsolicited advice	72	21
	Identity	59	17
	Isolation	52	15
	aBlamed for illness	45	13
	Illness makes others uncomfortable	38	11
	Burden of educating others	28	8

^aCombined with identity during later thematic development.

Theme 1: feeling trapped

Having and lacking resources.

This subtheme encompasses the benefits of having resources and the consequences of lacking resources. Resources mentioned included support systems, finances, a job, and a physician who understands ME and CFS. Participants felt hope, validation, and compassion when there were support systems present to help with daily living activities. A supportive loved one, for instance, saves a patient valuable resting time:

I am one of the lucky few whose ME/CFS has never been in question by any family member, friend or employer. It hasn’t stopped my disease from making me bedbound … but it has allowed me to cope with such a loss of life without getting depressed. I can’t imagine how devastating it would be, especially if your family questioned the validity of your illness. (P28)

Lacking a caregiver and financial resources made it difficult for patients to cope, since patients had to then exert energy to work themselves, causing physical consequences. Interestingly, work provided a mental escape that helped patients’ emotional well-being:

I now live alone, I must work so the rest I need to come out of this last relapse is impossible to get … Without work, I would suffer emotional issues, I would get mentally and physically worse. My mother cared for everything in the home, this year she died. I am willingly to continue as I am until I can no longer work. (P14)

Many lacked access to helpful physicians, which is overviewed in the following subtheme. For those who had positive healthcare experiences, having a knowledgeable physician provided hope, encouragement, and relief. Physician house calls were welcomed and meaningful to developing the patient–doctor relationship. Finding these helpful physicians took years of shuffling through “ignorant” doctors.

Systemic healthcare issues.

In total, 19 (66%) commented on their dissatisfaction with healthcare providers which were likely driven by the disregard for ME and CFS in the medical community. Participants generally lacked access to helpful healthcare providers—many encountered disdain, disbelief, and a lack of knowledge from their providers. Most encountered doctors that were trained to view ME and CFS as psychiatric, which was dismaying. Disappointment ensued when doctors vocalized psychological attributions or inferences, with “just exercise” recommendations or prescribing antidepressants to treat depression. Participants became vigilant of these dismissive attitudes and sought treatment elsewhere, if possible. Some lived in rural areas that lacked access to healthcare altogether.

Several emphasized the need to educate doctors on ME and CFS, perhaps incorporating the topic into medical curriculums in the United Kingdom, the Netherlands, Canada, and the United States. Participants called for more physiological research to develop medicinal treatments and destigmatize the field. Some patients emailed their doctors studies and publications to encourage them to learn more about ME and CFS:

The only way patients like us will ever come to feel legitimized is through biomedical research and education. It is truly shocking in this day and age to hear that young doctors, especially in the UK, learn about ME/CFS through their Psychiatric Disorders lessons. ME/CFS is not a psychological illness. (P10)

Hopelessness.

Participants did not believe their illness would resolve naturally, and most were hopeless that new, effective treatments would be developed in their lifetime. They viewed the field’s controversies as unlikely to be resolved soon, which produced feelings of powerlessness. Patients criticized the continued focus on cognitive–behavioral and graded exercise therapies because they attribute the illness to psychological causes. They felt that these ongoing debates were a hindrance toward biomedical progress for biomedical treatments. Concurrently, some patients retained hope for a new treatment as a rational to continue live:

I believe there can be a treatment for ME/CFS with appropriate research and funding vs. money wasted on CBT and GET, which can be harmful and even deadly in this disease. It is the hope for treatment in my lifetime that keeps me going. (P9)

Illness-induced distress.

Participants emphasized the difference in having depression versus being depressed by their situation. Many asserted that it is rational to feel sad, hopeless, and have thoughts of suicide in these circumstances. With its crippling nature, ME and CFS made participants unable to participate in and enjoy daily life. They noted the time relationship between their mood and ME and CFS—“the CFS drives the depression” (P2). Participants said that their sadness resolves if their functioning returns:

When crashed, I can do nothing but lie in my bed in total agony and in silence and darkness, trying not to move—sometimes for weeks on end. So, yes, that can be distressing and depressing and make it hard to concentrate or feel hopeful. But my desire for life and to participate in life has not changed. It’s not that I don’t want to do things; it’s that I can’t. (P9)

Desire to end pain.

Six (21%) participants said that there are moments when their illness causes overwhelming physical pain that is unbearable. With no helpful treatment, participants viewed suicide as a logical escape:

After about the fourth day of a severe migraine, death starts looking like the only available option to end the pain. Is that depression or a rational desire to end the suffering? (P19)

Apathy.

Five (17%) participants endorsed apathy when their illness became overwhelming. It can be mentally fatiguing to endure and cope with ME and CFS for sustained periods of time:

The sheer mental exhaustion at the end of the work day—it can be a good day, in a good mood all day, but when I run out of steam THAT’S IT! I’m so tired, I wouldn’t care if an asteroid were careening toward the Earth. ‘Oh, well …’ (P4)

Theme 2: loss of self, loss of others, stigma, and conflict

Identity and blame for illness.

Participants mourned losing their identities to their illness, often focusing on their losses in physical, cognitive, and psychosocial functioning. Some delineated the differences in their pre-morbid and current illness states. ME and CFS hampered participants’ careers because they had to reduce their work hours or cease working entirely. Participants felt that others—friends and family—began to define the participants by their illness and focus on their weaknesses:

When my health improves, I am the person who remembered names, faces and dates. When I relapse I am unable to do this, I have been called unhelpful, stubborn and selfish. (P16)

A total of 13 (45%) participants felt others blamed them for being sick. Remarks that participants were “stubborn,” “weak,” “unhelpful,” and “lazy” were common. These remarks were especially harmful to participants because they clashed with qualities that participants valued, such as being “ambitious, driven and very motivated”:

I was in a new age community and I’m judged that I’m not getting well and it’s my fault! I must be manifesting it so who wants to be around that? (P37)

Isolation.

Participants were physically and mentally isolated. They struggled to maintain social relationships because of their fatigue, post-exertional malaise, pain, and cognitive impairments. Some were forced to sacrifice their social engagements to conserve energy for necessities like work, medical visits, and errands. Several lost close friends. Many used social media and online forums, which were helpful, but not commensurate with face-to-face interactions:

I have gradually lost contact with most people whom I thought were good friends of long duration—one by one, each has simply vanished from my life. The same is true of my family. (P17)

The burden of having ME and CFS—experiencing an invisible illness, stigma, and crippling symptoms—made participants feel mentally isolated because they felt others were unable to empathize:

Mostly people don’t understand chronic illness unless they have had one or cared about someone with it … This illness makes me isolated physically and emotionally. (P5)

Lack of understanding and unsolicited advice.

Participants frequently encountered misunderstandings about ME and CFS from friends, family, healthcare providers, and the public. Participants were frustrated when friends and family misunderstood and downplayed the severity of ME and CFS. This misunderstanding caused conflict, for instance, when participants had to cancel plans. With the illness’ invisible nature, people were surprised to hear that the participants were sick:

People always say ‘I must have that too’ when I call it chronic fatigue syndrome and then they laugh. (P5)

Friends and family gave participants unsolicited advice about treatments. Receiving this unwarranted advice frustrated participants because it often conveyed that others misunderstood or delegitimized ME and CFS:

By far the most common reaction is ‘have you tried … [insert latest quackery here]?’ and then if I say I don’t want to try it, or I have and I didn’t get better, they look suspicious, or comment, ‘well, if you don’t want to get better …’ (P31)

Burden of educating others.

Discussing ME and CFS was a Catch 22. On one hand, participants avoided talking about their illness to avoid conflict and “dull conversation” (P24). They did not want to be defined by their illness; they wanted to enjoy life and escape from their illness. On the other hand, participants felt obligated to educate others to clarify misunderstandings, provide context, and serve as advocates:

I feel a huge burden on my shoulders to educate people, doctors and others … I find this disheartening and hard, because I don’t want to do that if I am out. If I am first out I want to have fun. But if I don’t talk about it … then who will? Who will defend and speak up for those that cannot do it themselves? (P25)

Illness makes others uncomfortable.

In total, 11 (38%) participants experienced aversive reactions regarding their illness from others, usually when others witnessed participants’ disability. People felt awkward or focused too heavily on the participant’s disability—“I get ostracized when people see my paralysis attacks” (P5). Participants described ME and CFS as “the elephant in the room” (P20), reporting that others roll their eyes or steer the conversation away from their illness. These gestures suggest that others disregard the severity of ME and CFS, or they altogether lack belief in the illness.

Discussion

Researchers often attribute suicide to psychiatric illnesses like depression; however, many who attempt suicide or are suicidal do not meet depression criteria (Druss and Pincus, 2000). SI is known to be associated with chronic illness but is often explained with depression (Conwell et al., 2002). This mixed-methods study sought to clarify the ostensible paradox of SI in non-depressed individuals with ME and CFS. Of the 551 patients (McManimen et al., 2018), 7 percent endorsed SI but did not meet depression criteria.

Our qualitative findings illustrate how the ceaseless burden of ME and CFS contributes to SI. ME and CFS caused this sample severe disability, restructured their lives, and inflicted serious pain, which aligns with our hypotheses and other qualitative studies (Anderson et al., 2012). Participants emphasized that they were not depressed—they desired to participate in life—but they felt trapped by their hopeless circumstances. This feeling was produced by unsatisfying interactions with healthcare providers, feeling powerless, and a lack of treatment. Participants encountered stigma and blame, misunderstanding, and unwarranted advice about treatments, where patients felt the need to educate others about their illness. These social detriments and isolating circumstances, which are common for patients, exacerbated feelings of hopelessness. Our results align with studies of other chronic illnesses (Chochinov et al., 1998; Recklitis et al., 2014).

This study shows how unique barriers in the field affect patients’ hope. Patients voiced specific concerns over the neglect of ME and CFS in the biomedical community. Indeed, funding toward ME and CFS research is markedly sparse compared to other illnesses of similar disease burden. Dimmock et al. (2016) estimated that funding for ME and CFS would need to increase 25-fold to be commensurate with disease burden. Most large-scale funding has been allocated toward CBT, which has been controversial in the patient (Geraghty et al., 2019) and scientific community (Laws, 2017; see special issue on the PACE Trial in Journal of Health Psychology, 2017). Patients who retained hope in our sample did so through hoping for new treatments to be developed.

Our study has several implications. First, physicians should screen all patients for feelings of hopelessness and SI, while recognizing the differences in hopelessness due to depression and hopelessness due to circumstances (Breitbart et al., 2000). This distinction is important for patients because they have battled psychiatric attributions and skepticism for years. These negative interactions with physicians may discourage continuance of medical care (Geraghty and Esmail, 2016). SI screenings become difficult, however, because patients who feel hopeless and suicidal are more likely to be debilitated and lack healthcare access. Researchers should develop methods for addressing this hard-to-reach sample, perhaps online interventions.

Second, actions need to be taken to restore hope, functioning, and control in patients’ lives. In addition to funding biomedical studies, tangible action can be taken to improve patients’ quality of life. Physicians could work with patients to develop effective illness management strategies, such as monitoring energy expenditures (Jason et al., 2009). Another possibility is to prevent isolation by destigmatizing ME and CFS, in both the medical and general community. While specialists in the field understand the complexities and severity of ME and CFS (Devendorf et al., 2017), non-specialists lack knowledge because the topic continues to be neglected in medical curriculums (Stenhoff et al., 2015). If general practitioners lack confidence in treating ME and CFS, it is unlikely that they will seriously consider intensified treatment approaches (e.g. home visits) or appropriately educate patients’ social networks. Our findings suggest that patients lose their social networks because of others’ misunderstanding of their illness, which includes others holding dismissive attitudes, offering unsolicited advice, and blaming the patient for being lazy. To address this issue, physicians could incorporate support systems into illness management plans. Feasible actions could include providing pamphlets or emailing information about ME and CFS that emphasize the severity of the illness.

On a broader scale, efforts should be made to educate the public about ME and CFS via mass media. The media has historically neglected reporting on ME and CFS, and when attention has been allotted to these illnesses, they are presented with mixed and sometimes stigmatizing messages (Siegel et al., 2017). More recent efforts suggest that progress is being made to accurately portray ME and CFS. The New York Times recently circulated an article entitled “New Recognition for Chronic Fatigue” in November of 2017 (Brody, 2017). Although the title uses the term “Chronic Fatigue,” the article refers to the illness as ME/CFS and overviews the field’s complexities. Public recognition could cultivate a more hopeful landscape for patients through destigmatizing ME and CFS, garnering more research support, and promoting a physiological framework for these illnesses.

While our findings provide insight into non-depressed patients’ SI, it should be noted that this study was a secondary analysis of a larger project, which increases our limitations and calls for more direct research into this group. Since our study was online, there was no independent verification of diagnosis or screening for comorbid illnesses. Participants were asked to list any additional diagnoses, but none reported conditions that could help explain their endorsement of SI. Only 29 non-depressed SI individuals of the 39 patients provided qualitative data, which limited our sample size, and this group may not be representative of the entire patient population. Community-based studies are needed to further understand the development of SI in the absence of depression to include participants that may not have access to online surveys. Finally, this study’s descriptive nature restricted the depth of our analysis. Future quantitative research could fill this gap by incorporating measures of well-being, resources, and hopelessness, in relation to patients with SI. Future qualitative investigations might conduct interviews or focus groups. There are strengths to this study. Our online recruitment allowed for more severe patients to be recognized and participate from their homes. In addition, the open-ended nature of this study allowed participants to elaborate on issues that are not addressed by the larger study’s questionnaires.

Ultimately, the contextual factors involved with a chronic misunderstood illness need to be considered for identifying individuals at risk of suicide. Through understanding the role of support systems, stigma, and illness severity in ME and CFS, healthcare providers can lend hope and validation to patients, while ultimately building stronger relationships. We hope that this preliminary investigation promotes a further study of SI in ME and CFS and other chronic illnesses.