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. Author manuscript; available in PMC: 2021 Mar 10.
Published in final edited form as: J Community Psychol. 2018 May 4;46(8):959–971. doi: 10.1002/jcop.21984

Effects of unsupportive social interactions, stigma, and symptoms on patients with myalgic encephalomyelitis and chronic fatigue syndrome

Stephanie L McManimen 1,2, Damani McClellan 1, Jamie Stoothoff 1, Leonard A Jason 1
PMCID: PMC7944645  NIHMSID: NIHMS1677149  PMID: 30311972

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.

Patients with myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) have severe and debilitating symptoms including postexertional malaise, dysfunctional sleep, and neurocognitive impairments (Fukuda et al., 1994; Ramsay, 1988), and 25% of patients are housebound (Pendergrast et al., 2016). It is estimated that approximately one million adults are affected by ME and CFS in the United States alone (Jason et al., 1999). There is a lack of effective treatment options and the recovery rates are low (Cairns & Hotopf, 2005; Chambers, Bagnall, Hempel, & Forbes, 2006; Whiting et al., 2001). Viruses, such as the Epstein-Barr virus, have been implicated in the development of ME and CFS (Devanur & Kerr, 2006; Lorusso et al., 2009) and quantitative electroencephalography has shown disruptions in the neural networks (Zinn, Zinn, & Jason, 2015), thus suggesting an underlying physical cause. However, consistent biological markers have not yet been found (Fischer et al., 2014). Lack of a clear-cut biological cause has increased skepticism about this illness, and patients report the legitimacy of their illness is frequently questioned by family, friends, and even their physicians (Asbring & Narvanen, 2002; Denz-Penhey & Murdoch, 1993; Ware, 1992).

Several studies examining mortality among individuals with ME and CFS have found an increased risk of early mortality with cancer, cardiovascular issues, and suicide (Jason, Corradi, Gress, Williams, & Torres-Harding, 2006; Jiménez-Ortiz, 2015; McManimen et al., 2016; Roberts, Wessely, Chalder, Chang, & Hotopf, 2016). For example, Roberts et al. (2016) found a seven-fold increased risk of suicide, which Kapur and Webb (2016) interpreted as a result of untreated depression. However, the authors failed to note that 60% of the patients in the Roberts et al. study that died by suicide did not have a history or diagnosis of depression. Thus, depression may influence suicidal ideation (SI) in this patient population; however, it would be inappropriate to attribute the majority of suicide-related deaths in patients with ME and CFS to untreated depression. The suggestion by Kapur and Webb (2016) that attributes the suicide deaths solely to psychological factors and ignores a number of factors including the stigma of this illness.

Contextual factors may be associated with an increased risk of SI or depression in patients with ME and CFS. These possible factors are as follows: a greatly diminished quality of life (Hvidberg, Brinth, Olesen, Petersen, & Ehlers, 2015; Komaroff et al., 1996); stigma surrounding the illness, including beliefs held by patients’ families, friends, and even physicians that the illness is not real or is just depression (Dickson, Knussen, & Flowers, 2007; Jason & Richman, 2007; Jason, Taylor, Stepanek, & Plioplys, 2001; Looper & Kirmayer, 2004); as well as social and familial isolation or perceived lack of support (McInnis, Matheson, & Anisman, 2014; Schweitzer, Kelly, Foran, Terry, & Whiting, 1995; Ware, 1999). Although there is a paucity of research on the consequences of these factors within the ME and CFS population, these factors have been continuously associated with SI and depression in other patient populations. In another highly stigmatized illness, inflammatory bowel disease, Taft, Keefer, Leonhard, and Nealon-Woods (2009) found perceived stigma to be a significant predictor of depression in patients. Stigma has also been linked to elevated risk for suicidal ideation in the general public (Sudak, Maxim, & Carpenter, 2008). In addition, Song and Ingram (2002) found high levels of unsupportive social interactions were associated with greater mood disturbance in patients with HIV. However, these factors have not been thoroughly investigated in regards to the consequences for patients with ME and CFS.

Patients with ME and CFS may be more vulnerable to developing depression due to a lack of support from their physicians. In fact, in their study of medical trainees, Jason, Taylor, Plioplys, Stepanek, and Shlaes (2002) found the respondents considered the illness was often delegitimized and associated with depression. Among responses, 37% of trainees believed the patient’s primary illness was depression, 17% believed the patient’s health would continue to deteriorate over the next 2 years, and 36% believed it was likely the patient would attempt suicide in the next 2 years. Patients with ME and CFS often recognize that their physicians attribute their illness to psychological disorders (Romei, Green, & Heinzen, 1996), yet the patients strongly believe their illness is not of a psychosomatic origin (Clements, Sharpe, Simkin, Borrill, & Hawton, 1997; Horton-Salway, 2001; Lovell, 1999).

These unsupportive interactions can have harmful effects on patients. Specifically, Larun and Malterud (2007) found patients’ identities are challenged when the legitimacy of their physical illness is questioned. In fact, identity confusion or loss of one’s pre-illness identity is not uncommon due to these strained social interactions and frequent job loss. Identity challenges in chronic illnesses are known to result in a variety of negative consequences for the patient including deciding between maintaining their pre-illness identity at the risk of their health and adapting their identity to the illness in terms of the ability to work or maintain relationships. (Asbring, 2001; Charmaz, 1994). As such, a perceived lack of support from one’s support system may cause patients to be more vulnerable to developing depression or SI.

Jiménez-Ortiz (2015) attempted to elucidate the circumstances influencing the increased risk of suicide and depression in 205 people in Spain who were affected by ME and CFS. This is the first study to assess external factors that may increase the risk of suicide or the development of depression in patients with ME or CFS. Correlational findings suggested several factors contributed to an increased risk of suicide: a lack of medical care, invalidating interactions with physicians, inability to earn a living outside of the home, and codependence on family members. There were also several factors found to contribute toward a risk of depression in patients: job loss, loss of friendships, and improper treatment by medical professionals, including referrals to psychological or psychiatric treatment. These findings, however, may not be generalizable to patients outside of Spain. Thus, it is important to examine risk factors in this population in other geographic locations, such as the United States.

Several other factors may contribute to individuals with ME or CFS having suicidal thoughts or actions and developing depression-like symptoms. Utilizing data mining techniques, dysfunctional sleep was found to be one of the most prominent symptoms among patients, which helped distinguish them from controls (Jason, Kot, et al., 2015). In the general population, difficulty with sleep is a known predictor of future depression (Goldstein & Walker, 2014) and a systemic review by Bernert, Kim, Iwata, and Perlis (2015) found sleep disturbances were significantly associated with suicidal behaviors (e.g., ideation or attempts) after controlling for depression. Bernert, Turvey, Conwell, and Joiner (2014) found unrefreshing sleep and difficulty falling asleep to be significantly associated with an elevated risk for suicide 10 years later.

Pain is another prominent symptom of ME and CFS, which may contribute to the development of depression or SI. In general, chronic pain has been shown to double an individual’s risk for suicide compared to people not experiencing chronic pain (Tang & Crane, 2006). Gerrits, van Oppen, van Marwijk, Penninx, and van der Horst (2014) determined joint pain and an increasing number of pain locations were significantly associated with future development of depression and anxiety in a longitudinal study in the Netherlands. In regards to ME and CFS, a community-based study found 93.8% of patients reported muscle aches or pain, 84.4% reported joint pain, and 52.4% reported new headaches (Jason et al., 1999). Thus, it is possible that pain frequency and severity play a similar role in the development of depression in an individual with ME or CFS. Furthermore, Fuller-Thomson and Nimigon (2008) found patients with CFS with comorbid depression were more likely to be physically limited due to pain compared to patients without comorbid depression.

Augmenting the prior findings of Fuller-Thomson and Nimigon (2008) and Jiménez-Ortiz (2015), the purpose of the current study was to investigate factors that may influence SI in a large population of individuals with ME and CFS and to better understand how those factors relate to the development of depression in this population. Although the two prior studies demonstrate significant relationships between depression and decreased social support, coping, and health care quality, they did not assess the relationships between depression and SI with unsupportive social interactions, stigma, and illness severity. Moreover, the Jimenez-Ortiz (2015) study used the Beck Depression Inventory (BDI; Beck, Rush, Shaw, & Emery, 1979) and included only the two active SI statements, but not the passive SI statement. The current study included all three items for SI because it is important to investigate the potential causes of passive ideation, not just active ideation.

As suggested by Brown, Kaplan, and Jason (2012), the current study used the BDI for Primary Care (BDI-PC; Beck, Guth, Steer, & Ball, 1997) because many ME and CFS symptoms overlap with the original BDI items, which could conflate ME and CFS with depression. It was hypothesized that SI and depression would be significantly associated with patients reporting more unsupportive social interactions, perceived stigma, frequent and severe symptoms, and functional impairment. Such findings would be instrumental in elucidating the mechanisms behind the increased risk for suicide found in mortality studies of patients with ME and CFS (Jason et al., 2006; McManimen et al., 2016; Roberts et al., 2016). Such information could also be used to educate health care professionals and the public about these risk factors that affect a group of patients that has experienced considerable stigma.

1 |. METHOD

1.1 |. Participants

An international, convenience sample of adults self-identifying as having ME or CFS was collected. Participants were required to be English speakers and have a current self-reported diagnosis of ME or CFS. Participants were recruited from several sources: social media, patient advocacy newsletters, internet forums, and patient organization websites. The study was completed using Research Electronic Data Capture, an online survey tool (Harris et al., 2009).

1.2 |. Unsupportive Social Interactions

The Unsupportive Social Interactions Inventory (USII; Ingram, Betz, Mindes, Schmitt, & Smith, 2001) was used to assess the frequency of unsupportive social interactions experienced by patients. The instrument was created to assess stressor-specific unsupportive social interactions in response to an individual experiencing a stressful life event, such as a chronic illness. Participants rated “How much of this I received” for each item describing an unsupportive interaction on a scale of 0 to 4 (0 = none to 4 = a lot). The measure results in four subscales: Distancing (emotional and behavioral disengagement), Bumbling (awkward behaviors), Minimizing (minimizing the individual’s concerns or encouraging optimism), and Blaming (criticizing or faulting the individual for the event). These four subscales were found to assess stressor-specific social interactions separate from general, negative social interactions.

The Distancing, Minimizing, and Blaming subscales were of interest for the current study. Distancing included six items relating to social disengagement (e.g., “Did not seem to want to hear about it”). Minimizing included six items relating to having their comments minimized by others (e.g., “Felt that it could have been worse or was not as bad as I thought”). Blaming included three items relating to the participant being blamed for their illness (e.g., “Blamed me, tried to make me feel responsible for the illness”). These subscales have shown adequate internal consistency reliability (Ingram et al., 2001).

1.3 |. Stigma Scale

The Facial Pain Stigma Questionnaire was used to assess stigma present in interactions with others because of its evidenced good reliability (Lennon, Link, Marbach, & Dohrenwend, 1989). This questionnaire was developed for another highly stigmatized illness characterized by pain, and as such, the wording of the questions were adapted for patients with ME and CFS. For example, “Most people have no idea what it’s like to have facial pain” was adapted to read “Most people have no idea what it’s like to have ME or CFS.” Participants endorsed items on a 4-point Likert scale ranging from 1 (strongly disagree) to 4 (strongly agree).

Two domains, Attributions to a Personality Problem and Estrangement, were used in the present study. Attributions to a Personality Problem comprised five items relating to perceived psychological etiologies (e.g., “People have a way of associating the occurrence of ME or CFS with psychiatric difficulties”). Estrangement comprised six items relating to feeling estranged from others due to the illness (e.g., “Most people have no idea what it is like to have ME or CFS”). The original Facial Pain Stigma Scale demonstrated good internal consistency (disclosure α = .72; attribution to personality/psychological problems α = .82; estrangement α = .84).

1.4 |. Illness Severity

The DePaul Symptom Questionnaire (DSQ) was used to assess symptom frequency and severity (Jason et al., 2010). Participants rated the frequency and severity of their symptoms on a 5-point Likert scale, with higher scores indicating more frequent or more severe symptoms. Symptom frequency is rated over the past six months as follows: 0 = none of the time, 1 = a little of the time, 2 = about half the time, 3 = most of the time, and 4 = all of the time. Similarly, severity was rated over the past 6 months as follows: 0 = symptom not present, 1 = mild, 2 = moderate, 3 = severe, and 4 = very severe.

There were eight domains used in this study: Post-Exertional Malaise (six items, e.g., “Dead, heavy feeling after starting to exercise”); Sleep (five items, e.g., “Feeling unrefreshed after waking up in the morning”); Neurocognitive (seven items, e.g., “Absent-mindedness”); Immune (four items, e.g., “Tender or swollen lymph nodes”); Neuroendocrine (four items, e.g., “Feeling hot or cold for no reason”); Pain (two items, e.g., “joint pain”); Gastrointestinal (thee items, e.g., “Irritable bowel problems”); Orthostatic Intolerance (five items, e.g., “Dizziness or fainting”).

The DSQ has evidenced good test-retest reliability among patient and control groups (Jason, So, Brown, Sunnquist, & Evans, 2015). Strand et al. (2016) found a sensitivity of 98% when comparing the agreement between a physician’s diagnosis of ME/CFS using the Canadian Consensus Criteria and the DSQ’s assessment of this case definition. Murdock, Wang, Cleeland, Fagundes, and Vernon (2016), an independent group using the DSQ, found that it demonstrated excellent internal reliability, and that among patient-reported symptom measures, it optimally differentiated between patients and controls.

The Medical Outcomes Study 36-Item Short-Form Health Survey (SF-36, Ware, Snow, & Kosinski, 2000), a self-report quality-of-life measure, was used to assess the participants’ functioning level. This measure has been used to assess functional impairment in this patient population and is the suggested measure for operationalizing substantial reductions in functioning (Institute of Medicine [IOM], 2015). The participants answer questions on a 3-point Likert scale, which is then converted to a 100-point scale. The measure has eight subscales covering physical and mental health functioning: Physical Functioning, Role Physical, Bodily Pain, General Health, Social Functioning, Role Emotional, Mental Health, and Vitality. The measure has shown good internal consistency and discriminant validity (McHorney, Ware, & Raczek, 1993).

1.5 |. Depression and SI

Depression and SI were measured using the BDI-PC, an abbreviated version of the Beck Depression Inventory-II (BDI-II; Beck, Steer, & Brown, 1996). The BDI-PC includes seven items from the BDI-II (Sadness, Loss of Pleasure, Suicidal Thoughts or Wishes, Pessimism, Past Failure, Self-Dislike, and Self-Criticalness). Scores range from 0 to 21. A score of 4 or higher on the BDI-PC was needed to meet the criteria for depression with a 98% clinical efficiency, a 97% sensitivity rate, and a 99% specificity rate (Steer, Cavalieri, Leonard, & Beck, 1999). Similar to previous research (Heisel, Conwell, Pisani, & Duberstein, 2011), SI was measured as endorsing a 1 or above on the “Suicidal Thoughts or Wishes” question. The cutoff of 1 was chosen as Green et al. (2015) found this to be predictive of suicide mortality.

1.6 |. Statistical analyses

For the DSQ, the individual frequency and severity scores were multiplied by 25 and averaged together to create a composite score for each symptom on a 100-point scale. Similarly, symptom domain scores were created by multiplying the frequency and severity of each symptom in the domain by 25 and then averaging the scores together to get one domain composite score on a 100-point scale. The symptom domains are based on the factor analysis findings of Jason, Sunnquist, Brown, Furst, et al. (2015). Similarly, for the USII and the Stigma Scales, scores were multiplied by 25 to be on a 100-point scale and then each item in the subscale was averaged for the subscale scores.

A series of chi-square tests were conducted to determine if participants were statistically different on sociodemographics based on their endorsement of SI or BDI-PC score. Continuous data were analyzed with analysis of covariance (ANCOVA) tests.. while controlling for U.S. status. For statistically significant ANCOVAs, Games-Howell and Hochberg’s GT2 post hoc analyses were conducted for pairwise comparisons between the four groups of participants. All data were analyzed using IBM SPSS statistics software (version 21).

2 |. RESULTS

2.1 |. Demographics

As shown in Table 1, the international sample included individuals from the United States (33.0%) and other countries (67.0%), such as Norway, the United Kingdom, Australia, and Canada. The sample was 98.2% White, 1.1% Asian/Pacific Islander, 1.1% American Indian or Alaska Native, 0.2% other, and 2.2% were of Latino or Hispanic origin. Participants had the option to endorse multiple races and ethnicities; therefore, the race/ethnicity total is greater than 100%. Of the participants, 39.6% did not meet criteria for the BDI-PC or SI; 32.5% met criteria for both; 20.9% met criteria for the BDI-PC only; and the remaining 7.1% endorsed SI but did not meet the BDI-PC criteria. There were no demographic differences between these groups. However, there were significant differences for the following demographic variables between the U.S. participants and non-U.S. participants: age, F(1, 539) = 42.23, p < .001; education, χ2(1) = 12.35, p < .01; marital status, χ2(1) = 14.23, p < .01; and work status, χ2(1) = 15.32, p < .01. U.S. status was controlled for in subsequent analyses.

TABLE 1.

Demographic Characteristics (N = 551)

Neither (n = 218) Depression (n = 115) SI (n = 39) Both (n = 179)
M(SD) M(SD) M(SD) M(SD)
Age 47.77(13.07) 47.23(13.36) 48.79(13.24) 48.48(12.67)
%(n) %(n) %(n) %(n)
Female 87.6(190) 87.7(100) 82.1(32) 89.4(160)
White/Caucasian 97.7(211) 96.5(110) 97.4(38) 98.9(176)
Non-Hispanic 98.1(212) 99.1(111) 97.4(38) 96.6(170)
Nationality
 United States 29.3(63) 41.2(47) 28.2(11) 32.2(57)
 International 70.7(152) 58.8(67) 71.8(28) 67.8(120)
Marital status
 Married or living with partner 56.9(124) 60.2(68) 41.0(16) 42.7(76)
 Separated 3.2(7) 1.8(2) 5.1(2) 5.1(9)
 Widowed 1.4(3) 2.7(3) 2.6(1) 1.7(3)
 Divorced 11.0(24) 10.6(12) 25.6(10) 16.9(30)
 Never married 27.5(60) 24.8(28) 25.6(10) 33.7(60)
Education level
 High school or less 8.8(19) 11.4(13) 7.7(3) 10.6(19)
 Partial college 16.6(36) 25.4(29) 23.1(9) 20.1(36)
 College degree 33.2(72) 29.8(34) 38.5(15) 32.4(58)
 Graduate or professional degree 41.5(90) 33.3(38) 30.8(12) 36.9(66)
Work status
 On disability 53.2(115) 36.8(42) 56.4(22) 58.7(105)
 Student 2.8(6) 3.5(4) 0.0(0) 3.9(7)
 Homemaker 2.3(5) 8.8(10) 2.6(1) 2.2(4)
 Retired 11.6(25) 14.9(17) 10.3(4) 10.1(18)
 Unemployed 13.0(28) 19.3(22) 12.8(5) 12.3(22)
 Working part-time 10.2(22) 11.4(13) 10.3(4) 8.9(16)
 Working full-time 6.9(15) 5.3(6) 7.7(3) 3.9(7)
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Note. M = mean; SD = standard deviation.

Regarding comorbid conditions, nine participants had co-occurring mental health diagnoses. For the group that met neither criteria, one participant reported posttraumatic stress disorder and two reported anxiety. For the group meeting depression criteria, one participant reported comorbid anxiety. For the group meeting both criteria, two reported anxiety, two reported bipolar disorder, and one reported anxiety. No participants in the group endorsing SI but not meeting the BDI-PC cutoff reported any comorbid mental health diagnoses. The removal of these nine participants did not significantly affect the results.

2.2 |. Unsupportive social interactions

There was good reliability for the subscales and overall USII measure: Distancing (α = .918), Minimizing (α = .943), Blaming (α = .838), and Total (α = .954). As shown in Table 2, there were statistically significant differences for the following subscales of the USII: Distancing, F(3, 536) = 7.96, p < 0.001; Minimizing, F(3, 536) = 10.36, p < 0.001; Blaming, F(3, 535) = 7.904, p < 0.001. Pairwise comparisons showed that participants meeting the criteria for the BDI-PC, regardless of SI endorsement in two of the subscales, are experiencing unsupportive social interactions more frequently than those not meeting BDI-PC criteria or endorsing SI.

TABLE 2.

Differences in Functioning, Stigma, and Relationships after Controlling for U.S. Status (N = 551)

Neither (n = 218) Depression (n = 115) SI (n = 39) Both (n = 179)
M(SD) M(SD) M(SD) M(SD)
SF-36
 Physical Functioning 28.69(22.50)a 32.07(22.52)b 26.03(21.28) 23.53(19.70)ab*
 Role Physical 5.57(15.40) 3.10(9.53) 7.05(18.98) 3.14(8.40)
 Bodily Pain 40.83(24.12) 39.15(22.75) 35.54(20.82) 34.72(20.50)
 General Health 27.06(16.36)ab 23.14(13.20)ac 24.71(14.69)d 19.37(12.70)bcd***
 Vitality 16.57(16.16)ab 10.00(10.56)ac 16.03(15.74)cd 8.72(11.78)bd***
 Social Functioning 26.73(25.14)a 22.12(19.91) 21.47(25.64) 19.38(22.08)a*
 Role Emotional 80.80(36.08)ab 56.49(44.73)ac 78.63(37.84)cd 55.71(44.19)bd***
 Mental Health 78.68(10.42)abc 60.24(16.05)ade 72.72(12.61)bdf 54.13(18.53)cef***
DSQ Symptom Domains
 Post-exertional malaise 69.23(20.80)a 70.23(18.77)b 72.53(15.54) 74.84(15.96)ab*
 Sleep 50.91(19.28)ab 57.03(16.44)ac 52.44(20.44)d 61.92(17.36)bcd***
 Neurocognitive 58.33(20.67)a 60.16(18.83)b 55.86(19.49)c 67.61(18.61)abc***
 Immune 32.07(16.95)ab 36.80(17.76)a 33.97(20.04) 39.68(19.33)b***
 Neuroendocrine 39.10(19.52)a 42.19(20.71) 42.47(25.52) 45.98(21.98)a**
 Pain 55.99(25.74)a 59.38(25.59) 61.06(29.12) 64.63(23.48)a*
 Gastrointestinal 41.51(23.57)a 43.48(23.87) 46.55(30.10) 48.39(24.01)a*
 Orthostatic Intolerance 36.15(19.77)a 37.62(17.11)b 37.02(22.40) 43.47(19.71)ab***
Unsupportive Social Interactions
 Distancing 55.99(29.78)a 61.11(25.00)b 65.31(28.80) 69.77(26.27)ab***
 Minimizing 53.54(32.36)abc 64.63(31.08)a 66.23(34.98)b 70.47(27.61)c***
 Blaming 36.10(31.06)ab 44.92(30.75)a 47.37(35.68) 51.55(30.71)b***
Stigma Scales
 Personality 70.18(15.34)a 72.95(14.29) 72.18(18.27) 74.74(15.03)a*
 Estrangement 83.48(10.64)ab 87.45(10.48)ac 87.18(13.36) 91.12(10.05)bc***
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Note. SI = suicide ideation; M = mean; SD = standard deviation.

*

p < .05.

**

p < .01.

***

p < .001, same letters denote significant difference.

2.3 |. Stigma

The stigma scales evidenced good internal consistency: Personality (α = .800), Estrangement (α = .763), and Total (α = .807). As shown in Table 2, there was overall significance for both the stigma scales: Personality, F(3, 538) = 2.86, p < 0.05, and Estrangement, F(3, 539) = 16.39, p < 0.001. Pairwise comparisons showed that the participants meeting both criteria agreed with the stigma statements more often, which suggests they perceived more stigma because of their illness.

2.4 |. Illness Severity

Each DSQ symptom domain showed good internal consistency: Post-Exertional Malaise (α = .866), Sleep (α = .708), Neurocognitive (α = .921), Immune (α = .737), Neuroendocrine (α = .796), Pain (α = .810), Gastrointestinal (α = .798), and Orthostatic Intolerance (α = .789). As shown in Table 2, there were statistically significant differences between the groups on symptomology. There was overall significance for the following symptoms: Post-exertional Malaise, F(3, 539) = 3.59, p < 0.05; Sleep, F(3, 539) = 12.84, p < 0.001; Neurocognitive, F(3, 539) = 8.72, p < 0.001; Immune, F(3, 539) = 6.53, p < 0.001; Neuroendocrine, F(3, 539) = 3.82, p < 0.01; Pain, F(3, 539) = 3.69, p < 0.05; Gastrointestinal, F(3, 539) = 2.81, p < 0.05; Orthostatic Intolerance, F(3, 539) = 5.24, p < 0.001. Pairwise comparisons indicated the group meeting criteria for the BDI-PC and endorsing SI are experiencing symptoms more frequently and severely than those meeting neither criteria.

There were also statistically significant differences for SF-36 subscales. There was overall significance for the following subscales: Physical Functioning, F(3, 540) = 3.74, p < 0.05; General Health, F(3, 538) = 9.47, p < 0.001; Vitality, F (3, 539) = 12.94, p < 0.001; Social Functioning, F(3, 539) = 3.61, p < 0.05; Role Emotional, F(3, 537) = 15.68, p < 0.001; Mental Health, F(3, 539) = 98.33, p < 0.001. Pairwise comparisons indicated that the group meeting both BDI-PC and SI criteria are experiencing worse overall functioning in physical and mental health domains compared to those meeting neither criteria. There were no statistically significant differences for Role Physical or Bodily Pain, p > .05.

3 |. DISCUSSION

The findings were comparable to a previous study (Jason et al., 2002): 89.5% of participants reported dismissive attitudes from a physician after developing ME or CFS. Participants that endorsed both SI and depression versus those that did not experienced more frequently unsupportive social interactions in the form of blame for their illness, minimization of its severity, and social distancing from others. In addition, patients meeting both criteria had significantly higher scores on both stigma scales compared to those meeting neither criteria, which indicates they experienced more stigma as a result of their illness. Finally, participants that reported both SI and depression had significantly higher scores in each symptom domain of the DSQ, which indicates that this group experienced symptoms more frequently and severely than participants who reported only one of these and those who reported neither.

A noteworthy finding of this study indicates that 7.1% of patients with ME and CFS are endorsing SI but do not meet the criteria for clinical depression. Thus, this group’s desire to die cannot be attributed to untreated depression as suggested by Kapur and Webb (2016). This finding is similar to that of Breitbart et al. (2000), which found that within a palliative care setting, 10% of patients with terminal cancer had a desire to die yet did not meet criteria for depression. Similarly, Recklitis, Zhou, Zwemer, Hu, and Kantoff (2014) investigated SI in survivors of prostate cancer and found SI to be associated with poor physical functioning, symptom burden, and high frequency of pain, even after controlling for depression.

Hopelessness has been found to be a unique contributor to the prediction of SI after controlling for depression in patients with terminal cancer (Chochinov, Wilson, Enns, & Lander, 1998). Given that the recovery rate for ME and CFS is reported to be around 5% (Cairns & Hotopf, 2005) and suggested treatments are misleading and can actually result in patients’ symptoms exacerbating (Kindlon, 2017; Wilshire, Kindlon, & McGrath, 2017), it is therefore not surprising to find a group of patients displaying characteristics similar to patients with terminal cancer. Physical illnesses have been linked to a higher risk of suicide, regardless of mental health status (Bolton, Walld, Chateau, Finlayson, & Sareen, 2015). Patients that have been hospitalized due to a physical illness have shown a significantly greater prevalence of suicide compared to the general population (Qin, Webb, Kapur, & Sørensen, 2012).

Thus, it is important to screen for possible suicidal ideation, regardless of the presence of depression, when a patient is diagnosed with a severely debilitating physical illness such as ME or CFS. Moreover, it is also important to recognize that social and community factors, such as unsupportive interactions and stigma, increase the risk of SI among these patients.

These findings begin to clarify the factors that may contribute to the increased risk of depression and suicide-related mortality in patients with ME and CFS (Jason et al., 2006; McManimen et al., 2016; Roberts et al., 2016). While certain patients appear to have a significantly worse illness burden, all four groups reported high levels of unsupportive interactions, stigma, symptomatology, and disability. Thus, these results suggest the importance of directing efforts toward alleviating these circumstances through various methods, including the development of empirically sound treatments, the provision of assistance and funding for disability aid, and education for physicians and the general population about ME and CFS with an aim to reduce unsupportive interactions and stigma.

Clearly, those patients with ME and CFS have often not been provided adequate care by both our healthcare system as well as society in general, and it is important to adopt a more systemic, community approach to deal with the multiple barriers these patients experience. Community psychologists have multiple methods and tools that can be used to reduce stigma and oppression, providing those who are marginalized real opportunities to be involved as agents of change in their own communities (Jason & Glenwick, 2016). For example, community psychologists could work with patient groups to confront stigma and inappropriate ways our healthcare system marginalizes these patients (Jason, 2015).

3.1 |. Limitations

This study has several limitations. First, the study may have been affected by selection bias. The title of the survey was “Demoralization and Depression-Like Symptoms in Individuals with ME and CFS”; therefore, it is possible that those who did not feel demoralized or depressed were less likely to participate in the study, which would skew the prevalence of SI and depression in this population. Second, this study used the BDI-II to measure both depression and SI. Although prior research has found one-item assessments from depression rating scales to be a valid method for measuring SI (Desseilles et al., 2012), a measure specific to SI should be used in future studies to examine specific qualities of SI (e.g., passive or active) in this patient population. Additionally, there was no independent verification of the ME or CFS diagnosis because of the nature of participant recruitment. However, 90.5% of participants met the IOM diagnostic criteria (IOM, 2015), which has been found to capture 88% of patients with ME and CFS (Jason, Sunnquist, Brown, McManimen, & Furst, 2015).

3.2 |. Conclusion

This study provides a preliminary evaluation of factors that may contribute to SI and depression prevalence in ME and CFS. Although there were significant differences between these patient groups, it is important for future research to examine how these and other factors interact to increase a patient’s risk of developing SI or depression as a result of an ME or CFS diagnosis. Shiratori et al. (2014) used network analysis on suicide cases in Japan and found that depression and physical illness influence suicide behaviors. In light of this, investigating how each risk factor interacts with each other would be an important next step for research involving the ME and CFS patient population. A better understanding of the risk factors effecting this population could be instrumental in developing community-based programs and providing the needed resources to reduce SI and depression. Community psychologists could use their particular expertise to disseminate through different media sources these types of findings and work collaboratively with health care professionals and the public to reduce stigma and unsupportive social interactions among patients with ME and CFS.

Funding Information

Funding was provided by National Institute of Allergy and Infectious Diseases (Grant number AI105781).

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