How psychiatric referrals influence stigmatization in patients with myalgic encephalomyelitis and chronic fatigue syndrome: an examination of American and British models, by Julia Terman, Joseph Cotler, Leonard A Jason in Community Psychology in Global Perspective Vol 5, #2, pp 19–29 , Oct 2019 [DOI: 10.1285/i24212113v5i2p19]
Myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) are controversial chronic illnesses with a myriad of debilitating symptoms. This study aimed to explore physician referrals to psychiatrists or psychologists, perceived stigma, and estrangement for patients with ME and CFS.
Findings indicate that patients who have been referred to psychiatrists are likely to perceive illness stigma and feel estranged from others due to their illness. These relationships are moderated by the country of residence, the United States and the United Kingdom. The implications of physician referrals for people with ME and CFS are discussed.
The present findings indicate that patients with ME and CFS who have been referred to psychiatrists are likely to perceive illness stigma and feel estranged from others due to their illness. As previous studies have shown a high propensity of patients with ME and CFS to be misdiagnosed with a psychiatric condition (Deale & Wessely, 2000), these referrals are likely a cause of anxiety and stigma for the patient receiving them. The relationship between psychiatric referral and estrangement was mediated by perceived stigma, yet the impact was stronger for the British sample than the American sample.
Despite the different mediation model outcomes due to the moderation effect of country, all three variables correlate with one another for individuals from both countries. These findings corroborate the qualitative accounts that have been reported in previous literature (Åsbring & Närvänen, 2002; Dickson et al., 2007; Jason, Taylor, Plioplys, Stepanek, & Shlaes, 2002), which suggest that physician attitudes related to stigma and estrangement of individuals with ME and CFS.
Findings indicated that patients are at risk for estrangement and high stigma. Stigma can impair help-seeking and predict mental health challenges (Clement et al., 2015; McManimen et al., 2018). Estrangement is also a risk factor for patients because socially isolated individuals may experience loneliness, and loneliness predicts subsequent depression (Cacioppo, Hawkley, & Thisted, 2010; Matthews et al., 2016). Thus, individuals with chronic illness who feel estranged may be at risk for depression (Cacioppo et al., 2010), as well as early mortality (Smith, Jackson, Kobayashi, & Steptoe, 2018).
The differences between the American and British models may, in part, be explained by different illness profiles and cultural differences. British individuals experience more severe symptomology than Americans across several indicators (Zdunek et al., 2015), which may impact their experiences with healthcare providers and peers. It is possible that a patient with more severe symptoms may be treated more negatively by physicians than someone with less severe symptoms, especially if the physician upholds a stigmatizing view of the illness.
Another possibility may be due to differences in diagnostic and treatment guidelines between the two countries. In the United Kingdom, the National Institute for Health and Care Excellence (NICE) guidelines for ME and CFS stipulate the cognitive behavioural therapy (CBT) and graded exercise treatment (GET) should be part of the treatment program for patients with ME and CFS (https://www.nice.org.uk/guidance/cg53/chapter/1-Guidance#diagnosis)…
While this has positive outcomes for patients with depression, patients report that GET often exacerbate symptoms and leaves them feeling more fatigued and more ill than before (Wilshire et al., 2018; Maes & Twisk, 2010). CBT has had more mixed findings, but it has been demonstrated that CBT’s effectiveness is directly tied to patient comorbid diagnosis of depression (Sunnquist & Jason, 2018).
While these guidelines are in place for U.K. practitioners, the Institute of Medicine in the U.S. does not have specific guidelines for treating ME or CFS. Attitudes toward the illness and treatment likely differ in Britain compared to America due to these nuanced sets of differences, as has been demonstrated with attitudes toward the cause of ME and CFS (Zdunek et al., 2015). These outcomes highlight the importance of co-production in patient healthcare, as stigmatization in patient healthcare can be reduced through the involvement of patients in planning and implementing their treatment and outcome options (Turakhia & Combs, 2017).
Community psychologists can use these findings to identify patients who may be at risk for further social and family estrangement due to false positive referrals, and to help administer proper therapies aimed at reintegration into social settings that negate perceived stigma.
In summation, physician treatment, societal stigma, and the social estrangement of individuals with ME and CFS are interconnected in our two samples of patients. Findings indicate that referral to psychiatric treatment can be damaging when prescribed to someone as a means of dismissing physical complaints. Physicians can utilize a shared decision making treatment model to treat patients with ME and CFS (Bieber et al., 2008). This method involves mutual exchange of information between the doctor and patient, as the doctor holds medical knowledge and the patient holds knowledge about individual health experiences. This model has been effective for those with chronic invisible illnesses and may better allow physicians to aid patients who feel their symptoms are physical and not psychological (Bieber et al., 2008). By remaining sensitive, physicians, friends, and family can aim to improve the lives of those with ME and CFS.