Confirmatory factor analysis of a myalgic encephalomyelitis and chronic fatigue syndrome stigma scale, by Julia M Terman, Jessica M Awsumb, Joseph Cotler, Leonard A Jason in Journal of Health Psychology, September 2018 [Published online: September 5, 2018]

Research abstract:
This study adapted a chronic illness stigma scale and explored its psychometric properties.

The main purposes were to confirm the factor structure of the instrument with this population and address the previous factor intercorrelation discrepancies.

Five hundred and fifty-four individuals with myalgic encephalomyelitis or chronic fatigue syndrome completed the adapted stigma scale. Results document the stigma experienced by an international sample of individuals with myalgic encephalomyelitis and chronic fatigue syndrome. Factors demonstrated good internal consistency, and a model fit was found in a confirmatory factor analysis.

Participants endorsed high levels of stigma, estrangement, and disclosure. Implications of these findings and future directions are discussed.

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Extract from conclusion:

In summary, the newly confirmed ME and CFS Stigma Scale demonstrated high levels of
stigma and related variables for people with the illness. Stigma may serve as a risk factor for a variety of social and health problems (Clement et al., 2015; Hutton et al., 2013; Looper and Kirmayer, 2004; Sehlo and Bahlas, 2013).

This article’s findings bring attention to the high levels of perceived stigma in ME and CFS.
Healthcare professionals, co-workers, friends, and family members need to work together to decrease the stigmatization of patients with ME and CFS. On a structural level, educational interventions can be implemented to decrease physician stigma. These interventions may involve seminars with factual information and videotaped cases, as such interventions have demonstrated effectiveness in improving attitudes toward ME and CFS (Friedberg et al., 2008).

Peer-led approaches may be most successful at combatting stigma, so interventions may emphasize the importance of participant research and bringing in guests with lived experience (Murman et al., 2014).

In addition to developing a consensus on the name and research case definition, which would reduce some of the ambiguity that professionals have with ME and CFS (Jason et al., 2018), there is also a need to develop treatment interventions that are not stigmatizing to patients, such as pacing and learning to stay within one’s energy envelope (Jason et al., 2013). On an interpersonal level, individuals can focus on active listening when people disclose challenges with ME and CFS. As demonstrated through the DPM, positive disclosure experiences may have profound effects in a patient’s future experiences.

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