Causal attributions and perceived stigma for myalgic encephalomyelitis/ chronic fatigue syndrome, by Laura Froehlich, Daniel BR Hattesohl, Joseph Cotler, Leonard A Jason , Carmen Scheibenbogen, Uta Behrends in Journal of Health Psychology, July 9 2021 [doi.org/10.1177/13591053211027631]
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a chronic disease with the hallmark symptom of post-exertional malaise. Evidence for physiological causes is converging, however, currently no diagnostic test or biomarker is available.
People with ME/CFS experience stigmatization, including the perception that the disease is psychosomatic. In a sample of 499 participants with self-diagnosed ME/CFS, we investigated perceived stigma as a pathway through which perceived others’ causal attributions relate to lower satisfaction with social roles and activities and functional status.
Higher perceived attributions by others to controllable and unstable causes predicted lower health-related and social outcomes via higher perceived stigma.
The role of perceived stigma for ME/CFS
… health-related quality of life outcomes were worse for people with ME/CFS who thought that others in their social environment viewed them as responsible for their condition and viewed the condition as likely to change. In turn, when people with ME/CFS perceived this pattern of others’ attributions, they also felt more stigmatized by these other people. Results were consistent except for non-significant direct and indirect effects for vitality. This might be explained by the fact that vitality items measure energy and exhaustion, which are closely tied to ME/CFS symptoms.
The perception that others view the illness as controllable and changeable indirectly predicted lower health-related quality of life for people with ME/CFS.
This result highlights that perceived stigma is a relevant process in ME/CFS: In line with basic stigma definitions… ME/CFS is perceived as:
- discrediting (e.g. participants reported feeling embarrassed because of their disease) and
- leads to social exclusion (e.g. participants reported being left out and avoided because of their disease).
- In turn, perceived stigma was not only related to lower functional status, but participants also reported being less satisfied with their social roles (e.g. being bothered by their limitations to socialize and meet the needs of family and friends)
- and activities (e.g. not being satisfied with the amount of household and leisure activities they can do).
Consequently, the social perceptions of ME/CFS are relevant to patients’ health and relationships. Findings point to pathways to improve the health-related and social situation of ME/CFS patients:
- Further education of health practitioners and the public about physiological causes of ME/CFS could improve the situation for patients.
- A widespread, evidence-based conception of ME/CFS as a physical condition could also increase the fit between illness perceptions by patients and their social environment, which in turn could reduce the negative consequences associated with ME/CFS (e.g. unsupportive social interactions, suicidal ideation).