Could disease labelling have positive effects? An experimental study exploring the effect of the chronic fatigue syndrome label on intended social support

Abstract:

Objective: Chronic fatigue syndrome (CFS) patients report limited social support, which can affect symptom severity. Friends are a key source of social support for young adults with CFS, but there is limited research on friends’ responses to the CFS label. We explored the potential benefits or harms of the CFS label for shaping the potential for social support from a friend’s perspective.

Method: 207 university students responded to hypothetical scenarios about a close friend experiencing CFS. Participants were randomly allocated to either the CFS-label or no-label conditions. The potential for social support was operationalised as attitude (sympathetic or hostile), intended treatment support and intended behavioural support.

Results: The CFS label elicited a greater potential for social support, with significantly higher sympathetic responses, lower rejecting responses and greater support for active treatment. These effects were significantly greater in men compared to women. There was no effect on intended behavioural support.

Conclusion: This study suggests the CFS label may increase the potential for social support. Young adults, particularly men, held more supportive attitudes towards their friend when the CFS label was used.

Practical Implications: The effects of labels on the potential for social support need to be considered when evaluating the usefulness of a disease label.

Source: Noble S, Bonner C, Hersch J, Jansen J, McGeechan K, McCaffery K. Could disease labelling have positive effects? An experimental study exploring the effect of the chronic fatigue syndrome label on intended social support. Patient Educ Couns. 2018 Oct 15. pii: S0738-3991(18)30883-8. doi: 10.1016/j.pec.2018.10.011. [Epub ahead of print]  https://www.ncbi.nlm.nih.gov/pubmed/30514660

The act of diagnosis: pros and cons of labelling chronic fatigue syndrome

Abstract:

BACKGROUND: One of the many controversies surrounding chronic fatigue syndrome (CFS) is the possible impact of the diagnostic label: is it disabling or enabling? In this paper, we discuss the pros and cons of labelling CFS.

METHOD: A narrative synthesis of the literature.

RESULTS: Diagnosed CFS patients have a worse prognosis than fatigue syndrome patients without such a label. The ways in which CFS patients perceive themselves, label their symptoms and appraise stressors may perpetuate or exacerbate their symptoms, a process that involves psychological, psychosocial and cultural factors. Labels can also lead to conflicts with doctors who fear diagnosis might lead to worse outcomes. However, on the other hand, finding a label that fits one’s condition can provide meaning, emotional relief and recognition, whilst the denial of the diagnosis of CFS in those who have already reached their own conclusion can be very counter productive. The act of diagnosis therefore seems to be a trade-off between empowerment, illness validation and group support, contrasted with the risk of diagnosis as self-fulfilling prophecy of non-recovery.

CONCLUSIONS: The answer to the question of ‘to label or not to label’ may turn out to depend not on the label, but on what that label implies. It is acceptable and often beneficial to make diagnoses such as CFS, provided that this is the beginning, and not the end, of the therapeutic encounter.

 

Source: Huibers MJ, Wessely S. The act of diagnosis: pros and cons of labelling chronic fatigue syndrome. Psychol Med. 2006 Jul;36(7):895-900. Epub 2006 Jan 10. https://www.ncbi.nlm.nih.gov/pubmed/16403245