Could disease labelling have positive effects? An experimental study exploring the effect of the CFS label on intended social support, 2018, Noble

Andy · Dec 8, 2018

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.
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Paywalled at https://www.sciencedirect.com/science/article/pii/S0738399118308838

Unable · Dec 8, 2018

So what were they comparing this to? People with NO health issues?

Might have been a more interesting study, if they had also looked at various other named diseases eg:
Cancer
Parkinson’s
Myalgic Encephalomyelitis
Heart Disease

and then to compared “Chronic Fatigue Syndrome”.

Guess which would get least notional support!!!

Skycloud · Dec 8, 2018

Did they ask any young people with 'CFS' what their experience was? No. Anyone can express good intentions, but reality can be very different. I fail to see the usefulness of this study.

Trish · Dec 8, 2018

Unable said: ↑

So what were they comparing this to? People with NO health issues?
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It sounds like a simple student project. Get a bunch of students to answer a hypothetical question about what support they might give to a friend diagnosed with CFS, and compare it with what another sample of students says they would do for a friend with symptoms without a name.

Conclude that it's helpful to have a name for your condition.

Why not actually ask pwME, and people with another better known and equally disabling condition, about how supportive their friends actually are?

Cinders66 · Dec 8, 2018

This might have been more useful in the 90s when there was debate as to whether to diagnose us at all and if it was harmful too. Perhaps that still lingers in some areas. CFS versus nothing wins but CFS generally is a handicap name afaic.

DokaGirl · Dec 8, 2018

We have probably all heard "I'm tired too", when the CFS label is mentioned.

Support from friends for having CFS, does occur, but in my experience is rare. People have responded by saying CFS is short-lived, non-existent, a scam, just burn out etc.

I use the term ME now, and have for years. People think this sounds dire - which it is. People laugh at the CFS label.

This study seems to be a response to the justified disgust the ME community has for the stupid term "CFS". This research is unconvincing re real world experiences.

BruceInOz · Dec 9, 2018

The abstract sounds like they compared a hypothetical person with tiredness symptoms and no diagnosis to one with tiredness symptoms and a CFS diagnosis. Sort of a no brainer. A comparison with a range of alternative labels (ME, SEID) may have started to be interesting.

Little Bluestem · Dec 15, 2018

Trish said: ↑

Get a bunch of students to answer a hypothetical question about what support they might give to a friend diagnosed with CFS
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People's hypothetical support often greatly exceeds their actual support. I, of course, am really going to end world hunger.

Snow Leopard · Dec 15, 2018

Little Bluestem said: ↑

People's hypothetical support often greatly exceeds their actual support. I, of course, am really going to end world hunger.
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I'm going to end all wars!

Webdog · Dec 18, 2018

From the 2015 IOM/NAM report:

National Academy of Medicine said:

As discussed in Chapter 2, many patients and researchers are critical of the term “chronic fatigue syndrome,” which is the name most commonly ascribed to this disease in the United States (but not in other parts of the world). Patients in particular find this term stigmatizing and trivializing, and there is evidence to support these perspectives. The way an illness is labeled affects the illness experience (Wojcik et al., 2011). Labels convey meanings that affect patients' perception of their illness as well as the reactions of others, including medical personnel, family members, and colleagues (Jason and Richman, 2008; Jason et al., 2002b; Wojcik et al., 2011). As noted in Chapter 2, patients have reported that many clinicians are dismissive, making such comments as “I am fatigued all the time, too.” Perceptions of a patient by others are important because they have been shown to affect the course of a disorder and may be associated with different outcomes (Wojcik et al., 2011).

In addition to the personal experiences presented in Chapter 2, several investigators have examined the attitudes and beliefs elicited by different diagnostic labels for ME/CFS. Among medical students, the term “myalgic encephalomyelitis” was more likely to be classified as a disease than the term “chronic fatigue syndrome” (Erueti et al., 2012). Among medical trainees and college students, the term “myalgic encephalomyelitis” was “more likely to prompt beliefs in a physiological cause for the illness” than the term “chronic fatigue syndrome” (Jason et al., 2002b, 2004a, p. 223).

Conclusion: The committee agrees that the term “chronic fatigue syndrome” often results in stigmatization and trivialization and should no longer be used as the name of this illness.

https://www.ncbi.nlm.nih.gov/books/NBK284898/#sec_058
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Could disease labelling have positive effects? An experimental study exploring the effect of the CFS label on intended social support, 2018, Noble

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Could disease labelling have positive effects? An experimental study exploring the effect of the CFS label on intended social support, 2018, Noble

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Trish Moderator Staff Member

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