Living with the unexplained: coping, distress, and depression: CFS +/or FMS vs autoimmune disorder

[Dolphin]

Possibly not the most exciting study ever but I've read it and thought I'd post a little on or from it

Living with the unexplained: coping, distress, and depression among women with chronic fatigue syndrome and/or fibromyalgia compared to an autoimmune disorder.

Anxiety Stress Coping. 2014 Mar 3. [Epub ahead of print]

McInnis OA1, Matheson K, Anisman H.

Author information

Abstract*

Chronic fatigue syndrome (CFS) and fibromyalgia are disabling conditions without objective diagnostic tests, clear-cut treatments, or established etiologies.

Those with the disorders are viewed suspiciously, and claims of malingering are common, thus promoting further distress.

It was hypothesized in the current study that levels of unsupportive social interactions and the coping styles used among those with CFS/fibromyalgia would be associated with perceived distress and depressive symptoms.

Women with CFS/fibromyalgia (n = 39), in fact, reported higher depression scores, greater perceived distress and more frequent unsupportive relationships than healthy women (n = 55), whereas those with a chronic, but medically accepted illness comprising an autoimmune disorder (lupus erythematosus, multiple sclerosis, rheumatoid arthritis; n = 28), displayed intermediate scores.

High problem-focused coping was associated with low levels of depression and perceived distress in those with an autoimmune condition.

In contrast, although CFS/fibromyalgia was also accompanied by higher depression scores and higher perceived distress, this occurred irrespective of problem-focused coping.

It is suggested that because the veracity of ambiguous illnesses is often questioned, this might represent a potent stressor in women with such illnesses, and even coping methods typically thought to be useful in other conditions, are not associated with diminished distress among those with CFS/fibromyalgia.

PMID: 24479644 [PubMed - as supplied by publisher]

*I gave each sentence its own paragraph

 

[Dolphin]

They mention looking for people in support centres and online support groups across Canada. I'm guessing this means Phoenix Rising wasn't a source, but maybe somebody can remember otherwise?
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Here's more specific info on the diagnoses of those who took part:

The autoimmune group primarily comprised individuals who reported a diagnosis of RA (n = 17, 60.71%), whereas the remainder reported having either lupus erythematosus (n = 7, 25.00%) or MS (n = 4, 14.29%). The CFS/fibromyalgia group comprised individuals who reported being diagnosed with fibromyalgia (n = 22, 56.41%) or a diagnosis of CFS (n = 11, 28.21%), with the remainder reporting concurrent diagnoses of the two conditions (n = 6, 15.38%).

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Although it wasn't clear to me from the introduction, by the end I was inclined to think the authors were sympathetic to ME/CFS and not inclined to see the condition as primarily behavioural e.g.

As expected, aspects of unsupportive social interactions, notably distancing and minimizing, were higher among women with CFS/fibromyalgia relative to both healthy women and those with autoimmune disorders. CFS and fibromyalgia are both legitimate disabling conditions that likely have a biological basis (Parker, Wessely, & Cleare, 2001), possibly being subserved by immunological and cytokine disturbances (Bansal, Bradley, Bishop, Kiani-Alikhan, & Ford, 2012; Di Franco, Iannuccelli, & Valesini, 2010). However, these conditions have a history of being questioned and often those with the illness are viewed as being malingerers (Åsbring & Närvänen, 2002).

 

[Dolphin]

I thought the conclusion they came through in the last sentence was interesting enough:

Conclusion

Women living with CFS and fibromyalgia endure unique challenges, such as unsupportive social interactions, which impact their well-being. Thus, although problem-focused coping was accompanied by low levels of depression among women with an autoimmune disturbance, this relation was not evident among those with CFS/ fibromyalgia. It seems that endorsing a coping style that is usually viewed as being highly adaptive may not appear so among individuals dealing with an illness that is not well understood and has not received widespread acceptance and, indeed, is often accompanied by stigma. Thus, for these women alternative interventions aimed at attenuating feelings of distress and depressive symptoms might be more effective, including interventions that focus on altering appraisals of events. As well, the present findings reinforce the importance of addressing the psychosocial correlates of CFS/fibromyalgia, possibly through proper education of the public and health-care providers regarding such “unexplained” conditions. To do so, it might be necessary to document the existence of consistent biological substrates underlying these illnesses before they are accepted as being valid syndromes.

 

[Dolphin]

This was a measure they used:

Unsupportive social interactions

The Unsupportive Social Interactions Inventory (Ingram et al., 2001) is a 24-item inventory that assessed how often [from “none” (zero) to “a lot” (four)] during the last month the participants experienced unsupportive responses when they talked with others about events in their life. The scale contains four underlying dimensions measuring unsupportive or upsetting responses they may have received: distancing (behavioral or emotional disengagement, e.g., “would not seem to want to hear about it.”; Cronbach’s α = .91), bumbling (behaviors that are awkward, uncomfortable or intrusive, e.g., “would not seem to know what to say, or would seem afraid of saying or doing the ‘wrong’ thing.”; Cronbach’s α = .82), minimizing (attempts to force optimism, or to minimize the individual’s concerns, e.g., “would feel that I was overreacting.”; Cronbach’s α = .90), and blaming (criticism or finding fault, e.g., “would make ‘I told you so’ or similar comments.”; Cronbach’s α = .88).

The CFS/FM group had statistically higher/worse levels on all four measures (and the total score) compared to healthy controls.

The CFS/FM group had statistically higher/worse levels on all four measures (and the total score) compared to the autoimmune patients, and this was statistically higher/worse for "distancing" and "minimizing". Probably with a bigger sample, the result would have been statistically significant for the other two.

 

[Dolphin]

(I spaced out this paragraph to make it easier to read)

Coping styles

The Survey of Coping Profile Endorsement (Matheson & Anisman, 2003) is a 50-item scale that assesses the means individuals use to cope.

On a scale of one “never” to five “almost always,” participants indicated the extent to which they would use this as a way of dealing with problems or stressors in recent weeks.

A principal component analysis with a varimax rotation was performed to determine the factors this scale was comprised of. Items were included on a factor when loadings were greater than .40.
Emotion-focused coping comprised ruminations, emotional expression, blaming others and wishful thinking (Cronbach’s α = .91). Specifically, some of the items included as emotion-focused coping were: “gone over your problems in your mind over and over again?,” “found yourself crying more than usual?.”

Avoidant coping comprised cognitive distraction, passive resignation, emotional containment and self-blame (Cronbach’s α = .84). The avoidant factor included items such as “resigned yourself to your problems?,” “kept your feelings bottled up inside?.”

Problem-focused coping comprised problem solving, cognitive restructuring, active distraction, and social support (Cronbach’s α = .89). Example items that comprised problem-focused coping included “sought out information that would help you solve your problems?”, “made plans to overcome your problems?.”

The odd thing they found was that with increasing use of problem-focused coping, in the CFS/FMS group, perceived distress increased very slightly (slope=0.02), while for autoimmune disorders it decreased (slope=-0.43) and for healthies, it decreased a small bit more again.

Similarly the results for depression were different with regard to problem-focused coping: with increasing use of problem-focused coping, in the CFS/FMS group, depression increased slightly (slope=0.84), while for autoimmune disorders it decreased (slope=-6.20) and for healthies, it also decreased although not quite as severely.

This is how they discussed this bit:

Among healthy women and in those with an autoimmune disorder, a strong negative relationship existed with respect to problem-focused coping and both perceived stress and depression scores. In contrast, this relationship was not evident among women with CFS/ fibromyalgia. Although no differences in coping styles have been reported when comparing individuals with CFS to individuals with medically explained fatigue and those with idiopathic fatigue (Jason et al., 2003), others have reported greater endorsement of escape-avoidance strategies and lower use of problem-focused coping among individuals with CFS (Afari et al., 2000). It will be recalled that coping is not inherently adaptive or maladaptive and although coping styles are relatively fixed, it remains possible that they may change over time and across situations. Ordinarily, it might be expected that a problem-focused coping style would have beneficial effects among those suffering from a chronic condition, and this relationship was in fact observed among women with an autoimmune disorder. In contrast, the relationship between problem-focused coping and both perceived stress and depression was not apparent among women with CFS/fibromyalgia. It is possible that the challenges these women face (e.g., seeking out information when information is limited, seeking social support but being met with unsupportive responses) might have been responsible for the absence of an association between this form of coping and levels of perceived stress and depressive symptoms. As the current study measured coping styles, an important extension of these findings would be to determine coping strategies among those living with these conditions in the context of different stressors, including those that were illness-related or unrelated.

 

[Esther12]

While not an interpretation of the 'unsupportive social interactions' data that there's any good evidence to support, it is possible that those with CFS/FMS just tend to complain more, or expect unreasonably more from those around them. It is just a self-report questionnaire.

Although I don't see this sort of research as particularly enlightening, this piece sounded about as well meaning and helpful as we could hope for. Thanks D.

 

[Snow Leopard]

While not the most exciting paper, I am glad that there are at least a few willing to take on the social side, and examine coping styles and distress in depth rather than simply claiming the distress is due to bad coping styles like some authors we know...

 

[N.A.Wright]

This sort of study would benefit from having gender comparison. It is quite possible that men and women experience quite different positive/negative interactions in differing social contexts. Research, particularly social research that deals with ME/CFS solely as a 'women's disease' is missing valuable reference and comparison points.