CDC:Coping Styles in Chronic Fatigue Syndrome: Findings from a Population-Based Study

[Mula]

What allowed them to conclude that those in bold were associated with CFS?

 

[Esther12]

They got their CFS sample to fill in the questionnaire, and compared that to results from healthy controls.

Table 1. Coping styles in CFS cases and well controls
Coping strategies WCQ summary scores (95% CI) F values with d.f. p values Effect
size !2
CFS
(n = 113)
well controls
(n = 124)

Escape-avoidance 14.2 (13.3–15.1) 10.9 (10.4–11.4) F(1, 225) = 32.51
F(1, 223) = 27.95
<0.0011
<0.0012
0.13
0.11

Confrontive coping 12.3 (11.6–13.0) 9.8 (9.3–10.3) F(1, 225) = 29.24
F(1, 223) = 24.41
<0.0011
<0.0012
0.12
0.10

Distancing 11.6 (10.9–12.2) 10.4 (9.9–10.9) F(1, 225) = 4.86
F(1, 223) = 3.64
0.0281
0.0582
0.02
0.02

Self-controlling 16.3 (15.6–17.1) 14.6 (13.9–15.4) F(1, 225) = 13.52
F(1, 223) = 11.14
<0.0011
0.0012
0.06
0.05

Seeking social support 12.8 (12.1–13.5) 12.3 (11.6–13.0) F(1, 225) = 1.88
F(1, 223) = 2.08
0.1711
0.1512
0.01
0.01

A ccepting responsibility 8.0 (7.4–8.6) 6.2 (5.8–6.7) F(1, 225) = 19.19
F(1, 223) = 15.97
<0.0011
<0.0012
0.08
0.07

Planful problem solving 14.3 (13.5–15.0) 13.9 (13.1–14.7) F(1, 225) = 1.44
F(1, 223) = 1.09
0.2321
0.2972
0.01
0.01

Positive reappraisal 15.2 (14.2–16.1) 14.5 (13.5–15.4) F(1, 225) = 0.95
F(1, 223) = 0.72
0.3321
0.3972
0.004
0.003
1 Age, sex, race, and education level are covariates.
2 Age, sex, race, education level, depressivity, and anxiety are covariates.

 

[WillowJ]

I would think that those bold items are not necessarily maladaptive, depending on circumstances.

Confrontive coping, for instance, is very necessary in our particular situation This can be maladaptive, of course, but can also be useful - for crying out loud if most everyone in your life is trying to get you to do something that you well know is detrimental (exercise, perhaps?), then this is healthy!

There is nothing wrong with self-controlling unless it's excessive (you have no one to talk to at all, or don't admit when things bother you even to yourself and this carries on over time). Still, it our bad social situation where we tend to be ostracised, criticised, and cast off by family can exacerbate this and some of us *don't* have anybody to talk to. Particularly those the psych school got to first and told not to join a support group or reach out on the internet!

I don't know where they get off thinking 'accepting responsibility' is madadaptive. Clearly they want to have it both ways: we did this to ourselves by allowing ourselves to freak out and get deconditioned by our ridiculous worry over normal symptoms, but we aren't supposed to lecture ourselves? This is the one instance I think we probably shouldn't be using. Yes, it's too easy to overdo: life happens and we don't get to pace. Also disease has happened and we don't get to be the responsible, social people we used to be. But neither of those should result in lecturing ourselves. All other reasons for lecturing ourselves are probably a result of maladaptive advice from these very medical professionals & their good friends and society in general who has been informed by them!

Escape-avoidance - I really don't know what's left to us. In a way we're all hoping for a miracle. Sure, we can make plans, but what we have to work with is not so much. Most of what we need depends on others (social support, doctors, and so forth) and even if we get all that, it's going to make us somewhat more functional but not necessarily all better. So I think it's pretty clear that this is being rational, not dodging reality. Clearly that question was written for contexts other than people with chronic uncurable diseases!

ETA: there might be valid non-disease-related reasons to lecture ourselves/accept responsibility, of course. It's just that the disease and circumstances surrounding it are not a valid cause of self-blame.

 

[Snow Leopard]

Agreed, the conclusions are not valid as they stand. A chronically diseased control group with a matched level of disability would have revealed the problems in analysis, but unfortunately these authors were content with a more shoddy methodology.

 

[Snow Leopard]

Further, this questionnaire has been used in other groups and similar differences were found:

http://www.ncbi.nlm.nih.gov/pubmed/7937172

Abstract

The purpose of this study was to examine the construct validity of the Ways of Coping Questionnaire in a clinical population. The questionnaire, designed to measure coping behaviors in a community-residing well population, contained eight empirically constructed factors. Confirmatory factor analysis with LISREL was used to validate this original eight-factor model with 655 community-residing adults with multiple sclerosis or a spinal cord injury. The hypothesized model was not a good fit to the data. Subsequent analyses, using both exploratory and confirmatory factor analysis procedures, identified three different coping factors: Cognitive Reframing, Emotional Respite, and Direct Assistance. These factors appeared to have greater applicability to people with chronic conditions. The kinds of coping behaviors used to manage stressful situations by individuals who are well may be quite different from those used by community-residing populations with long-term chronic conditions.

 

[biophile]

We are nearly 25 years in from the CDC definition of CFS in 1988. The fact that sloppy papers are still streaming from the CDC are concerning and suggest systemic incompetence or even a prolonged intent to promote the psychological problems of CFS patients.

Due to their work on CFS, my opinion of the CDC has been tainted to the point where I cannot watch a movie like "Contagion" without a part of me cringing inside at the idea of the CDC being the first line of defense in such a situation. Obviously there is a difference between a serious CDC effort while people are dying, vs something poorly funded that they never cared about and even made fun of ie CFS, but still.

 

[Dolphin]

All the questions for "Ways of Coping Questionnaire (WCQ)" are at: http://caps.ucsf.edu/uploads/tools/surveys/pdf/Ways of coping.pdf

 

[Dolphin]

Tate Mitchell posted the following on Co-Cure https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1207b&L=co-cure&F=&S=&P=7462:

I've read the full paper/letter now. The paper/letter makes the same [odd] points.

 

[Dolphin]

The "escape-avoidance" strategy (most prominent) may be a natural consequence of chronic pain/discomfort and attempts to reduce post-exertional symptoms.

Seems plausible:

Scale 6: Escape-Avoidance

58. Wished that the situation would go away or somehow be over with.
11. Hoped a miracle would happen.
59. Had fantasies or wishes about how things might turn out.
33. Tried to make myself feel better by eating, drinking, smoking, using drugs or medication, etc.
40. Avoided being with people in general.
50. Refused to believe that it had happened.
47. Took it out on other people.
16. Slept more than usual.

 

[Esther12]

Further, this questionnaire has been used in other groups and similar differences were found:

http://www.ncbi.nlm.nih.gov/pubmed/7937172

Abstract

The purpose of this study was to examine the construct validity of the Ways of Coping Questionnaire in a clinical population. The questionnaire, designed to measure coping behaviors in a community-residing well population, contained eight empirically constructed factors. Confirmatory factor analysis with LISREL was used to validate this original eight-factor model with 655 community-residing adults with multiple sclerosis or a spinal cord injury. The hypothesized model was not a good fit to the data. Subsequent analyses, using both exploratory and confirmatory factor analysis procedures, identified three different coping factors: Cognitive Reframing, Emotional Respite, and Direct Assistance. These factors appeared to have greater applicability to people with chronic conditions. The kinds of coping behaviors used to manage stressful situations by individuals who are well may be quite different from those used by community-residing populations with long-term chronic conditions.

Ta SL. Does anyone know if they mentioned escape/avoidance in the full paper?

Thanks for the questionnaire Dolphin.

 

[Snow Leopard]

Ta SL. Does anyone know if they mentioned escape/avoidance in the full paper?.

I don't have access to the full text, sorry.

I also saw this paper which questions the 'coping models' models used:
http://psycnet.apa.org/journals/pas/5/3/361/

 

[Esther12]

Scale 6: Escape-Avoidance

58. Wished that the situation would go away or somehow be over with.
11. Hoped a miracle would happen.
59. Had fantasies or wishes about how things might turn out.
33. Tried to make myself feel better by eating, drinking, smoking, using drugs or medication, etc.
40. Avoided being with people in general.
50. Refused to believe that it had happened.
47. Took it out on other people.
16. Slept more than usual.

I was being bugged by this last night.

Patients responses to CFS is often affect by the psychosocial quackery which encourages them to believe that they have control over their symptoms and recover by managing their activity and cognitions. If those beliefs are not accurate reflections of reality, then it will lead to abnormal cognitions elsewhere, and also promote prejudice and stigmatisation from other sections of society.

58: That seems a sensible desire, particularly if one is being encouraged to believe that this is a plausible outcome.
11: Why not?
59: Positive thinking? Focusing on recovery?
33: Tried to make oneself feel better? Oh-oh (and don't CFS patients tend to drink, smoke and eat unhealthily less than is normal? Since I've fallen ill, I know that I've put much more effort in to trying to make myself feel better by adopting a healthy lifestyle).
40: Socialising is really tiring, but I prioritised it for the first 5 years of being ill... it was made more difficult by the prejudices which surround CFS, and which I had helped promote through my own trust in the claims of quacks early in my illness.
50: What had happened? What is it CFS patients are meant to be coming to terms with? That they're deconditioned, but this can be reversed? That they have an unreasonable fear of exercise which they can change? Or that they are profoundly disabled and unlikely to recover without there being some future medical breakthrough? Refused to believe that it had happened, or were 'managed' in to believing that it had not?
47: Given the number of quacks making money from CFS, there are plenty of people to take it out on. It pr5bably would be worth trying to account for the level of quackery which surrounds a particular condition, in order to try to understand whether the greater levels of anger and resentment from those diagnosed with CFS are reasonable or not.
16: Slept more than normal? With Chronic Fatigue Syndrome? How perfectionist.

I don't have access to the full text, sorry.

I also saw this paper which questions the 'coping models' models used:
http://psycnet.apa.org/journals/pas/5/3/361/

Ta SL. A lot of the questionnaires used in psychiatry seem pretty dodgy to me, and it's weird how trusted they often seem to be. Whenever I look at an actual questionnaire, the way in which results from it are used look dodgy.

 

[Dolphin]

I think that's a great idea. And I think the approach should be used in biological studies, particularly those of potential biomarkers, as well as studies lookinng at potential psychological factors. In both cases, the key question is 'how do we know these factors/markers are specific to ME/CFS, rather than some generic secondary consequence?'.

It could be useful at some stage. However, money is generally tight in the ME/CFS field so think it would be difficult to do with the first study or two as it might half/similar the sample size of ME/CFS patients.

Also, one would want to be pretty sure the controls don't have ME/CFS, either along with or on top of any other condition, or it would defeat the purpose.

 

[Dolphin]

They got their Wichita CFS sample

You mentioned Wichita more than once. This was the Georgia cohort - prevalence 2.54%.

 

[Dolphin]

The PhD Thesis:
"Coping with Chronic Fatigue Syndrome: Sufferers and their Carers"
Susanne Ax (1998)
Birkbeck College, University of London.
also used this questionnaire.

I don't have the time/interest to look through it now to compare and contrast.
It can be downloaded for free from: http://ethos.bl.uk/OrderDetails.do?did=17&uin=uk.bl.ethos.299935

ABSTRACT

Sufferers' and carers' reports of coping with chronic fatigue syndrome are described and
research into this area is reviewed. On the basis of the existing lack of knowledge about
coping with and adjustment to chronic fatigue syndrome, four studies are reported.
These reflect a methodological and thematic progression.

The first questionnaire study provided information on the extent to which sufferers and
carers reported several coping strategies. It highlighted those differences in coping
associated with gender, the absence of a carer among sufferers, and the type of the
sufferer-carer relationship.

The second study, which employed interviews, explored sufferers' and carers'
perceptions of their coping behaviour and the effectiveness of strategies. This study
suggested that sufferers and carers perceived coping to have changed across three stages
(before and after the diagnosis, and during adjustment).

Study 3, involving a revised questionnaire, provided statistical support for the
conclusions of Study 2, i.e., for perceived changes of coping and coping effectiveness
over time. It also provided infonnation about the association between coping and illness
beliefs, such as perceived control, illness attributions, and perceived functional
impairment.

The main focus of the final interview study was the detailed exploration of appraisal and
coping within each of the three coping stages identified earlier. This gave detailed
insight into the perceptions of the coping process of a small group of sufferers and
carers.

The importance of the findings, and their implications for future research and cognitivebehavioural therapy, are discussed.

Not sure how relevant the following is but came across this piece summary the above PhD (in Brocki's PhD)

Ax (1999) looked at differences in coping stategies between CFS patients and their
carers using a version of the Ways of Coping questionnaire (WoC; Folkman and
Lazarus, 1988) adapted for use with CFS patients and their carers. Following factor
analysis of the data obtained, two factors were identified, each made up of several
scales from the WoC: stress-reduction coping (including confrontive coping, seeking
social support, positive reappraisal and planful problem solving) and distressreduction
coping (including distancing, self-control, accepting responsibility and
escape/ avoidance). These scales closely resemble the distinction between problemfocused
coping and emotion-focused coping drawn elsewhere in the literature which
is unsurprising given the data input and the existing literature. Stress-reduction
coping nonetheless refers to 'a problem-focused approach to reducing or eliminating
the stressful situation' and distress-reduction coping to 'reducing mental distress
which results from experiencing or anticipating a stressful situation' (page 41) (Ax,
1999). Spousal carers of CFS patients reported employing fewer stress-reduction
coping strategies than did mothers, and there was a trend towards the use of fewer
distress-reduction coping strategies too. Husbands who were carers endorsed
significantly fewer distress-reduction coping strategies than wife carers and there was
a trend toward the use of fewer stress-reduction coping strategies than wife carers.
Ax (1999) suggests (based on research into dementia) that husbands and wives may
view the caring role differently, with wives using a caregiving model based on a
parent-infant interactions and husbands using a model based on employment.
According to this latter model, the role of carer `involves less work and emotional
distress' (page 55) (Ax, 1999) and it is suggested that the demands of the coping role
are thus lower for male spouses. Whilst this seems an eminently reasonable
suggestion, there is little in the data which can be said to lead to this conclusion and
further research using this model would be required to back up this supposition. An
alternative possibility is that these results reflect a particular response set in men.

Ax also published some of the results in:
Ax, Susanne(1998)
'Coping Differences Between Chronic Fatigue Syndrome Sufferers and Their Carers',
Journal Of Chronic Fatigue Syndrome,5:2,27 — 62

ABSTRACT.

The main objective of the present study was to describe
the extent to which CFS sufferers and their carers reported to have used
a number of coping strategies over the course of the illness, and to find
out if reports of coping differed between groups of these. In addition,
associations between married sufferers and carers were investigated.
From a methodological point of view, the factorial structure and the
usefulness of the Ways of Coping Questionnaire (Folkman & Lazarus,
1988) in CFS was studied.

The results indicated no gender differences. There were also no
differences between sufferers supported and not supported by a carer.
However, the results indicated reduced coping responses of carer husbands.
From a methodological point of view, the emergence of comparable
factors for sufferers and carers, which were also closely related to
the original emotion and problem-focused factors, suggested that the
use of the questionnaire was appropriate. The importance of these findings
for coping research and therapy are discussed.

 

[Esther12]

You mentioned Wichita more than once. This was the Georgia cohort - prevalence 2.54%.

Ta D. Edited. Not sure what I was thinking - I can't really remember this paper now. Must have got my wires crossed though.

 

[Dolphin]

Another PhD that used it, for what it's worth. Not sure where I found it but I didn't pay for it.

PREDICTORS OF QUALITY OF LlFE AND ADJUSTMENT TO CHRONlC FATIGUE SYNDROME
Janette Marie Collier, MA
A Dissertation
Submitted to the Faculty of Graduate Studies and Research
Through the Departrnent of Psychology
in Partial Fulfilment of the Requirements for
the Doctoral Degree at the University of Windsor
Windsor, Ontario, Canada
2000

(c) 2000 Janette Marie Collier

ABSTRACT

The present research examined factors that contributed to the psychosocial
adjustment and quality of life of individuals with Chronic Fatigue Syndrome
(CFS). Variables studied included coping strategies, health locus of contfol.
social support. quality of life, and psychosocial adjustment to illness. Forty CFS
patients volunteerd to participate in this study. Coping strategies were
conceptualized in accordance with Lazarus and Folkman's (1984) stress and
coping paradigm and were assessed using the Ways of Coping Questionnaire
(Folkrnan 8 Lazarus. 1988). Social support was conceptualized as a
multidimensional construct involving social interaction. instrumental support. and
positive and negative subjective support. Social support was assessed using
both the Duke Social Support Index (Koenig et al., 1993) and the Social Support
in lllness Scale (Ray, 1992). Health locus of control was assessed using the
Multidimensional Health Locus of Control ScaleForm C (Wallston et al, 1994).
Psychosocial adjustment was assessed using the Psychosocial Adjustment to
lllness Scale-Self Report (Derogatis. 1978). Quality of life was conceptualised
as a subjective construct involving several dimensions and was assessed using
the Quality of Life Scale designed by Flannigan (1978). Correlational and
multiple regression analyses were conducted with coping strategies, social
support, and heaith locus of wntrol as predictors of measured adjustment to
illness, and quality of life. Results indicated that in general, emotion-focussed
coping and negative social support were negative prediaors of quality of lik and
psychosocial adjustrnent to CFS. Probiem-focussed coping, an internal health
locus of control and social support wre positive predictors of quality of life and
psychosocial adjustment. CFS patients face numerous difficulties in dealing with
their illness, requiring flexibility in their use of coping strategies and strong
emotional support from the people in their lives. As with other chronic ilInesses,
patients must leam what aspects of their disease can be personally controlied
while maintaining sorne belief in the infiuence of luck or fate to avoid feelings of
guilt and hopelessness in the face of uncontrollable symptoms.

 

[Dolphin]

Another study to use the questionnaire is:

Tuck, Inez, Wallace, Debra, Casalnuova, Gregory and May, Barbara(1999)'Psychosocial Responses of Sufferers of Chronic Fatigue Syndrome',Journal Of Chronic Fatigue Syndrome,7:3,49 — 63

Again they made their own factors.

 

[Dolphin]

Another study to use it:

The role of coping in the relationship between depression and illness severity in chronic fatigue syndrome.

J Allied Health. 2009 Summer;38(2):91-9.


Walker K, Lindner H, Noonan M.
Source

School of Psychology, Australian Catholic University, Melbourne, Victoria, Australia. mskarenwalker.@gmail.com
Abstract

The self-regulatory model (SRM) proposes that both cognitive and emotional illness representations influence the coping processes adopted in response to an illness.

AIM:​

This study used the SRM to explore the role of coping in the relationship between depression and self-appraisals of illness severity in a population of patients with chronic fatigue syndrome (CFS).

METHODS:​

The sample comprised 156 participants, 34 men and 121 women, aged between 18 and 78 yrs, who had been medically diagnosed with CFS. Participants were asked to complete three questionnaires: the Cardiac Depression Scale, Ways of Coping Questionnaire, and Severity Subscale of the Illness Perceptions Questionnaire-Revised.

RESULTS:​

Analyses revealed that almost 70% of the participants were moderately or severely depressed. Additionally, two particular subscales, social support seeking and positive reappraisals, emerged as positively contributing to self-appraisals of illness severity (beta = 0.20 [p < 0.05] and beta = 0.21 [p < 0.05], respectively), thereby supporting the SRM. Furthermore, results indicated that a combination of depression and coping was a better predictor of illness severity than depression alone, accounting for 22% of the variance compared with 8%, respectively.

CONCLUSIONS:​

The findings suggest that focusing on depression, and particularly coping styles, during treatment interventions could have important implications for therapeutic interventions. This could lead to better treatment strategies for health professionals who work with patients with CFS.
PMID:

19623790

[PubMed - indexed for MEDLINE]

The numbers look quite different:

TABLE 1. Scale Descriptives of the CDS, WOCQ, and Self-Appraisals of Illness Severity (n = 156)


Subscale Items Range Mean (SD) Cronbach alpha Coefficients

CDS 26 26–182 108 (22.4) 0.90

WOCQ

Confrontive 6 0–18 5.81 (2.68) 0.58
Distancing 6 0–18 5.96 (3.13) 0.69
Self-controlling 7 0–21 10.17 (2.02) 0.53
Social support seeking 6 0–18 9.44 (3.91) 0.80
Accepting responsibility 4 0–12 4.43 (2.45) 0.67
Escape avoidance 8 0–24 7.74 (4.43) 0.72
Planful problem solving 6 0–18 9.14 (3.50) 0.78
Positive reappraisals 7 0–21 9.84 (4.76) 0.77

IPQ-R
Identity severity 28 0–28 20.10 (5.29) 0.86
CDS, Cardiac Depression Scale; WOCQ, Ways of Coping Questionnaire; IPQ-R, Illness Perceptions Questionnaire–Revised.

 

[Dolphin]

This is the earlier CDC study. Full text at: http://cfids-cab.org/cfs-inform/Cfsliving/nater.etal06.pdf.
Figures are in Table 1.

Coping styles in people with chronic fatigue syndrome identified from the general population ofWichita, KS.

J Psychosom Res. 2006 Jun;60(6):567-73.
Nater UM, Wagner D, Solomon L, Jones JF, Unger ER, Papanicolaou DA, Reeves WC, Heim C.
Sourc

e

Viral Exanthems and Herpesvirus Branch, Division of Viral and Rickettsial Diseases, National Center for Infectious Diseases, Centers for Disease Control and Prevention, Atlanta, GA, USA.
Abstract

OBJECTIVE:​

Studies of primary and tertiary care patients suggest that maladaptive coping styles contribute to the pathogenesis and maintenance ofchronic fatigue syndrome (CFS). We assessed coping styles in persons with unexplained fatigue and nonfatigued controls in a population-based study.

METHODS:​

We enrolled 43 subjects meeting the 1994 Research Case Definition of CFS, matching them with 61 subjects with chronic unexplainedfatigue who did not meet criteria for CFS [we term them insufficient symptoms or fatigue (ISF)] and 60 non-ill (NI) controls. Coping styles and clinical features of CFS were assessed using standard rating scales.

RESULTS:​

Subjects with CFS and ISF reported significantly more escape-avoiding behavior than NI controls. There were no differences between the CFS and ISF subjects. Among participants with CFS, escape-avoiding behavior was associated with fatigue severity, pain, and disability.

CONCLUSIONS:​

We demonstrate significantly higher reporting of maladaptive coping in a population-based sample of people with CFS and other unexplained fatiguing illnesses defined by reproducible standardized clinical empirical means in comparison to NI controls.
PMID:

16731231

[PubMed - indexed for MEDLINE]