Tag: coping

The Role of Psychotherapy in the Care of Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Abstract:

Myalgic encephalomyelitis/chronic fatigue (ME/CFS) is a post-infectious, chronic disease that can lead to severe impairment and, even, total disability. Although the disease has been known for a long time, and has been coded in the ICD since 1969 (G93.3), medical research has not yet been able to reach a consensus regarding its physiological basis and how best to treat it. Against the background of these shortcomings, psychosomatic disease models have been developed and psychotherapeutic treatments have been derived from them, but their empirical testing has led to sobering results.
According to the current state of research, psychotherapy and psychosomatic rehabilitation have no curative effect in the treatment of ME/CFS. Nevertheless, we see numerous patients in practices and outpatient clinics who suffer severely as a result of their illness and whose mental well-being and coping strategies would benefit from psychotherapeutic help.
In this article, we outline a psychotherapeutic approach that serves this need, taking into account two basic characteristics of ME/CFS: firstly, the fact that ME/CFS is a physical illness and that curative treatment must therefore be physical; and secondly, the fact that post exertional malaise (PEM) is a cardinal symptom of ME/CFS and thus warrants tailored psychotherapeutic attention.
Source: Grande T, Grande B, Gerner P, Hammer S, Stingl M, Vink M, Hughes BM. The Role of Psychotherapy in the Care of Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Medicina. 2023; 59(4):719. https://doi.org/10.3390/medicina59040719 (Full text)

Specifics of chronic fatigue syndrome coping strategies identified in a French flash survey during the COVID-19 containment

Abstract:

The COVID-19 pandemic has focused health systems on supporting patients affected by this virus. Meanwhile in the community, many other contained patients could only use self-care strategies, especially in countries that have set up a long and strict containment such as France. The study aimed to compare coping strategies deployed by patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS; a poorly recognised syndrome) to those with better known and referenced chronic conditions. An online flash survey was conducted during the containment period in partnership with French Patients Organizations including ME/CFS national association. Therefore, ‘Brief COPE’ version of Lazarus and Folkman’s Ways of Coping Check List has been adapted to the specificity of the containment.

The survey was e-distributed in France from 15 April to 11 May 2020. Differences of coping strategies were analyzed using Wilcoxon-Mann-Withney test. Amongst 637 responses, 192 were complete, presenting a wide variety of diseases, including 93 ME/CFS. The latter have significantly different coping strategies than recognised diagnosed diseases patients: similar uses of emotion focused coping but less uses of seek social support and problem-focused copings.

In conclusion, coping strategies are different for those who deal with the daily experience of ME/CFS, highly disabling chronic condition with diagnostic ambiguity, low degree of medical and social recognition and without treatment. Better understanding of those strategies is needed to provide the means for health promotion researchers, managers and clinicians, to accompany those patients.

Source: Moncorps F, Jouet E, Bayen S, Fornasieri I, Renet S, Las-Vergnas O, Messaadi N. Specifics of chronic fatigue syndrome coping strategies identified in a French flash survey during the COVID-19 containment. Health Soc Care Community. 2021 Apr 6. doi: 10.1111/hsc.13376. Epub ahead of print. PMID: 33825299. https://pubmed.ncbi.nlm.nih.gov/33825299/

Patients’ hopes for recovery from myalgic encephalomyelitis and chronic fatigue syndrome: Toward a “recovery in” framework

Abstract:

Objective: There is no consensus on recovery from myalgic encephalomyelitis and chronic fatigue syndrome, which has spawned debates when interpreting outcome research. Within these debates, the patient voice is often neglected. This study aimed to understand how patients conceptualize recovery – regarding the definition and possibility of recovery.

Method: We conducted in-depth, semi-structured interviews with 10 older (above age 50) female patients with myalgic encephalomyelitis or chronic fatigue syndrome. Data were analyzed using a deductive thematic analysis.

Results: Our sample viewed recovery as functioning without fear of relapse, returning to previous roles and identities, and achieving a sustained absence of symptoms. Participants expressed skepticism that reaching recovery from myalgic encephalomyelitis and chronic fatigue syndrome exists but working toward significant improvement through coping is a viable goal. Although many accepted they would never reclaim full functioning, participants continued to experience uncertainty about their future with unclear prognostic goals and limited treatment options.

Discussion: Recovery is more than just symptom reduction. Outcome research should incorporate well-being measures like identity, meaning and quality of life, and personal empowerment to enhance recovery definitions. When communicating treatment goals, providers might convey cautious optimism for complete symptom remission, while emphasizing that living a fulfilling life through effective coping strategies is possible.

Source: Devendorf AR, Rown AA, Jason LA. Patients’ hopes for recovery from myalgic encephalomyelitis and chronic fatigue syndrome: Toward a “recovery in” framework. Chronic Illn. 2020;16(4):307-321. doi:10.1177/1742395318815965 https://pubmed.ncbi.nlm.nih.gov/32772569/

Acceptance and identity change: An interpretative phenomenological analysis of carers’ experiences in myalgic encephalopathy/chronic fatigue syndrome

Abstract:

Myalgic encephalopathy/chronic fatigue syndrome is a debilitating condition and many people rely heavily on family carers. This study explored the caring experiences of seven family carers. Four themes were established: relations with others, role and identity changes, coping with change and uncertainty, and information and support seeking. Caring disrupted multiple areas of carers’ lives, including their identities and relationships. Scepticism from others about myalgic encephalopathy/chronic fatigue syndrome was particularly distressing. Acceptance was important for coping and helped some carers achieve positive growth within spousal relationships. Improving support and advice for carers and acknowledging their caring burden could improve their well-being.

Source: Catchpole S, Garip G. Acceptance and identity change: An interpretative phenomenological analysis of carers’ experiences in myalgic encephalopathy/chronic fatigue syndrome. J Health Psychol. 2019 Mar 21:1359105319834678. doi: 10.1177/1359105319834678. [Epub ahead of print] https://www.ncbi.nlm.nih.gov/pubmed/30895822

Cognitive and behavioral coping in people with Chronic fatigue syndrome: An exploratory study searching for intervention targets for depressive symptoms

Abstract:

The aim of the study was to find relevant coping factors for the development of psychological interventions for people with chronic fatigue syndrome who suffer from depressive symptoms. A total of 30 adults with chronic fatigue syndrome filled in the Cognitive Emotion Regulation Questionnaire, the COPE and the Hospital Anxiety and Depression Scale. The findings suggested that cognitive coping strategies have a stronger influence than behavioral coping strategies on depressive symptoms. Especially, the cognitive coping strategies refocusing positive, positive reappraisal and catastrophizing were of importance. These findings suggest that these coping strategies should be part of psychological programs for people with chronic fatigue syndrome.

Source: Kraaij V, Bik J, Garnefski N. Cognitive and behavioral coping in people with Chronic fatigue syndrome: An exploratory study searching for intervention targets for depressive symptoms. J Health Psychol. 2017 May 1:1359105317707259. doi: 10.1177/1359105317707259. [Epub ahead of print] https://www.ncbi.nlm.nih.gov/pubmed/28810458

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

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.

 

Source: McInnis OA, Matheson K, Anisman H. 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;27(6):601-18. doi: 10.1080/10615806.2014.888060. Epub 2014 Mar 3. https://www.ncbi.nlm.nih.gov/pubmed/24479644

 

Examining the energy envelope and associated symptom patterns in chronic fatigue syndrome: does coping matter?

Abstract:

OBJECTIVE/Hypothesis: The objective of this study was to examine sub-types of individuals with chronic fatigue syndrome based on variables that are associated with the energy envelope theory and to examine the role of coping strategies in explaining the differences found between the subtypes.

METHODS: Cluster analysis was used. Grouping variables included physical functioning, post-exertional malaise severity, and the extent to which an individual was outside of the energy envelope. These clusters were evaluated using discriminant function analysis to determine whether they could be differentiated based on coping styles.

RESULTS: Cluster analysis identified three groups. Clusters 1 and 2 were consistent with the energy envelope theory. However, Cluster 3 was characterized by patients with the most impairment, but they were to a lesser extent exceeding their energy envelope. Coping strategies explained a small percentage (10%) of the variance in differentiating the clusters.

DISCUSSION: Energy maintenance may be associated with improved functioning and less severe symptoms for some. However, patients in Cluster 3 were closer to remaining within their energy envelope and also used higher levels of adaptive coping but were more impaired than Cluster 2. This suggests that adaptive coping strategies were not associated with improved health, as members of Cluster 3 were severely limited in functioning.

 

Source: Brown AA, Evans MA, Jason LA. Examining the energy envelope and associated symptom patterns in chronic fatigue syndrome: does coping matter? Chronic Illn. 2013 Dec;9(4):302-11. doi: 10.1177/1742395313478220. Epub 2013 Apr 12. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3893101/ (Full article)

 

‘The letting go, the building up, [and] the gradual process of rebuilding’: identity change and post-traumatic growth in myalgic encephalomyelitis/chronic fatigue syndrome

Abstract:

The aim of this study was to explore the phenomenon of identity change and subsequent post-traumatic growth (PTG) in individuals with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

Ten participants (average illness duration 7.4 years) were interviewed (average length, 79 minutes) via a semi-structured interview schedule and verbatim transcriptions were analysed with interpretative phenomenological analysis. The four superordinate themes revealed were ‘comparisons of past to present self: “you have to be someone else, and you have to live with that”’, ‘the effect of social isolation on identity and subsequent insights into others’ behaviours’, ‘contemplation of future and identity: ”where do I go from here?”‘, and ‘PTG: “the letting go, the building up, [and] the gradual process of rebuilding”‘.

These themes outlined the experiences of those with ME/CFS as they underwent changes in identity due to the limitations the condition imposed on activities and roles, understanding others’ behaviours after a period of isolation, the comparison of the past self with the present self and finally, the positive growth that was noted by two of the interviewees with regards to a new ‘true’ self. Despite the distressing and unpredictable nature of ME/CFS, it appears that individuals with this disorder can experience personal growth.

 

Source: Arroll MA, Howard A. ‘The letting go, the building up, [and] the gradual process of rebuilding’: identity change and post-traumatic growth in myalgic encephalomyelitis/chronic fatigue syndrome. Psychol Health. 2013;28(3):302-18. doi: 10.1080/08870446.2012.721882. Epub 2012 Sep 11. https://www.ncbi.nlm.nih.gov/pubmed/22963543

 

Coping styles in chronic fatigue syndrome: findings from a population-based study

Chronic fatigue syndrome (CFS) is a common and debilitating illness [1]. As yet the pathophysiology of CFS remains inchoate, so pharmacologic management aims to alleviate symptoms and is not curative. Cognitive-behavioral therapy and graded exercise therapy appear to be the most effective treatments for CFS [2]. Such therapies require that patients understand, adhere to and practice specific activities to manage their thoughts and expenditure of physical energy. This necessary understanding and commitment are heavily impacted by patients’ coping styles and concomitant psychopathology. In a previous population-based study, we found that people with CFS were significantly more likely to use maladaptive everyday coping strategies than non-fatigued matched controls [3]. In another population-based study, we found that about 60% of people with CFS suffered psychiatric comorbidity; in particular affective and anxiety disorders [4], and displayed maladaptive personality styles [5]. In the current population-based study, we examined coping styles in CFS and how these are affected by depression and anxiety.

You can read the rest of this article here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3701445/

 

Source: Nater UM, Maloney E, Lin JM, Heim C, Reeves WC. Coping styles in chronic fatigue syndrome: findings from a population-based study. Psychother Psychosom. 2012;81(2):127-9. doi: 10.1159/000329996. Epub 2012 Feb 2. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3701445/ (Full article)

 

Mental quality of life in chronic fatigue is associated with an accommodative coping style and neuroticism: a path analysis

Abstract:

PURPOSE: An accommodative coping style (e.g. acceptance) is related to a better mental health-related quality of life (MHQL) in patients with chronic fatigue syndrome (CFS). We want to explore whether neuroticism is predictive for this coping style and MHQL. Secondly we want to explore the relation between acceptance and physical health-related quality of life (PHQL) and expect that illness-related variables such as fatigue severity and duration are related to PHQL.

METHOD: In this cross-sectional study, 117 patients with chronic fatigue syndrome from an outpatient internal medicine clinic completed self-report questionnaires on quality of life (SF-36), acceptance (ICQ), personality traits (NEO-FFI) and fatigue severity (CIS).

RESULTS: Regression analyses showed that neuroticism and acceptance are predictors of MHQL (38% of the variance was explained). The path analysis showed that acceptance mediates between neuroticism and MHQL and that PHQL is related to MHQL. PHQL is related to fatigue severity and duration, but not to neuroticism and acceptance.

CONCLUSION: Stimulating an ‘accepting accommodative coping style’ within the treatment for CFS is important in improving mental quality of life. Our results suggest that neuroticism may be negatively related to acceptance and MHQL. This findings support the idea that a psychological diagnostic workout with special attention to personality traits in relation to their coping style is recommended in order to choose the most appropriate therapeutic approach in this population.

 

Source: Poppe C, Crombez G, Hanoulle I, Vogelaers D, Petrovic M. Mental quality of life in chronic fatigue is associated with an accommodative coping style and neuroticism: a path analysis. Qual Life Res. 2012 Oct;21(8):1337-45. doi: 10.1007/s11136-011-0048-8. Epub 2011 Oct 29. https://www.ncbi.nlm.nih.gov/pubmed/22038396