Identity and coping experiences in Chronic Fatigue Syndrome: a synthesis of qualitative studies

Abstract:

OBJECTIVE: To provide insight into patients’ and doctors’ experiences with CFS.

METHODS: We compiled available qualitative studies and applied meta-ethnography to identify and translate across the studies. Analysis provided second-order interpretation of the original findings and developed third-order constructs from a line of arguments.

RESULTS: Twenty qualitative studies on CFS experiences were identified. Symptom experiences and the responses from significant others could jeopardise the patients’ senses of identity. They felt severely ill, yet blamed and dismissed. Patients’ beliefs and causal attributions oppose the doctor’s understanding of the condition. For the patient, getting a diagnosis and knowing more was necessary for recovery. Doctors were reluctant towards the diagnosis, and struggle to maintain professional authority. For patients, experience of discreditation could lead to withdrawal and behavioural disengagement.

CONCLUSION: The identities of CFS patients are challenged when the legitimacy of their illness is questioned. This significant burden adds to a loss of previously established identity and makes the patient more vulnerable than just suffering from the symptoms. CFS patients work hard to cope with their condition by knowing more, keeping a distance to protect themselves and learning more about their limits.

PRACTICE IMPLICATIONS: Doctors can support patients’ coping by supporting the strong sides of the patients instead of casting doubt upon them.

 

Source: Larun L, Malterud K. Identity and coping experiences in Chronic Fatigue Syndrome: a synthesis of qualitative studies. Patient Educ Couns. 2007 Dec;69(1-3):20-8. Epub 2007 Aug 14. https://www.ncbi.nlm.nih.gov/pubmed/17698311

 

The relationship between chronic fatigue and somatization syndrome: a general population survey

Abstract:

OBJECTIVE: The objective of this study was to assess the prevalence of chronic fatigue (CF) and its association with somatization syndrome [Somatization Syndrome Index (SSI) 4/6: >/=4 somatoform symptoms in men, 6 in women] in the general population.

METHODS: A representative sample of the German population (N=2412) completed a fatigue questionnaire and a screening instrument for current somatoform symptoms (Screening for Somatoform Symptoms 7).

RESULTS: The prevalence rate of CF was 6.1% (n=147). Females were affected significantly more often as compared with males (7% vs. 5.1%). The mean number of somatoform symptoms was higher in CF cases than in control subjects without CF (11 vs. 2; P<.001). Seventy-two percent of the subjects with CF fulfilled the SSI4/6 criterion for somatization syndrome. Quality of life (EUROHIS-QOL and 8-item Short-Form Health Survey) and well-being (5-item WHO Well-Being Index) were markedly decreased in CF and SSI4/6. The results of regression analyses suggest that fatigue and somatization severity had a similar impact on quality of life.

CONCLUSIONS: The results suggest that CF is relevant in the general population. Its substantial overlap with somatization syndrome supports the hypothesis that the two syndromes are only partially different manifestations of the same underlying processes.

 

Source: Martin A, Chalder T, Rief W, Braehler E. The relationship between chronic fatigue and somatization syndrome: a general population survey. J Psychosom Res. 2007 Aug;63(2):147-56. https://www.ncbi.nlm.nih.gov/pubmed/17662751

 

Overview of psychiatric therapy for chronic fatigue syndrome

Abstract:

Chronic fatigue syndrome (CFS) is recognized as a special condition based on abnormality of psycho-neuro-endocrine-immunological system, which is caused by several cytokines and autoantibodies. For CFS diagnosis, it is required to exclude psychiatric diseases which could cause chronic fatigue. On the other hand, recent studies proved the effectiveness cognitive behavioral therapy(CBT) for CFS. Distorted cognition relevant to CFS includes the characteristics such as over adaptation, perfectionism, avoidance and so on. In the CBT for CFS, it is important to quit seeking physical causes, to accept the pathological state as it is, to monitor daily activity and recognize the cognitive and behavioral patterns which might prolong fatigue, to maintain a constant activity level and to make planned increases in activity.

 

Source: Yamadera W, Itoh H. Overview of psychiatric therapy for chronic fatigue syndrome. Nihon Rinsho. 2007 Jun;65(6):1082-6. [Article in Japanese] https://www.ncbi.nlm.nih.gov/pubmed/17561701

 

Psychological symptoms in chronic fatigue syndrome

Abstract:

Patients with chronic fatigue syndrome (CFS) frequently complain of psychological symptoms including depression, anxiety, and neuropsychological impairment. In addition, patients with CFS have been reported to be more likely to have psychiatric diseases such as major depressive disorder, panic disorder, generalized anxiety disorder, and personality disorder.

In the present review article, psychological symptoms and psychiatric comorbidity in CFS patients were introduced. In addition, differentiation between CFS and psychiatric disorders were discussed, because there have been few studies on comorbidity and differentiation between CFS and undifferentiated somatoform disorder although there has been heated debate about the existence of CFS itself.

 

Source: Yoshiuchi K. Psychological symptoms in chronic fatigue syndrome. Nihon Rinsho. 2007 Jun;65(6):1023-7. [Article in Japanese] https://www.ncbi.nlm.nih.gov/pubmed/17561692

 

A longitudinal study of the relationship between psychological distress and recurrence of upper respiratory tract infections in chronic fatigue syndrome

Abstract:

OBJECTIVES: Previous research has found that chronic fatigue syndrome (CFS) patients report increased susceptibility to upper respiratory tract illnesses (URTIs) when compared with healthy volunteers. This study aimed to replicate and extend this research by investigating the role of psychological distress (stress and negative mood) in the recurrence of URTIs in CFS patients as well as its role in the recurrence of CFS symptoms.

DESIGN: A 15-week diary study.

METHODS: Measures of psychological stress, negative mood, recurrence of URTIs and symptoms were recorded each week for a 15-week period. CFS patients (N=21), who had been assessed and diagnosed according to the Oxford criteria, were recruited from the Cardiff Chronic Fatigue Clinic and compared with a matched group of healthy controls (N=18). Frequency of occurrence of infectious illness and the relationship between psychological stress/negative mood and occurrence of illness were assessed.

RESULTS: CFS patients reported more URTIs than the controls. Stress scores (and negative mood) were significantly higher in the week prior to the occurrence of URTIs than in weeks when no subsequent illness occurred. High levels of psychological stress also preceded the severity of reported symptoms of fatigue in the CFS group.

CONCLUSIONS: CFS patients reported more frequent URTIs than healthy controls and these recurrences were preceded by high levels of psychological stress. High levels of stress were also associated with greater subsequent fatigue. Possible explanations of these results are discussed.

 

Source: Faulkner S, Smith A. A longitudinal study of the relationship between psychological distress and recurrence of upper respiratory tract infections in chronic fatigue syndrome. Br J Health Psychol. 2008 Feb;13(Pt 1):177-86. https://www.ncbi.nlm.nih.gov/pubmed/17535488

 

The ME Bandwagon and other labels: constructing the genuine case in talk about a controversial illness

Abstract:

This paper examines the discourse of morality surrounding ‘ME’ as a contested illness, looking at how GPs and ME group members differentiate between the category of ‘genuine ME sufferer’ and the ‘bandwagon’. ‘Jumping on the bandwagon’ is a metaphor commonly used to describe the activity of ‘following the crowd’ in order to gain an advantage. This discursive analysis shows how ‘bandwagon’ categories are constructed in contrast to the category of genuine sufferer.

People who jump on the bandwagon are accused of matching their symptoms to media stereotypes, adopting trendy illnesses (‘fads’), or using ‘tickets’ to avoid facing up to psychological illnesses. Both GPs and ME group members construct a differential moral ordering of physical and psychological illness categories, where the latter assumes a lesser status. The paper concludes that against a background of medical uncertainty and controversy, the ‘bandwagon’ and other derogatory labels function as contrast categories that work to establish the existence of ‘ME’ as a genuine illness.

 

Source: Horton-Salway M. The ME Bandwagon and other labels: constructing the genuine case in talk about a controversial illness. Br J Soc Psychol. 2007 Dec;46(Pt 4):895-914. https://www.ncbi.nlm.nih.gov/pubmed/17535450

 

Is cognitive behaviour therapy for chronic fatigue syndrome also effective for pain symptoms?

Abstract:

Patients with chronic fatigue syndrome (CFS) frequently report chronic pain symptoms. Cognitive behavioural therapy (CBT) for CFS results in a reduction of fatigue, but is not aimed at pain symptoms. In this study, we tested the hypothesis that a successful treatment of CFS can also lead to a reduction of pain. The second objective was to explore possible mechanisms of changes in pain. The third objective was to assess the predictive value of pain for treatment outcome. Data from two previous CBT studies were used, one of adult CFS patients (n=96) and one of adolescent CFS patients (n=32).

Pain severity was assessed with a daily self-observation list at baseline and post-treatment. The location of pain in adults was assessed with the McGill Pain Questionnaire (MPQ). Patients were divided into recovered and non-recovered groups. Recovery was defined as reaching a post-treatment level of fatigue within normal range. Recovered adult and adolescent CFS patients reported a significant reduction of pain severity compared to non-recovered patients. Recovered adult patients also had fewer pain locations following treatment. The decrease in fatigue predicted the change in pain severity. In adult patients, a higher pain severity at baseline was associated with a negative treatment outcome.

 

Source: Knoop H, Stulemeijer M, Prins JB, van der Meer JW, Bleijenberg G. Is cognitive behaviour therapy for chronic fatigue syndrome also effective for pain symptoms? Behav Res Ther. 2007 Sep;45(9):2034-43. Epub 2007 Mar 14. https://www.ncbi.nlm.nih.gov/pubmed/17451642

 

Is a full recovery possible after cognitive behavioural therapy for chronic fatigue syndrome?

Abstract:

BACKGROUND: Cognitive behavioural therapy (CBT) for chronic fatigue syndrome (CFS) leads to a decrease in symptoms and disabilities. There is controversy about the nature of the change following treatment; some suggest that patients improve by learning to adapt to a chronic condition, others think that recovery is possible. The objective of this study was to find out whether recovery from CFS is possible after CBT.

METHODS: The outcome of a cohort of 96 patients treated for CFS with CBT was studied. The definition of recovery was based on the absence of the criteria for CFS set up by the Center for Disease Control (CDC), but also took into account the perception of the patients’ fatigue and their own health. Data from healthy population norms were used in calculating conservative thresholds for recovery.

RESULTS: After treatment, 69% of the patients no longer met the CDC criteria for CFS. The percentage of recovered patients depended on the criteria used for recovery. Using the most comprehensive definition of recovery, 23% of the patients fully recovered. Fewer patients with a co-morbid medical condition recovered.

CONCLUSION: Significant improvement following CBT is probable and a full recovery is possible. Sharing this information with patients can raise the expectations of the treatment, which may enhance outcomes without raising false hopes.

Copyright 2007 S. Karger AG, Basel.

 

Source: Knoop H, Bleijenberg G, Gielissen MF, van der Meer JW, White PD. Is a full recovery possible after cognitive behavioural therapy for chronic fatigue syndrome? Psychother Psychosom. 2007;76(3):171-6. https://www.ncbi.nlm.nih.gov/pubmed/17426416

 

Protocol for the PACE trial: a randomised controlled trial of adaptive pacing, cognitive behaviour therapy, and graded exercise, as supplements to standardised specialist medical care versus standardised specialist medical care alone for patients with the chronic fatigue syndrome/myalgic encephalomyelitis or encephalopathy

Abstract:

BACKGROUND: Chronic fatigue syndrome (CFS, also called myalgic encephalomyelitis /encephalopathy or ME) is a debilitating condition with no known cause or cure. Improvement may occur with medical care and additional therapies of pacing, cognitive behavioural therapy and graded exercise therapy. The latter two therapies have been found to be efficacious in small trials, but patient organisations surveys have reported adverse effects. Although pacing has been advocated by patient organisations, it lacks empirical support. Specialist medical care is commonly provided but its efficacy when given alone is not established. This trial compares the efficacy of the additional therapies when added to specialist medical care against specialist medical care alone.

METHODS: 600 patients, who meet operationalised diagnostic criteria for CFS, will be recruited from secondary care into a randomised trial of four treatments, stratified by current co morbid depressive episode and different CFS/ME criteria. The four treatments are standardised specialist medical care either given alone, or with adaptive pacing therapy or cognitive behaviour therapy or graded exercise therapy. Supplementary therapies will involve fourteen sessions over 23 weeks and a booster session at 36 weeks. Outcome will be assessed at 12, 24, and 52 weeks after randomisation. Two primary outcomes of self-rated fatigue and physical function will assess differential effects of each treatment on these measures. Secondary outcomes include adverse events and reactions, subjective measures of symptoms, mood, sleep and function and objective measures of physical activity, fitness, cost-effectiveness and cost-utility. The primary analysis will be based on intention to treat and will use logistic regression models to compare treatments. Secondary outcomes will be analysed by repeated measures analysis of variance with a linear mixed model. All analyses will allow for stratification factors. Mediators and moderators will be explored using multiple linear and logistic regression techniques with interactive terms, with the sample split into two to allow validation of the initial models. Economic analyses will incorporate sensitivity measures.

DISCUSSION: The results of the trial will provide information about the benefits and adverse effects of these treatments, their cost-effectiveness and cost-utility, the process of clinical improvement and the predictors of efficacy.

 

Source: White PD, Sharpe MC, Chalder T, DeCesare JC, Walwyn R; PACE trial group. Protocol for the PACE trial: a randomised controlled trial of adaptive pacing, cognitive behaviour therapy, and graded exercise, as supplements to standardised specialist medical care versus standardised specialist medical care alone for patients with the chronic fatigue syndrome/myalgic encephalomyelitis or encephalopathy. BMC Neurol. 2007 Mar 8;7:6. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2147058/

 

The effect of cognitive behaviour therapy for chronic fatigue syndrome on self-reported cognitive impairments and neuropsychological test performance

Abstract:

BACKGROUND: Patients with chronic fatigue syndrome (CFS) often have concentration and memory problems. Neuropsychological test performance is impaired in at least a subgroup of patients with CFS. Cognitive behavioural therapy (CBT) for CFS leads to a reduction in fatigue and disabilities.

AIM: To test the hypothesis that CBT results in a reduction of self-reported cognitive impairment and in an improved neuropsychological test performance.

METHODS: Data of two previous randomised controlled trials were used. One study compared CBT for adult patients with CFS, with two control conditions. The second study compared CBT for adolescent patients with a waiting list condition. Self-reported cognitive impairment was assessed with questionnaires. Information speed was measured with simple and choice reaction time tasks. Adults also completed the symbol digit-modalities task, a measure of complex attentional function.

RESULTS: In both studies, the level of self-reported cognitive impairment decreased significantly more after CBT than in the control conditions. Neuropsychological test performance did not improve.

CONCLUSIONS: CBT leads to a reduction in self-reported cognitive impairment, but not to improved neuropsychological test performance. The findings of this study support the idea that the distorted perception of cognitive processes is more central to CFS than actual cognitive performance.

 

Source: Knoop H, Prins JB, Stulemeijer M, van der Meer JW, Bleijenberg G. The effect of cognitive behaviour therapy for chronic fatigue syndrome on self-reported cognitive impairments and neuropsychological test performance. J Neurol Neurosurg Psychiatry. 2007 Apr;78(4):434-6. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2077788/ (Full article)