outcome – American ME and CFS Society

Treatment outcome in adults with chronic fatigue syndrome: a prospective study in England based on the CFS/ME National Outcomes Database

Erratum in: QJM. 2013 Jun;106(6):567.

Abstract:

BACKGROUND: Chronic fatigue syndrome (CFS) is relatively common and disabling. Over 8000 patients attend adult services each year, yet little is known about the outcome of patients attending NHS services.

AIM: Investigate the outcome of patients with CFS and what factors predict outcome.

DESIGN: Longitudinal patient cohort.

METHODS: We used data from six CFS/ME (myalgic encephalomyelitis) specialist services to measure changes in fatigue (Chalder Fatigue Scale), physical function (SF-36), anxiety and depression (Hospital Anxiety and Depression Scale) and pain (visual analogue pain rating scale) between clinical assessment and 8-20 months of follow-up. We used multivariable linear regression to investigate baseline factors associated with outcomes at follow-up.

RESULTS: Baseline data obtained at clinical assessment were available for 1643 patients, of whom 834 (51%) had complete follow-up data. There were improvements in fatigue [mean difference from assessment to outcome: -6.8; 95% confidence interval (CI) -7.4 to -6.2; P < 0.001]; physical function (4.4; 95% CI 3.0-5.8; P < 0.001), anxiety (-0.6; 95% CI -0.9 to -0.3; P < 0.001), depression (-1.6; 95% CI -1.9 to -1.4; P < 0.001) and pain (-5.3; 95% CI -7.0 to -3.6; P < 0.001). Worse fatigue, physical function and pain at clinical assessment predicted a worse outcome for fatigue at follow-up. Older age, increased pain and physical function at assessment were associated with poorer physical function at follow-up.

CONCLUSION: Patients who attend NHS specialist CFS/ME services can expect similar improvements in fatigue, anxiety and depression to participants receiving cognitive behavioural therapy and graded exercise therapy in a recent trial, but are likely to experience less improvement in physical function. Outcomes were predicted by fatigue, disability and pain at assessment.

Comment in: RE: ‘Treatment outcome in adults with chronic fatigue syndrome: a prospective study. [QJM. 2014]

Source: Crawley E, Collin SM, White PD, Rimes K, Sterne JA, May MT; CFS/ME National Outcomes Database. Treatment outcome in adults with chronic fatigue syndrome: a prospective study in England based on the CFS/ME National Outcomes Database. QJM. 2013 Jun;106(6):555-65. doi: 10.1093/qjmed/hct061. Epub 2013 Mar 28. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3665909/ (Full article)

Cognitive behavioural treatment for chronic fatigue syndrome in a rehabilitation setting: effectiveness and predictors of outcome

Abstract:

Cognitive behavioural therapy (CBT) was combined with graded exercise therapy (GET) for patients with chronic fatigue syndrome (CFS) in an uncontrolled implementation study of an inpatient multidisciplinary group therapy.

During the intake procedure, 160 CFS patients completed a questionnaire on fatigue related measurements, physical impairment, depression, somatic and psychological attributions, somatic focus, and sense of control over symptoms. Pre-treatment physical activity level was measured with an actometer. At baseline, post-treatment and 6-month follow-up individual strength, subjective fatigue and physical impairment, were reassessed. Large effect sizes were found on subjective fatigue (1.2 post-treatment; 1.2 follow-up) and physical impairment (-.9 post-treatment; -.9 follow-up).

Clinically significant improvement was found in 33.8% of the participants at post-treatment and 30.6% at follow-up. Individual strength at post-treatment was predicted by level of physical activity before treatment, and by sense of control over symptoms and physical activity at follow-up. Clinically significant improvement in subjective fatigue was predicted by not receiving a disablement insurance benefit, shorter duration of fatigue, higher sense of control over symptoms and, at follow-up by more pre-treatment physical activity. In conclusion, the intervention was effective for CFS patients. Cognitive behavioural factors that perpetuate fatigue symptoms are also predictors of treatment outcome.

Source: Schreurs KM, Veehof MM, Passade L, Vollenbroek-Hutten MM. Cognitive behavioural treatment for chronic fatigue syndrome in a rehabilitation setting: effectiveness and predictors of outcome. Behav Res Ther. 2011 Dec;49(12):908-13. doi: 10.1016/j.brat.2011.09.004. Epub 2011 Sep 28. https://www.ncbi.nlm.nih.gov/pubmed/21982345

A two-year follow-up study of chronic fatigue syndrome comorbid with psychiatric disorders

Abstract:

AIMS: Chronic fatigue syndrome patients often have comorbid psychiatric disorders such as major depressive disorders and anxiety disorders. However, the outcomes of chronic fatigue syndrome and the comorbid psychiatric disorders and the interactions between them are unknown. Therefore, a two-year prospective follow-up study was carried out on chronic fatigue syndrome patients with comorbid psychiatric disorders.

METHODS: A total of 155 patients who met the Japanese case definition of chronic fatigue syndrome were enrolled in this study. Comorbid psychiatric disorders were diagnosed according to the Diagnostic and Statistical Manual of Mental Disorders 4th edition criteria. Patients with comorbid psychiatric disorders received psychiatric treatment in addition to medical therapy for chronic fatigue syndrome. Seventy patients participated in a follow-up interview approximately 24 months later.

RESULTS: Of the 70 patients with chronic fatigue syndrome, 33 patients were diagnosed as having comorbid psychiatric disorders including 18 major depressive disorders. Sixteen patients with psychiatric disorders and eight patients with major depressive disorders did not fulfill the criteria of any psychiatric disorders at the follow up. As for chronic fatigue syndrome, nine out of the 70 patients had recovered at the follow up. There is no significant influence of comorbid psychiatric disorders on the outcome of chronic fatigue syndrome.

CONCLUSIONS: Chronic fatigue syndrome patients have a relatively high prevalence of comorbid psychiatric disorders, especially major depressive disorders. The outcomes of chronic fatigue syndrome and psychiatric disorders are independent. Therefore treatment of comorbid psychiatric disorders is necessary in addition to the medical treatment given for chronic fatigue syndrome.

Source: Matsuda Y, Matsui T, Kataoka K, Fukada R, Fukuda S, Kuratsune H, Tajima S, Yamaguti K, Kato YH, Kiriike N. A two-year follow-up study of chronic fatigue syndrome comorbid with psychiatric disorders. Psychiatry Clin Neurosci. 2009 Jun;63(3):365-73. doi: 10.1111/j.1440-1819.2009.01954.x. http://onlinelibrary.wiley.com/doi/10.1111/j.1440-1819.2009.01954.x/full (Full article)

Cognitive-behaviour therapy for chronic fatigue syndrome: comparison of outcomes within and outside the confines of a randomised controlled trial

Abstract:

Outcomes for cognitive-behaviour therapy (CBT) in randomised controlled trials (RCTs) have rarely been compared to those in routine clinical practice. Taking the case of CBT for chronic fatigue syndrome (CFS), we evaluated the results of a successful RCT against those of the same treatment given in the same setting as part of routine practice. Fatigue and social adjustment scores were compared for patients who received CBT for CFS as part of a RCT (N=30) and patients who received CBT as part of everyday clinical practice (N=384). The results in the RCT were superior to those in routine clinical practice. Between pre-treatment and 6-month follow-up, the RCT showed a larger reduction in fatigue and greater improvement in social adjustment than those in routine treatment. The changes in fatigue scores were similar for both groups during treatment but were greater in the RCT between post-treatment and follow-up. Potential reasons for the superior results of the RCT include patient selection, therapist factors and the use of a manualised treatment protocol. Practitioners need to pay particular attention to relapse prevention and ensuring adequate follow-up in addition to encouraging patients to continue with cognitive-behavioural strategies once treatment has ended.

Source: Quarmby L, Rimes KA, Deale A, Wessely S, Chalder T. Cognitive-behaviour therapy for chronic fatigue syndrome: comparison of outcomes within and outside the confines of a randomised controlled trial. Behav Res Ther. 2007 Jun;45(6):1085-94. Epub 2006 Oct 30. https://www.ncbi.nlm.nih.gov/pubmed/17074300

Chronic fatigue in complementary rehabilitative medicine–predictors of the outcomes

Abstract:

Chronic exhaustion and fatigue are increasingly important in rehabilitation medicine. Objectives of this study were (a) to describe the effects of in-patient rehabilitation on patients with chronic fatigue syndromes, (b) to identify predictors for treatment outcome, and (c) to analyze the impact of comprehensive diagnosing on these issues.

A total of 171 patients with chronic exhaustion or fatigue (90 % female, mean age 55 +/- 10 yrs) from a rehabilitation hospital with a complementary medicine-based treatment concept were included in a prospective observational study. Within the longitudinal study patients were examined three times (on admission to hospital, at discharge as well as six months later). Participation rate of the postal inquiry was 69 %. Besides items constructed ad hoc, Patient questionnaires included the Symptom Checklist and assessment instruments for depression, quality of life, sense of coherence as well as for changes in experience and behaviour. Treatment outcome was defined as sum score of binary-coded response criteria.

The pattern of complaints differed clearly between diagnostic subgroups (neurasthenia, affective disorders, adjustment disorders) before treatment. At discharge from hospital patients showed clinically relevant improvements lasting for six months after rehabilitation. Multiple regression analyses revealed a statistically significant relationship (R (mult) = 0.59) between predictors and outcome at discharge from hospital.

A better result was associated with higher trust in treatment success, active information seeking on complementary medicine, healthier feeding habits, better somatic health and a decreased mental status, with regard to the status before treatment. The prediction of outcome after six months was comparably poorer (R (mult) = 0.42).

Treatment success was higher in the absence of a diagnosis of neurasthenia, in patients accepting the group-oriented treatment concept and in patients not believing that their disease was due to their own way of living. Trust in the success of the treatment was a highly ranked predictor for longer lasting outcome, too. The results underline the importance of motivation aspects for treatment outcome indicating that individual expectations and attitudes should be considered in a more distinct way when allocating patients to rehabilitative programmes.

Source: Weidenhammer W, Wessel A, Hutter A, Melchart D, Schröder A. Chronic fatigue in complementary rehabilitative medicine–predictors of the outcomes. Rehabilitation (Stuttg). 2006 Oct;45(5):299-308. [Article in German] https://www.ncbi.nlm.nih.gov/pubmed/17024614

Immune modulation with a staphylococcal preparation in fibromyalgia/chronic fatigue syndrome: relation between antibody levels and clinical improvement

Abstract:

The aims of this study were to evaluate the serological response to treatment with staphylococcal vaccine in fibromyalgia/chronic fatigue syndrome patients and to explore the relationship between serological response and clinical effect.

Twenty-eight patients, half of whom served as controls, were recruited from a 6-month randomised trial in which repeated administration of the staphylococcal toxoid vaccine Staphypan Berna (Berna Biotech, Switzerland) was tested against placebo. Antibody status against extracellular toxins/enzymes, cell-wall components, and enterotoxins was evaluated at baseline and at endpoint. The clinical response to treatment was recorded in rating scales.

In the group receiving active treatment, significant serological changes were recorded, whereas no significant changes were found in controls. Treatment led to a significantly increased capacity of serum to neutralise alpha-toxin and a significant increase in serum IgG to alpha-toxin and lipase. Furthermore, the increase in these parameters combined paralleled the improvement in clinical outcome. Thus, the greater the serological response, the greater was the clinical effect.

In conclusion, this explorative study has shown that repeated administration of the Staphypan Berna vaccine in patients with fibromyalgia/chronic fatigue syndrome causes a serological response to several staphylococcal antigens, particularly to certain extracellular toxins and enzymes. The results further show that this response is related to the clinical outcome of treatment.

Source: Zachrisson O, Colque-Navarro P, Gottfries CG, Regland B, Möllby R. Immune modulation with a staphylococcal preparation in fibromyalgia/chronic fatigue syndrome: relation between antibody levels and clinical improvement. Eur J Clin Microbiol Infect Dis. 2004 Feb;23(2):98-105. Epub 2004 Jan 20. http://www.ncbi.nlm.nih.gov/pubmed/14735403

Chronic fatigue syndrome in children: a cross sectional survey

Abstract:

BACKGROUND: Chronic fatigue syndrome (CFS) in children is a controversial diagnosis with unclear aetiology, ill defined but likely increasing incidence, and debatable clinical management options. However these children experience real and considerable suffering. Appropriate research in this clinical population is sparse and usually occurs in tertiary referral units.

METHODS: Cross sectional survey of 36 children attending a GP specialist interest clinic in southeast England.

RESULTS: Patient sociodemographics and clinical morbidity were largely comparable to the literature from tertiary referral research centres. Some prognostic indicators for adults did not readily transfer to this younger age group, although several children had a positive family psychiatric history. Receiving treatment was associated with increased school attendance, but one third of subjects obtained no qualifications. Return to normal health or significant overall improvement was reported by 29/36 subjects.

CONCLUSIONS: The outcomes in this setting are favourable and comparable to those seen in a controlled setting; this study supports the concept that the prognosis for CFS in children and adolescents is generally good. However, the impact of the illness is significant and this is perhaps most evident in terms of education. Current methods of reporting educational outcomes in the literature are varied and merit development of standardised tools.

Source: Patel MX, Smith DG, Chalder T, Wessely S. Chronic fatigue syndrome in children: a cross sectional survey. Arch Dis Child. 2003 Oct;88(10):894-8. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1719321/ (Full article)

Illness beliefs and treatment outcome in chronic fatigue syndrome

Abstract:

Longitudinal studies have shown that physical illness attributions are associated with poor prognosis in chronic fatigue syndrome (CFS). Speculation exists over whether such attributions influence treatment outcome. This study reports the effect of illness beliefs on outcome in a randomized controlled trial of cognitive-behavior therapy versus relaxation.

Causal attributions and beliefs about exercise, activity, and rest were recorded before and after treatment in 60 CFS patients recruited to the trial. Physical illness attributions were widespread, did not change with treatment, and were not associated with poor outcome in either the cognitive-behavior therapy group or the control group.

Beliefs about avoidance of exercise and activity changed in the cognitive behavior therapy group, but not in the control group. This change was associated with improved outcome. These findings suggest that physical illness attributions are less important in determining outcome (at least in treatment studies) than has been previously thought. In this study, good outcome is associated with change in avoidance behavior, and related beliefs, rather than causal attributions.

Source: Deale A, Chalder T, Wessely S. Illness beliefs and treatment outcome in chronic fatigue syndrome. J Psychosom Res. 1998 Jul;45(1):77-83. http://www.ncbi.nlm.nih.gov/pubmed/9720857

Coping and other predictors of outcome in chronic fatigue syndrome: a 1-year follow-up

Abstract:

In this prospective study, 137 patients with chronic fatigue syndrome were followed-up at a 1-year interval to determine factors relating to outcomes. Nearly two thirds reported an improvement on direct ratings of change.

In analyses with fatigue and functional impairment at follow-up as the criteria, and controlling for earlier status, poorer outcomes were predicted by illness duration, subjective cognitive difficulty, and somatic symptoms; there was no influence of anxiety, depression, or general emotional distress.

Fatigue was also predicted by information-seeking, and impairment by behavioral disengagement and a low internal locus of control. The belief that one’s actions can influence outcomes modified the relationship between illness accommodation and both fatigue and impairment; adverse outcomes were associated with accommodating to illness only in the context of lower levels of perceived control. Thus, it is suggested that interventions that either discourage avoidance of activity or enhance perceived control could benefit the course of the illness.

Source: Ray C, Jefferies S, Weir WR. Coping and other predictors of outcome in chronic fatigue syndrome: a 1-year follow-up. J Psychosom Res. 1997 Oct;43(4):405-15. http://www.ncbi.nlm.nih.gov/pubmed/9330240

Prognosis in chronic fatigue syndrome: a prospective study on the natural course

Abstract:

OBJECTIVE: To determine spontaneous improvement after a follow up interval of 18 months in patients with chronic fatigue syndrome and to identify factors that predict improvement.

METHODS: A longitudinal study was used. Of 298 initially assessed self referred patients fulfilling criteria for chronic fatigue syndrome, 246 patients completed self report questionnaires at follow up (response rate 83%). A multidimensional assessment method was used, measuring behavioural, emotional, cognitive, and social functioning. Comparison data from 53 healthy subjects matched for age, sex, and educational level were available.

RESULTS: Three per cent of patients reported complete recovery and 17% reported improvement. At follow up, there were considerable problems at work and consumption of medication was high. Subjective improvement was confirmed by dimensional change: at follow up recovered patients had similar scores to healthy subjects and improved patients showed significant improvement on four out of seven outcome measures and had higher scores than healthy subjects in all dimensions. Sociodemographic variables or treatment by specialists and alternative practitioners did not predict improvement. Predictors of improvement were: subjective sense of control over symptoms, less fatigue, shorter duration of complaints, and a relative absence of physical attributions.

CONCLUSION: The improvement rate in patients with a relatively long duration of complaints is small. Psychological factors are related to improvement, especially cognitive factors.

Source: Vercoulen JH, Swanink CM, Fennis JF, Galama JM, van der Meer JW, Bleijenberg G. Prognosis in chronic fatigue syndrome: a prospective study on the natural course. J Neurol Neurosurg Psychiatry. 1996 May;60(5):489-94. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC486359/ (Full article)