self-help – American ME and CFS Society

Cortisol output in adolescents with chronic fatigue syndrome: pilot study on the comparison with healthy adolescents and change after cognitive behavioural guided self-help treatment

Abstract:

OBJECTIVE: This study examined cortisol in adolescents with chronic fatigue syndrome (CFS) compared to healthy adolescents and changes in cortisol after cognitive behavioural guided self-help treatment. Exploratory analyses investigated the association between cortisol output and psychological variables.

METHODS: Salivary cortisol was measured upon awakening, at 15, 30, 45 and 60 min afterwards and at 12 noon, 4:00 p.m. and 8:00 p.m., in adolescents with CFS and healthy controls (HC). Groups were matched for age, gender, menarche status, menstrual cycle and awakening time. Twenty-four adolescents with CFS provided saliva samples six months after treatment. The main outcome measure was total salivary output over the day, calculated by area under the curve (AUC). The salivary awakening response was also assessed.

RESULTS: Cortisol output over the day was significantly lower in the CFS group (n=46) than in healthy controls (n=33). Within the CFS group, lower daily cortisol output was associated with higher self-reported perfectionist striving and prosocial behaviour. There were no significant group differences in the awakening response (n=47 CFS versus n=34 HC). After treatment, adolescents with CFS (n=21) showed a significant increase in daily cortisol output, up to normal levels.

CONCLUSION: The reduced daily cortisol output in adolescents with CFS is in line with adult findings. Associations between reduced cortisol output and two psychological variables-perfectionism and prosocial behaviour-are consistent with cognitive behavioural models of chronic fatigue syndrome. The mild hypocortisolism is reversible; cortisol output had returned to healthy adolescent levels by six months after cognitive behavioural guided self-help treatment.

Source: Rimes KA, Papadopoulos AS, Cleare AJ, Chalder T. Cortisol output in adolescents with chronic fatigue syndrome: pilot study on the comparison with healthy adolescents and change after cognitive behavioural guided self-help treatment. J Psychosom Res. 2014 Nov;77(5):409-14. doi: 10.1016/j.jpsychores.2014.08.018. Epub 2014 Sep 8.https://www.ncbi.nlm.nih.gov/pubmed/25260861

Telephone-based guided self-help for adolescents with chronic fatigue syndrome: A non-randomised cohort study

Erratum in: Behav Res Ther. 2013 Aug;51(8):518.

Abstract:

The aim of this study was to gain preliminary evidence about the efficacy of a new telephone-based guided self-help intervention, based on cognitive-behavioural principles, which aimed to reduce fatigue and improve school attendance in adolescents with chronic fatigue syndrome (CFS). A non-randomised cohort design was used, with a two-month baseline period. Sixty-three 11-18 year-old participants recruited from a specialist CFS unit received the intervention. Participants received six half-hour fortnightly telephone sessions and two follow-up sessions. Fatigue and school attendance were the main outcomes and the main time point for assessing outcome was 6 months post-treatment.

Using multi-level modelling, a significant decrease in fatigue was found between pre-treatment and 6 month follow-up, treatment effect estimate = – 5.68 (-7.63, -3.72), a large effect size (Cohen’s d = 0.79). The decrease in fatigue between pre and post-treatment was significantly larger than between baseline and pre-treatment. A significant increase in school attendance was found between pre-treatment and 6 month follow-up, effect estimate = 1.38 (0.76, 2.00), a medium effect size (d = -0.48). univariate logistic regression found baseline perfectionism to be associated with better [corrected] school attendance at six-month follow-up. In conclusion, telephone-based guided self-help is an acceptable minimal intervention which is efficacious in reducing fatigue in adolescents with CFS.

Source: Lloyd S, Chalder T, Sallis HM, Rimes KA. Telephone-based guided self-help for adolescents with chronic fatigue syndrome: A non-randomised cohort study. Behav Res Ther. 2012 May;50(5):304-12. doi: 10.1016/j.brat.2012.02.014. Epub 2012 Mar 10. https://www.ncbi.nlm.nih.gov/pubmed/22459729

Implementing a minimal intervention for chronic fatigue syndrome in a mental health centre: a randomized controlled trial

Abstract:

BACKGROUND: Cognitive behaviour therapy (CBT) for chronic fatigue syndrome (CFS) is an effective but intensive treatment, requiring trained therapists. A minimal intervention based on CBT for CFS, guided self-instruction, was shown to be an effective treatment when delivered in a tertiary treatment centre. Implementing this intervention in a community-based mental health centre (MHC) will increase the treatment capacity for CFS patients. This study evaluated the effectiveness of guided self-instruction for CFS implemented in an MHC, delivered by nurses.

METHOD: One hundred and twenty-three patients were randomly assigned to either guided self-instruction (n=62) or a waiting list (n=61). Randomization was computer generated, with allocation by numbered sealed envelopes. Group allocation was open to all those involved. Patients fulfilled US Centers for Disease Control and Prevention (CDC) criteria for CFS. Primary outcome variables were fatigue severity and physical and social functioning, measured with the Checklist Individual Strength (CIS) and the Medical Outcomes Survey Short Form-36 (SF-36) respectively.

RESULTS: After 6 months, patients who followed guided self-instruction reported a significantly larger decrease in fatigue compared to the waiting list [mean difference -8.1, 95% confidence interval (CI) -3.8 to -12.4, controlled effect size 0.70]. There was no significant difference in physical and social functioning. However, post-hoc analyses showed a significant decrease in fatigue and physical disabilities following the intervention in a subgroup of patients with physical disabilities at baseline (SF-36 physical functioning ⩽70).

CONCLUSIONS: Implementation of guided self-instruction in a community-based MHC was partially successful. The minimal intervention can be effectively implemented for CFS patients with physical impairments.

Source: Tummers M, Knoop H, van Dam A, Bleijenberg G. Implementing a minimal intervention for chronic fatigue syndrome in a mental health centre: a randomized controlled trial. Psychol Med. 2012 Oct;42(10):2205-15. doi: 10.1017/S0033291712000232. Epub 2012 Feb 21. https://www.ncbi.nlm.nih.gov/pubmed/22354999

Guided self-instructions for people with chronic fatigue syndrome: randomised controlled trial

Abstract:

A minimal intervention, based on cognitive-behavioural therapy for chronic fatigue syndrome and consisting of self-instructions combined with email contact, was tested in a randomised controlled trial (ISRCTN27293439). A total of 171 patients participated in the trial: 85 were allocated to the intervention condition and 86 to the waiting-list condition. All patients met the Centers for Disease Control and Prevention criteria for chronic fatigue syndrome. An intention-to-treat analysis showed a significant decrease in fatigue and disability after self-instruction. The level of disability was negatively correlated with treatment outcome. Guided self-instructions are an effective treatment for patients with relatively less severe chronic fatigue syndrome.

Source: Knoop H, van der Meer JW, Bleijenberg G. Guided self-instructions for people with chronic fatigue syndrome: randomised controlled trial. Br J Psychiatry. 2008 Oct;193(4):340-1. doi: 10.1192/bjp.bp.108.051292. http://bjp.rcpsych.org/content/193/4/340.long (Full article)

An ‘overwhelming illness’: women’s experiences of learning to live with chronic fatigue syndrome/myalgic encephalomyelitis

Abstract:

The processes through which people learn to live with CFS/ME are poorly understood and have not been rigorously explored within the literature. Semi-structured interviews were conducted with eight women and analysed using interpretative phenomenological analysis. Participants initially described being ‘overwhelmed’ by CFS/ME. Attempts at seeking help were unsatisfactory and participants described feeling let down and disbelieved.

Participants reacted to this by identifying types of ‘self-help’ and assertively taking more responsibility for their illness and its treatment. Acquiring social support and greater knowledge were key mediating factors in the emergence of control and acceptance. The relevance of the themes to existing research and the implications for clinical practice are considered.

Source: Edwards CR, Thompson AR, Blair A. An ‘overwhelming illness’: women’s experiences of learning to live with chronic fatigue syndrome/myalgic encephalomyelitis. J Health Psychol. 2007 Mar;12(2):203-14. https://www.ncbi.nlm.nih.gov/pubmed/17284485

Fatigue Intervention by Nurses Evaluation–the FINE Trial. A randomised controlled trial of nurse led self-help treatment for patients in primary care with chronic fatigue syndrome: study protocol.[ISRCTN74156610]

Abstract:

BACKGROUND: Chronic fatigue syndrome, also known as ME (CFS/ME), is a condition characterised primarily by severe, disabling fatigue, of unknown origin, which has a poor prognosis and serious personal and economic consequences. Evidence for the effectiveness of any treatment for CFS/ME in primary care, where most patients are seen, is sparse. Recently, a brief, pragmatic treatment for CFS/ME, based on a physiological dysregulation model of the condition, was shown to be successful in improving fatigue and physical functioning in patients in secondary care. The treatment involves providing patients with a readily understandable explanation of their symptoms, from which flows the rationale for a graded rehabilitative plan, developed collaboratively with the therapist. The present trial will test the effectiveness and cost-effectiveness of pragmatic rehabilitation when delivered by specially trained general nurses in primary care. We selected a client-centred counselling intervention, called supportive listening, as a comparison treatment. Counselling has been shown to be as effective as cognitive behaviour therapy for treating fatigue in primary care, is more readily available, and controls for supportive therapist contact time. Our control condition is treatment as usual by the general practitioner (GP).

METHODS AND DESIGN: This study protocol describes the design of an ongoing, single-blind, pragmatic randomized controlled trial of a brief (18 week) self-help treatment, pragmatic rehabilitation, delivered by specially trained nurse-therapists in patients’ homes, compared with nurse-therapist delivered supportive listening and treatment as usual by the GP. An economic evaluation, taking a societal viewpoint, is being carried out alongside the clinical trial. Three adult general nurses were trained over a six month period to deliver the two interventions. Patients aged over 18 and fulfilling the Oxford criteria for CFS are assessed at baseline, after the intervention, and again one year later. Primary outcomes are self-reported physical functioning and fatigue at one year, and will be analysed on an intention-to-treat basis. A qualitative study will examine the interventions’ mechanisms of change, and also GPs’ drivers and barriers towards referral.

Source: Wearden AJ, Riste L, Dowrick C, Chew-Graham C, Bentall RP, Morriss RK, Peters S, Dunn G, Richardson G, Lovell K, Powell P. Fatigue Intervention by Nurses Evaluation–the FINE Trial. A randomised controlled trial of nurse led self-help treatment for patients in primary care with chronic fatigue syndrome: study protocol. [ISRCTN74156610]. BMC Med. 2006 Apr 7;4:9. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1456982/ (Full article)

A national assessment of the service, support, and housing preferences by persons with chronic fatigue syndrome. Toward a comprehensive rehabilitation program

Abstract:

Persons with Chronic Fatigue Syndrome (PWCs) completed and returned by mail a brief survey of open- and closed-ended items designed to assess their utilization and preferences for a variety of services. A total of 984 middle-aged adults diagnosed with Chronic Fatique Syndrome (CFS) from across North America returned the survey. During the past 12 months, many of these PWCs reported utilization of a primary care physician, gynecologist, CFS specialist, and self-help group to assist in their recovery from CFS. Most PWCs believed it was important to educate both health-care practitioners and the general public about CFS. In terms of their desire for specific recovery needs, factor analysis of responses indicated that these PWCs preferred self-help/social support services and general advocacy services in the treatment of their illness. The implications of these results for developing rehabilitation programs for PWCs are discussed.

Source: Jason LA, Ferrari JR, Taylor RR, Slavich SP, Stenzel CL. A national assessment of the service, support, and housing preferences by persons with chronic fatigue syndrome. Toward a comprehensive rehabilitation program. Eval Health Prof. 1996 Jun;19(2):194-207. http://www.ncbi.nlm.nih.gov/pubmed/10186910