Management – Page 6 – American ME and CFS Society

The impact of energy modulation on physical functioning and fatigue severity among patients with ME/CFS

Abstract:

OBJECTIVE: The energy envelope postulates that patients with Myalgic Encephalomyelitis/chronic fatigue syndrome (ME/CFS) will improve functioning when maintaining expended energy levels at the same level as available energy level.

METHODS: Estimated weekly Energy Quotients were established by dividing expended energy level by perceived energy level and multiplying by 100. Two groups of patients were identified following participation in a non-pharmacologic intervention trial. Some were able to keep expended energy close to available energy and others were not successful at this task.

RESULTS: Those who were able to stay within their energy envelope had significant improvements in physical functioning and fatigue severity.

CONCLUSION: Findings suggest that helping patients with ME/CFS maintain appropriate energy expenditures in coordination with available energy reserves can help improve functioning over time.

PRACTICE IMPLICATIONS: Health care professionals that treat patients with ME/CFS might incorporate strategies that help patients self-monitor and self-regulate energy expenditures.

Comment in: Treatment of chronic fatigue syndrome: how to find a ‘new equilibrium’? [Patient Educ Couns. 2009]

Source: Jason L, Benton M, Torres-Harding S, Muldowney K. The impact of energy modulation on physical functioning and fatigue severity among patients with ME/CFS. Patient Educ Couns. 2009 Nov;77(2):237-41. doi: 10.1016/j.pec.2009.02.015. Epub 2009 Apr 8. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2767446/(Full article)

Practice Nurses’ views of their role in the management of Chronic Fatigue Syndrome/Myalagic Encephalitis: a qualitative study

Abstract:

BACKGROUND: NICE guidelines suggest that patients with Chronic Fatigue Syndrome/Myalgic Encephalitis (CFS/ME) should be managed in Primary Care. Practice Nurses are increasingly being involved in the management of long-term conditions, so are likely to also have a growing role in managing CFS/ME. However their attitudes to, and experiences of patients with CFS/ME and its management must be explored to understand what barriers may exist in developing their role for this group of patients. The aim of this study was to explore Practice Nurses’ understanding and beliefs about CFS/ME and its management.

METHODS: Semi-structured interviews with 29 Practice Nurses. Interviews were transcribed verbatim and an iterative approach used to develop themes from the dataset.

RESULTS: Practice nurses had limited understanding about CFS/ME which had been largely gained through contact with patients, friends, personal experiences and the media rather than formal training. They had difficulty seeing CFS/ME as a long term condition. They did identify a potential role they could have in management of CFS/ME but devalued their own skills in psychological intervention, and suggested counselling would be an appropriate therapeutic option. They recognised a need for further training and on going supervision from both medical and psychological colleagues. Some viewed the condition as contentious and held pejorative views about CFS/ME. Such scepticism and negative attitudes will be a significant barrier to the management of patients with CFS/ME in primary care.

CONCLUSION: The current role of Practice Nurses in the ongoing management of patients with CFS/ME is limited. Practice Nurses have little understanding of the evidence-base for treatment of CFS/ME, particularly psychological therapies, describing management options in terms of advice giving, self-help or counselling. Practice Nurses largely welcomed the potential development of their role in this area, but identified barriers and training needs which must be addressed to enable them to feel confident managing of patients with this condition. Training must begin by addressing negative attitudes to patients with CFS/ME.

Source: Chew-Graham C, Dixon R, Shaw JW, Smyth N, Lovell K, Peters S. Practice Nurses’ views of their role in the management of Chronic Fatigue Syndrome/Myalagic Encephalitis: a qualitative study. BMC Nurs. 2009 Jan 22;8:2. doi: 10.1186/1472-6955-8-2. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2635361/ (Full article)

The Energy Envelope Theory and myalgic encephalomyelitis/chronic fatigue syndrome

Erratum in: AAOHN J. 2008 Jul;56(7):288. Muldowney, Kathleen [added]; Torres-Harding, Susan [added].

Abstract:

Individuals with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) have little stamina and endurance, and pose a challenge for nursing professionals. The Energy Envelope Theory, which posits that maintaining expended energy levels consistent with available energy levels may reduce the frequency and severity of symptoms, is particularly useful when working with clients with ME/CFS. Anecdotal support from the client community for this theory supports its use as a management tool for ME/CFS, but little formal research has been done in this area.

In this study, a daily energy quotient was established by dividing the expended energy level by the perceived energy level and multiplying by 100. It was predicted that those participants who expended energy beyond their level of perceived energy would have more severe fatigue and symptoms and lower levels of physical and mental functioning.

Findings are congruent with the Energy Envelope Theory as they indicated that the daily energy quotient was related to several indices of functioning including depression, anxiety, fatigue, pain, quality of life, and disability. The overall results provide support for a strategy health care professionals can use when working with clients with ME/CFS.

Source: Jason L, Muldowney K, Torres-Harding S. The Energy Envelope Theory and myalgic encephalomyelitis/chronic fatigue syndrome. AAOHN J. 2008 May;56(5):189-95. https://www.ncbi.nlm.nih.gov/pubmed/18578185

Dietary intervention in chronic fatigue syndrome

Abstract:

BACKGROUND: Anecdotal reports and books have been published linking an over growth of Candida Albicans with chronic fatigue syndrome (CFS), suggesting dietary change as a treatment option. Little scientific data has been published to validate this controversial theory. This study aims to determine the efficacy of dietary intervention on level of fatigue and quality of life (QoL) in individuals with CFS.

METHODS: A 24-week randomized intervention study was conducted with 52 individuals diagnosed with CFS. Patients were randomized to either a low sugar low yeast (LSLY) or healthy eating (HE) dietary interventions. Primary outcome measures were fatigue as measured by the Chalder Fatigue Score and QoL measured by Medical Outcomes Survey Short Form-36.

RESULTS: A high drop out rate occurred with 13 participants not completing the final evaluation (7HE/6LSLY). Intention to treat analysis showed no statistically significant differences on primary outcome measurements.

CONCLUSION: In this randomized control trial, a LSLY diet appeared to be no more efficacious on levels of fatigue or QoL compared to HE. Given the difficulty with dietary compliance experienced by participants, especially in the LSLY group, it would appear HE guidance is a more pragmatic approach than advocating a complicated dietary regime.

Source: Hobday RA, Thomas S, O’Donovan A, Murphy M, Pinching AJ. Dietary intervention in chronic fatigue syndrome. J Hum Nutr Diet. 2008 Apr;21(2):141-9. doi: 10.1111/j.1365-277X.2008.00857.x. https://www.ncbi.nlm.nih.gov/pubmed/18339054

Overview of medical treatment and management of chronic fatigue syndrome

Abstract:

A tailor-made management plan that includes various combinations of non-pharmacologic and pharmacologic therapy for patients withchronic fatigue syndrome (CFS) is important. We present an overview of four aspects of our medical treatment and management for CFS: introduction of our medical management system, summary of our management strategy, non-pharmacologic therapy, and pharmacologic therapy; according to foreign guidelines and the latest studies. The main non-pharmacologic therapies for CFS are rehabilitation and lifestyle guidance. Using a graded exercise therapy, we have constructed a broad management strategy for CFS. Herein we introduce our graded exercise therapy. If the symptoms continue despite careful management of the program by the physician, consultation with a psychiatrist or psychosomatic medicine specialist is necessary.

Source: Yoshihara K, Kubo C. Overview of medical treatment and management of chronic fatigue syndrome. Nihon Rinsho. 2007 Jun;65(6):1077-81. [Article in Japanese] https://www.ncbi.nlm.nih.gov/pubmed/17561700

Managing chronic fatigue syndrome in U.K. primary care: challenges and opportunities

Abstract:

Calls for the treatment of chronic fatigue syndrome (CFS) in primary care have been based largely on considerations of the availability and accessibility of resources rather than with reference to a firm evidence base. Treatments such as cognitive-behavioural therapy and graded exercise therapy, which have proven effective for CFS in secondary and specialist care settings, have not been adequately tested in primary care. There are several factors that may affect the generalizability of such treatments. Patients seen in primary care may differ from those seen in secondary care, in terms of both illness beliefs and social characteristics, and these factors need to be taken into account when developing and adapting treatments for primary care. While some primary care physicians experience difficulties in the diagnosis of CFS, we argue that early and authoritative diagnosis and the provision of a tangible explanation for patients’ symptoms are likely to be beneficial. Because of the scarcity of qualified specialist therapists, we need to train primary care practitioners to deliver treatments, and we need more research into the feasibility and effectiveness of doing this. Finally, the primary care setting offers opportunities for the guided development of patient self-help approaches.

Source: Wearden AJ, Chew-Graham C. Managing chronic fatigue syndrome in U.K. primary care: challenges and opportunities. Chronic Illn. 2006 Jun;2(2):143-53. https://www.ncbi.nlm.nih.gov/pubmed/17175657

Long-term outcomes of an integrative rehabilitation program on quality of life: a follow-up study

Abstract:

OBJECTIVE: To assess the long-term effects of an integrative rehabilitation program on the overall quality of life of individuals with chronic fatigue syndrome (CFS).

METHODS: This study utilized a within-subjects, repeated measures cohort design. Twenty-three subjects diagnosed with CFS attended eight sessions of an illness-management group followed by 7 months of goal-oriented, individualized counseling that occurred once weekly for 30 min per session. Quality of life was assessed at five time points (baseline, following the group phase, following the one-on-one phase, and 4 and 12 months following program completion).

RESULTS: A within-subjects repeated measures ANOVA revealed significant increases in overall quality of life for up to 1 year following program completion [F(4, 21)=23.5, P<.001].

CONCLUSIONS: Definitive conclusions about program efficacy are limited by design issues. However, findings suggest that the program may have led to improvement in quality of life for up to 1 year following program completion.

Source: Taylor RR, Thanawala SG, Shiraishi Y, Schoeny ME. Long-term outcomes of an integrative rehabilitation program on quality of life: a follow-up study. J Psychosom Res. 2006 Dec;61(6):835-9. https://www.ncbi.nlm.nih.gov/pubmed/17141674

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

Patient power and control: a study of women with uncertain illness trajectories

Abstract:

The authors interviewed 12 women diagnosed with chronic fatigue syndrome and 13 with fibromyalgia with the aim of determining the strategies they perceive themselves as using to gain control over their situation during the health care process. The results highlight various strategies that the women report applying to find a way of managing the illness and to influence caregivers. They describe, for example, how they try to gain control over their situation by acquiring knowledge about the illness. The women also describe various power strategies they use in their interaction with the caregivers to take command of their situation, namely exiting, noncompliance, confrontation, persuasion/insistence, making demands, and demonstrative distancing.

Source: Asbring P, Närvänen AL. Patient power and control: a study of women with uncertain illness trajectories. Qual Health Res. 2004 Feb;14(2):226-40. http://www.ncbi.nlm.nih.gov/pubmed/14768459