A review and meta-synthesis of qualitative studies on myalgic encephalomyelitis/chronic fatigue syndrome

Abstract:

OBJECTIVE: To review and synthesize findings across qualitative studies on Myalgic Encephalomyelitis/chronic fatigue syndrome (ME/CFS).

METHODS: Articles were systematically reviewed and analyzed within a meta-analytic framework. Analyses included a multi-perspective examination of ME/CFS, as well as a comparative analysis of ME/CFS versus other chronic conditions.

RESULTS: Thirty-four qualitative studies on ME/CFS were included. Findings include three substantive thematic areas that focus on: (1) experiences of people with ME/CFS, (2) experiences of physicians, and (3) themes that intersect both of these groups. For patients, illness development influenced identity, reductions in functioning, and coping. Physician-specific themes described lack of awareness about ME/CFS and recommended improvement in educational resources. Intersecting themes expressed issues with diagnosis creating tensions and fueling the stigmatization of ME/CFS.

CONCLUSIONS: Findings indicate multilayered, context-specific experiences and ways in which both people with ME/CFS, as well as those involved in their lives (e.g., family or the medical community), interpret this illness. Future qualitative studies should recognize the various facets of the ME/CFS experience, the network members of people with ME/CFS, and the sociocultural environment through which the illness is understood.

PRACTICE IMPLICATIONS: Health care professionals can gain unique insight from patient experiences, allowing for more accurate diagnoses and treatment recommendations.

Copyright © 2011 Elsevier Ireland Ltd. All rights reserved.

 

Source: Anderson VR, Jason LA, Hlavaty LE, Porter N, Cudia J. A review and meta-synthesis of qualitative studies on myalgic encephalomyelitis/chronic fatigue syndrome. Patient Educ Couns. 2012 Feb;86(2):147-55. doi: 10.1016/j.pec.2011.04.016. Epub 2011 May 14. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3229648/ (Full article)

 

Increased HDAC in association with decreased plasma cortisol in older adults with chronic fatigue syndrome

Abstract:

Hypocortisolism is a frequent finding in individuals with chronic fatigue syndrome (CFS) with other research findings implying potential dysregulation of glucocorticoid signaling. Glucocorticoid signaling is under the influence of several pathways, several of which are of interest in the study of CFS. Oxidative stress and decreased antioxidant capacity are known to disrupt the hypothalamic-pituitary-adrenal (HPA) axis (Epel et al., 2004) and the presence of histone deacetylases (HDAC) could also impact glucocorticoid signaling.

The intent of this pilot study was to investigate the relationship among oxidative stress elements, select HDAC’s (2/3) and glucocorticoid receptor signaling in an elderly sample with CFS. Findings suggest increased histone deacetylase activity, lower total antioxidant power, in the context of decreased plasma cortisol and increased plasma dehydroepiandrosterone concomitant with decreased expression of the encoding gene for the glucocorticoid receptor. These findings support the presence of HPA axis dysregulation in elderly individuals with CFS.

Copyright © 2011 Elsevier Inc. All rights reserved.

 

Source: Jason L, Sorenson M, Sebally K, Alkazemi D, Lerch A, Porter N, Kubow S. Increased HDAC in association with decreased plasma cortisol in older adults with chronic fatigue syndrome. Brain Behav Immun. 2011 Nov;25(8):1544-7. doi: 10.1016/j.bbi.2011.04.007. Epub 2011 Apr 28. https://www.ncbi.nlm.nih.gov/pubmed/21549189

 

A natural history study of chronic fatigue syndrome

Abstract:

OBJECTIVE: There is a need for natural history chronic fatigue syndrome (CFS) studies from random, community-based, multi-ethnic populations.

DESIGN: The present study examined the course of CFS from Wave 1 to Wave 2, which spanned over a ten year period of time, and, assessed whether socio-environmental and symptomatology factors were associated with CFS status over the ten year period.

RESULTS: There was relative stability over time on critical measures of disability, fatigue, support, optimism and coping over time. One cardinal symptoms of CFS, post-exertional malaise, best differentiated the CFS group from the others. By Wave 2, of the original group of 32 individuals diagnosed with CFS, 4 had died, and 24 were found and agreed to be re-evaluated, and of this group, 16 continued to have CFS, 5 developed exclusionary illnesses, 2 were classified as Idiopathic chronic fatigue, and one had remitted.

CONCLUSIONS: The current study found that over time in a community-based sample, unbiased by help seeking behavior the CFS group remained rather ill with a variety of different conditions over time.

(c) 2011 APA, all rights reserved

 

Source: Jason LA, Porter N, Hunnell J, Brown A, Rademaker A, Richman JA. A natural history study of chronic fatigue syndrome. Rehabil Psychol. 2011 Feb;56(1):32-42. doi: 10.1037/a0022595. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3171164/ (Full article)

 

The role of changes in activity as a function of perceived available and expended energy in nonpharmacological treatment outcomes for ME/CFS

Abstract:

Nonpharmacological interventions for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) often emphasize gradual increases in activity to promote improvement in physical functioning and fatigue. The energy envelope theory may provide a framework for understanding the relationship between changes in activity level and outcomes for patients with ME/CFS. This study examined the relationship between energy envelope and changes in activity after nonpharmacological interventions in a sample of 44 adults with ME/CFS.

Results showed that those who were within their energy envelope before treatment showed more improvement in physical functioning and fatigue compared with those outside of their energy envelope. These findings suggest that an assessment of perceived available and expended energy could help guide the development of individualized nonpharmacological interventions for people with ME/CFS.

© 2010 Wiley Periodicals, Inc.

 

Source: Brown M, Khorana N, Jason LA. The role of changes in activity as a function of perceived available and expended energy in nonpharmacological treatment outcomes for ME/CFS. J Clin Psychol. 2011 Mar;67(3):253-60. doi: 10.1002/jclp.20744. Epub 2010 Oct 25. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3164291/ (Full article)

 

CFS prevalence and risk factors over time

Abstract:

The present natural history study examined the course of CFS from 1995-97 (Wave 1) to approximately 10 years later (Wave 2) from a random, community-based, multi-ethnic population. The rate of CFS remained approximately the same over the period of time from Wave 1 to Wave 2, although a high level of mortality was found (18% of those with medical or psychiatric exclusions group, 12.5% for the CFS group). Physical measures of disability and fatigue, along with measures of specific somatic symptoms, better differentiate individuals who later are diagnosed with CFS than more psychosocial measures such as stress and coping.

 

Source: Jason LA, Porter N, Hunnell J, Rademaker A, Richman JA. CFS prevalence and risk factors over time. J Health Psychol. 2011 Apr;16(3):445-56. doi: 10.1177/1359105310383603. Epub 2011 Jan 11. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3166209/ (Full article)

 

Frequency and content analysis of chronic fatigue syndrome in medical text books

Abstract:

Text books are a cornerstone in the training of medical staff and students, and they are an important source of references and reviews for these professionals. The objective of this study was to determine both the quantity and quality of chronic fatigue syndrome (CFS) information included in medical texts.

After reviewing 119 medical text books from various medical specialties, we found that 48 (40.3%) of the medical text books included information on CFS. However, among the 129 527 total pages within these medical text books, the CFS content was presented on only 116.3 (0.090%) pages. Other illnesses that are less prevalent, such as multiple sclerosis and Lyme disease, were more frequently represented in medical text books. These findings suggest that the topic of CFS is underreported in published medical text books.

 

Source: Jason LA, Paavola E, Porter N, Morello ML. Frequency and content analysis of chronic fatigue syndrome in medical text books. Aust J Prim Health. 2010;16(2):174-8. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3691015/ (Full article)

 

What is fatigue? Pathological and nonpathological fatigue

Abstract:

Aid in understanding issues surrounding the construct validity of fatigue including the distinction between pathological versus nonpathological fatigue. Fatigue is a universal symptom reported by individuals in the general population as well as by those suffering from different medical and psychological illnesses, including cancer, multiple sclerosis, chronic fatigue syndrome, depression, and anxiety. Chronic fatigue is a significant problem in many primary care settings, and the debilitating and prolonged nature of fatigue can pose significant economic consequences for society. Researchers have struggled to better assess and understand the etiology and classification of fatigue within different illness groups.

Copyright (c) 2010 American Academy of Physical Medicine and Rehabilitation. Published by Elsevier Inc. All rights reserved.

 

Source: Jason LA, Evans M, Brown M, Porter N. What is fatigue? Pathological and nonpathological fatigue. PM R. 2010 May;2(5):327-31. doi: 10.1016/j.pmrj.2010.03.028. https://www.ncbi.nlm.nih.gov/pubmed/20656613

 

Measuring substantial reductions in functioning in patients with chronic fatigue syndrome

Abstract:

PURPOSE: All the major current case definitions for chronic fatigue syndrome (CFS) specify substantial reductions in previous levels of occupational, educational, social, or personal activities to meet criteria. Difficulties have been encountered in operationalizing ‘substantial reductions.’ For example, the Medical Outcomes Study Short Form-36 Health Survey (SF-36) has been used to determine whether individuals met the CFS disability criterion. However, previous methods of using the SF-36 have been prone to including people without substantial reductions in key areas of physical functioning when diagnosing CFS. This study sought to empirically identify the most appropriate SF-36 subscales for measuring substantial reductions in patients with CFS.

METHOD: The SF-36 was administered to two samples of patients with CFS: one recruited from tertiary care and the other a community-based sample; as well as a non-fatigued control group. Receiver operating characteristics were used to determine the optimal cutoff scores for identifying patients with CFS.

RESULTS: The SF-36 Role-Emotional subscale had the worst sensitivity and specificity, whereas the Vitality, Role-Physical, and Social Functioning subscales had the best sensitivity and specificity.

CONCLUSION: Based on the evidence from this study, the potential criteria for defining substantial reductions in functioning and diagnosing CFS is provided.

© 2011 Informa UK, Ltd.

 

Source: Jason L, Brown M, Evans M, Anderson V, Lerch A, Brown A, Hunnell J, Porter N. Measuring substantial reductions in functioning in patients with chronic fatigue syndrome. Disabil Rehabil. 2011;33(7):589-98. doi: 10.3109/09638288.2010.503256. Epub 2010 Jul 9. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3170036/ (Full article)

 

Illness duration and coping style in chronic fatigue syndrome

Abstract:

A sample of patients with chronic fatigue syndrome was recruited to assess coping strategies and illness duration. It was hypothesized that adaptive coping strategies would be higher among those with longer illness duration.

Those in the longer illness duration group reported higher use of active coping, positive reframing, planning, and acceptance, and lower use of behavioral disengagement than those in the shorter illness duration group. No significant differences were found between the two illness duration groups for physical impairment or symptom severity, but the long duration group revealed a lower percentage of participants who were working than the short duration group.

These findings suggest that individuals with longer or shorter duration of the illness have differences in coping styles but not differences in physical impairment or symptom severity.

 

Source: Brown MM, Brown AA, Jason LA. Illness duration and coping style in chronic fatigue syndrome. Psychol Rep. 2010 Apr;106(2):383-93. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3036543/ (Full article)

 

A Comparison of Immune Functionality in Viral versus Non-Viral CFS Subtypes

Abstract:

Participants with CFS were grouped into viral and non-viral onset fatigue categories and assessed for differential immunological marker expression. Peripheral Blood Mononuclear Cells were assessed for differential phenotypic expression of surface adherence glycoproteins on circulating lymphocytes. The flow cytometric analysis employed fluorescent monoclonal antibody labeling.

The viral in comparison to the non-viral group demonstrated significant elevations in several Th1 type subsets including: the percentage and number of CD4+ cells, the percentage and number of CD2+CD26+ cells, the percentage and number of CD2+CD4+CD26+ cells, the percentage and number of CD4+ CD26+ cells, and the percentage of Th2 naïve cells (CD4+ CD45RA+CD62L+).

Of the remaining significant findings, the non viral group demonstrated significant elevations in comparison to the viral group for the following Th1 type subsets: the percentage of CD8+ cells, the percentage of T-cytotoxic suppressor cells (CD3+8+), and the percentage and number of Th1 memory cells (CD8+CD45RA-CD62L-).

The viral group demonstrated a pattern of activation that differed from that of the group with a non-viral etiology, as evidenced by an elevated and out of range percentage and number of CD4+ cells, the percentage of CD2+CD26+, and the percentage of Th2 naïve cells (CD4+CD45RA+CD62L+). Both groups demonstrated reduced and out of range Natural Killer Cell Cytotoxicity and percentage of B-1 cells (CD5+CD19).

In addition, both groups demonstrated an elevated and out of range percentage of CD2+CD8+CD26+, percentage of the Th1 memory subset (CD4+CD45RA-CD62L-), the percentage of Th1 memory and naïve cells (CD8+CD45RA-CD62L-, CD8+CD45RA+CD62L-), the percentage and number of Th2 memory cells (CD4+CD45RA-CD62L+), and the percentage of Th2 memory and naïve cells (CD8+CD45RA-CD62L+, CD8+CD45RA+CD62L+).

These findings imply that the homeostatic mechanism responsible for the regulation of the Th1 (cell mediated) and Th2 (humoral) immune responses is disturbed in CFS. The implications of these findings are discussed.

 

Source: Porter N, Lerch A, Jason LA, Sorenson M, Fletcher MA, Herrington J. A Comparison of Immune Functionality in Viral versus Non-Viral CFS Subtypes. J Behav Neurosci Res. 2010 Jun 1;8(2):1-8. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3951052/ (Full article)