Jason – Page 16 – American ME and CFS Society

Pacing as a strategy to improve energy management in myalgic encephalomyelitis/chronic fatigue syndrome: a consensus document

Abstract:

PURPOSE: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating condition characterized by a number of symptoms which typically worsen following minimal exertion. Various strategies to manage the limited energy levels have been proposed. Of these, pacing has been consistently rated as one of the most helpful in surveys conducted by patient groups. This review is a response to the paucity of the information on pacing in the scientific literature.

METHOD: We describe the principle of pacing and how this can be adapted to meet individual abilities and preferences. A critical evaluation of the research was conducted to ascertain the benefits and limitations of this strategy.

RESULTS: Based on various studies, it is proposed that pacing can help to stabilize the condition and avoid post-exertional malaise.

CONCLUSION: Pacing offers practitioners an additional therapeutic option which is acceptable to the majority of patients and can reduce the severity of the exertion-related symptoms of ME/CFS.

Source: Goudsmit EM, Nijs J, Jason LA, Wallman KE. Pacing as a strategy to improve energy management in myalgic encephalomyelitis/chronic fatigue syndrome: a consensus document. Disabil Rehabil. 2012;34(13):1140-7. doi: 10.3109/09638288.2011.635746. Epub 2011 Dec 19. https://www.ncbi.nlm.nih.gov/pubmed/22181560

Contrasting case definitions for chronic fatigue syndrome, Myalgic Encephalomyelitis/chronic fatigue syndrome and myalgic encephalomyelitis

Abstract:

This article uses data from patients recruited using the 1994 case definition of chronic fatigue syndrome (CFS) to contrast those meeting criteria for the Myalgic Encephalomyelitis/chronic fatigue syndrome (ME/CFS) Canadian case definition with those that did not meet these criteria. The study also contrasts those meeting criteria for Myalgic Encephalomyelitis (ME) based on criteria from Ramsay and other theorists with those that did not meet the ME criteria. The ME/CFS case definition criteria identified a subset of patients with more functional impairments and physical, mental, and cognitive problems than the subset not meeting these criteria. The ME subset had more functional impairments, and more severe physical and cognitive symptoms than the subset not meeting ME criteria. When applied to a population meeting the 1994 CFS case definition, both ME/CFS and ME criteria appear to select a more severe subset of patients.

Source: Jason LA, Brown A, Clyne E, Bartgis L, Evans M, Brown M. Contrasting case definitions for chronic fatigue syndrome, Myalgic Encephalomyelitis/chronic fatigue syndrome and myalgic encephalomyelitis. Eval Health Prof. 2012 Sep;35(3):280-304. doi: 10.1177/0163278711424281. Epub 2011 Dec 7. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3658447/ (Full article)

Factor analysis of the Beck Depression Inventory-II with patients with chronic fatigue syndrome

Abstract:

This study examined the properties of the Beck Depression Inventory-II (BDI-II) in a sample of 111 patients with chronic fatigue syndrome (CFS). Exploratory factor analysis identified two factors. The mean score for the Somatic-Affective factor was significantly higher than the Cognitive factor. Convergent and discriminant validity were assessed for BDI-II total score, the two factor scores, and the BDI for Primary Care (BDI-PC). The BDI-PC and Cognitive factor demonstrated superior validity. Results suggest patients endorse BDI-II somatic items that overlap with CFS symptoms at a high rate. Factor scores should be evaluated separately, or the BDI-PC should be utilized with this population.

Source: Brown M, Kaplan C, Jason L. Factor analysis of the Beck Depression Inventory-II with patients with chronic fatigue syndrome. J Health Psychol. 2012 Sep;17(6):799-808. doi: 10.1177/1359105311424470. Epub 2011 Nov 21. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3655435/ (Full article)

Fatigue Scales and Chronic Fatigue Syndrome: Issues of Sensitivity and Specificity

Abstract:

Few studies have explored issues of sensitivity and specificity for using the fatigue construct to identify patients meeting chronic fatigue syndrome (CFS) criteria. In this article, we examine the sensitivity and specificity of several fatigue scales that have attempted to define severe fatigue within CFS. Using Receiver Operating Characteristic (ROC) curve analysis, we found most scales and sub-scales had either significant specificity and/or sensitivity problems.

However, the post-exertional subscale of the ME/CFS Fatigue Types Questionnaire (Jason, Jessen, et al., 2009) was the most promising in terms of specificity and sensitivity. Among the more traditional fatigue scales, Krupp, LaRocca, Muir-Nash, and Steinberg’s (1989) Fatigue Severity Scale had the best ability to differentiate CFS from healthy controls. Selecting questions, scales and cut off points to measure fatigue must be done with extreme care in order to successfully identify CFS cases.

Source: Jason LA, Evans M, Brown M, Porter N, Brown A, Hunnell J, Anderson V, Lerch A. Fatigue Scales and Chronic Fatigue Syndrome: Issues of Sensitivity and Specificity. Disabil Stud Q. 2011 Winter;31(1). Pii: 1375. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3181109/ (Full article)

An Etiological Model for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Abstract:

Kindling might represent a heuristic model for understanding the etiology of Myalgic Encephalomyelitis/chronic fatigue syndrome (ME/CFS). Kindling occurs when an organism is exposed repeatedly to an initially sub-threshold stimulus resulting in hypersensitivity and spontaneous seizure-like activity. Among patients with ME/CFS, chronically repeated low-intensity stimulation due to an infectious illness might cause kindling of the limbic-hypothalamic-pituitary axis. Kindling might also occur by high-intensity stimulation (e.g., brain trauma) of the limbic-hypothalamic-pituitary axis. Once this system is charged or kindled, it can sustain a high level of arousal with little or no external stimulus and eventually this could lead to hypocortisolism. Seizure activity may spread to adjacent structures of the limbic-hypothalamic-pituitary axis in the brain, which might be responsible for the varied symptoms that occur among patients with ME/CFS. In addition, kindling may also be responsible for high levels of oxidative stress, which has been found in patients with ME/CFS.

Source: Jason LA, Sorenson M, Porter N, Belkairous N. An Etiological Model for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Neurosci Med. 2011 Mar 1;2(1):14-27. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3166239/ (Full article)

Small wins matter in advocacy movements: giving voice to patients

Abstract:

In this article, the various players are delineated in a story of a contested illness and patient advocacy, played out within the corridors of federal power. It is suggested that the mistreatment and negative attitudes that health care providers and others have towards those with chronic fatigue syndrome (CFS) is possibly due to the social construction of this illness as being a “Yuppie flu” disease. Institutional factors are identified that created these norms and attributions, as well as the multiple stakeholders and constituent groups invested in exerting pressure on policy makers to effect systemic change. This article also provides examples of how the field of Community Psychology, which is fundamentally committed to/based on listening to and giving voice to patients, is broadly relevant to patient activism communities. This approach focused, over time, on epidemiological studies, the name, the case definition, and ultimately the change in CFS leadership at the Centers for Disease Control and Prevention. Keys to this “small wins” approach were coalition building, use of “oppositional experts” (professionals in the scientific community who support patient advocacy goals) to challenge federal research, and taking advantage of developing events/shifts in power. Ultimately, this approach can result in significant scientific and policy gains, and changes in medical and public perception of an illness.

Source: Jason LA. Small wins matter in advocacy movements: giving voice to patients. Am J Community Psychol. 2012 Jun;49(3-4):307-16. doi: 10.1007/s10464-011-9457-7. https://www.ncbi.nlm.nih.gov/pubmed/21858612

Data mining: comparing the empiric CFS to the Canadian ME/CFS case definition

Abstract:

This article contrasts two case definitions for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). We compared the empiric CFS case definition (Reeves et al., 2005) and the Canadian ME/CFS clinical case definition (Carruthers et al., 2003) with a sample of individuals with CFS versus those without. Data mining with decision trees was used to identify the best items to identify patients with CFS. Data mining is a statistical technique that was used to help determine which of the survey questions were most effective for accurately classifying cases. The empiric criteria identified about 79% of patients with CFS and the Canadian criteria identified 87% of patients. Items identified by the Canadian criteria had more construct validity. The implications of these findings are discussed.

Source: Jason LA, Skendrovic B, Furst J, Brown A, Weng A, Bronikowski C. Data mining: comparing the empiric CFS to the Canadian ME/CFS case definition. J Clin Psychol. 2012 Jan;68(1):41-9. doi: 10.1002/jclp.20827. Epub 2011 Aug 5. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3228898/ (Full article)

The effect of homework compliance on treatment outcomes for participants with myalgic encephalomyelitis/chronic fatigue syndrome

Abstract:

PURPOSE: This study examined the relationship between level of treatment engagement through completion of homework on treatment outcomes within nonpharmacological interventions for participants with ME/CFS.

METHOD: A sample of 82 participants with ME/CFS was randomly assigned to one of four nonpharmacological interventions. Each intervention involved 13 sessions over the course of 6 months. Change scores were computed for self-report measures taken at baseline and 12-month follow-up. Homework compliance was calculated as the percentage of completed assignments across the total number of sessions and grouped into three categories: minimum (0-25%), moderate (25.1-75%), or maximum (75.1-100%).

RESULTS: Findings revealed that after controlling for treatment condition, those who completed a maximum amount of homework had greater improvement on a number of self-report outcome measures involving role, social, and mental health functioning. There were no differential improvements in physical and fatigue functioning based on level of homework compliance.

IMPLICATIONS: Findings from this study suggest homework compliance can have a positive influence on some aspects of physical, social, and mental health functioning in participants with ME/CFS. It should be emphasized that these interventions do not cure this illness. The lack of significant changes in physical functioning and fatigue levels suggests a need for more multidisciplinary treatment approaches that can elicit improvement in these areas.

Source: Hlavaty LE, Brown MM, Jason LA. The effect of homework compliance on treatment outcomes for participants with myalgic encephalomyelitis/chronic fatigue syndrome. Rehabil Psychol. 2011 Aug;56(3):212-8. doi: 10.1037/a0024118. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3166212/ (Full article)

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.

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.

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