Jason – Page 15 – American ME and CFS Society

Examining the energy envelope and associated symptom patterns in chronic fatigue syndrome: does coping matter?

Abstract:

OBJECTIVE/Hypothesis: The objective of this study was to examine sub-types of individuals with chronic fatigue syndrome based on variables that are associated with the energy envelope theory and to examine the role of coping strategies in explaining the differences found between the subtypes.

METHODS: Cluster analysis was used. Grouping variables included physical functioning, post-exertional malaise severity, and the extent to which an individual was outside of the energy envelope. These clusters were evaluated using discriminant function analysis to determine whether they could be differentiated based on coping styles.

RESULTS: Cluster analysis identified three groups. Clusters 1 and 2 were consistent with the energy envelope theory. However, Cluster 3 was characterized by patients with the most impairment, but they were to a lesser extent exceeding their energy envelope. Coping strategies explained a small percentage (10%) of the variance in differentiating the clusters.

DISCUSSION: Energy maintenance may be associated with improved functioning and less severe symptoms for some. However, patients in Cluster 3 were closer to remaining within their energy envelope and also used higher levels of adaptive coping but were more impaired than Cluster 2. This suggests that adaptive coping strategies were not associated with improved health, as members of Cluster 3 were severely limited in functioning.

Source: Brown AA, Evans MA, Jason LA. Examining the energy envelope and associated symptom patterns in chronic fatigue syndrome: does coping matter? Chronic Illn. 2013 Dec;9(4):302-11. doi: 10.1177/1742395313478220. Epub 2013 Apr 12. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3893101/ (Full article)

Energy Conservation/Envelope Theory Interventions to Help Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Abstract:

OBJECTIVES: Treatment approaches for patients with Myalgic Encephalomyelitis/chronic fatigue syndrome (ME/CFS) have been controversial. This paper provides the theoretical and conceptual background for the Energy Envelope Theory to assist patients with ME/CFS and reviews evidence of its treatment efficacy.

METHODS: Over a 15-year period, efforts were directed to develop a non-pharmacologic intervention that endeavored to help patients with ME/CFS self-monitor and self-regulate energy expenditures and learn to pace activities and stay within their energy envelope.

CONCLUSIONS: Studies show that the energy envelope approach, which involves rehabilitation methods, helps patients with ME/CFS pace activities and manage symptoms and can significantly improve their quality of life.

Source: Jason LA, Brown M, Brown A, Evans M, Flores S, Grant-Holler E, Sunnquist M. Energy Conservation/Envelope Theory Interventions to Help Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Fatigue. 2013 Jan 14;1(1-2):27-42. Epub 2012 Aug 8. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3596172/ (Full article)

A qualitative natural history study of ME/CFS in the community

Abstract:

In previous qualitative research on Myalgic Encephalomyelitis/chronic fatigue syndrome (ME/CFS), researchers have focused on the experiences of patients with ME/CFS in tertiary care samples. This qualitative study examined the natural history of people with ME/CFS (n = 19) from a community-based sample. Findings highlighted multilayered themes involving the illness experience and the physical construction of ME/CFS.

In addition, this study further illuminated unique subthemes regarding community response and treatment, which have implications for understanding the progression of ME/CFS as well as experiences of those within patient networks. There is a need for more longitudinal qualitative research on epidemiological samples of patients with ME/CFS.

Source: Anderson VR, Jason LA, Hlavaty LE. A qualitative natural history study of ME/CFS in the community. Health Care Women Int. 2014 Jan;35(1):3-26. doi: 10.1080/07399332.2012.684816. Epub 2013 Feb 27. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4852694/ (Full article)

Chronic fatigue syndrome following infections in adolescents

Abstract:

PURPOSE OF REVIEW: To review the recent epidemiology, pathophysiology, and treatment of postinfectious chronic fatigue syndrome (CFS) in adolescents.

RECENT FINDINGS: Thirteen percent of adolescents (mainly women) met the criteria for CFS 6 months following infectious mononucleosis; the figure was 7% at 12 months and 4% at 24 months. Peak work capacity, activity level, orthostatic intolerance, salivary cortisol, and natural killer cell number and function were similar between adolescents with CFS following infectious mononucleosis and recovered controls. Autonomic system, oxygen consumption, peak oxygen pulse, psychological and cytokine network differences were documented between those who recovered and those who did not.

SUMMARY: The prognosis of CFS is better in adolescents than in adults. Activity level, exercise tolerance, and orthostatic testing could not distinguish patients with CFS from adolescents who have recovered from infectious mononucleosis (controls), while certain cytokine network analyses, life stress factors, and autonomic symptoms could.

Source: Katz BZ, Jason LA. Chronic fatigue syndrome following infections in adolescents. Curr Opin Pediatr. 2013 Feb;25(1):95-102. doi: 10.1097/MOP.0b013e32835c1108. https://www.ncbi.nlm.nih.gov/pubmed/23263024

Antibody to Epstein-Barr virus deoxyuridine triphosphate nucleotidohydrolase and deoxyribonucleotide polymerase in a chronic fatigue syndrome subset

Abstract:

BACKGROUND: A defined diagnostic panel differentiated patients who had been diagnosed with chronic fatigue syndrome (CFS), based upon Fukuda/Carruthers criteria. This diagnostic panel identified an Epstein-Barr virus (EBV) subset of patients (6), excluding for the first time other similar “clinical” conditions such as cytomegalovirus (CMV), human herpesvirus 6 (HHV6), babesiosis, ehrlichiosis, borreliosis, Mycoplasma pneumoniae, Chlamydia pneumoniae, and adult rheumatic fever, which may be mistakenly called CFS. CFS patients were treated with valacyclovir (14.3 mg/kg q6h) for ≥ 12 months. Each patient improved, based upon the Functional Activity Appraisal: Energy Index Score Healthcare Worker Assessment (EIPS), which is a validated (FSS-9), item scale with high degree of internal consistency measured by Cronbach’s alpha.

METHODS: Antibody to EBV viral capsid antigen (VCA) IgM, EBV Diffuse Early Antigen EA(D), and neutralizing antibodies against EBV-encoded DNA polymerase and EBV-encoded dUTPase were assayed serially approximately every three months for 13-16 months from sera obtained from patients with CFS (6) and from sera obtained from twenty patients who had no history of CFS.

RESULTS: Antibodies to EBV EA(D) and neutralizing antibodies against the encoded-proteins EBV DNA polymerase and deoxyuridine triphosphate nucleotidohydrolase (dUTPase) were present in the EBV subset CFS patients. Of the sera samples obtained from patients with CFS 93.9% were positive for EA(D), while 31.6% of the control patients were positive for EBV EA(D). Serum samples were positive for neutralizing antibodies against the EBV-encoded dUTPase (23/52; 44.2%) and DNA polymerase (41/52; 78.8%) in EBV subset CFS patients, but negative in sera of controls.

CONCLUSIONS: There is prolonged elevated antibody level against the encoded proteins EBV dUTPase and EBV DNA polymerase in a subset of CFS patients, suggesting that this antibody panel could be used to identify these patients, if these preliminary findings are corroborated by studies with a larger number of EBV subset CFS patients.

Source: Lerner AM, Ariza ME, Williams M, Jason L, Beqaj S, Fitzgerald JT, Lemeshow S, Glaser R.Antibody to Epstein-Barr virus deoxyuridine triphosphate nucleotidohydrolase and deoxyribonucleotide polymerase in a chronic fatigue syndrome subset. PLoS One. 2012;7(11):e47891. doi: 10.1371/journal.pone.0047891. Epub 2012 Nov 14. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3498272/ (Full article)

Predictors of Fatigue among Patients with Chronic Fatigue Syndrome

Abstract:

Activity logs involve patients writing down their activities over one or more days. Several studies have found these data collection instruments to accurately describe activities of patients with chronic fatigue syndrome (CFS). The purpose of this study was to utilize the repeated measures available on the ACTRE to evaluate predictors of fatigue at a given timepoint.

A random intercept model was tested with the following variables predicting current fatigue: past fatigue (30 mins. prior), current category of activity (e.g., resting, work, recreation, etc.), past category of activity (30 mins. prior), the interaction of past fatigue and past activity, and TH2/TH1 immune shift. These findings and others suggest that activity logs can provide investigators and clinicians with valuable sources of data for understanding patterns of behavior and activity among patients with CFS.

Source: Jason LA, Brown M, Evans M, Brown A. Predictors of Fatigue among Patients with Chronic Fatigue Syndrome. J Hum Behav Soc Environ. 2012 Oct 1;22(7):822-833. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3955704/ (Full article)

Understanding long-term outcomes of chronic fatigue syndrome

Abstract:

OBJECTIVE: This study sought to examine long-term health, symptom, and disability outcomes among patients with chronic fatigue syndrome (CFS) by comparing those diagnosed with CFS 25 years ago with healthy controls.

METHOD: Of the 25 participants diagnosed with CFS 25 years ago, 5 self-reported that they maintained a diagnosis of CFS, while 20 reported no longer having a diagnosis. These two groups were compared with healthy controls on outcomes related to functioning and symptom severity.

RESULTS: Those who remitted from CFS showed significantly more impairment on 21 out of 23 outcomes compared with controls. On 17 outcomes, those who remitted had nonsignificant differences in impairment compared to those who maintained a CFS diagnosis.

CONCLUSIONS: Findings from this study suggest that over time many individuals will not maintain a CFS diagnosis but will not return to their premorbid level of functioning.

Source: Brown MM, Bell DS, Jason LA, Christos C, Bell DE. Understanding long-term outcomes of chronic fatigue syndrome. J Clin Psychol. 2012 Sep;68(9):1028-35. doi: 10.1002/jclp.21880. Epub 2012 Jun 29. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3940158/ (Full article)

Sub-typing daily fatigue progression in chronic fatigue syndrome

Abstract:

BACKGROUND: Activity logs involve patients writing down their activities and symptoms over 1 or more days. Aims This study sought to classify daily fatigue patterns among patients with chronic fatigue syndrome (CFS) using activity logs.

METHOD: Fatigue intensity was self-reported every 30 min in a sample of 90 patients with CFS over 1 day. A cluster analysis using fatigue intensity, variability and slope was conducted.

RESULTS: Three clusters emerged involving patients with different trajectories. One group evidenced high fatigue intensity, low variability, and fatigue intensity stayed the same over time. A second group had moderate fatigue intensity, high variability, and fatigue intensity decreased over time. A third group had moderate fatigue intensity, high variability, but fatigue intensity increased over time. The three clusters of patients differed on measures of actigraphy, pain and immune functioning.

CONCLUSIONS: Activity logs can provide investigators and clinicians with valuable sources of data for understanding patterns of fatigue and activity among patients with CFS.

Source: Jason LA, Brown MM. Sub-typing daily fatigue progression in chronic fatigue syndrome. J Ment Health. 2013 Feb;22(1):4-11. doi: 10.3109/09638237.2012.670879. Epub 2012 May 1. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3889482/ (Full article)

Minimum data elements for research reports on CFS

Abstract:

Chronic fatigue syndrome (CFS) is a debilitating condition that has received increasing attention from researchers in the past decade. However, it has become difficult to compare data collected in different laboratories due to the variability in basic information regarding descriptions of sampling methods, patient characteristics, and clinical assessments. The issue of variability in CFS research was recently highlighted at the NIH’s 2011 State of the Knowledge of CFS meeting prompting researchers to consider the critical information that should be included in CFS research reports.

To address this problem, we present our consensus on the minimum data elements that should be included in all CFS research reports, along with additional elements that are currently being evaluated in specific research studies that show promise as important patient descriptors for subgrouping of CFS. These recommendations are intended to improve the consistency of reported methods and the interpretability of reported results. Adherence to minimum standards and increased reporting consistency will allow for better comparisons among published CFS articles, provide guidance for future research and foster the generation of knowledge that can directly benefit the patient.

Source: Jason LA, Unger ER, Dimitrakoff JD, Fagin AP, Houghton M, Cook DB, Marshall GD Jr, Klimas N, Snell C. Minimum data elements for research reports on CFS. Brain Behav Immun. 2012 Mar;26(3):401-6. doi: 10.1016/j.bbi.2012.01.014. Epub 2012 Jan 28. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4643273/ (Full article)

Pediatric Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Abstract:

Research on pediatric Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is reviewed in this article. Many recent articles in this area highlight the existence of key differences between the adult and pediatric forms of the illness. This review article provides an overview of pediatric ME/CFS, including epidemiology, diagnostic criteria, treatment, and prognosis. Challenges to the field are identified with the hope that in the future pediatric cases of ME/CFS can be more accurately diagnosed and successfully managed.

Source: Jason LA, Barker K, Brown A. Pediatric Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Rev Health Care. 2012 Jan 1;3(4):257-270. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3856907/ (Full article)