Tag: Jason

Access to Medical Care for Individuals with Myalgic Encephalomyelitis and Chronic Fatigue Syndrome: A Call for Centers of Excellence

Abstract:

The current study sought to better understand the experience of individuals with myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) in accessing care for their debilitating illness. Of 898 participants, less than half had ever seen an ME or CFS specialist, though 99% of participants were interested in specialist care. Participants cited geographic and financial barriers as most frequently precluding access to specialists. Furthermore, satisfaction with specialist care greatly exceeded satisfaction with non-specialist care. These findings suggested that individuals with ME and CFS represent a medically-underserved population, due to lack of available care. The CFS Advisory Committee and NIH Pathways to Prevention Working Group recommended the creation of ME and CFS Centers of Excellence to improve the healthcare access of patients with ME and CFS. The current study documents the need for these centers, as they would ameliorate geographic and financial barriers to quality care.

Source: Sunnquist M, Nicholson L, Jason LA, Friedman KJ. Access to Medical Care for Individuals with Myalgic Encephalomyelitis and Chronic Fatigue Syndrome: A Call for Centers of Excellence. Mod Clin Med Res. 2017 Apr;1(1):28-35. doi: 10.22606/mcmr.2017.11005. Epub 2017 Apr 13. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5510655/ (Full article)

Subtyping Patients with Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) By Course of Illness

Abstract:
Past research has subtyped patients with Myalgic Encephalolyelitis (ME) and Chronic Fatigue Syndrome (CFS) according to factors related to illness onset, illness duration, and age. However, no classification system fully accounts for the wide range of symptom severity, functional disability, progression, and prognosis seen among patients. This study examined whether illness trajectories among individuals with CFS were predictive of different levels of symptomology, functional disability, and energy expenditure.
Of the participants (N=541), the majority described their illness as Fluctuating (59.7%), with 15.9% Constantly Getting Worse, 14.1% Persisting, 8.5% Relapsing and Remitting, and 1.9% Constantly Getting Better. The illness courses were associated with significant differences in symptomology on select domains of the DSQ, functioning on select subscales of the SF-36, and on overall levels of energy expenditure.
The significant symptomatic and functional differences between groups suggest that subtyping patients with CFS according to illness course is a promising method for creating more homogeneous groups of patients.
Source:  Jamie Stoothoff, Kristen Gleason, Stephanie McManimen, Taylor Thorpe and Leonard A. Jason.  Subtyping Patients with Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) By Course of Illness. Symbiosis, June 26, 2017. https://symbiosisonlinepublishing.com/biosensors-biomarkers-diagnostics/biosensors-biomarkers-diagnostics13.pdf (Full article)

Post-Exertional Malaise in Patients with ME and CFS with Comorbid Fibromyalgia

Abstract:

BACKGROUND: Myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) share some similar symptoms with fibromyalgia (FM). Prior research has found increased illness severity when patients have FM that is comorbid with ME and CFS. For example, post-exertional malaise (PEM) has been shown to be more severe in those with comorbid FM. However, PEM can be separated into two factors, Muscle and General PEM. It is unknown if the more severe PEM findings in comorbid FM are due to the Muscle or General PEM factor.

PURPOSE:The purpose of this study was to determine if the PEM differences seen between patients with and without comorbid FM exist for the Muscle or General PEM factors.

METHOD: An international convenience sample was collected via an online questionnaire. The questionnaire assessed the frequency and severity of several PEM-related symptoms. Additionally, participants provided information regarding the course and characteristics of their illness.

RESULTS: Participants that indicated a comorbid diagnosis of FM displayed significantly more frequent and severe PEM symptoms in the Muscle and General PEM factors. The FM group also indicated significantly worse physical functioning compared to the group without comorbid FM.

DISCUSSION: The secondary diagnosis of FM in addition to ME and CFS appears to amplify the PEM symptomatology and worsen patients' physical functioning. The findings of this study have notable implications on the inclusion of patients with comorbid FM in ME and CFS research studies.

Source: McManimen SL, Jason LA. Post-Exertional Malaise in Patients with ME and CFS with Comorbid Fibromyalgia. SRL Neurol Neurosurg. 2017;3(1):22-27. Epub 2017 Mar 10. https://www.ncbi.nlm.nih.gov/pubmed/28603794

A Comparison of Case Definitions for Myalgic Encephalomyelitis and Chronic Fatigue Syndrome

Abstract:

Many professionals have described the clinical presentation of myalgic
encephalomyelitis (ME), but recent efforts have focused on the development of ME
criteria that can be reliably applied. The current study compared the symptoms and
functioning of individuals who met the newly-developed Institute of Medicine (IOM)
clinical criteria to a revised version of the London criteria for ME. While 76% of a
sample diagnosed with chronic fatigue syndrome (CFS) met the IOM criteria, 44%
met the revised London criteria. The revised London criteria identified patients with
greater physical impairment. The results of this study indicate the need for a standard
case definition with specific guidelines for operationalization. The application of case
definitions has important implications for the number of individuals identified with ME,
the pattern of symptoms experienced by these individuals, and the severity of their
symptoms and functional limitations. Sample heterogeneity across research studies
hinders researchers from replicating findings and impedes the search for biological
markers and effective treatments.

Source: Madison Sunnquist, Leonard A. Jason, Pamela Nehrke, and Ellen M. Goudsmit. A Comparison of Case Definitions for Myalgic Encephalomyelitis and Chronic Fatigue Syndrome. Journal of Chronic Diseases and Management. https://www.jscimedcentral.com/ChronicDiseases/chronicdiseases-2-1013.pdf (Full article)

 

Dysregulation of cytokine pathways in chronic fatigue syndrome and multiple sclerosis

Abstract:

Background: Cytokine studies in chronic fatigue syndrome (CFS) have yielded mixed findings.

Purpose: This investigation evaluated whether network analysis of cytokine production differs between patients with CFS and multiple sclerosis (MS) as compared to a reference group of healthy controls.

Methods: Three subgroups (N = 109) were included: 15 participants who met diagnostic criteria for CFS, 57 participants meeting criteria for MS, and 37 controls. Peripheral blood was obtained and production of a select cytokine profile was determined from stimulated and unstimulated mononuclear cells. Data were generated through the use of a multi-analyte bead suspension array. Pairwise associations were determined for each group, and these associations were used to create a graphical representation of the data. The graph was clustered using an eigenvector community algorithm and results visualized using edges to model the correlations by color and thickness to show direction and strength.

Results: The control and MS groups produced a three-neighborhood relationship regardless of cell condition. While producing a three-neighborhood relationship, the MS group differed significantly from the control group as it displayed stronger relationships among pro-inflammatory cytokines. In contrast, the CFS group displayed a three-neighborhood solution when unstimulated. However, when cells from the CFS group were stimulated, a two-neighborhood model was found that exhibited stronger inter-cytokine correlations. The model found in CFS was significantly different from that found in the control and MS groups.

Conclusion: CFS was characterized by a pattern of global immunologic activation using network analysis, fundamentally different from those found for either MS or control groups.

Source: Matthew Sorenson, Jacob Furst, Herbert Mathews & Leonard A. Jason. Dysregulation of cytokine pathways in chronic fatigue syndrome and multiple sclerosis. Fatigue: Biomedicine, Health & Behavior, Published online: 07 Jun 2017. http://www.tandfonline.com/doi/abs/10.1080/21641846.2017.1335237?journalCode=rftg20

Access to Medical Care for Individuals with Myalgic Encephalomyelitis and Chronic Fatigue Syndrome: A Call for Centers of Excellence

Abstract:

The current study sought to better understand the experience of individuals with myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) in accessing care for their debilitating illness. Of 898 participants, less than half had ever seen an ME or CFS specialist, though 99% of participants were interested in specialist care. Participants cited geographic and financial barriers as most frequently precluding access to specialists. Furthermore, satisfaction with specialist care greatly exceeded satisfaction with non-specialist care. These findings suggested that individuals with ME and CFS represent a medically-underserved population, due to lack of available care. The CFS Advisory Committee and NIH Pathways to Prevention Working Group recommended the creation of ME and CFS Centers of Excellence to improve the healthcare access of patients with ME and CFS. The current study documents the need for these centers, as they would ameliorate geographic and financial barriers to quality care.

Source: Madison Sunnquist, Laura Nicholson, Leonard A. Jason, and Kenneth J. Friedman. Access to Medical Care for Individuals with Myalgic Encephalomyelitis and Chronic Fatigue Syndrome: A Call for Centers of Excellence. Modern Clinical Medicine Research, Vol. 1, No. 1, April 2017. (Full article)

Differences in ME and CFS Symptomology in Patients with Normal and Abnormal Exercise Test Results

Abstract:

Post-exertional malaise (PEM) is a cardinal symptom of myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS), which often distinguishes patients with this illness from healthy controls or individuals with exclusionary illnesses such as depression. However, occurrence rates for PEM fluctuate from subject to how the symptom is operationalized. One commonly utilized method is exercise testing, maximal or submaximal. Many patients with ME and CFS experience PEM after participating in these tests, and often show abnormal results. However, some patients still exhibit normal results after participating in the exercise testing.

This study examined the differences between two patient groups with ME and CFS, those with normal results and those with abnormal results, on several PEM-related symptoms and illness characteristics. The results suggest those that displayed abnormal results following testing have more frequent and severe PEM, worse overall functioning, and are more likely to be bedbound than those that displayed normal results.

 

Source: Stephanie L McManimen and Leonard A Jason. Differences in ME and CFS Symptomology in Patients with Normal and Abnormal Exercise Test Results. Int J Neurol Neurother, IJNN-4-066, (Volume 4, Issue 1), Research Article; ISSN: 2378-3001 DOI: 10.23937/2378-3001/1410066 (Full article)

From good health to illness with post-infectious fatigue syndrome: a qualitative study of adults’ experiences of the illness trajectory

Abstract:

BACKGROUND: Municipal drinking water contaminated with the parasite Giardia lamblia in Bergen, Norway, in 2004 caused an outbreak of gastrointestinal infection in 2500 people, according to the Norwegian Prescription Database. In the aftermath a minor group subsequently developed post-infectious fatigue syndrome (PIFS). Persons in this minor group had laboratory-confirmed parasites in their stool samples, and their enteritis had been cured by one or more courses of antibiotic treatment. The study’s purpose was to explore how the affected persons experienced the illness trajectory and various PIFS disabilities.

METHODS: A qualitative design with in-depth interviews was used to obtain first-hand experiences of PIFS. To get an overall understanding of their perceived illness trajectory, the participants were asked to retrospectively rate their functional level at different points in time. A maximum variation sample of adults diagnosed with PIFS according to the international 1994 criteria was recruited from a cohort of persons diagnosed with PIFS at a tertiary Neurology Outpatient Clinic in Western Norway. The sample comprised 19 women and seven men (mean age 41 years, range 26-59). The interviews were fully transcribed and subjected to a qualitative content analysis.

RESULTS: All participants had been living healthy lives pre-illness. The time to develop PIFS varied. Multiple disabilities in the physical, cognitive, emotional, neurological, sleep and intolerance domains were described. Everyone more or less dropped out from studies or work, and few needed to be taken care of during the worst period. The severity of these disabilities varied among the participants and during the illness phases. Despite individual variations, an overall pattern of illness trajectory emerged. Five phases were identified: prodromal, downward, turning, upward and chronic phase. All reached a nadir followed by varying degrees of improvement in their functional ability. None regained pre-illness health or personal and professional abilities.

CONCLUSIONS: The needs of persons with this condition are not met. Early diagnosis and interdisciplinary rehabilitation could be beneficial in altering the downward trajectory at an earlier stage, avoiding the most severe disability and optimising improvement. Enhanced knowledge among health professionals, tailored treatment, rest as needed, financial support and practical help would likely improve prognosis.

 

Source: Stormorken E, Jason LA, Kirkevold M. From good health to illness with post-infectious fatigue syndrome: a qualitative study of adults’ experiences of the illness trajectory. BMC Fam Pract. 2017 Mar 27;18(1):49. doi: 10.1186/s12875-017-0614-4. https://bmcfampract.biomedcentral.com/articles/10.1186/s12875-017-0614-4 (Full article)

 

Issues in Estimating Rates of Pediatric Chronic Fatigue Syndrome and Myalgic Encephalomyelitis in a Community-based Sample

Abstract:

There is a need to examine the prevalence of pediatric chronic fatigue syndrome (CFS) and Myalgic Encephalomyelitis (ME) in the general community, as well as the relative frequency of CFS and ME among various groups (e.g., different age groups, genders, racial/ethnic groups, and socioeconomic strata) and to compare these individuals with community controls.

In the present study, we describe an ongoing NIH-funded study, which uses a multiple-stage design, beginning with a brief screening for CFS- and ME-like symptomatology, followed by a more rigorous medical and psychiatric diagnostic evaluation to determine the prevalence of pediatric CFS and ME status in the general community. We provide two case studies showing the types of data we are collecting, and how the data are being used to inform diagnostic decisions.

 

Source: Jason LA, Katz BZ, Mears C, Jantke R, Brown A, Sunnquist M, O’Connor K. Issues in Estimating Rates of Pediatric Chronic Fatigue Syndrome and Myalgic Encephalomyelitis in a Community-based Sample. Avicenna J Neuropsychophysiol. 2015 Nov;2(4). pii: e37281. doi: 10.17795/ajnpp-37281. Epub 2015 Nov 21. https://www.ncbi.nlm.nih.gov/pubmed/28261672

 

Clinical criteria versus a possible research case definition in chronic fatigue syndrome/myalgic encephalomyelitis

Abstract:

Background: The Institute of Medicine (IOM) recently developed clinical criteria for what had been known as chronic fatigue syndrome. Given the broad nature of the clinical IOM criteria, there is a need for a research definition that would select a more homogenous and impaired group of patients than the IOM clinical criteria. At the present time, it is unclear what will serve as the research definition.

Purpose: The current study focused on a research definition which selected homebound individuals who met the four IOM criteria, excluding medical and psychiatric co-morbidities.

Methods: Our research criteria were compared to those participants meeting the IOM criteria. Those not meeting either of these criteria sets were placed in a separate group defined by six or more months of fatigue. Data analyzed were from the DePaul Symptom Questionnaire and the 36-item Short-Form Health Survey (SF-36). Due to unequal sample sizes and variances, Welch’s F tests and Games-Howell post-hoc tests were conducted.

Results: Using a large database of over 1000 patients from several countries, we found that those meeting a more restrictive research definition were even more impaired and more symptomatic than those meeting criteria for the other two groups.

Conclusion: Deciding on a particular research case definition would allow researchers to select more comparable patient samples across settings, and this would represent one of the most significant methodologic advances for this field of study.

 

Source: Leonard A. Jason, Stephanie McManimen, Madison Sunnquist, Julia L. Newton & Elin Bolle Strand. Clinical criteria versus a possible research case definition in chronic fatigue syndrome/myalgic encephalomyelitis. Fatigue: Biomedicine, Health & Behavior. Published online: 06 Mar 2017