2019 – Page 16 – American ME and CFS Society

Acceptance and identity change: An interpretative phenomenological analysis of carers’ experiences in myalgic encephalopathy/chronic fatigue syndrome

Abstract:

Myalgic encephalopathy/chronic fatigue syndrome is a debilitating condition and many people rely heavily on family carers. This study explored the caring experiences of seven family carers. Four themes were established: relations with others, role and identity changes, coping with change and uncertainty, and information and support seeking. Caring disrupted multiple areas of carers’ lives, including their identities and relationships. Scepticism from others about myalgic encephalopathy/chronic fatigue syndrome was particularly distressing. Acceptance was important for coping and helped some carers achieve positive growth within spousal relationships. Improving support and advice for carers and acknowledging their caring burden could improve their well-being.

Source: Catchpole S, Garip G. Acceptance and identity change: An interpretative phenomenological analysis of carers’ experiences in myalgic encephalopathy/chronic fatigue syndrome. J Health Psychol. 2019 Mar 21:1359105319834678. doi: 10.1177/1359105319834678. [Epub ahead of print] https://www.ncbi.nlm.nih.gov/pubmed/30895822

Decreased Expression of the CD57 Molecule in T Lymphocytes of Patients with Chronic Fatigue Syndrome

Abstract:

The chronic fatigue syndrome (CFS) is characterized by a prolonged incapacitating fatigue, headaches, sleep disturbances, and decreases in cognition, besides alterations in other physiological functions. At present, no specific biological markers have been described in this pathology.

In the present study, we analyzed in lymphocytes the CD57 expression for the diagnosis of CFS, evaluating both the percentage of blood lymphocytes expressing CD57 and the average amount of the molecule expressed per cell. The study demonstrated a marked and significant decrease in the expression of CD57 in lymphocytes of CFS patients regarding healthy controls. In T lymphocytes, the decrease was significant both in the percentage of cells expressing CD57 (7.5 ± 1.2 vs 13.3 ± 1.6, p = 0.024) and in a more relevant way in the amount of CD57 molecule expressed per cell (331 ± 59 vs 1003 ± 104, p ≤ 0.0001). In non-T lymphocytes, the decrease was significant only in the amount of CD57 expressed per cell (379 ± 114 vs 691 ± 95, p = 0.007).

The study of CD57 antigen in blood lymphocytes is a useful marker that could cooperate in the diagnosis of CFS patients. Its decrease in T lymphocytes provides most valuable results than the results in other lymphocyte subpopulations.

Source: Espinosa P, Urra JM. Decreased Expression of the CD57 Molecule in T Lymphocytes of Patients with Chronic Fatigue Syndrome. Mol Neurobiol. 2019 Mar 21. doi: 10.1007/s12035-019-1549-7. [Epub ahead of print] https://www.ncbi.nlm.nih.gov/pubmed/30895436

Chronotropic Intolerance: An Overlooked Determinant of Symptoms and Activity Limitation in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome?

Abstract:

Post-exertional malaise (PEM) is the hallmark clinical feature of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). PEM involves a constellation of substantially disabling signs and symptoms that occur in response to physical, mental, emotional, and spiritual over-exertion. Because PEM occurs in response to over-exertion, physiological measurements obtained during standardized exertional paradigms hold promise to contribute greatly to our understanding of the cardiovascular, pulmonary, and metabolic states underlying PEM.

In turn, information from standardized exertional paradigms can inform patho-etiologic studies and analeptic management strategies in people with ME/CFS. Several studies have been published that describe physiologic responses to exercise in people with ME/CFS, using maximal cardiopulmonary testing (CPET) as a standardized physiologic stressor. In both non-disabled people and people with a wide range of health conditions, the relationship between exercise heart rate (HR) and exercise workload during maximal CPET are repeatable and demonstrate a positive linear relationship.

However, smaller or reduced increases in heart rate during CPET are consistently observed in ME/CFS. This blunted rise in heart rate is called chronotropic intolerance (CI). CI reflects an inability to appropriately increase cardiac output because of smaller than expected increases in heart rate. The purposes of this review are to (1) define CI and discuss its applications to clinical populations; (2) summarize existing data regarding heart rate responses to exercise obtained during maximal CPET in people with ME/CFS that have been published in the peer-reviewed literature through systematic review and meta-analysis; and (3) discuss how trends related to CI in ME/CFS observed in the literature should influence future patho-etiological research designs and clinical practice.

Source: Todd E. Davenport, Mary Lehnen, Staci R. Stevens, J. Mark VanNess, Jared Stevens and Christopher R. Snell. Chronotropic Intolerance: An Overlooked Determinant of Symptoms and Activity Limitation in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome? Front. Pediatr., 22 March 2019 | https://doi.org/10.3389/fped.2019.00082 https://www.frontiersin.org/articles/10.3389/fped.2019.00082/full (Full article)

Impact of Polypharmacy on Candidate Biomarker miRNomes for the Diagnosis of Fibromyalgia and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Striking Back on Treatments

Abstract:

Fibromyalgia (FM) and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) are diseases of unknown etiology presenting complex and often overlapping symptomatology. Despite promising advances on the study of miRNomes of these diseases, no validated molecular diagnostic biomarker yet exists. Since FM and ME/CFS patient treatments commonly include polypharmacy, it is of concern that biomarker miRNAs are masked by drug interactions.

Aiming at discriminating between drug-effects and true disease-associated differential miRNA expression, we evaluated the potential impact of commonly prescribed drugs on disease miRNomes, as reported by the literature. By using the web search tools SM2miR, Pharmaco-miR, and repoDB, we found a list of commonly prescribed drugs that impact FM and ME/CFS miRNomes and therefore could be interfering in the process of biomarker discovery. On another end, disease-associated miRNomes may incline a patient’s response to treatment and toxicity.

Here, we explored treatments for diseases in general that could be affected by FM and ME/CFS miRNomes, finding a long list of them, including treatments for lymphoma, a type of cancer affecting ME/CFS patients at a higher rate than healthy population. We conclude that FM and ME/CFS miRNomes could help refine pharmacogenomic/pharmacoepigenomic analysis to elevate future personalized medicine and precision medicine programs in the clinic.

Source: Almenar-Pérez E, Sánchez-Fito T, Ovejero T, Nathanson L, Oltra E. Impact of Polypharmacy on Candidate Biomarker miRNomes for the Diagnosis of Fibromyalgia and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Striking Back on Treatments. Pharmaceutics. 2019 Mar 18;11(3). pii: E126. doi: 10.3390/pharmaceutics11030126. https://www.mdpi.com/1999-4923/11/3/126 (Full article)

FOOD, CLOTHING, AND SHELTER: DELIVERING THE BASICS TO PEOPLE WITH ME/CFS

By Erica Verrillo

Erica Verrillo is President of the American ME and CFS Society (AMMES)

When I was a child, my mother taught me the three basics of human survival: Food, clothing, and shelter. These, she said, are essential for our existence. At the time, I understood food to be essential, and possibly shelter, but I did not see the necessity for clothing. (I do now.)

Getting medical help is a priority for people who are ill. This makes perfect sense in the context of a debilitating disease like myalgic encephalomyelitis, aka chronic fatigue syndrome (ME/CFS). Everyone with a chronic illness wants to recover. But people who are so impoverished that they can’t afford food, clothing, and shelter face a struggle for survival on a daily basis. That struggle can overshadow all others – including the search for physicians and treatments – while patients scramble for their basic needs. The effort to stay alive is all-encompassing.

How will these patients get food to eat, pay their rent, and buy such bare essentials as shoes?

Who will help them when their options run out?

Continue reading “FOOD, CLOTHING, AND SHELTER: DELIVERING THE BASICS TO PEOPLE WITH ME/CFS” →

Artificial intelligence based discovery of the association between depression and chronic fatigue syndrome

Abstract:

BACKGROUND: Both of the modern medicine and the traditional Chinese medicine classify depressive disorder (DD) and chronic fatigue syndrome (CFS) to one type of disease. Unveiling the association between depressive and the fatigue diseases provides a great opportunity to bridge the modern medicine with the traditional Chinese medicine.

METHODS: In this work, 295 general participants were recruited to complete Zung Self-Rating Depression Scales and Chalder Fatigue Scales, and meanwhile, to donate plasma and urine samples for 1H NMR-metabolic profiling. Artificial intelligence methods was used to analysis the underlying association between DD and CFS. Principal components analysis (PCA) and partial least squares discriminant analysis (PLS-DA) were used to analyze the metabolic profiles with respect to gender and age. Variable importance in projection and t-test were employed in conjunction with the PLS-DA models to identify the metabolite biomarkers. Considering the asymmetry and complexity of the data, convolutional neural networks (CNN) model, an artificial intelligence method, was built to analyze the data characteristics between each groups.

RESULTS: The results showed the gender- and age-related differences for the candidate biomarkers of the DD and the CFS diseases, and indicated the same and different biomarkers of the two diseases. PCA analysis for the data characteristics reflected that DD and CFS was separated completely in plasma metabolite. However, DD and CFS was merged into one group.

LIMITATION: Lack of transcriptomic analysis limits the understanding of the association of the DD and the CFS diseases on gene level.

CONCLUSION: The unmasked candidate biomarkers provide reliable evidence to explore the commonality and differences of the depressive and the fatigue diseases, and thereby, bridge over the traditional Chinese medicine with the modern medicine.

Source: Zhang F, Wu C, Jia C, Gao K, Wang J, Zhao H, Wang W, Chen J. Artificial intelligence based discovery of the association between depression and chronic fatigue syndrome. J Affect Disord. 2019 Mar 8;250:380-390. doi: 10.1016/j.jad.2019.03.011. [Epub ahead of print]

Associations Between Autonomic and Orthostatic Self-report and Physician Ratings of Orthostatic Intolerance in Youth

Abstract:

PURPOSE: There is no known biological marker or physical assessment to diagnose chronic fatigue syndrome (CFS), leaving physicians to heavily rely on self-report measures regarding the symptoms associated with CFS. Common symptoms of CFS include difficulty sleeping, joint pain, headaches, sore throat, cognitive dysfunction, physical exhaustion, dizziness, and nausea. Because of the overlap among CFS symptoms and autonomic functioning, we examined the association between 2 self-report measures of orthostatic and autonomic symptoms and a physician’s report of autonomic functioning (measures of changes in blood pressure and pulse) to further understand the association among autonomic functioning within individuals with symptoms of CFS.

METHODS: With data from an ongoing study, we used independent t tests and Pearson correlation tests to assess the association among the orthostatic domain from the DePaul Symptom Questionnaire, Autonomic Symptom Checklist composite scores, and the physician’s assessment of orthostatic intolerance obtained from a sample of 191 participants, 42 who were healthy controls.

FINDINGS: No significant demographic differences were found between the CFS-like group and the healthy controls. Results indicate a significant correlation between orthostatic and autonomic functioning (r = 0.58) and a correlation with a low effect size among autonomic functioning and physician measures of orthostatic functioning (r = -0.01 to 0.29). However, fewer correlations were found between self-reported symptoms of orthostatic functioning and the physician’s measures of orthostatic functioning.

IMPLICATIONS: These results suggest that although orthostatic dysfunction is reported in children and adolescents with CFS-like symptoms, the physical measures of autonomic functioning in this study were unable to detect these symptoms.

Source: Schultz KR, Katz BZ, Bockian NR, Jason LA. Associations Between Autonomic and Orthostatic Self-report and Physician Ratings of Orthostatic Intolerance in Youth. Clin Ther. 2019 Mar 12. pii: S0149-2918(19)30070-0. doi: 10.1016/j.clinthera.2019.02.010. [Epub ahead of print]

Diagnostic sensitivity of 2-day cardiopulmonary exercise testing in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Abstract:

BACKGROUND: There are no known objective biomarkers to assist with the diagnosis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). A small number of studies have shown that ME/CFS patients exhibit an earlier onset of ventilatory threshold (VT) on the second of two cardiopulmonary exercise tests (CPET) performed on consecutive days. However, cut-off values which could be used to differentiate between ME/CFS patients have not been established.

METHODS: 16 ME/CFS patients and 10 healthy controls underwent CPET on a cycle-ergometer on 2-consecutive days. Heart rate (HR), ventilation, ratings of perceived exertion (RPE) and work rate (WR) were assessed on both days.

RESULTS: WR at VT decreased from day 1 to day 2 and by a greater magnitude in ME/CFS patients (p < 0.01 group × time interaction). No interaction effects were found for any other parameters. ROC curve analysis of the percentage change in WR at VT revealed decreases of - 6.3% to - 9.8% provided optimal sensitivity and specificity respectively for distinguishing between patients with ME/CFS and controls.

CONCLUSION: The decrease in WR at VT of 6.3-9.8% on the 2nd day of consecutive-day CPET may represent an objective biomarker that can be used to assist with the diagnosis of ME/CFS.

Source: Nelson MJ, Buckley JD, Thomson RL, Clark D, Kwiatek R, Davison K. Diagnostic sensitivity of 2-day cardiopulmonary exercise testing in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. J Transl Med. 2019 Mar 14;17(1):80. doi: 10.1186/s12967-019-1836-0. (Full study)

Chronic Fatigue Syndrome prevalence is grossly overestimated using Oxford criteria compared to Centers for Disease Control (Fukuda) criteria in a U.S. population study

Abstract:

BACKGROUND: Results from treatment studies using the low threshold Oxford criteria for recruitment may have been overgeneralized to patients diagnosed by more stringent CFS criteria.

PURPOSE: To compare the selectivity of Oxford and Fukuda criteria in a U.S. population.

METHODS: Fukuda (Center for Disease Control (CDC)) criteria, as operationalized with the CFS Severity Questionnaire (CFSQ), were included in the nationwide rc2004 HealthStyles survey mailed to 6,175 participants who were representative of the US 2003 Census population. The 9 questionnaire items (CFS symptoms) were crafted into proxies for Oxford criteria (mild fatigue, minimal exclusions) and Fukuda criteria (fatigue plus ≥4 of 8 ancillary criteria at moderate or severe levels with exclusions). The comparative prevalence estimates of CFS were then determined. Severity scores for fatigue were plotted against the sum of severities for the 8 ancillary criteria. The 4 quadrants of scatter diagrams assessed putative healthy controls, CFS, chronic idiopathic fatigue, and CFS-like with insufficient fatigue subjects.

RESULTS: The Oxford criteria designated CFS in 25.5% of 2,004 males and 19.9% of 1,954 females. Based on quadrant analysis, 85% of Oxford-defined cases were inappropriately classified as CFS. Fukuda criteria identified CFS in 2.3% of males and 1.8% of females.

DISCUSSION: CFS prevalence using Fukuda criteria and quadrant analysis were near the upper limits of previous epidemiology studies. The CFSQ may have utility for on-line and outpatient screening. The Oxford criteria were untenable because they inappropriately selected healthy subjects with mild fatigue and chronic idiopathic fatigue and mislabeled them as CFS.

Source: Baraniuk JN. Chronic Fatigue Syndrome prevalence is grossly overestimated using Oxford criteria compared to Centers for Disease Control (Fukuda) criteria in a U.S. population study. Fatigue. 2017;5(4):215-230. doi: 10.1080/21641846.2017.1353578. Epub 2017 Jul 21. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6407870/ (Full article)

The Relationship Between Chronic Fatigue Syndrome, Burnout, Job Satisfaction, Social Support And Age Among Academics At A Tertiary Institution

Abstract:

OBJECTIVES: Over the last 20 years, tertiary institutions have been subjected to several changes. This has resulted in increased workloads for academics. Some academics have started to experience symptoms that are related to chronic fatigue syndrome and burnout. Researchers, however, cannot agree whether the 2 syndromes are two sides of the same coin or actually 2 separate constructs. This study that was conducted at a tertiary institution in South Africa therefore aimed to determine if these constructs accounted for the evidence of the same syndrome within an academic setting or if they were 2 separate, distinguishable constructs. However, since job satisfaction and social support play a role in the poor physical and psychological health experienced by individuals with chronic fatigue syndrome or burnout, it was decided to also include these 2 constructs into the investigation. Age was also incorporated because it had dissimilar relationships with burnout and chronic fatigue syndrome.

MATERIAL AND METHODS: The participants completed the following questionnaires via an online survey: The Centers for Disease Control and Prevention Chronic Fatigue Syndrome Symptom Inventory, the Oldenburg Burnout Inventory, the Overall Job Satisfaction Scale and the Social Support Scale. The data was used for constructing a structural equation model.

RESULTS: Job satisfaction was found to be a strong predictor of burnout. The number of symptoms indicative of chronic fatigue syndrome reported by the participants proved to be a relatively strong significant predictor of burnout. Age did not yield any significant relationship with any of the constructs.

CONCLUSIONS: The results indicated that chronic fatigue and burnout should be perceived as 2 distinguishable constructs in the academic context. It should be noted, however, that some overlap exists between them.

This work is available in Open Access model and licensed under a CC BY-NC 3.0 PL license.

Source: Coetzee N, Maree DJF, Smit BN. The Relationship Between Chronic Fatigue Syndrome, Burnout, Job Satisfaction, Social Support And Age Among Academics At A Tertiary Institution. Int J Occup Med Environ Health. 2019 Feb 27;32(1):75-85. doi: 10.13075/ijomeh.1896.01274. Epub 2019 Feb 20. http://ijomeh.eu/The-relationship-between-chronic-fatigue-syndrome-burnout-job-satisfaction-social,91021,0,2.html (Full article)