Tag: Jason

Joint Flexibility and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome After Mononucleosis

Abstract:

Purpose: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic disease characterized by substantial fatigue, postexertional malaise, unrefreshing sleep, and orthostatic intolerance, among other symptoms. Specific risk factors for the development of ME/CFS have not been adequately characterized. It has been suggested that ME/CFS is a connective tissue disorder and that joint hyperflexibility is a risk factor for the development of ME/CFS.

Methods: The goal of this study was to examine whether joint hyperflexibility is a risk factor for the development of ME/CFS after infectious mononucleosis (IM). This study was part of a prospective cohort study. College students were studied for the development of IM and were followed up for the development of ME/CFS 6 months later. Participants in the cohort for the present study included 53 students who met criteria for ME/CFS 6 months after IM and 66 recovered control subjects who had modified Beighton scores (a measure of joint hyperflexibility) available.

Findings: No connection was found between joint hyperflexibility and the development of ME/CFS after IM. Differences in joint hyperflexibility (as measured by using the modified Beighton score) in the ME/CFS group and the control group were not statistically significant. Female subjects had significantly higher Beighton scores compared with male subjects.

Implication: After IM, no relationship was found between joint hyperflexibility and the development of ME/CFS.

Source: Poomkudy JT, Torres C, Jason LA, Fishbein J, Katz BZ. Joint Flexibility and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome After Mononucleosis. Clin Ther. 2024 Jan 18:S0149-2918(24)00006-7. doi: 10.1016/j.clinthera.2023.12.011. Epub ahead of print. PMID: 38242746.

How Patient Input Helped Create Culturally Sensitive Multinational Instruments Assessing Post Viral Symptoms

Our study involves collaboration/participation in order to develop culturally sensitive multinational tools for assessing post viral symptoms.

We discuss the creation of questionnaires using patient participation, and the translation of these questionnaires using international collaboration.

Patient engagement in collaboration on the creation and use of these types of instruments is of particular importance for patients who historically have not been true partners in collaborative efforts to understand diseases.

This has occurred for those with the post-viral illness called Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), which has generated considerable resentment and estrangement among the patient community.

Our article reviews:

1) why participation of diverse groups/patients is important in the development of instruments to measure key symptoms of ME/CFS,

2) why the ME/CFS group of patients needs to be included specifically (as an example),

and

3) why structured health questionnaires are important/useful.

Our article also has an overall aim of demonstrating collaborative efforts with patients and others on creating multinational scales.

We provide examples of participatory processes used in developing and translating patient-driven instruments so that they can be used in non-English speaking countries.

Our article illustrates how patients and international researchers can be involved in efforts to develop and translate international assessment instruments to validly capture domains of unexplained illness like ME/CFS.

With the onset of another post-viral illness, Long COVID, there is a world-wide need to create valid and culturally sensitive assessment instruments to measure critical symptoms, many of which are similar to ME/CFS.

Source: Leonard A. Jason and Joseph A. Dorri. How Patient Input Helped Create Culturally Sensitive Multinational Instruments Assessing Post Viral Symptoms. The Australian Community Psychologist., Volume 32 No 1  https://psychology.org.au/getmedia/c300a432-c7fd-4f97-9322-ce16429067e4/ac-vol-32(1)-2023-final-draft.pdf#page=63 (Full text)

Why the Psychosomatic View on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Is Inconsistent with Current Evidence and Harmful to Patients

Abstract:

Since 1969, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) has been classified as a neurological disease in the International Classification of Diseases by the World Health Organization. Although numerous studies over time have uncovered organic abnormalities in patients with ME/CFS, and the majority of researchers to date classify the disease as organic, many physicians still believe that ME/CFS is a psychosomatic illness.
In this article, we show how detrimental this belief is to the care and well-being of affected patients and, as a consequence, how important the education of physicians and the public is to stop misdiagnosis, mistreatment, and stigmatization on the grounds of incorrect psychosomatic attributions about the etiology and clinical course of ME/CFS.
Source: Thoma M, Froehlich L, Hattesohl DBR, Quante S, Jason LA, Scheibenbogen C. Why the Psychosomatic View on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Is Inconsistent with Current Evidence and Harmful to Patients. Medicina. 2024; 60(1):83. https://doi.org/10.3390/medicina60010083 https://www.mdpi.com/1648-9144/60/1/83 (Full text)

Assessing symptoms of long/post COVID and chronic fatigue syndrome using the DePaul symptom questionnaire-2: a validation in a German-speaking population

Abstract:

Objective: A subset of Covid-19 survivors will develop persisting health sequelae (i.e. Long Covid/LC or Post Covid/PC) similar to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). In the absence of a reliable biomarker to diagnose LC/PC and ME/CFS, their classification based on symptoms becomes indispensable. Hence, we translated and validated the DePaul Symptom Questionnaire−2 (DSQ-2), to offer a screening tool for the German-speaking population.

Methods: A sample of healthy adults, and adults with ME/CFS and LC/PC (N = 502) completed a reduced-item version of the DSQ-2 and SF-36 questionnaire online. We performed an exploratory factor analysis, assessed construct validity, diagnostic accuracy and compared the symptom profiles of individuals with ME/CFS versus LC/PC versus healthy adults.

Results: Exploratory factor analysis revealed a 10-factor solution with excellent internal consistencies. The sensitivity of the DSQ-2 was excellent. The specificity was moderate with moderate inter-rater reliability. Construct validity of the DSQ-2 was supported by strong negative correlations with physical health subscales of the SF-36. A visual comparison of the symptom profiles of individuals with ME/CFS versus LC/PC revealed a comparable pattern.

Conclusion: Despite lower symptom severity, individuals with LC/PC reported significantly stronger limitations in general health and physical functioning and were more likely to meet ME/CFS diagnostic criteria with ongoing sickness duration, suggesting that ME/CFS can be considered a long-term sequela of LC/PC. This study offers a translated and validated version of the reduced-item DSQ-2 that can guide medical evaluation and aid physicians in identifying a ME/CFS-like subtype of LC/PC.

Source: Nina Buntić, Leonard A. Jason, Jochen Schneider, Marc Schlesser & André Schulz (2023) Assessing symptoms of long/post COVID and chronic fatigue syndrome using the DePaul symptom questionnaire-2: a validation in a German-speaking population, Fatigue: Biomedicine, Health & Behavior, DOI: 10.1080/21641846.2023.2295419 https://www.tandfonline.com/doi/full/10.1080/21641846.2023.2295419 (Full text)

Predicting Myalgic Encephalomyelitis/Chronic Fatigue Syndrome from Early Symptoms of COVID-19 Infection

Abstract:

It is still unclear why certain individuals after viral infections continue to have severe symptoms. We investigated if predicting myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) development after contracting COVID-19 is possible by analyzing symptoms from the first two weeks of COVID-19 infection.
Using participant responses to the 54-item DePaul Symptom Questionnaire, we built predictive models based on a random forest algorithm using the participants’ symptoms from the initial weeks of COVID-19 infection to predict if the participants would go on to meet the criteria for ME/CFS approximately 6 months later.
Early symptoms, particularly those assessing post-exertional malaise, did predict the development of ME/CFS, reaching an accuracy of 94.6%. We then investigated a minimal set of eight symptom features that could accurately predict ME/CFS. The feature reduced models reached an accuracy of 93.5%. Our findings indicated that several IOM diagnostic criteria for ME/CFS occurring during the initial weeks after COVID-19 infection predicted Long COVID and the diagnosis of ME/CFS after 6 months.
Source: Hua C, Schwabe J, Jason LA, Furst J, Raicu D. Predicting Myalgic Encephalomyelitis/Chronic Fatigue Syndrome from Early Symptoms of COVID-19 Infection. Psych. 2023; 5(4):1101-1108. https://doi.org/10.3390/psych5040073 https://www.mdpi.com/2624-8611/5/4/73

What Long COVID investigators can learn from four decades of ME/CFS research

Abstract:

Four decades of research in the field of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) have yielded lessons that may be instructive for those devising criteria to better comprehend Post-Acute Sequelae of SARS CoV-2 Infection (PASC) and Long COVID.

For instance, substantial effort has been devoted to defining classification systems, operationalizing methods, and developing instruments with adequate reliability and validity in the ME/CFS field.

The current article provides guidelines for developing a case definition for Long COVID and discusses the significance of psychometric issues and criterion variance, including how to specify symptoms, develop thresholds, subtypes, and exclusionary conditions. ME/CFS research could enhance our knowledge of Long COVID pathophysiology, early diagnosis, prognosis, and the identification of effective treatments.

Source: Leonard A. Jason, Benjamin H. Natelson, Hector Bonilla, Zaki A. Sherif, Suzanne D. Vernon, Monica Verduzco Gutierrez, Lisa O’Brien, Emily Taylor. What Long COVID investigators can learn from four decades of ME/CFS research. Brain Behavior and Immunity Integrative, Volume 4, 2023, 100022. https://www.sciencedirect.com/science/article/pii/S2949834123000211 (Full text)

Developing and validating a brief screening scale for ME/CFS

Abstract:

Objective: The purpose of the current study was to develop and evaluate a brief screening instrument for ME/CFS. The current study identified 4 symptom items that identify those positive for the IOM ME/CFS case definition.

Study Design: A data set of over 2,000 patients with Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and over 350 controls were assessed for the 4-item DePaul Symptom Questionnaire-Brief (DSQ-Brief). All respondents also completed the longer 54-item DePaul Symptom Questionnaire (DSQ-1) as well as the 14-item DePaul Symptom Questionnaire-Short Form (DSQ-SF). These data sets were collected from multiple countries.

We also examined the DSQ-Brief, DSQ-1, and DSQ-SF with other chronic illness groups [Multiple Sclerosis (MS) and Post-Polio Syndrome (PPS)] and those with Long COVID. Random Forest comparisons were employed in these analyses.

Results: When contrasting ME/CFS from controls, high levels of accuracy occurred using the DSQ-1, DSQ-SF, and DSQ-Brief. High accuracy again occurred for differentiating those with ME/CFS from MS, PPS, and Long COVID using the DSQ-1 and DSQ-SF, but accuracy was less for the DSQ-Brief.

Conclusions: The DSQ-Brief had high sensitivity, meaning it could identify those with ME/CFS versus controls, whereas accuracy dropped with other chronic illnesses. However, it was possible to achieve better accuracy and identify those cases where misidentification occurred by administering the DSQ-SF or DSQ-1 following the DSQ-Brief. It is now possible to screen individuals for ME/CFS using the DSQ-Brief and in so doing, identify those who are most likely to have ME/CFS.

Source: Leonard A. Jason, Sage Benner, Jacob Furst & Paul Cathey (2023) Developing and validating a brief screening scale for ME/CFS, Fatigue: Biomedicine, Health & Behavior, 11:2-4, 176-187, DOI: 10.1080/21641846.2023.2252613 https://www.tandfonline.com/doi/abs/10.1080/21641846.2023.2252613

Assessing health state utilities for people with myalgic encephalomyelitis/chronic fatigue syndrome in Australia using the EQ-5D-5L, AQoL-8D and EQ-5D-5L-psychosocial instruments

Abstract:

Purpose: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic condition with a constellation of symptoms presenting as severe and profound fatigue of ≥ 6 months not relieved by rest. ME/CFS affects health-related quality of life (HRQoL), which can be measured using multi-attribute health state utility (HSU) instruments. The aims of this study were to quantify HSUs for people living with ME/CFS, and to identify an instrument that is preferentially sensitive for ME/CFS.

Methods: Cross-sectional national survey of people with ME/CFS using the AQoL-8D and EQ-5D-5L. Additional questions from the AQoL-8D were used as ‘bolt-ons’ to the EQ-5D-5L (i.e., EQ-5D-5L-Psychosocial). Disability and fatigue severity were assessed using the De Paul Symptom Questionnaire-Short Form (DSQ-SF). HSUs were generated using Australian tariffs. Mean HSUs were stratified for sociodemographic and clinical factors. Bland-Altman plots were used to compare the three HSU instruments.

Results: For the 198 participants, mean HSUs (95% confidence intervals) were EQ-5D-5L: 0.46 (0.42-0.50); AQoL-8D: 0.43 (0.41-0.45); EQ-5D-5L-Psychosocial: 0.44 (0.42-0.46). HSUs were substantially lower than population norms: EQ-5D-5L: 0.89; AQoL-8D: 0.77. As disability and fatigue severity increased, HSUs decreased in all three instruments. Bland-Altman plots revealed interchangeability between the AQoL-8D and EQ-5D-5LPsychosocial. Floor and ceiling effects of 13.5% and 2.5% respectively were observed for the EQ-5D-5L instrument only.

Conclusions: ME/CFS has a profound impact on HRQoL. The AQoL-8D and EQ-5D-5L-Psychosocial can be used interchangeably: the latter represents a reduced participant burden.

Source: Orji NC, Cox IA, Jason LA, Chen G, Zhao T, Rogerson MJ, Kelly RM, Wills K, Hensher M, Palmer AJ, de Graaff B, Campbell JA. Assessing health state utilities for people with myalgic encephalomyelitis/chronic fatigue syndrome in Australia using the EQ-5D-5L, AQoL-8D and EQ-5D-5L-psychosocial instruments. Qual Life Res. 2023 Aug 10. doi: 10.1007/s11136-023-03498-8. Epub ahead of print. PMID: 37561337. https://link.springer.com/article/10.1007/s11136-023-03498-8 (Full text)

Comparing Frequency and Severity Ratings for ME/CFS versus Controls

Abstract:

Most questionnaires for somatic symptoms focus on occurrence, frequency, or severity, and in doing so, they might not be able to comprehensively assess the burden that symptoms present to patients. For example, a symptom might occur at a high frequency but only a minimal severity, so that it is less likely to be a burden on a patient; whereas a symptom that has both a high frequency and severity is more likely to be negatively impacting a patient.
Study 1 examined frequency and severity scores for classic Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) symptoms among patients with ME/CFS versus a control group. Findings in Study 1 indicate there were more frequency/severity discrepancies for individuals with ME/CFS versus the control group. Study 1 concluded that collecting data on both measures of symptom burden provides unique indicators that can better assess the burden of the symptoms on patients.
In a separate data set, Study 2 reported reliability data on slight differences in the time period and the way the severity was assessed. Study 2 findings indicated high levels of reliability for these changes in the time period and the way questions were asked. These studies provide important psychometric properties that could lead to more reliable and valid assessments of patients with post-viral illnesses.
Source: Jason LA, Benner S, Hansel N. Comparing Frequency and Severity Ratings for ME/CFS versus Controls. Psych. 2023; 5(3):662-669. https://doi.org/10.3390/psych5030042 https://www.mdpi.com/2624-8611/5/3/42 (Full text)

Alcohol intolerance and myalgic encephalomyelitis/chronic fatigue syndrome

Abstract:

BACKGROUND: The literature is mixed about the occurrence of alcohol intolerance among patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Surveys that asked respondents with ME/CFS whether they experienced alcohol intolerance within a recent time frame might produce inaccurate results because respondents may indicate that the symptom was not present if they avoid alcohol due to alcohol intolerance.

AIM: To overcome this methodologic problem, participants in the current study were asked whether they have avoided alcohol in the past 6 mo, and if they had, how severe their alcohol intolerance would be if they were to drink alcohol.

METHODS: The instrument used was a validated scale called the DePaul symptom questionnaire. Independent t-tests were performed among the alcohol intolerant or not alcohol intolerant group. The alcohol intolerant group had 208 participants, and the not alcohol intolerant group had 96 participants.

RESULTS: Using specially designed questions to properly identify those with alcohol intolerance, those who experienced alcohol intolerance vs those who did not experience alcohol intolerance experienced more frequent/severe symptoms and domains. In addition, using a multiple regression analysis, the orthostatic intolerance symptom domain was related to alcohol intolerance.

CONCLUSION: The findings from the current study indicated that those with ME/CFS are more likely to experience alcohol intolerance. In addition, those with this symptom have more overall symptoms than those without alcohol intolerance.

Source: Maciuch J, Jason LA. Alcohol intolerance and myalgic encephalomyelitis/chronic fatigue syndrome. World J Neurol 2023; 9(3): 17-27 [DOI: 10.5316/wjn.v9.i3.17] https://www.wjgnet.com/2218-6212/full/v9/i3/17.htm (Full text)