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.

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.

Pediatric and adult patients with ME/CFS following COVID-19: A structured approach to diagnosis using the Munich Berlin Symptom Questionnaire (MBSQ).

A subset of patients with post-COVID-19 condition (PCC) fulfill the clinical criteria of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). To establish the diagnosis of ME/CFS for clinical and research purposes, comprehensive scores have to be evaluated. We developed the Munich Berlin Symptom Questionnaires (MBSQs) and supplementary scoring sheets (SSSs) to allow for a rapid evaluation of common ME/CFS case definitions. The MBSQs were applied to young patients with chronic fatigue and post-exertional malaise (PEM) who presented to the MRI Chronic Fatigue Center for Young People (MCFC). Trials were retrospectively registered (NCT05778006, NCT05638724). Using the MBSQs and SSSs, we report on ten patients aged 11 to 25 years diagnosed with ME/CFS after asymptomatic SARS-CoV-2 infection or mild to moderate COVID-19. Results from their MBSQs and from well-established patient-reported outcome measures indicated severe impairments of daily activities and health-related quality of life.    Conclusions: ME/CFS can follow SARS-CoV-2 infection in patients younger than 18 years, rendering structured diagnostic approaches most relevant for pediatric PCC clinics. The MBSQs and SSSs represent novel diagnostic tools that can facilitate the diagnosis of ME/CFS in children, adolescents, and adults with PCC and other post-infection or post-vaccination syndromes. What is Known: • ME/CFS is a debilitating disease with increasing prevalence due to COVID-19. For diagnosis, a differential diagnostic workup is required, including the evaluation of clinical ME/CFS criteria. • ME/CFS after COVID-19 has been reported in adults but not in pediatric patients younger than 19 years. What is New: • We present the novel Munich Berlin Symptom Questionnaires (MBSQs) as diagnostic tools to assess common ME/CFS case definitions in pediatric and adult patients with post-COVID-19 condition and beyond. • Using the MBSQs, we diagnosed ten patients aged 11 to 25 years with ME/CFS after asymptomatic SARS-CoV-2 infection or mild to moderate COVID-19.

Ranking the community psychology research output of institutions and authors: A new system of evaluating the field.

There have been multiple efforts to evaluate the contributions of the field of Community Psychology, and one of the more popular methods has involved gathering citations and articles published in Community Psychology journals. In recent years, several sites have gathered citation analysis and article publication rates so that it is now relatively easy to summarize settings and scholar rankings. In the current study, articles published in the two major journals of the field of Community Psychology over the past five decades were evaluated for these publications and citations. Findings indicated that several of the settings with highest publication and citation rates have not developed Community Psychology graduate programs, thus indicating that many publishing authors are in settings without formal graduate programs in Community Psychology. The benefits and limitations of this method of ranking programs and individuals are reviewed.

Symptom-based clusters in people with ME/CFS: an illustration of clinical variety in a cross-sectional cohort.

BACKGROUND: Myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS) is a complex, heterogenous disease. It has been suggested that subgroups of people with ME/CFS exist, displaying a specific cluster of symptoms. Investigating symptom-based clusters may provide a better understanding of ME/CFS. Therefore, this study aimed to identify clusters in people with ME/CFS based on the frequency and severity of symptoms. METHODS: Members of the Dutch ME/CFS Foundation completed an online version of the DePaul Symptom Questionnaire version 2. Self-organizing maps (SOM) were used to generate symptom-based clusters using severity and frequency scores of the 79 measured symptoms. An extra dataset (n = 252) was used to assess the reproducibility of the symptom-based clusters. RESULTS: Data of 337 participants were analyzed (82% female; median (IQR) age: 55 (44-63) years). 45 clusters were identified, of which 13 clusters included ≥ 10 patients. Fatigue and PEM were reported across all of the symptom-based clusters, but the clusters were defined by a distinct pattern of symptom severity and frequency, as well as differences in clinical characteristics. 11% of the patients could not be classified into one of the 13 largest clusters. Applying the trained SOM to validation sample, resulted in a similar symptom pattern compared the Dutch dataset. CONCLUSION: This study demonstrated that in ME/CFS there are subgroups of patients displaying a similar pattern of symptoms. These symptom-based clusters were confirmed in an independent ME/CFS sample. Classification of ME/CFS patients according to severity and symptom patterns might be useful to develop tailored treatment options.

Social Support Coping for African American Adolescents: Effect of a Culturally Grounded Randomized Controlled Trial Intervention.

The effect of the Adapted-Coping with Stress (A-CWS) intervention on social support coping was examined, using a randomized controlled trial design. The participants were 410 ninth-grade students (ages 14 to 16 years and mostly African American) living in low-resourced neighborhoods. Participants were randomly assigned 1:1 to either the A-CWS intervention or a standard care control condition. All participants were assessed at their schools before implementation of the intervention, at intervention completion, and again at 6- and 12-month post-intervention. Engagement in social support coping was examined in both intention-to-treat and treatment-as-received samples (i.e., intervention participants who attended at least 12 A-CWS treatment sessions and participants in the standard care control condition), using latent growth models. In intention-to-treat analyses, no significant treatment effects were identified. In treatment-as-received analyses, results revealed a significant association between social support coping and treatment condition; levels of social support coping decreased over time in the control condition, but they remained relatively stable in the treatment condition. The results indicate adequate intervention adherence and efficacy of the A-CWS to sustain social support coping within a sample of youth at high risk for stress exposure and associated disorders.Clinical Trial Registration: clinicaltrials.gov identifier: NCT0395445.

The Involvement in Alcoholics Anonymous Scale - Short Form: Factor Structure & Validation.

Background: The aim of this research was to examine the psychometrics of a short form version of the multidimensional Involvement in Alcoholics Anonymous scale (IAA-SF) by assessing the factor structure, internal consistency, and predictive validity. While there are several existing measures of involvement in Alcoholics Anonymous, many are either unidimensional or are limited in their ability to gather variation in the level of involvement in the different dimensions of 12-step programs. Objective: To achieve our aim, we used exploratory and principal axis factor analysis, correlation, and logistic regression with two unique and diverse samples. Longitudinal data were collected from a northern Illinois sample of 110 post-treatment adults, and cross-sectional data were from a random sample of 296 recovery home residents in the United States. Results: Results from the first sample suggested three exploratory factors (Principles Involvement, Social Involvement, and Spiritual Involvement) that were concordant with the proposed conceptualization and were then confirmed in the second sample. A 2nd order factor of global involvement was also found. All subscales demonstrated good to excellent internal consistency and were moderately associated with AA affiliation. Global and social involvement predicted greater odds of abstinence 2 years later, but principles and spiritual involvement did not. Conclusion: Overall results suggest the IAA- SF is a valid and reliable 12-item instrument for assessing involvement in the AA program, and the differential prediction suggests potential utility for a multidimensional approach to 12-step involvement.

Risk factors for suicidal ideation in a chronic illness.

Suicide is an urgent concern for people with chronic illnesses, particularly for those with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Prior work has examined suicide risk in this illness, but few studies have examined specific risk factors. This study uses binary logistic regression to identify physical, social, and demographic risk and protective factors for suicidal ideation in ME/CFS (N = 559). The results indicate sleep-related symptoms, stigma, disability status, physical functioning, and marital status as risk factors for suicidal ideation in this group. These findings highlight the importance of education, de-stigmatization, and the search for effective disease-modifying treatments for ME/CFS.

Longitudinal patterns and predictors of suicidal ideation in African American adolescents.

Suicide rates among African American adolescents have increased dramatically. Suicidal ideation is associated with both suicide attempts and completions, thus understanding ideation patterns and predictors in African American adolescents is critical to informing prevention efforts. This study recruited 160 African American ninth grade students. Participants were those students randomized to the control condition of a randomized controlled preventive intervention. Of the 160 participants, 99 completed all assessment points and were included in latent transition analyses. We assessed participants four times: baseline then again at 6-, 12-, and 18-month postbaseline. Constructs of interest for this study included suicidal ideation, depression, hopelessness, and community violence exposure. A 2-class model (i.e., low ideation [LI] and high ideation [HI]) characterized ideation at each time point. A total of 86%-90% of participants were in the LI class in any given time point and 27.3% of participants were in the HI class at least once. Participants in the LI class tended to stay in that class, whereas those in the HI class often transitioned to the LI group. Depression and hopelessness, but not exposure to community violence, predicted HI class membership. Findings suggest that (a) most African American adolescents may experience suicide ideation at some point in time, (b) a concerning proportion of African American adolescents may experience high ideation, (c) high ideation is often time-limited, and (d) depression and hopelessness predict high ideation.

Lived experiences of Oxford House residents prescribed medication-assisted treatment.

Qualitative studies have examined the recovery experiences of individuals prescribed medication-assisted treatment (MAT), including their experiences within treatment facilities. However, the literature lacks qualitative studies exploring the recovery process of individuals prescribed MAT while living in recovery housing, such as Oxford House (OH). The purpose of this study was to explore how OH residents, who are prescribed MAT, make sense of recovery. The fact that OHs are drug-free recovery housing is what makes the issue of using MATs potentially contentious in these settings. Interpretative phenomenological analysis (IPA) was used to document the lived experiences of individuals prescribed MAT in OH. The sample included: five women and three men, prescribed either methadone or Suboxone, that were living in an OH in the United States. Participants were interviewed on four topics: their recovery process, their transition to OH, and their experience living in and outside of an OH. Analysis of results followed the recommendations for IPA from Smith, Flowers, and Larkin. Four general themes emerged from the data: Recovery Process, Managing Logistics of MAT Utilization, Personal Development, and Familial Values. In conclusion, individuals prescribed MAT did benefit from living in an OH to manage their recovery as well as stay compliant with their medication.

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

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.

Latent profile analysis in recovery homes: A single quantitative dimension captures most but not all of the important details of the recovery process.

Background: Our study explored whether latent classes adequately represented the social capital recovery indicators at the resident level and whether latent class membership predicted subsequent exits from the recovery homes. Method: Our sample included about 600 residents in 42 recovery homes. Over a 2-year period of time, every 4 months, data were collected on eight elements of recovery capital. Results: We found 5 latent classes were optimal for representing 8 elements of recovery capital. Representing 79% of the sample, 3 of the 5 latent class profiles of the means of the 8 recovery indicators were roughly parallel and differed only in level, but the remaining 2 latent class profiles, representing 21% of the sample, were not parallel to the first 3, suggesting that a single quantitative dimension of perceived recovery may capture most but not all of the important details of the recovery process. Next, using longitudinal data from homes, the distal outcomes of resident eviction and voluntary exit were found to be related to latent class membership. Resident level pre-existing predictors (e.g., employment status, educational attainment, gender, Latinx ethnicity) and house level pre-existing predictors (e.g., financial health, poverty level of typical population served, new resident acceptance rate) significantly discriminated the classes. In a model that combined both pre-existing predictors and distal outcomes, latent class membership was still the strongest predictor of evictions controlling for the pre-existing predictors. Conclusions: These classes help to clarify the different aspects of the recovery latent score, and point to classes that have different ethnic and gender characteristics as well as outcomes in the recovery homes. For example, the high levels of self-confidence found in class 3 suggest that Latinx might be at higher risk for having some difficulties within these recovery communities.

Risk factors for suicide in chronic fatigue syndrome.

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) includes symptoms such as post-exertional malaise, unrefreshing sleep, and cognitive impairments. Several studies suggest these patients have an increased risk of suicidal ideation and early mortality, although few have published in this area. This study explores risk factors for suicide among 64 individuals with ME/CFS using archival data, 17 of which died from suicide. Results indicated an increased risk of suicide for those for those utilizing the label CFS, for those with limited overall functioning, and for those without comorbid illnesses. Findings suggest that stigma and functional impairments limit access to care and social supports.

An Examination of Psychiatric Severity and Social Cohesion Outcomes within Oxford Houses.

It is estimated that nearly 20 million adults in the United States have a substance use disorder (SUD), and 8.4 million of those adults have a comorbid mental disorder. Roughly half of those adults with a SUD and a psychiatric comorbidity fail to receive adequate treatment for either the SUD or the mental disorder (combined or separately). However, this sub-population has shown positive treatment outcomes (e.g., improved quality of life and increased length of stay in a recovery home) when allotted the proper resources to treat the overlapping symptomologies associated with their multiple diagnoses. Many individuals with SUD and psychiatric comorbidity receive community-based support from recovery residences, a ubiquitous form of aftercare treatment in the United States. The aim of the present study was to investigate the relationship between psychiatric severity index scores (a proxy for psychiatric comorbidity that measures social functioning, impairment, symptoms, and behavior), length of stay in Oxford Houses (OHs), and quality of life. The present study found a significant negative relationship between length of stay and psychiatric severity scores, and between psychiatric severity scores and quality of life scores. Psychiatric severity was observed to predict decreased quality of life, while length of stay predicted decreased psychiatric severity. Psychiatric severity mediated the relationship between length of stay and quality of life based on house composition.

Journey to wellness: A socioecological analysis of veterans in recovery from substance use disorders.

Substance use disorders are increasingly prevalent among veterans in the United States. Veterans in recovery face unique challenges, such as high rates of psychiatric comorbidities, difficulties adjusting to civilian life, and inadequate housing and mental health services. While prior research has explored veterans' experiences in recovery, studies have not implemented a multilevel perspective in their analyses. The current qualitative study examined how individual veteran experiences intersect with interpersonal and systemic factors. Semistructured focus groups were conducted with veterans who were former or current residents of recovery homes (N = 20). Thematic analysis was utilized to explore veterans' personal experiences through the CHIME-D framework (connectedness, hope & optimism, identity, meaning in life, empowerment, and difficulties). The data were further analyzed within a socioecological model (intrapersonal, interpersonal, and community). Each component of the CHIME-D framework was salient across all focus groups, with connectedness, empowerment, and difficulties being the most prominent themes that occurred across all socioecological levels. Results suggest that recovery initiatives can effectively assist veterans by promoting empowerment, facilitating social connections, and addressing cooccurring difficulties across multiple socioecological contexts. Additionally, treatment programs should encourage veterans to take on meaningful roles in their communities. Future research should continue to explore veterans' recovery experiences using a socioecological model.

Using Systems Theory to Improve Intervention Outcomes.

This article explores the potential of using systems methods for better conceptualizing the unexpected and complex sets of hurdles and opportunities that practicing psychologists frequently encounter. Examples are provided involving two distinct types of important clinical issues: 1) understanding how individuals maintain recovery from substance use disorders following treatment and 2) better understanding patients with chronic, unexplained post-viral illnesses. Traditional research methods used to explore these types of intricate social and medical issues have often lacked sophisticated dynamic systems-based perspectives, which could provide new insights into understanding how patient treatment gains can be maintained and how unexplained post-viral illnesses can be better understood. Our examples will demonstrate that systems-oriented approaches have the potential to provide psychologists unique opportunities to capture a fuller and richer depiction of a variety of clinical and community topics and thus provide new lenses that ultimately could provide better care for our patients.

Social integration in recovery living environments: A dynamic network approach.

Oxford Houses (OHs) are a large network of self-run community-based settings for individuals with substance use disorders. This present study explored a model based on conceptualizing recovery home social systems as dynamic multirelational (multiplex) social networks. The model is developed from data obtained from 42 OH recovery homes in three parts of the US, addressing whole networks of friendship, close friendship, and willingness to loan money. Findings indicated that close friend and loan relationships mutually reinforced each other over time as they coevolved. These types of insights can help community psychologists to better understand complex network dynamics in community-based settings.

Understanding recovery Capital in relation to categorical 12-Step involvement and abstinence social support.

Background: Although recovery capital represents various resources for persons recovering from substance use disorders, measures of this construct examine components that might not necessarily reflect the recovery goals of individuals who base their recovery through involvement in 12-step groups such as Alcoholics Anonymous (AA) and Narcotics Anonymous (NA). It is not clear whether 12-step involvement is related to recovery capital, particularly among individuals living in recovery homes who utilize social networks of recovering peers for their recovery. Thus, categorical involvement in a set of 12-step activities was examined in relation to recovery capital and abstinence social support. Methods: Differences in terms of general (recovery capital scores, retention rates) and abstinence-specific (abstinence social support) resources were examined in relation to recovery home residents who were (n = 395) and were not (n = 232) categorically involved in their 12-step recovery. Results: Residents with categorical 12-step involvement reported significantly higher levels of recovery capital and abstinence social support, and there was no significant difference observed in retention rates between residents who were/were not categorically involved in 12-step groups. Conclusions: Findings suggest community resources such as recovery homes and categorical involvement in 12-step groups are important recovery capital components that help individuals who use a 12-step approach to their recovery. Recovery capital among those involved with 12-step fellowships such as AA and NA should be assessed by examining abstinence-specific components such as representative involvement in 12-step groups and social support that is abstinence-specific.

Dynamic Interdependence of Advice Seeking, Loaning, and Recovery Characteristics in Recovery Homes.

Recovery homes in the US provide stable housing for over 200,000 individuals with past histories of homelessness, psychiatric co-morbidity and criminal justice involvement. We need to know more about how these settings help those remain in recovery. Our study measured advice seeking and willingness-to-loan relationships and operationalized them as a dynamic multiplex social network-multiple, simultaneous interdependent relationships--that exist within 42 Oxford House recovery homes over time. By pooling relationship dynamics across recovery houses, a Stochastic Actor-Oriented Modeling (SAOM) framework (Snijders et al., 2010) was used to estimate a set of parameters governing the evolution of the network and the recovery attributes of the nodes simultaneously. Findings indicated that advice and loan relationships and recovery-related attitudes were endogenously interdependent, and these results were affected exogenously by gender, ethnicity, and reason for leaving the recovery houses. Prior findings had indicated that higher advice seeking in recovery houses was related to higher levels of stress with more negative outcomes. However, the current study found that recovery is enhanced over time if advice was sought from residents with higher recovery scores. Our study shows that social embedding, i.e. one's position in relationship networks, affects recovery prospects. More specifically, the formation of ties with relatively more recovered residents as an important predictor of better outcomes.

Willingness to Lend Resources is Associated with Increases in Recovery and Participation in Community Activities.

Recovery homes may facilitate individuals with substance use disorders re-integration back into community settings by providing friendship, resources, and advice. Participants of the current study were over 600 residents of 42 Oxford House recovery homes. Findings indicated that willingness to share resources in the form of loans was associated with higher levels of house involvement in recovery home chapters. Active involvement in house and community affairs may influence more recovery within homes or may be an indicator of houses with residents with more capacities and skills for positive long-term health outcomes. Such findings suggest that recovery is a dynamic process with multiple ecological layers embedding individuals, their immediate social networks, and the wider community.

Risks for Developing Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in College Students Following Infectious Mononucleosis: A Prospective Cohort Study.

BACKGROUND: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) involves severe fatigue, unrefreshing sleep, and cognitive impairment, leading to functional difficulties; prior studies have not evaluated risk factors with behavioral and immune data collected before developing ME/CFS. Up to 5% of university students develop infectious mononucleosis (IM) annually, and 9-12% meet criteria for ME/CFS 6 months later. We sought to determine predictors of ME/CFS. METHODS: We enrolled college students at the start of the school year (time 1), identified those who developed IM (time 2), and followed them for 6 months (time 3), identifying 3 groups: those who developed ME/CFS, severe ME/CFS (meeting >1 set of criteria), and who were asymptomatic. We conducted 8 behavioral and psychological surveys and analyzed cytokines at 3 time points. RESULTS: 238 of the 4501 students (5.3%) developed IM; 6 months later, 55 of the 238 (23%) met criteria for ME/CFS and 157 (66%) were asymptomatic. 67 of the 157 asymptomatic students served as controls. Students with severe ME/CFS were compared with students who were asymptomatic at 3 time points. The former group was not different from the latter group at time 1 (prior to developing IM) in stress, coping, anxiety, or depression but were different in several behavioral measures and had significantly lower levels of IL-6 and IL-13. At time 2 (when they developed IM), the 2 ME/CFS groups tended to have more autonomic complaints and behavioral symptoms while the severe-ME/CFS group had higher levels of IL-12 and lower levels of IL-13 than the recovered group. CONCLUSIONS: At baseline, those who developed ME/CFS had more physical symptoms and immune irregularities, but not more psychological symptoms, than those who recovered.