Understanding Experiences of Youth with Long COVID: A Qualitative Approach.

There is limited information on the specific impacts of Long COVID in youth. Long COVID presents as persisting or new symptoms following initial COVID-19 infection. The aim of this study was to better understand how children and their families describe their experiences seeking diagnosis and support following the onset of symptoms of Long COVID. Six children and five caregivers located in the United States participated in this study. Study procedures included an online video interview with caregiver-child dyads. Interview transcriptions were then analyzed using a conventional approach to content analysis, with two independent coders generating themes. Eight themes emerged from this analysis including the severity of illness and symptomatology, difficulty surrounding the diagnostic process and not being believed, the impact on family and social connections, poor school functioning, positive coping, subsequent positive medical experiences, mental health, and knowledge of the medical field and healthcare experience. Themes revealed difficulty for youth and families in navigating the medical system and functioning in areas of daily life as well as areas of positive experiences related to coping and medical involvement. These findings also highlighted areas of needed improvement for the medical community and for research on Long COVID in youth.

The Head-Up Tilt Table Test as a Measure of Autonomic Functioning among Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.

Individuals with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) often experience autonomic symptoms. In the present study, we evaluated 193 adults seeking treatment for ME/CFS, who were recruited from an outpatient clinic. The participants completed a head-up tilt table test to assess two common types of orthostatic intolerance, namely, postural orthostatic tachycardia syndrome (POTS) and orthostatic hypotension (OH). During the tilt test, 32.5% of the participants demonstrated POTS or OH. The participants with either of these two common types of orthostatic intolerance were found to have more problems with sleep and post-exertional malaise as assessed by the DePaul Symptom Questionnaire; these patients also reported more physical and health function limitations. The implications of the findings are discussed.

Effects of strength of relationship ties in recovery homes: A conundrum.

Recovery homes are a widespread source of support for those attempting to maintain abstinence. For those who are able to remain in these settings for at least 6 months, outcomes tend to be favorable; however, many leave prematurely. There is a need to better understand the social integration processes that play a major role in giving recovery home residents access to available recovery-related social capital that is associated with better outcomes. The current study involved Oxford House recovery homes in 3 states and examined the strength of relationship ties among house members. We found that those who associated with peers who have higher recovery scores tend to improve their own recovery scores over time. However, we also found that those with higher recovery scores tended to create "strong" ties with similarly high-scoring alters; likewise lower-scoring individuals preferentially formed strong ties with each other. These findings suggest a conundrum: recovery home residents most in need of relational support from more recovered housemates are the least likely to obtain it. We discuss possible pathways to creating more ties between high and low-recovered residents.

Joint Flexibility and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome After Mononucleosis.

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.

Psychometric evaluation of the DePaul Symptom Questionnaire-Short Form (DSQ-SF) among adults with Long COVID, ME/CFS, and healthy controls: A machine learning approach.

Long COVID shares a number of clinical features with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), including post-exertional malaise, severe fatigue, and neurocognitive deficits. Utilizing validated assessment tools that accurately and efficiently screen for these conditions can facilitate diagnostic and treatment efforts, thereby improving patient outcomes. In this study, we generated a series of random forest machine learning algorithms to evaluate the psychometric properties of the DePaul Symptom Questionnaire-Short Form (DSQ-SF) in classifying large groups of adults with Long COVID, ME/CFS (without Long COVID), and healthy controls. We demonstrated that the DSQ-SF can accurately classify these populations with high degrees of sensitivity and specificity. In turn, we identified the particular DSQ-SF symptom items that best distinguish Long COVID from ME/CFS, as well as those that differentiate these illness groups from healthy controls.

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.

Reducing suicidal ideation in African American adolescents: A randomized controlled clinical trial.

OBJECTIVE: Suicide rates among African American adolescents have increased exponentially in recent years. The socioecological stressors that can increase suicide risk for African American adolescents, in conjunction with unique suicide risk manifestations within this group, require culturally sensitive preventive interventions. This study examines the efficacy of the Adapted-Coping With Stress course (A-CWS), a culturally tailored preventive intervention, to reduce suicidal ideation in African American adolescents, utilizing a randomized controlled design. METHOD: Participants included 410 ninth-grade students in a large Midwestern city; most students identified as Black/African American. Participants were randomly assigned to either the A-CWS intervention or standard care control condition. All participants were assessed at baseline, immediately postintervention, and 6 and 12 months postintervention. RESULTS: Treatment effects were examined using latent growth models comparing suicidal ideation trajectories in control and intervention conditions. Analyses were conducted using both intention-to-treat and treatment-as-received samples (i.e., intervention condition participants who attended at least 80% of sessions). In both intention-to-treat and treatment-as-received analyses, there was a significant treatment effect: Individuals in the A-CWS intervention condition with higher baseline ideation evidenced a superior reduction in suicidal ideation over the course of the study, relative to their counterparts in the standard care control condition. CONCLUSION: Findings indicate that the A-CWS preventive intervention is efficacious in reducing suicidal ideation among African American adolescents with higher levels of baseline suicidal ideation and that effects sustain over time, with the strongest effect evidenced 12 months postintervention. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

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.

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.

Pediatric Post-Acute Sequelae of SARS-CoV-2 Infection.

Aim: Youth who have not recovered from COVID-19 have been referred to as having Post-Acute Sequelae of SARS-CoV-2 Infection (PASC). The goal of this study was to better understand which symptoms persisted since onset of infection and how these symptoms compare to symptoms experienced by those with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Method: A sample of 19 parents who had a child with PASC were recruited using social media to fill out a questionnaire detailing symptoms at two time points. The first time point included their child's current symptoms and the second captured symptoms at initial infection. These participants were compared to a sample of 19 youth with ME/CFS. Results: Findings indicated significant decreases among several immune, neuroendocrine, pain, post-exertional malaise (PEM), and COVID-19 Centers for Disease Control and Prevention (CDC) domain symptoms from time of acute infection to time of current reporting. Fatigue remained at a high level as did several symptoms within the sleep and PEM domains. Participants with ME/CFS had overall worse symptomatology when compared to participants with PASC, especially in the neurocognitive domain. Conclusion: Most symptoms of those with PASC decline over time, but several remain at high levels, including fatigue. These findings are helpful in better understanding common symptom presentation profiles for youth with PASC and can be used to more adequately tailor diagnostic criteria and treatment strategies for youth.

Understanding, diagnosing, and treating Myalgic encephalomyelitis/chronic fatigue syndrome - State of the art: Report of the 2nd international meeting at the Charité Fatigue Center.

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a devastating disease affecting millions of people worldwide. Due to the 2019 pandemic of coronavirus disease (COVID-19), we are facing a significant increase of ME/CFS prevalence. On May 11th to 12th, 2023, the second international ME/CFS conference of the Charité Fatigue Center was held in Berlin, Germany, focusing on pathomechanisms, diagnosis, and treatment. During the two-day conference, more than 100 researchers from various research fields met on-site and over 700 attendees participated online to discuss the state of the art and novel findings in this field. Key topics from the conference included: the role of the immune system, dysfunction of endothelial and autonomic nervous system, and viral reactivation. Furthermore, there were presentations on innovative diagnostic measures and assessments for this complex disease, cutting-edge treatment approaches, and clinical studies. Despite the increased public attention due to the COVID-19 pandemic, the subsequent rise of Long COVID-19 cases, and the rise of funding opportunities to unravel the pathomechanisms underlying ME/CFS, this severe disease remains highly underresearched. Future adequately funded research efforts are needed to further explore the disease etiology and to identify diagnostic markers and targeted therapies.

Complex Contexts within Oxford Houses: Psychiatrically Comorbid Social Networks.

This study aimed to explore whether there are differences between Oxford House recovery home residents with psychiatric comorbidity in their ability to form, maintain, and dissolve loaning ties and seek advice, when compared to Oxford House residents without comorbidity, and if differences do exist, are those ties mono- or bi-directional. Findings indicated unique interdependencies among individuals with psychiatric comorbidity for advice seeking, loaning, and recovery factor scores. The results of this investigation are consistent with the dynamic systems theory conceptions of community-based recovery. Recovery homes provide access to social capital, via the residents' social network, by facilitating recovery-oriented social exchanges, which can lead to changes to the recovery home social dynamics. Upon interpreting the results of this study, components from a dynamic systems theory emerged (e.g., explaining the processes that preserve or undermine the development, maintenance, and dissolution of a network); and provided a framework for interpreting the loaning, advice-seeking, and the latent recovery factor networks and their relationship with psychiatric comorbidity. A deeper understanding of the interplay among these dynamics is described providing an understanding of how Oxford House recovery homes promote long-term recovery in a shared community setting for those with high psychiatric comorbidity.

The Importance of Social Support in Recovery Populations: Toward a Multilevel Understanding.

Although social support is commonly investigated in the context of substance recovery, researchers have widely neglected its multilevel nature, thus limiting what we know about its measurement across levels of observation. The current study used multilevel confirmatory factor analyses (MCFA) on 229 individuals living in 42 recovery homes to investigate the structure of single factor of social support at the individual and house-levels. Multilevel structural equation model (MSEM) was then conducted to examine whether the social support factor was associated with stress at the individual and house-levels. MCFA results showed that within individuals, all social support measures were significant and positive while at the house-level, there were a few discrepancies (e.g., IP was negative). Stress was significantly negatively related to the social support factor at the individual-level, but this association was positive at the house-level. These findings suggest that on an individual-level, a person's perception and source of social support is particularly important -even if the source of support comes from someone who is not abstinent. On a house-level, social support is more sensitive to outside influences than within individuals. Implications for future research and substance use interventions targeting social support are discussed.

Do diagnostic criteria for ME matter to patient experience with services and interventions? Key results from an online RDS survey targeting fatigue patients in Norway.

Public health and welfare systems request documentation on approaches to diagnose, treat, and manage myalgic encephalomyelitis and assess disability-benefit conditions. Our objective is to document ME patients' experiences with services/interventions and assess differences between those meeting different diagnostic criteria, importantly the impact of post-exertional malaise. We surveyed 660 fatigue patients in Norway using respondent-driven sampling and applied validated DePaul University algorithms to estimate Canadian and Fukuda criteria proxies. Patients on average perceived most interventions as having low-to-negative health effects. Responses differed significantly between sub-groups for some key interventions. The PEM score was strongly associated with the experience of most interventions. Better designed and targeted interventions are needed to prevent harm to the patient group. The PEM score appears to be a strong determinant and adequate tool for assessing patient tolerance for certain interventions. There is no known treatment for ME, and "do-no-harm" should be a guiding principle in all practice.

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.

Predictors of impaired functioning among long COVID patients.

BACKGROUND: There is limited information on which acute factors predict more long-term symptoms from COVID-19. OBJECTIVE: Our objective was to conduct an exploratory factor analysis of self-reported symptoms at two time points of Long COVID-19. METHODS: Data from patients with Long COVID-19 were collected at the initial two weeks of contracting SARS CoV-2 and the most recent two weeks, with a mean duration of 21.7 weeks between the two-time points. At time point 2, participants also completed the Coronavirus Impact Scale (CIS), measuring how the COVID-19 pandemic affected various dimensions of their lives (e.g., routine, access to medical care, social/family support, etc.). RESULTS: At time 1, a three-factor model emerged consisting of Cognitive Dysfunction, Autonomic Dysfunction and Gastrointestinal Dysfunction. The analysis of time 2 resulted in a three-factor model consisting of Cognitive Dysfunction, Autonomic Dysfunction, and Post-Exertional Malaise. Using factor scores from time 1, the Autonomic Dysfunction and the Gastrointestinal Dysfunction factor scores significantly predicted the CIS summary score at time two. In addition, the same two factor scores at time 1 predicted the occurrence of myalgic encephalomyelitis/chronic fatigue syndrome at time 2. CONCLUSION: Cognitive and Autonomic Dysfunction emerged as factors for both time points. These results suggest that healthcare workers might want to pay particular attention to these factors, as they might be related to later symptoms and difficulties with returning to pre-illness family life and work functioning.

Adults with ME/CFS report surprisingly high rates of youth symptoms: A qualitative analysis of patient blog commentary.

BACKGROUND: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating chronic illness that impacts pediatric populations. OBJECTIVE: The current study aimed to better understand adult perceptions of their experiences leading up to their diagnosis of ME/CFS. METHOD: Patients provided data regarding symptoms of ME/CFS they may have experienced during childhood through a popular community blog forum, with participants interacting via blog comments in real-time and across various geographical locations. RESULTS: Descriptive analyses indicated that roughly 43% of adult survey participants reported having developed ME/CFS prior to age 18. A standard content analysis of patient blog commentary revealed several themes, such as poor mental health, family pattern/history, healthy childhood preceding sick adulthood, feeling misunderstood, lack of clarity until adulthood, sharing of resources, poor school functioning, isolation/poor social supports, and coping mechanisms. CONCLUSION: There are unique benefits and insights that can be used by investigators who collaborate with patient organizations as a means of better understanding ME/CFS illness severity, presentation, and lived experiences.

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.

Health outcomes of sensory hypersensitivities in myalgic encephalomyelitis/chronic fatigue syndrome and multiple sclerosis.

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a poorly understood chronic illness with many case definitions that disagree on key symptoms, including hypersensitivities to noise and lights. The aim of the current study was to understand the prevalence rates and characteristics of these symptoms amongst people with ME/CFS and to compare them to people with another chronic illness, multiple sclerosis (MS). International datasets consisting of 2,240 people with either ME/CFS or MS have completed the DePaul Symptom Questionnaire (DSQ) and the Short Form Health Survey Questionnaire (SF-36). Hypersensitivities to noise and lights were indicated from items on the DSQ, and participants were analyzed against DSQ and SF-36 subscales through a multivariate analysis of covariance. There were significantly higher percentages of people with hypersensitivities in the ME/CFS sample compared to the MS sample. Regardless of illness, participants that exhibited both hypersensitivities reported greater symptomology than those without hypersensitivities. Healthcare providers and researchers should consider these symptoms when developing treatment plans and evaluating ME/CFS case diagnostic criteria.