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Increasing numbers of adults are living with the health-related consequences of Long COVID. The Episodic Disability Framework (EDF), derived from perspectives of adults living with HIV, characterizes the multi-dimensional and episodic nature of health-related challenges (disability) experienced by an individual. Our aim was to determine the applicability of the Episodic Disability Framework to conceptualize the health-related challenges experienced among adults living with Long COVID. We conducted a community-engaged qualitative descriptive study involving online semi-structured interviews. We recruited adults who self-identified as living with Long COVID via collaborator community organizations in Canada, Ireland, United Kingdom, and United States. We purposively recruited for diversity in age, gender identity, ethnicity, sexual orientation, and time since initial COVID-19 infection. We used a semi-structured interview guide informed by the EDF to explore experiences of disability living with Long COVID, specifically health-related challenges and how challenges were experienced over time. We conducted a group-based content analysis. Of the 40 participants, the median age was 39 years; and the majority were white (73%), women (63%), living with Long COVID for ≥ 1 year (83%). Consistent with the Episodic Disability Framework, disability was described as multi-dimensional and episodic, characterized by unpredictable periods of health and illness. Experiences of disability were consistent with the three main components of the Framework: A) dimensions of disability (physical, cognitive, mental-emotional health challenges, difficulties with day-to-day activities, challenges to social inclusion, uncertainty); B) contextual factors, extrinsic (social support; accessibility of environment and health services; stigma and epistemic injustice) and intrinsic (living strategies; personal attributes) that exacerbate or alleviate dimensions of disability; and C) triggers that initiate episodes of disability. The Episodic Disability Framework provides a way to conceptualize the multi-dimensional and episodic nature of disability experienced by adults living with Long COVID. The Framework provides guidance for future measurement of disability, and health and rehabilitation approaches to enhance practice, research, and policy in Long COVID.

IntroductionOur aim was to describe episodic nature of disability among adults living with Long COVID.MethodsWe conducted a community-engaged qualitative descriptive study involving online semistructured interviews and participant visual illustrations. We recruited participants via collaborator community organisations in Canada, Ireland, UK and USA.We recruited adults who self-identified as living with Long COVID with diversity in age, gender, race/ethnicity, sexual orientation and duration since initial COVID infection between December 2021 and May 2022. We used a semistructured interview guide to explore experiences of disability living with Long COVID, specifically health-related challenges and how they were experienced over time. We asked participants to draw their health trajectory and conducted a group-based content analysis.ResultsAmong the 40 participants, the median age was 39 years (IQR: 32–49); majority were women (63%), white (73%), heterosexual (75%) and living with Long COVID for ≥1 year (83%). Participants described their disability experiences as episodic in nature, characterised by fluctuations in presence and severity of health-related challenges (disability) that may occur both within a day and over the long-term living with Long COVID. They described living with ‘ups and downs’, ‘flare-ups’ and ‘peaks’ followed by ‘crashes’, ‘troughs’ and ‘valleys’, likened to a ‘yo-yo’, ‘rolling hills’ and ‘rollercoaster ride’ with ‘relapsing/remitting’, ‘waxing/waning’, ‘fluctuations’ in health. Drawn illustrations demonstrated variety of trajectories across health dimensions, some more episodic than others. Uncertainty intersected with the episodic nature of disability, characterised as unpredictability of episodes, their length, severity and triggers, and process of long-term trajectory, which had implications on broader health.ConclusionAmong this sample of adults living with Long COVID, experiences of disability were described as episodic, characterised by fluctuating health challenges, which may be unpredictable in nature. Results can help to better understand experiences of disability among adults living with Long COVID to inform healthcare and rehabilitation.

IntroductionAs the prevalence of Long COVID increases, there is a critical need for a comprehensive assessment of disability. Our aims are to: (1) characterise disability experiences among people living with Long COVID in Canada, UK, USA and Ireland; and (2) develop a patient-reported outcome measure to assess the presence, severity and episodic nature of disability with Long COVID.Methods and analysisIn phase 1, we will conduct semistructured interviews with adults living with Long COVID to explore experiences of disability (dimensions, uncertainty, trajectories, influencing contextual factors) and establish an episodic disability (ED) framework in the context of Long COVID (n~10 each country). Using the conceptual framework, we will establish the Long COVID Episodic Disability Questionnaire (EDQ). In phase 2, we will examine the validity (construct, structural) and reliability (internal consistency, test–retest) of the EDQ for use in Long COVID. We will electronically administer the EDQ and four health status criterion measures with adults living with Long COVID, and readminister the EDQ 1 week later (n~170 each country). We will use Rasch analysis to refine the EDQ, and confirm structural and cross-cultural validity. We will calculate Cronbach’s alphas (internal consistency reliability), and intraclass correlation coefficients (test–retest reliability), and examine correlations for hypotheses theorising relationships between EDQ and criterion measure scores (construct validity). Using phase 2 data, we will characterise the profile of disability using structural equation modelling techniques to examine relationships between dimensions of disability and the influence of intrinsic and extrinsic contextual factors. This research involves an academic–clinical–community partnership building on foundational work in ED measurement, Long COVID and rehabilitation.Ethics and disseminationThis study was approved by the University of Toronto Research Ethics Board. Knowledge translation will occur with community collaborators in the form of presentations and publications in open access peer-reviewed journals and presentations.

Introduction Long Covid and other infection‐associated chronic condition communities have been integral in advocating for patient engagement in all stages of research, from design and conduct, and implementation, through to interpretation and knowledge translation; nevertheless, the process varies across research teams. In this paper, we (1) describe our process undertaking a community‐engaged Long Covid research study; (2) evaluate our community‐engaged approach, highlighting strengths and limitations with our process; and (3) identify recommendations for engaging in community‐engaged patient‐oriented research in Long Covid. Methods Guided by the 4PI (Principles; Purpose; Presence; Process; Impact) Framework and Patient‐Led Research Scorecards, we describe our community‐engaged approach within the Long COVID and Episodic Disability Study, followed by an evaluation of our community engagement using a multistage consultation with members of the Long COVID and Episodic Disability Study team. We conducted an online group‐based discussion among persons with lived experiences and administered a web‐based Scorecard questionnaire rating the collaboration as it relates to four domains of patient burden, governance, integration into the research process, and organisation readiness to all members of the team, to assess strengths and limitations of our approach. Scores ranged from −2 (non‐collaboration) to +2 (ideal collaboration). Results Ten team members, five of whom were persons with lived experiences, completed the Scorecard questionnaire. Median Scorecard scores ranged from +1 to +2 for all domains. Five team members with lived experiences, representing four community support groups and organisations that participated in the community‐engagement discussion. We describe the practices and principles that enabled meaningful community engagement, with the strengths and limitations of our approach embedded throughout. Conclusion Our community‐engaged approach to the Long COVID and Episodic Disability Study enhanced the quality and relevance of the study to the community while highlighting areas to heighten meaningful engagement throughout. This study builds on foundational community‐based research principles of patient‐oriented research. Recommendations derived from our experiences may be used by other research teams conducting community‐engaged patient‐oriented research. Patient or Public Contribution The Long COVID and Episodic Disability Study is a community‐engaged research study involving 25 members, including 12 persons living with long Covid, 13 researchers and 5 clinicians (categories are not mutually exclusive), referred to as the Full Team. Persons with lived experiences possessed a range of professional and personal experiences spanning research, clinical, policy and private sector/business contexts; team members wore multiple hats and perspectives which collectively strengthened the diversity of expertise, perspectives and insights to the team and process. Engagement of people with lived experiences with Long Covid ensured that the study was fully co‐created with people living with Long Covid. During the development of the study proposal, community partners from organisations in Canada, Ireland, the United Kingdom and the United States, who were linked to larger networks of people living with Long Covid, were purposefully invited to join the study team. Several Long Covid community networks and organisations, represented by persons living with Long Covid, were involved in all stages of the research, including: COVID Long‐Haulers Support Group Canada (S.G.); Long COVID Advocacy Ireland (I.O., S.O. and R.S.); Long COVID Ireland (N.R. and R.S.); Long COVID Physio (D.A.B. and C.T.); Long Covid Support UK (M.O.H.); and Patient‐Led Research Collaborative (L.M., N.M. and H.W.). These representatives along with the Co‐PIs (K.K.O. and D.A.B.) and co‐ordinator (K.M.) comprised the Core Long COVID and Episodic Disability Community Collaborator Team (Core Team). Team members with lived experiences were provided yearly remuneration for their time and expertise dedicated to the study, either as an individual, or to the community organisation which they represented on the study according to their preference.

Background The symptomatic and immune responses to COVID-19 vaccination of people with Long COVID are poorly characterized. Methods In this prospective study, we evaluated changes in symptoms and immune responses after COVID-19 vaccination in 16 vaccine-naïve individuals with Long COVID. Surveys were administered before vaccination and at 2, 6, and 12 weeks after receiving the first vaccine dose of the primary series. Simultaneously, SARS-CoV-2-reactive TCR enrichment, SARS-CoV-2-specific antibody responses, antibody responses to other viral and self-antigens, and circulating cytokines were quantified before vaccination and at 6 and 12 weeks after vaccination. Results At 12 weeks post-vaccination, self-reported improved health is seen in 10 out of 16 participants, 3 have no change, and 3 have worse health although 2 report transient improvement after vaccination. One participant reporting worse health was hospitalized twice with chest pain (after each dose). Symptom outcomes are most associated with plasma biosignatures. Higher baseline sIL-6R is associated with symptom improvement, and stably elevated levels of IFN-β and CNTF are associated with no improvement. Significant elevation in SARS-CoV-2-specific TCRs and spike protein-specific IgG are observed at 6 and 12 weeks after vaccination. No changes in reactivities are observed against herpes viruses and self-antigens. Conclusions In this study of 16 people with Long COVID, vaccination is associated with increased SARS-CoV-2 spike protein-specific IgG and T cell expansion in most participants. Specific immune features are associated with symptom change after vaccination and most participants experience improved health or no change following vaccination. Plain language summary The impact of the COVID-19 vaccine on unvaccinated individuals suffering from Long COVID is uncertain. This study assessed the experience and biological markers of 16 unvaccinated participants with Long COVID. A total of 10 participants had improved health after vaccination, three reported worsening health, with one hospitalized twice with chest pain. Vaccination boosted the body’s immune responses against the virus that causes COVID-19. We identified biological markers that correlate with the changes in overall health after vaccination. Given that the study was small, more research is needed to confirm these results. Grady, Bhattacharjee and Silva et al. examine the effects of COVID-19 vaccination on 16 vaccine-naive individuals with Long COVID, finding that 10 reported improvements, 3 had no change, and 3 experienced worse overall health post-vaccination. Specific immune signatures correlate with these health changes following vaccination.

Asian hepatointestinal schistosomiasis due to Schistosoma japonicum is prevalent in the Philippines and in Indonesia, while it is close to elimination in China. The second Asian schistosome, S. mekongi , is found in Cambodia and Laos. The main pathology caused by both species is liver fibrosis, which can cause significant morbidity and mortality, mainly due to portal hypertension leading to bleeding from esophageal varices. Ultrasonography was introduced several decades ago as a safe, fast, non-invasive, and relatively inexpensive technique for assessing chronic schistosomiasis-related hepatic pathology in the clinical and field settings. A standardized ultrasound protocol had been established by experts at a WHO-chaired meeting in Cairo, Egypt, in 1990. The peculiarities of sonomorphologic abnormalities caused by S. japonicum and S. mekongi were not sufficiently covered in the Cairo protocol and not addressed at all in the subsequent WHO chaired meeting in Niamey 1996. At a follow-up WHO-chaired meeting in Phnom Pehnh, Cambodia, in 2002, an attempt was made to develop a protocol for Asian schistosomiasis, but a protocol resulting from this meeting has never been published. Although several studies investigated the use of ultrasonography to assess S. japonicum - and S. mekongi -related sonomorphological morbidity across endemic areas the lack of a standardized protocol hampered the characterization of sonomorphologic abnormalities with regard to progression, reversibility, prognosis, and correlation to morbidity. In addition, the comparison of data from different endemic areas and populations remained difficult. Therefore, a WHO-chiared expert meeting took place in Basel, Switzerland in September 2024 with the aim to establish a standardized ultrasound protocol for reporting the pathology caused by S. japonicum and S. mekongi . The proposed protocol is described in this article. Graphical Abstract

•We conducted 3 vaccine trials with recombinant full-length paramyosin (rSj97) in water buffalo.•The three-dose 500μg/dose regimen was well tolerated in two trials of 18 buffalo.•Vaccinated buffalo had 51.5–60.9% lower worm burden post challenge compared to controls.•rSj97 is a safe and promising vaccine candidate for Schistosomiasis japonica. Schistosomiasis japonica is a zoonosis and presents significant public health problems in China and the Philippines. Vaccines targeting domestic animals constitute attractive control measures. We conducted three vaccine trials to evaluate the protective efficacy of recombinant full-length paramyosin (rSj97) in water buffalo. Animals were immunized with 3 doses of rSj97 adjuvanted with ISA206 at 250μg/dose or 500μg/dose at 4wk intervals before challenge with 1000 Schistosoma japonicum cercariae. The primary outcome was worm burden assessed by portal perfusion 8–10weeks post challenge. Safety measures included weight, temperature, body condition score, hemogram and routine assays for hepatic and renal function. The three-dose regimen was well tolerated in all three trials. In the first trial, vaccinated buffalo had 51.5% lower worm burden post challenge compared to controls. In the second trial, buffalo immunized with 500μg/dose of rSj97 had 57.8% lower worm burden compared to controls (p=0.026). A similar but not significant reduction (60.9%) was observed with animals administered with 250ug rSj97/dose. In the third trial, buffalo immunized with a 500μg/dose of rSj97 had 57.8% lower worm burden compared to controls (p=0.014). These findings indicated that rSj97 is a safe and promising vaccine candidate for schistosomiasis japonica in water buffalo.

Post-Acute Sequelae of SARS-CoV-2 infection (PASC), also known as Long-COVID, encompasses a variety of complex and varied outcomes following COVID-19 infection that are still poorly understood. We clustered over 600 million condition diagnoses from 14 million patients available through the National COVID Cohort Collaborative (N3C), generating hundreds of highly detailed clinical phenotypes. Assessing patient clinical trajectories using these clusters allowed us to identify individual conditions and phenotypes strongly increased after acute infection. We found many conditions increased in COVID-19 patients compared to controls, and using a novel method to associate patients with clusters over time, we additionally found phenotypes specific to patient sex, age, wave of infection, and PASC diagnosis status. While many of these results reflect known PASC symptoms, the resolution provided by this unprecedented data scale suggests avenues for improved diagnostics and mechanistic understanding of this multifaceted disease.

Background Long COVID is a multisystem condition that negatively impacts daily function. Pacing is a self-management strategy to mitigate symptoms. Our aim was to describe experiences of pacing from the perspectives of adults living with Long COVID. Methods We conducted a community-engaged qualitative descriptive study involving one-on-one online interviews with adults living with Long COVID from Canada, Ireland, United Kingdom, and United States to explore experiences of disability. We asked participants about strategies they used to deal with health challenges living with Long COVID. Interviews were audio recorded and transcribed verbatim. We analyzed data using group-based content analytical techniques. Results Among the 40 participants living with Long COVID, the majority were women ( n  = 25; 63%), white ( n  = 29;73%) and heterosexual ( n  = 30;75%). The median age of participants was 39 years (25th, 75th percentile: 32, 49). Most participants ( n  = 37;93%) used pacing to mitigate or prevent symptoms. Participants described experiences of pacing across five main areas: (1) using pacing as a living strategy (pacing to mitigate multidimensional health challenges; applying pacing to many types of activities; process of pacing experienced as a moving target; pacing experienced as a helpful strategy, but not a cure for Long COVID); (2) learning how to pace (acquiring knowledge about pacing; developing strategies and skills to support pacing); (3) encountering challenges with pacing (learning how to pace; experiencing inequitable access to pacing; experiencing stigma and judgement; undergoing psychological and emotional adjustment from beliefs of ‘fighting’ or ‘pushing through’ to balancing rest with activity; making sacrifices; and encountering unexpected obstacles); (4) experiencing consequences of not pacing; and (5) conceptualising and describing pacing using analogies or metaphors. Conclusions Pacing is a challenging and complex strategy used to mitigate symptoms of Long COVID. Healthcare providers should work collaboratively with patients to further refine and implement this strategy, when appropriate.

The relationship between Long COVID (LC) and psychiatric outcomes, as well as factors associated with presence and absence of these, has so far been insufficiently studied. Here we evaluated psychiatric symptoms and coping among patients with LC and patients recovered from COVID-19 who participated in a large international survey. Given increased rates of psychiatric illness with chronic medical conditions and known immune-inflammatory contributors to psychiatric disease, we hypothesized that a subset, but not the entirety, of LC respondents may have comorbid psychopathology. A substantial minority of both groups experienced suicidality, depression and anxiety symptoms, with these symptoms being more common in the LC group. LC respondents used more adaptive coping styles. Psychiatric outcomes in LC were associated with younger age, greater reductions in overall health, higher symptom severity, limitations to physical capability, lower income, financial hardship, psychiatric history, employment impact, male sex, men and non-binary gender, and negative experiences with medical professionals, family, friends, partners and employers.In a large international survey, a minority subset of individuals with Long COVID experienced greater psychiatric symptom severity that was associated with greater reductions in overall health and other specific outcomes.