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Opportunities and Challenges in Using Electronic Health Record Systems to Study Postacute Sequelae of SARS-CoV-2 Infection: Insights From the NIH RECOVER Initiative

Opportunities and Challenges in Using Electronic Health Record Systems to Study Postacute Sequelae of SARS-CoV-2 Infection: Insights From the NIH RECOVER Initiative

Similar considerations may pertain to other chronic infection–associated diseases, that is, complex multisystemic conditions often occurring in the context of infection with other pathogens, including myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). The widespread adoption of heterogeneous health information systems across the United States hinders large-scale EHR-based research efforts.

Hannah L Mandel, Shruti N Shah, L Charles Bailey, Thomas Carton, Yu Chen, Shari Esquenazi-Karonika, Melissa Haendel, Mady Hornig, Rainu Kaushal, Carlos R Oliveira, Alice A Perlowski, Emily Pfaff, Suchitra Rao, Hanieh Razzaghi, Elle Seibert, Gelise L Thomas, Mark G Weiner, Lorna E Thorpe, Jasmin Divers, RECOVER EHR Cohort

J Med Internet Res 2025;27:e59217

Combining Topic Modeling, Sentiment Analysis, and Corpus Linguistics to Analyze Unstructured Web-Based Patient Experience Data: Case Study of Modafinil Experiences

Combining Topic Modeling, Sentiment Analysis, and Corpus Linguistics to Analyze Unstructured Web-Based Patient Experience Data: Case Study of Modafinil Experiences

One of the main findings of this study was that although modafinil is only currently licensed by the National Institute for Health and Care Excellence for a single condition within the United Kingdom, posters were finding it effective for a wide range of conditions, including central disorders of hypersomnolence, multiple sclerosis, attention-deficit disorder and attention-deficit/hyperactivity disorder, social anxiety, depression, sleep-related breathing disorders, general fatigue, myalgic encephalomyelitis

Julia Walsh, Jonathan Cave, Frances Griffiths

J Med Internet Res 2024;26:e54321

Long COVID Discourse in Canada, the United States, and Europe: Topic Modeling and Sentiment Analysis of Twitter Data

Long COVID Discourse in Canada, the United States, and Europe: Topic Modeling and Sentiment Analysis of Twitter Data

Each term includes a description to explain its relevance to long COVID. b ME: myalgic encephalomyelitis. c CFS: chronic fatigue syndrome. We focused on English-language tweets due to the availability and accessibility of large volumes of Twitter data in English, allowing for more accurate and reliable analysis.

Ahmed Ghassan Tawfiq AbuRaed, Emil Azuma Prikryl, Giuseppe Carenini, Naveed Zafar Janjua

J Med Internet Res 2024;26:e59425

Development and Implementation of an Online Patient Education Program for Children and Adolescents With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Their Parents, Siblings, and School Personnel: Protocol for the Prospective BAYNET FOR ME/CFS Study

Development and Implementation of an Online Patient Education Program for Children and Adolescents With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Their Parents, Siblings, and School Personnel: Protocol for the Prospective BAYNET FOR ME/CFS Study

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a severe chronic illness that causes significant life changes for those affected as well as their social environment [1,2]. It is estimated that approximately 300,000 people in Germany suffer from ME/CFS, including up to 90,000 children and adolescents [3]. An increase in cases has been observed during the COVID-19 pandemic [4]. Given these numbers, ME/CFS is not considered a rare disorder [5].

Franca Keicher, Julia Thomann, Jana Erlenwein, Mara Schottdorf, Nils Lennart Reiter, Nadine Patricia Scholz-Schwärzler, Barbara Vogel, Cordula Warlitz, Silvia Stojanov, Silvia Augustin, Lola Goldbrunner, Linda Schanz, Veronika Dodel, Charlotte Zipper, Nicole Schiweck, Robert Jaeschke, Milica Saramandic, Karolina Wiejaczka, Maria Eberhartinger, Kristina Dettmer, Daniel Bruno Ricardo Hattesohl, Stephanie Englbrecht, Uta Behrends, Juliane Spiegler

JMIR Res Protoc 2024;13:e54679

Lyme Disease Under-Ascertainment During the COVID-19 Pandemic in the United States: Retrospective Study

Lyme Disease Under-Ascertainment During the COVID-19 Pandemic in the United States: Retrospective Study

The most recent case definition, published by the CDC in 2022, characterizes Lyme disease by 1 or more of the following clinical criteria in the absence of another known etiology: erythema migrans, lymphocytic meningitis, cranial neuritis including facial palsies, radiculoneuropathy, encephalomyelitis, recurrent joint swelling in 1 or a few joints, and acute onset of high-grade atrioventricular conduction defects that resolve within days to weeks [11].

Brie S Jones, Michael E DeWitt, Jennifer J Wenner, John W Sanders

JMIR Public Health Surveill 2024;10:e56571

Study of Postacute Sequelae of COVID-19 Using Digital Wearables: Protocol for a Prospective Longitudinal Observational Study

Study of Postacute Sequelae of COVID-19 Using Digital Wearables: Protocol for a Prospective Longitudinal Observational Study

Corroborating evidence shows persistent symptoms in recovered patients of other coronaviruses [29,30] and postviral chronic syndromes (eg, myalgic encephalomyelitis/chronic fatigue syndrome) [31]. Evidence of PASC is based on data primarily from hospitalized patients [18,19,32-35] and minimally from nonhospitalized patients [17,36], who represent ~20% and 80% of patients with COVID-19, respectively [37].

Sherine El-Toukhy, Phillip Hegeman, Gabrielle Zuckerman, Anirban Roy Das, Nia Moses, James Troendle, Tiffany M Powell-Wiley

JMIR Res Protoc 2024;13:e57382

Understanding the Long Haulers of COVID-19: Mixed Methods Analysis of YouTube Content

Understanding the Long Haulers of COVID-19: Mixed Methods Analysis of YouTube Content

This sentiment appeared to be common across the board; however, 3 groups stood out in particular: those with other chronic illnesses such as chronic fatigue syndrome and myalgic encephalomyelitis, women, and people of color. Those who had been battling chronic diseases for years before the emergence of PCC empathized with long haulers who felt that they were not being heard, as can be seen in Table 5.

Alexis Jordan, Albert Park

JMIR AI 2024;3:e54501