About the Patient-Generated Hypotheses JournalPatient-Led Research Collaborative
Patient Led Research Collaborative for Long COVID
About the Patient-Generated Hypotheses JournalPatient-Led Research Collaborative
Archive: New COVID-19 ‘Citizen Science’ Initiative Lets Any Adult with a Smartphone Help to Fight Coronavirus
The online study would try to help researchers gain insight into how the virus is spreading and identify ways to predict and reduce the number of new infections.
Patient Led Research Collaborative – for Long COVID
Cite as: O’Connor, A. M. (2023). Hypothesis: Long COVID brain fog is caused by free glycan sugar chains in the brain. Patient-Generated Hypotheses Journal for Long COVID & Associated Conditions, Vol. 1, 5-12
Crowdsourced Health Research Studies: An Important Emerging Complement to Clinical Trials in the Public Health Research Ecosystem
Background: Crowdsourced health research studies are the nexus of three contemporary trends: 1) citizen science (non-professionally trained individuals conducting science-related activities); 2) crowdsourcing (use of web-based technologies to recruit project participants); and 3) medicine 2.0 / health 2.0 (active participation of individuals in their health care particularly using web 2.0 technologies). Crowdsourced health research studies have arisen as a natural extension of the activities of health social networks (online health interest communities), and can be researcher-organized or participant-organized. In the last few years, professional researchers have been crowdsourcing cohorts from health social networks for the conduct of traditional studies. Participants have also begun to organize their own research studies through health social networks and health collaboration communities created especially for the purpose of self-experimentation and the investigation of health-related concerns. Objective: The objective of this analysis is to undertake a comprehensive narrative review of crowdsourced health research studies. This review will assess the status, impact, and prospects of crowdsourced health research studies. Methods: Crowdsourced health research studies were identified through a search of literature published from 2000 to 2011 and informal interviews conducted 2008-2011. Keyword terms related to crowdsourcing were sought in Medline/PubMed. Papers that presented results from human health studies that included crowdsourced populations were selected for inclusion. Crowdsourced health research studies not published in the scientific literature were identified by attending industry conferences and events, interviewing attendees, and reviewing related websites. Results: Participatory health is a growing area with individuals using health social networks, crowdsourced studies, smartphone health applications, and personal health records to achieve positive outcomes for a variety of health conditions. PatientsLikeMe and 23andMe are the leading operators of researcher-organized, crowdsourced health research studies. These operators have published findings in the areas of disease research, drug response, user experience in crowdsourced studies, and genetic association. Quantified Self, Genomera, and DIYgenomics are communities of participant-organized health research studies where individuals conduct self-experimentation and group studies. Crowdsourced health research studies have a diversity of intended outcomes and levels of scientific rigor. Conclusions: Participatory health initiatives are becoming part of the public health ecosystem and their rapid growth is facilitated by Internet and social networking influences. Large-scale parameter-stratified cohorts have potential to facilitate a next-generation understanding of disease and drug response. Not only is the large size of crowdsourced cohorts an asset to medical discovery, too is the near-immediate speed at which medical findings might be tested and applied. Participatory health initiatives are expanding the scope of medicine from a traditional focus on disease cure to a personalized preventive approach. Crowdsourced health research studies are a promising complement and extension to traditional clinical trials as a model for the conduct of health research.
Researchers link Long COVID to another virus | NHK WORLD-JAPAN News
Researchers in Japan have released findings showing that COVID-19 after effects, including fatigue, occur when a coronavirus infection activates another virus already inside the body.
Current status and future perspectives on the mechanistic and pathophysiological understanding of long COVID
Viral and infectious illnesses can exert profound and enduring effects on population health and well-being. In the aftermath of SARS-CoV-2 infection, post-acute sequelae, collectively referred to as Long COVID, have emerged as a major global health challenge, affecting more than 400 million people and contributing to estimated annual economic costs exceeding $1 trillion. Long COVID encompasses a wide and heterogeneous spectrum of debilitating symptoms, including cognitive dysfunction, sleep disturbances, severe fatigue, and post-exertional malaise. Despite its substantial burden, fundamental uncertainties remain regarding its underlying pathophysiology, the development of robust diagnostic criteria, and the identification of effective therapeutic options. This review synthesises current evidence on the biological mechanisms thought to contribute to Long COVID, spanning immune dysregulation, viral persistence, autonomic dysfunction, microvascular pathology, and other emerging hypotheses. We examine advances and limitations in contemporary diagnostic approaches and critically appraise existing treatment strategies, highlighting inconsistencies and gaps that hinder clinical consensus. By integrating interdisciplinary insights, this review underscores the urgent need for mechanistic clarity, validated diagnostic frameworks, and rigorously evaluated treatment pathways. Addressing these gaps will be essential to developing effective, evidence-based management strategies and mitigating the long-term impact of Long COVID on global health.
Current status and future perspectives on the mechanistic and pathophysiological understanding of long COVID
Viral and infectious illnesses can exert profound and enduring effects on population health and well-being. In the aftermath of SARS-CoV-2 infection, post-acute sequelae, collectively referred to as Long COVID, have emerged as a major global health challenge, affecting more than 400 million people and contributing to estimated annual economic costs exceeding $1 trillion. Long COVID encompasses a wide and heterogeneous spectrum of debilitating symptoms, including cognitive dysfunction, sleep disturbances, severe fatigue, and post-exertional malaise. Despite its substantial burden, fundamental uncertainties remain regarding its underlying pathophysiology, the development of robust diagnostic criteria, and the identification of effective therapeutic options. This review synthesises current evidence on the biological mechanisms thought to contribute to Long COVID, spanning immune dysregulation, viral persistence, autonomic dysfunction, microvascular pathology, and other emerging hypotheses. We examine advances and limitations in contemporary diagnostic approaches and critically appraise existing treatment strategies, highlighting inconsistencies and gaps that hinder clinical consensus. By integrating interdisciplinary insights, this review underscores the urgent need for mechanistic clarity, validated diagnostic frameworks, and rigorously evaluated treatment pathways. Addressing these gaps will be essential to developing effective, evidence-based management strategies and mitigating the long-term impact of Long COVID on global health.
Implementation of Digital Monitoring Services During the COVID-19 Pandemic for Patients With Chronic Diseases: Design Science Approach
Background: The COVID-19 pandemic is straining health systems and disrupting the delivery of health care services, in particular, for older adults and people with chronic conditions, who are particularly vulnerable to COVID-19 infection. Objective: The aim of this project was to support primary health care provision with a digital health platform that will allow primary care physicians and nurses to remotely manage the care of patients with chronic diseases or COVID-19 infections. Methods: For the rapid design and implementation of a digital platform to support primary health care services, we followed the Design Science implementation framework: (1) problem identification and motivation, (2) definition of the objectives aligned with goal-oriented care, (3) artefact design and development based on Scrum, (4) solution demonstration, (5) evaluation, and (6) communication. Results: The digital platform was developed for the specific objectives of the project and successfully piloted in 3 primary health care centers in the Lisbon Health Region. Health professionals (n=53) were able to remotely manage their first patients safely and thoroughly, with high degrees of satisfaction. Conclusions: Although still in the first steps of implementation, its positive uptake, by both health care providers and patients, is a promising result. There were several limitations including the low number of participating health care units. Further research is planned to deploy the platform to many more primary health care centers and evaluate the impact on patient’s health related outcomes.
The Story behind the Science: Preprints of pandemic potential—how bioRxiv and medRxiv brought preprints to the life sciences
ABSTRACT The bioRxiv and medRxiv preprint servers brought preprinting to the life sciences and played a critical role in disseminating COVID research during the pandemic. Here, I reflect on the birth of bioRxiv and medRxiv and the crucial role so many members of the community played, our experience during the pandemic, and the launch of the new non-profit organization set up to oversee the servers. The pandemic was a stress test for bioRxiv and medRxiv that demonstrated their value and robustness. Under the umbrella of openRxiv, they are now poised to become long-term infrastructure underpinning a new publishing ecosystem.
Patient-reported treatment outcomes in ME/CFS and long COVID
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and long COVID are persistent multisystem illnesses affecting many patients. With no known effective FDA-approved treatments for either condition, patient-reported outcomes of treatments may prove helpful in identifying management strategies that can improve patient care and generate new avenues for research. Here, we present the results of an ME/CFS and long COVID treatment survey with responses from 3,925 patients. We assess the experiences of these patients with more than 150 treatments in conjunction with their demographics, symptoms, and comorbidities. Treatments with the greatest perceived benefits are identified. Patients with each condition who participated in the study shared similar symptom profiles, including all the core symptoms of ME/CFS, e.g., 89.7% of ME/CFS and 79.4% of long COVID reported postexertional malaise (PEM). Furthermore, treatment responses between these two patient groups were significantly correlated (R 2 = 0.68). Patient subgroups, characterized by distinct symptom profiles and comorbidities, exhibited increased responses to specific treatments, e.g., a POTS-dominant cluster benefiting from autonomic modulators and a cognitive-dysfunction cluster from CNS stimulants. This study underscores the symptomatic and therapeutic similarities between ME/CFS and long COVID and highlights the commonalities and nuanced complexities of infection-associated chronic diseases and related conditions. While this study does not provide recommendations for specific therapies, in the absence of approved treatments, insights from patient-reported experiences provide urgently needed real-world evidence for developing targeted patient care therapies and future clinical trials.
COVID antihistamine protocol
This current wave of COVID is bad, and I'm seeing a lot of people who were previously NOVID posting photos of their positive tests. I've been trying fairly diligently to get this information out on social media, because I know I follow the literature a lot more closely than a lot of people, so here
Open-science approach delivers a promising pre-clinical candidate for broad-spectrum coronavirus antiviral
ASAP-0017445 is designed to be a direct-to-generic, globally accessible treatment ready for future coronavirus pandemics.
Launching openRxiv Labs - openRxiv
Over the last thirteen years, bioRxiv and medRxiv have grown into widely used infrastructure for rapid research sharing in biology and medicine. The reliability and researcher-first values that have defined these platforms since their founding remain central to how we operate, and building on the trust, partnerships, and community relationships researchers worldwide depend on is…
COVID-19 Vaccines Aren’t Causing AIDS
The truth behind a new preprint from a team at Yale
Correction of scientific literature: Too little, too late!
The Coronavirus Disease 2019 (COVID-19) pandemic has highlighted the limitations of the current scientific publication system, in which serious post-publication concerns are often addressed too slowly to be effective. In this Perspective, we offer suggestions to improve academia’s willingness and ability to correct errors in an appropriate time frame.
For Small Businesses
The Advanced Research Projects Agency for Health (ARPA-H) supports transformative research ranging in scale from molecular to societal to deliver health breakthroughs in years, not decades.
