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Patient-Led Researchers Publish Comprehensive Study on Long COVID

On January 13, 2023, a major study authored by Hannah E. Davis, Lisa McCorkell, Julia Moore Vogel, and Eric J. Topol was published in Nature Reviews Microbiology. This study, titled "Long COVID: major findings, mechanisms and recommendations," provides a comprehensive overview of long COVID and the current understanding of the associated pathophysiology.
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On January 13, 2023, a major study authored by Hannah E. Davis, Lisa McCorkell, Julia Moore Vogel, and Eric J. Topol was published in Nature Reviews Microbiology. This study, titled “Long COVID: major findings, mechanisms and recommendations,” provides a comprehensive overview of long COVID and the current understanding of the associated pathophysiology. The study outlines the various symptoms and organ impacts of long COVID and identifies risk factors, as well as similarities with other viralonset illnesses. Additionally, the study examines the current diagnostic and treatment options, and the role of vaccinations. The authors note that while there has been significant progress in understanding long COVID, future research must be prioritized to further the understanding of this chronic illness and develop better treatment options.

The study authors call for a comprehensive long COVID research agenda that builds upon existing knowledge from ME/CFS, dysautonomia and other viralonset conditions, including but not limited to brain and brainstem inflammation, neuroimmunology, metabolic profiling, mitochondrial fragmentation, antiviral and metabolic phenotypes, hypoperfusion/cerebral blood flow, nanoneedle diagnostic testing, overlaps with connective tissue disorders, autoimmunity and autoantibodies, viral/microbial persistence, intracranial hypertension, hypermobility, craniocervical obstructions, altered T and B cells, metabolomics and proteomics, elevated blood lactate level, herpesvirus reactivations, immune changes in the early versus late post-viral years, and changes to the gut microbiota.

Additionally, the study authors call for prioritizing robust clinical trials for potential treatments, as patients currently have few treatment options. Research on long COVID be representative of the populations who had COVID19 and are developing long COVID at high rates. Additionally, the study authors recommend that medical schools improve their education on pandemics, viruses and infectioninitiated illnesses such as long COVID and ME/CFS. In addition to providing education on long COVID to the biomedical community, the study authors call emphasize the need for a public communications campaign that informs the public about the risks and outcomes of long COVID. Finally, the study authors advocate for policies and funding that will sustain long COVID research and enable people with long COVID to receive adequate care and support.

The study authors are affiliated with the Patient-Led Research Collaborative, which is a group of long COVID patients who are also researchers. The mission of the Patient-Led Research Collaborative is to facilitate patient-led and patient-involved research into Long COVID and associated conditions while following rigorous research methodology, and to advocate for policies that enable patients, particularly the most marginalized, to access care and live with dignity.

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A woman wearing a mask to prevent infection from COVID-19.

New Survey: The Impact of COVID Reinfections

The Patient-Led Research Collaborative is working to better understand how being reinfected by COVID-19 may increase the risk of developing long COVID. You can participate in their research by completing their survey.

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