![]() ![]() ![]() While there are a variety of post-COVID outcomes worth investigating, patients with long-term multi-systemic symptoms without clear drivers, biomarkers, or diagnostics face a unique set of challenges that requires immediate attention. Alfred Gamboa at Vanderbilt, and those at the Workwell Foundation. ![]() Jarred Younger at the Neuroinflammation, Fatigue, and Pain Laboratory at the University of Alabama, Dr. Nancy Klimas at the Institute for Neuroimmune Medicine, the PolyBio Research Foundation including Dr. Specific United States-based researchers in the areas above include Dr. Researchers with decades of post-infection experience need to be at the forefront of the Long COVID research agenda, or we risk delaying our understanding and treatment of this illness. Researchers who are not in the post-infection space may have less awareness of these areas of research. Some findings that have been discovered in ME/CFS patients, such as hypometabolism of the brain, dysfunctional immune profiles, and reactivation of other viruses (such as EBV) have already been validated in Long COVID patients. ME/CFS researchers have made substantial discoveries in the areas of metabolic profiling, neuroimmunology, metabolomics and proteomics, impaired endothelial function in POTS, mitochondrial fragmentation, antivirals and metabolic phenotypes, hypoperfusion and cerebral blood flow, overlaps with connective tissue disorders, autoimmunity and autoantibodies, intracranial hypertension, and neuroimaging and other specialized imaging techniques for post-viral patients, among many other important findings. It is also crucial to prioritize investigations that consider links between these conditions, as we are seeing Long COVID patients being diagnosed with ME/CFS, dysautonomia, and Mast Cell Activation Syndrome. Long COVID patients share both symptoms and experiences with these patient populations, and we, as Long COVID patients and activists, have learned much from people with ME/CFS and related illnesses. We are writing today to urge the NIH to prioritize funding projects that build on prior ME/CFS and related chronic illness research in their investigation of Long COVID. The NIH’s announcement this winter provided that glimmer of hope for our community. As leaders of one of the largest patient-led support groups for people living with Covid-19 – and “first-wavers” ourselves – we know how devastating it has been for Long COVID patients to suffer in isolation without hope of answers or care. We were thrilled to learn of the NIH’s plan to investigate Long COVID and other post-acute-Covid-19 sequelae via funded research. We write to you on behalf of Body Politic – a grassroots health justice organization at the forefront of the patient-led movement for Long COVID – with regards to the NIH’s funding for research into Long COVID. ![]()
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