Open Letter to the NIH

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. We were thrilled to learn of the NIH’s plan to investigate Long COVID and other post-acute-Covid-19 sequelae via funded research. 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. The NIH’s announcement this winter provided that glimmer of hope for our community.

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. 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. 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. 

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. 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. Researchers who are not in the post-infection space may have less awareness of these areas of research. 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. 

Specific United States-based researchers in the areas above include Dr. Ron Davis at Stanford University, Dr. Nancy Klimas at the Institute for Neuroimmune Medicine, the PolyBio Research Foundation including Dr. Amy Proal and Dr. Michael VanElzakker, Dr. Peter Rowe at Johns Hopkins, Dr. Jarred Younger at the Neuroinflammation, Fatigue, and Pain Laboratory at the University of Alabama, Dr. Maureen Hanson at Cornell, Dr. Alfred Gamboa at Vanderbilt, and those at the Workwell Foundation.

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. Despite our efforts to raise widespread awareness through community outreach, clinician education, and media, we see that patients in our community continue to experience medical gaslighting and difficulties accessing informed care. Much of this confusion from clinicians seems to stem from the misunderstanding that long-term symptoms from COVID should be easily identifiable via routine diagnostics and organ-specific investigations. This is despite the fact that Long COVID patients are not the first population to experience long-term “medically unexplained” symptoms after a disease outbreak.

As many scientists have noted, research into Long COVID could provide answers to other related “mysterious” or misunderstood conditions and vice versa. The majority of people infected with COVID-19 in the United States have not been hospitalized and are thus more likely to fall into the category of long-term symptoms that may be hard to diagnose (rather than those with “post-ICU syndrome” or sequelae from severe organ damage such as to the lungs or heart). The Long COVID patient population in the U.S. has continued to grow as cases rise again and patients who were infected in previous waves attempt to resume daily life – only to realize they have not regained their baseline health.

The NIH now has an opportunity to provide answers to this growing population and adjacent groups that have historically been deprioritized for funded research. We are hopeful that the NIH will use this opportunity to build on the work of ME researchers and others who have studied similar illnesses, understanding both the links between these diagnoses and the unique challenges these conditions present.

Sincerely,

Fiona Lowenstein, Body Politic President

Angela Vázquez, Body Politic Vice President

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Fiona Lowenstein (they/she) is a writer, speaker, TV producer, and media consultant focusing on how health, wellness, and science intersect with culture, politics, and social justice. Their writing has been published in The New York Times, Vox, and The Guardian, among other publications. Most recently, Fiona has been writing and speaking about the COVID-19 patient experience and long-haul COVID, as well as the emerging COVID patient advocacy movement. You can find them on Twitter and Instagram @fi_lowenstein.

Angela Vázquez (she/her) is a social & racial justice activist, children's equity advocate, and public policy analyst (i.e. nerd). You can connect with her on LinkedIn !