Letter from Body Politic to the NIH about Prioritizing ME/CFS Researchers

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I know that one of the concerns many of us have had about research funding for Long COVID is whether it will be used well, and in a way that also advanced ME/CFS research. This letter from Body Politic to the NIH addresses these concerns and urges the NIH to fund and build on the work of ME/CFS researchers: https://www.wearebodypolitic.com/bodytype/2021/4/22/open-letter-to-nih

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.

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.

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.