A Scientist Unravels Clues in His Own Long COVID Battle

Jeff Yau, PhD, never thought that his expertise in neuroscience would benefit his own health. As an associate professor of neuroscience at Baylor College of Medicine in Houston, he had spent his career studying the brain and nerves, exploring how we sense and perceive the world around us. But in 2022, when he tested positive for COVID-19, Yau’s expertise became more personal than he ever imagined.

What began as a mild case of COVID seemed uneventful—fever, loss of taste, and other telltale symptoms that resolved within days. Yet about four weeks later, his body began to change. Tingling and numbness crept in, followed by tremors that disrupted his daily life. Doctors gave him a diagnosis: chronic inflammatory demyelinating polyneuropathy (CIDP), a rare autoimmune disorder potentially triggered by his infection.

But the diagnosis brought more questions than answers. Why were the usual treatments, such as intravenous immunoglobulin infusions (IVIG) and plasma exchange, not working? And why had COVID pushed his immune system to attack his own nerves?

Determined to uncover the answers, Yau decided to take matters into his own hands. Partnering with a colleague, he turned his training as a neuroscientist inward, using the tools of his field to investigate his own condition. What he discovered—a critical clue about a specific antibody attacking his nervous system—didn’t just change his treatment plan. It highlighted the promise of precision medicine and shed light on the complex, often uncharted links between Long COVID and autoimmune conditions.

In this post, authored by PhD candidate Sarah Donofrio and published on the blog You Can Know Things, launched by physician-scientist Kristen Panthagani, MD, PhD, a resident physician and Yale Emergency Medicine Scholar at Yale New Haven Hospital, you’ll read about Yau’s journey and witness the power of science and persistence.

As he continues to recover, Yau is sharing his story—not just as a scientist but as a patient who has experienced the challenges of Long COVID firsthand. The post shows how Yau’s case is a reminder that even in the most perplexing medical mysteries, science can and will provide hope and direction.

Kenny Cheng is an undergraduate majoring in molecular, cellular, and developmental biology at Yale University.

Jeff Yau’s story, amazing as it is, is just one of the many stories of patients with Long COVID who are forced to do their own research to find answers because medicine has so few to offer for the many symptoms that can be linked to the sequelae of this infection. Like so many of those who were touched by the SARS-CoV-2 virus, the illness was mild but the consequences severe. Of course, there is no way to know for certain that Yau’s chronic inflammatory demyelinating polyneuropathy (CIDP) was caused by his infection, but the timing and the published reports of others who developed this unusual autoimmune disorder after this infection are suggestive.

There is so much we don’t know about this virus and its long-term effects. Yau found his answers, thanks to his own expertise and that of his friend, and in doing so made a significant contribution to our growing knowledge. For those without his resources, doing research on one’s own may not be as useful. But many feel that there is no other way to get a handle on what’s happened to their bodies. Too often, patients come to us at Yale’s Long COVID Care Center after struggling alone to both be believed and to find answers.

Doctors and other primary care physicians need to know more about this disorder because, given the prevalence of COVID and Long COVID, they are going to see it. But without education, they might not recognize it. And if they do, what to do about many of these myriad and mysterious symptoms is not well understood. It’s still early days in our understanding of what causes post-infectious disorders, but it’s our job to at least know that they are out there.

Read other installments of Long COVID Dispatches here.

If you’d like to share your experience with Long COVID for possible use in a future post (under a pseudonym), write to us at: LongCovidDispatches@yale.edu

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