More than three years out from the beginning of the COVID-19 pandemic, scientific authorities continue to monitor Long COVID, the syndrome comprising the disabling aftereffects of SARS-CoV-2 that can last for months and years after one’s initial infection.
If public health policymakers are to fully learn the profound lessons about human biology and pandemic resilience that this crisis has presented, it means grappling with the reality of complex, chronic illness as an outcome of any infection, whether it be viral or bacterial.
To do so, it’s time to establish and fully fund an Office at the National Institutes of Health (NIH) solely dedicated to researching infection-associated chronic illness.
The need for such an office at the NIH is clear. Long COVID is the new face of a similar set of conditions occurring in the wake of infections and well-documented in the scientific literature. Such effects are associated with polio, Lyme, Epstein-Barr, Ebola, SARS, MERS, Ross River virus, Q fever, chikungunya, and other infections. They will undoubtedly occur from the future epidemics and pandemics that are bound to strike in the coming years and decades.
A study from Harvard economist David Cutler estimates the five-year economic burden of Long COVID to the U.S. economy at $3.7 trillion. Such an enormous toll must catalyze ever more ambitious and creative policymaking that tackles the core biological issues head on.
A New Office for a New Paradigm
This summer, the National Academy of Science, Engineering and Medicine held a landmark workshop intended to establish a national research agenda for infection-associated chronic illnesses.
Held on June 29 and 30 in Washington, D.C., the event brought together scientists and advocates working on a host of infection-associated chronic diseases, including Long COVID, multiple sclerosis, persistent Lyme disease, myalgic encephalomyelitis, and fibromyalgia.
One expert, Meghan O’Rourke, the author of 2022’s National Book Award-nominated The Invisible Kingdom: Reimaging Chronic Illness, delivered remarks during an early session, invoking ideas from philosopher Thomas Kuhn, who popularized the notion that scientific progress occurs when one outdated paradigm of thinking gives way to a new paradigm that is able to encapsulate new data or observations.
“Paradigm shifts in medicine do not happen by slow and steady incremental change,” O’Rourke said. “They happen when a change in perception allows us to see what was already there. And that often happens when people new to fields come in with fresh eyes.”
To this point, the research on these diseases has been in crisis. It is underfunded, disjointed, and riven by controversy and distrust sown among scientists, providers, and patients desperate for answers. The arrival of Long COVID as a mass-disabling event has begun to alter national perception of chronic illness. An Office of Infection-Associated Chronic Illness Research would send a signal that public health policymakers intend to resolve the crisis and welcome this paradigm into mainstream medical thinking.
These long-term effects of infections should become a cornerstone of scientific understanding, not unlike cell theory or germ theory in centuries past.
In recent decades, the NIH has created new structures as it has evolved to meet needs that are new and pressing, or to correct neglected concerns of marginalized communities. Several historic examples illustrate similar circumstances that led to institutional innovation, establishing new offices which act to coordinate NIH activities on a certain set of priorities across all its institutes and centers.
The agency created its Office of AIDS Research in 1988, as HIV/AIDS became a burgeoning pandemic.
Later, in 1990, the agency built out its Office of Research on Women’s Health, to remedy a longstanding problem that women were not properly included in clinical research, and thus many women’s health issues were poorly understood.
The most recent example to draw from is the Office of Autoimmune Research, formally created in April 2023. Its origin story can be traced as far back as 1999, when then-Senator Joe Biden first proposed legislation to create such an office. Since then, more than two decades of advocacy culminated in 2022, when the National Academy held a symposium on autoimmune diseases. Its subsequent report recommended that Congress create an Office of Autoimmune Research. About 8 percent of the U.S. population lives with an autoimmune disease—including lupus, rheumatoid arthritis, and irritable bowel disease—and 80 percent of patients are women. Therefore, the office is housed within the Office of Research on Women’s Health.
In the wake of last month’s historic meeting on infection-associated chronic illnesses, policymakers must prioritize a similar recommendation to consolidate research on the seemingly disparate conditions all into a single office based around the idea that they emerge from an infectious origin.
An Emerging Consensus
In an opinion essay about Long COVID last summer, the New York Times’ Zeynep Tufecki called for the creation of a “National Institute for Postviral Conditions,” modeled after the National Cancer Institute.
Such a bold vision is admirable. But homing in on the specific category of conditions is critical. While those with Long COVID are experiencing a post-viral condition, those with post-treatment Lyme disease syndrome were sickened by a Borrelia burgdorferi, which is a bacterium rather than a virus. Further, Lyme and Long COVID are driven by pathogens capable of persisting in reservoirs in the body—as a growing body of research seems to point—the conditions might not be post-infectious at all. They may be the result of hidden pathogens that biomedical science has so far just not yet had the tools to detect.
Finally, many people living with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) either cannot identify the original virus that threw their nervous systems and immune systems into a yearslong tailspin, or do not know whether another type of trauma—such as a divorce or car wreck—may have provided the systemic shock similar to an infection that disrupted their immune systems.
Similarly, a report by the Center for Economic Policy Research (CEPR) and the Congressional Progressive Caucus Center last year called for Congress to “establish and adequately fund a National Institute on Complex Chronic Conditions.”
Like Tufecki’s proposal, the CEPR proposal is worthy as well. Yet the definition of a “complex chronic” condition may well be too broad, encompassing nearly anything from cancer to diabetes. It might risk drifting into a catch-all category rather than a precision strike against the conditions Long COVID has illuminated.
Large funders and advocacy groups are organizing around the idea as well. The Long Covid Alliance, in partnership with Solve M.E., recently launched a new push for what it calls the Office of Infection-Associated Chronic Illness Research, or “Office of IACIR.” That effort could have galvanizing power, as the CDC Foundation recently awarded a grant for patient advocacy organizations for the various diseases to create partnerships and convene meetings to set a common advocacy agenda.
As these groups organize over the next year, they’ll continue to distill the idea into its best form, while building necessary momentum around it in the press and with members of Congress.
Recommendations for New Steps
Within the NIH, an office could be established with an investment of $10 million, and serve as the initial step in a longer-term policy process. If successful, policymakers should consider growing the Office into a Center, and then, if warranted, into a whole new Institute.
The NIH is currently composed of twenty-seven institutes and centers, as prescribed by law. Creating a twenty-eighth institute would require an act of Congress, a tall ask. To start, policymakers should urgently move to create an office, given the need.
An office could also introduce cost savings by coordinating and synergizing research across multiple institutes. Currently, each institute is using its own funding to investigate elements of these illnesses, potentially duplicating other work.
The agency has other mechanisms for stoking the fires of necessary medical innovation. One avenue toward creating a new NIH structure for infection-associated chronic illnesses could be via the NIH’s Common Fund, which supports bold, scientific programs that catalyze discovery across biomedical and behavioral science and which are designed to be accomplished in five to ten years. Those proposals must be transformative, catalytic, synergistic with NIH’s goals, and cut across multiple institutes and centers
One of the most successful fruits of this process in recent years was the Undiagnosed Diseases Network, a network of clinical and research sites across the country serving the 25 million Americans living with a rare diseases, which often require specialized care, and for which there may only be a few clinicians in the country with the necessary expertise.
Since its humble beginnings as a laboratory at Staten Island’s New York Marine Hospital in 1887, the NIH has continually evolved to meet new challenges. The world’s leading agency counts more than 80 Nobel Prizes having been awarded for work it supports. Should a new office lead to breakthroughs on chronic illness, it may be an opportunity for another one.
With the burgeoning crisis around Long COVID and related conditions, policymakers again have an opportunity to build on this legacy and seed new discoveries that could revolutionize the understanding of human immunology.
Doing so could help unlock the dreams and potential of the tens of millions of Americans struggling with these conditions every day.