When the White House released President Biden’s 2025 budget requests this week, funding for biomedical research was stagnant. The more conservative wishlist from the president acknowledges a reduced appetite in Congress for non-defense government spending.
But some disease groups, along with their research allies, are undeterred. A growing number are calling for increased research funding and the creation of a new body at the National Institutes of Health to study chronic conditions that spring from infections.
The pitch comes on the heels of a major jump in awareness of post-infection chronic conditions, like long Covid, during the pandemic. And while it could go nowhere — several bureaucratic hoops must be jumped — the proposal concretizes some of the concerns and demands of tens of thousands of Americans who have little-understood, little-investigated conditions.
This group of diseases has by and large received little attention or funding in decades past — save for long Covid, which is relatively well-heeled at the moment through the RECOVER trial. Other conditions, including chronic Lyme, mast cell activation syndrome, Ehlers-Danlos syndrome, POTS, and myalgic encephalomyelitis/chronic fatigue syndrome, or ME/CFS, have mostly been ignored. And although not all are thought to be caused by infections, many share symptoms (notably, life-altering fatigue) and lack effective treatments, advocates say.
On Friday, the Federation of American Scientists released a white paper calling for the creation of the new NIH office. The authors cite economic, practical and moral justifications, arguing that these conditions affect millions of Americans in total, but don’t fit neatly into the existing structure, which is often siloed by organ or disease process.
ME/CFS patients, for example, experience symptoms that involve many different bodily systems. And, in addition to the complexity, many patients experience more than one of these diseases but the conditions are studied independent of each other. Researchers don’t fully understand why they so often co-occur, in part because it’s really difficult to get funding for cross-illness studies, they told STAT.
If patients are to get any treatments for these debilitating conditions, advocates say the NIH needs a body — an office, center, or even a coordinator — overseeing infection-associated chronic illness research (IACIR, for short) across the agency.
The white paper is a sort of trial balloon that goes public with the idea. Advocates have been organizing behind the scenes for weeks, trying to earn support in Congress, and herding cats: hammering out an agreement between the many patient groups with skin in the game.
They point to the example of the year-old Office of Autoimmune Disease Research — though they hope it won’t take as long to become real. That office was first supported by then-Senator Joe Biden in the 1990s.
The consensus so far is that there should be an entity for post-infection conditions at NIH. “It’s unclear what shape or form that final entity will take,” said Emily Taylor, vice president of advocacy and engagement for Solve M.E., a group that represents some ME/CFS and long Covid patients.
One of the NIH institutes could house it, or the new creation could be nested into the Office of the Director, advocates said. What matters most is that the entity gets funding authority and the power to orchestrate research and trials across the NIH. “We don’t just want an office with no power, no money,” said Lisa McCorkell, co-founder of the Patient-Led Research Collaborative, said.
In its humblest form, the entity could consist of a few staff members assigned to post-infection chronic illnesses, they said. A center or office would be a bigger investment, from $10 million and up. An institute would be a dream which, for now, remains out of reach. But the goal is to get more than these conditions have gotten in years past.
Reliance on ‘goodwill of people’
As things stand, many researchers are only able to investigate diseases like ME/CFS with private funding. Accepting gifts from charities or families allows them to bypass the long and labor-intensive process of applying for an NIH grant they might not receive.
Beth Pollack studies the shared qualities of complex chronic illnesses at MIT, and knows the grant-writing struggle well. Her group is trying to conduct studies across diseases, which means including various cohorts. Part of Pollack’s job as a research scientist is to secure funding for those extra groups. “Adding multiple illnesses adds complexity. It also adds cost,” she said.
There aren’t many funding opportunities for that kind of work, even though there’s been a slight uptick in recent years, Pollack told STAT.
Donations can allow for more flexibility, for example allowing researchers to quickly pivot in light of a new insight, said Akiko Iwasaki, whose lab at Yale School of Medicine studies long Covid and the immune response to other viruses.
“But of course, we shouldn’t rely on the goodwill of people to have to do all this funding,” she said.
A new entity to encompass these diseases would make sense, so researchers aren’t “confined to an organ system” or particular pathway of disease. “We don’t know what we’re going to find,” she said. Something like an R01 system, wherein investigators can come up with ideas and submit unconventional research proposals, could also foster scientific innovation, Iwasaki said.
Long Covid’s coattails
In some ways, the emergence of long Covid and the attention it’s gotten from federal leaders has been a boon to other neglected diseases. ME/CFS researchers and patient groups, for example, say they’ve seen a significant increase in their visibility and perceived legitimacy — even if it hasn’t necessarily been accompanied by a huge increase in money. Before the pandemic, one analysis suggested ME/CFS received a disproportionately low amount of research funding when compared to the burden of the disease — $15 million per year, at most (almost $6 billion went to cancer research and $2.4 billion to studying heart disease).
That dynamic hasn’t changed much, says Leonard Jason, a long time ME/CFS researcher and professor of clinical psychology at DePaul University who wrote the pre-pandemic funding study. While long Covid appears to have a clear trigger, ME/CFS still struggles to get the same consideration because scientists haven’t found its root causes, he said.
The same goes for other chronic conditions that would be housed in the new NIH body, diseases like Lyme, POTS, and mast cell activation syndrome, which causes symptoms similar to a severe allergic reaction. They all have some central question that hasn’t been answered, and therefore struggle to get scientific buy-in outside of the small communities of passionate researchers focused on them.
The NIH, as the largest research funder in the world, has the power to shape public perception. Where funding goes, research interest follows. Then, industry flocks to potential treatment targets. That’s often how progress happens. “You’ve got to have money,” Jason said. “And if money is not easy to get, people go to other fields.”
‘It’s really exciting’
RECOVER has gotten a historic amount of funding — an encouraging sign to many advocates — but it’s not a permanent solution, said McCorkell of the Patient-Led Research Collaborative.
“What’s being invested in is not going to get us the answers that we need right now. The observational cohort is not going to find us the cures for long Covid,” she said, arguing that long Covid needs a regular line item in the NIH budget instead of being reliant on the whims of Congress and its “haphazard appropriations” process. (McCorkell is a patient representative for RECOVER.)
She, like other patients, is acutely aware of the millions of sick people waiting on treatments. The sum of chronically ill includes the millions of Americans estimated to be newly sickened by long Covid, as well as others who have been sick for years.
Rivka Solomon, a patient-advocate involved in the NIH effort, first came down with mononucleosis as a college student in 1983. She’s been ill almost nonstop since, rarely able to leave her home due to her unrelenting exhaustion and cognitive dysfunction. For much of the past 40 years, her advocacy work has felt like “shouting into the wilderness,” she said. The pandemic changed that, presenting a rare opportunity to advance understanding of these conditions, she said. “It’s really exciting. And the question is, will NIH take the leadership here?”
Not only did the public start listening to people like her, but the economics of post-infection chronic illnesses came to light: Harvard professor David Cutler estimated long Covid would cost the economy over $3 trillion if at least 9 million people developed long Covid — a figure that “rivals in aggregate the cost of the Great Recession.” A Brookings report in 2022 found about 3 million full-time workers in the U.S., or nearly 2% of the workforce, were out of work due to long Covid — totaling $168 billion in lost earnings each year. All of the things Solomon had experienced firsthand were finally getting acknowledged, and quantified.
The makings of an ‘Office of IACIR’
Creation of a new entity could take a few different routes. NIH Director Monica Bertagnolli could use the Common Fund, a pot of money that directly supports creative, short-term research priorities, to pay for a small office.
At the very least, a bit of money could pay for research coordination across NIH, proponents say. Common Fund money has the added bonus of only requiring the director’s OK, instead of Congressional action.
Bertagnolli, the new NIH director, told STAT in January that she’d like the agency to “start focusing on some of the fundamental causes of disease across all institutes: inflammation, metabolic syndrome, immune system dysfunction. … To have all hands on deck, really tackling their root causes.” She has not spoken publicly about the proposal, or whether she would use the Common Fund for this purpose. She could not be reached for comment.
Another option is that Congress could pass legislation to create a new Office of IACIR, as it did to make the Office of AIDS Research in the 1980s. That office now oversees a $3.3 billion research portfolio across the NIH.
Several advocates told STAT they want to follow the AIDS office’s example. The current burden of long Covid and related post-infectious conditions is a health crisis and deserves a similar response from the government, they argue. Senators, including Bernie Sanders (I-Vt.), Tim Kaine (D-Va.), and Ed Markey (D-Mass.), have also called for stronger action on long Covid. And Congress recently infused more money into RECOVER, the NIH’s study of long Covid, despite widespread concerns over the project’s slow start. Swaying members of Congress to pour additional funding into separate long Covid research could be difficult, experts told STAT.
Regardless of administrative format, frontline clinicians and physician-scientists should be involved “at every level,” to best determine whether patients are actually sick from a previous infection or some other undiagnosed condition, said Shelli Farhadian, an assistant professor of medicine who studies Covid’s effects on the brain at Yale School of Medicine. She worries some patients might be getting lumped into the long Covid category when they’re actually dealing with other underlying issues.
“We do need to understand more about the small group of people who really are suffering from a post-infectious, and usually immune-mediated, disorder. That’s real. I see those people in my clinic and I want to understand what’s causing that problem,” she said. “But I want to better understand why those questions can’t be answered and asked under the current NIH structure.”
The NIH does, after all, fund research into these chronic conditions with viral roots. It’s just not up to the level of funding that advocates and some researchers want.
In Taylor’s mind, the funding should be $1 billion per year. “And I know it’s big and hairy and scary — $1 billion a year is nothing to sneeze at,” she said. But HIV/AIDS research got several trillion dollars in the first few years after it became a priority, and that investment got results.
The same could be true for long Covid, ME/CFS and similar conditions, she said. “I truly believe that if we spent five years at $1 billion a year, we would have treatments for this community.”
Ideally, this effort can get bipartisan support, Solomon said. But it’s still unclear whether members of Congress will bite, given other funding priorities and some of the contention around spending on scientific research.
STAT’s coverage of chronic health issues is supported by a grant from Bloomberg Philanthropies. Our financial supporters are not involved in any decisions about our journalism.