Advocates are pushing for new research funding for Long COVID and myalgic encephalomyelitis (ME) in the U.S. government’s fiscal year 2027 budget. Securing funding through Congress’s annual budget process could set precedents for longer-term resources, advocates say.

MEAction is calling on Congress to fund the ME/CFS Research Roadmap, a strategic plan for the National Institutes of Health (NIH) to advance ME research developed over two years in consultation with leading scientists. A Senate committee overseeing the NIH’s budget is considering including MEAction’s $50 million proposal in its bill draft — which would be a major leap for a disease that’s historically been drastically underfunded compared to its burden.

There are also opportunities for Long COVID funding across different budget proposals. Next year’s budget could support more studies in the NIH’s RECOVER program, additional clinical trials and diagnostic research, research through the Department of Defense, and efforts at the Advanced Research Projects Agency for Health (ARPA-H), which has started incorporating infection-associated chronic conditions (IACCs) into some of its programs.

Continued COVID-19 surveillance requires new funding, too. A House of Representatives committee has taken up a proposal from infectious disease and public health organizations to fund the national wastewater surveillance program at the Centers for Disease Control and Prevention (CDC) in fiscal year 2027, though this appropriations bill does not include a specific funding amount.

On the federal government’s budget schedule, fiscal year 2027 actually starts on October 1, 2026 — meaning the next few weeks are a crucial time for people to contact their representatives about funding key programs. September 30 is the annual deadline for deciding the next year’s spending, but Congress often pushes that deadline to later in the fall. There are already pending bills that would push this year’s deadline into December, with congressional leaders aiming to avoid another shutdown like last year’s.

Since the start of the pandemic, federal Long COVID funding has mostly been concentrated in specific initiatives, such as NIH RECOVER and the Long COVID Care Network at the Agency for Healthcare Research and Quality (AHRQ). Lawmakers have proposed different bills to increase that funding, like the Long COVD Moonshot Actproposed by Sen. Bernie Sanders, but none have been passed into law. Unlike these dedicated bills, current efforts focus on adding Long COVID and ME funding into the massive spending package, called appropriations, that Congress is legally required to pass every year.

“Appropriations is the most straightforward way to get dedicated funding for a specific research program within the NIH,” said Laurie Jones, executive director of MEAction. If a program is funded in one year’s appropriations bill, it “sets a good precedent for the future,” she explained. After funding passes for one year, in upcoming years, “it will be less of a battle to at least maintain funding or even increase it.”

While appropriations funding may be more immediate and more likely to pass in the current political climate, it’s important to also keep pushing for big stand-alone Long COVID legislation, too, said Meighan Stone from the advocacy group Long COVID Campaign in an email. “Even bills that don’t pass can establish priorities, funding levels, and momentum,” she wrote.

This funding push comes amid an administration that’s largely failed to serve people with Long COVID and related diseases. Despite Health Secretary Robert F. Kennedy Jr. repeatedly stating that Long COVID is a priority for him, under his leadership, the federal Department of Health and Human Services (HHS) abolished the Office of Long COVID Research and Practice, terminated a Long COVID advisory committee, and threatened research funding, while the administration at large has cut Medicaid and other programs on which many people with disabilities rely.

HHS has taken limited action toward promises made nearly a year ago at Secretary Kennedy’s roundtable event on Long COVID. It posted a new website dedicated to Long COVID and is hosting a “tech sprint” with teams developing new tools for Long COVID and other IACCs. The sprint includes up to $2 million in prizes for winning teams; HHS has yet to announce specific funding amounts for any other new Long COVID–related initiatives, and some other items on the agency’s webpage still say “coming soon in 2026.”