Congress’s 2027 budget could include new funding for Long COVID and ME

Advocates are calling on senators and representatives to include the ME/CFS Research Roadmap and new Long COVID funding in the fiscal year 2027 budget as legislators debate appropriations bills in the coming weeks.

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 Act proposed 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.”

How the appropriations process works

The U.S. government has followed a similar process to set its annual budget for decades, though it’s been more contentious in recent years with intense political disagreements in Congress.

Among the many subcommittees, the most relevant for Long COVID funding is the subcommittee for Labor, HHS, Education, and Related Agencies (abbreviated as LHHS), which oversees the budget for all federal health agencies. The Defense subcommittees also oversee some research funding.

In theory, the full budget process is supposed to happen by September 30 of each year, allowing a new fiscal year to start on October 1. In practice, Congress usually has to give itself extensions by passing short-term bills that keep funding government programs at existing levels for a few weeks or months. If there’s no agreement at all, the government shuts down.

Last year, the U.S. government faced its longest ever shutdown from October 1 through November 12. Trying to avoid a repeat, the House and Senate are already working on short-term funding bills for fall 2026 that would extend current budget levels through December.

Funding the ME/CFS Research Roadmap

While it’s unlikely the full federal budget will be done in September, individual appropriations bills by congressional subcommittees are getting drafted and revised now — making the coming weeks a key time for advocates pushing for specific funding items. Jones, from MEAction, noted that the group has focused on advocating with senators on that chamber’s LHHS subcommittee as the equivalent House bill is already done.

Funding the NIH’s ME/CFS Research Roadmap would realize a long-term goal for ME advocates, Jones said: “Folks that came before me, particularly Beth Mazur and Jen Brea, were advocating for this for a long time, years and years.” The roadmap is a detailed strategy for the agency to advance ME research, developed over two years in consultation with leading advocates and researchers.

“Having a strategy to fund is so concrete, and it’s how the NIH funds bigger amounts of money in terms of disease research,” Jones said. But the roadmap has been stalled since the NIH published it in May 2024, with no dedicated funding.

MEAction is pushing for that funding in two ways. First, the organization has petitioned the NIH to reallocate funding from other areas of the agency’s budget to the roadmap, as it has previously for other ME research and for the RECOVER program. Over 7,000 people signed on to that petition, along with other ME and Long COVID organizations.

Second, MEAction and the group #NotJustFatigue are advocating for funding in the 2027 budget. Advocates met with HHS officials and congressional offices in May and have continued meetings over the summer, focusing on members of the Senate LHHS subcommittee, Jones said.

Having a strategy to fund is so concrete, and it’s how the NIH funds bigger amounts of money in terms of disease research.

Laurie Jones, MEACTION

“The bill has been more or less written, but the can has been kicked so far down the road that we still have time,” Jones said. “There is this sense of urgency that if we can get it in right now, it’s not too late, and we felt very hopeful after talking to Senator [Susan] Collins’s office and Senator [Shelley] Capito’s office.” Sen. Collins (R-ME) chairs the overall Senate appropriations committee and Sen. Capito (R-WV) cochairs the LHHS subcommittee, making them both important figures in the funding process.

In fact, funding for the research roadmap may already be included in the Senate LHHS subcommittee’s draft bill, according to Maine TV station WABI-TV. The Sick Times has not been able to independently confirm that this funding is in the bill.

Readers interested in helping advocate for the funding should “tell your elected official, whether they’re on [a Labor-HHS appropriations subcommittee] or not, that you care about the ME/CFS Research Roadmap and that getting it funded would save people’s lives,” Jones said. Calls or emails could be especially important for people who live in Maine and West Virginia, the districts for Sen. Collins and Sen. Capito, respectively, she added.

Other potential opportunities for Long COVID and IACC funding

There’s also a chance for the Senate LHHS appropriations bill to include new Long COVID funding. In April, senators Ed Markey (D-MA), Tim Kaine (D-VA), and Tammy Duckworth (D-IL) organized a formal letter calling on their colleagues to support $210 million for Long COVID research and care across the NIH, ARPA-H, and AHRQ’s 2027 budgets.

Hundreds of people with Long COVID and their allies called and emailed Senate offices encouraging their senators to sign onto the letter, organized by Long COVID Campaign, Stone said. While 14 senators officially signed on, “all Senate offices track constituent outreach, so every call and email put these priorities in front of lawmakers for FY27,” she wrote.

Stone is not yet sure of the final outcome of that effort, as the Senate appropriations bill is still in progress. “LCC will continue our Hill outreach and share any additional opportunities for our community to advocate for what it needs,” she wrote.

The Sick Times reviewed the House LHHS committee’s appropriations bill, which this subcommittee passed in June, as well as documentation from federal agencies, and found a few other potential areas for Long COVID and IACC funding in the 2027 budget.

The House bill specifically mentions Long COVID in a section about the NIH Office of the Director’s budget:

Diagnostics and Precision Medicine for Chronic Conditions. — The Committee remains concerned with the overall economic and population health effects of chronic conditions, including infection-associated conditions such as Lyme disease and Long COVID. The Committee encourages NIH to consider expanding opportunities to leverage AI and machine learning and corresponding precision medicine treatments for chronic conditions, including clinical trials for novel AI/ML [machine learning]-based mechanistic biomarkers.

The NIH’s summary of its own 2027 budget request to Congress also specifically mentions Long COVID; it describes the current status of the NIH’s flagship RECOVER program and lists some recent findings from RECOVER papers, such as differences in common symptoms between children and adults with Long COVID. However, the NIH didn’t explicitly request new funding for RECOVER in 2027.

In addition, ARPA-H’s 2027 budget request mentions IACCs as a priority. The document describes chronic diseases overall as a “key portfolio area” for the agency, and notes that, in 2027, “the agency aims to build to prevent viral illnesses that lead to chronic disease.”

When asked for more details about ARPA-H’s funding for IACC research, a representative from the agency said in a statement that “several active programs advance the science of IACCs, including and beyond Long COVID.” These include programs supporting research into the lymphatic system, improving vaccine effectiveness, and supporting the immune system during severe illness. These programs are “the operational follow-through” on comments that then acting director of ARPA-H Jason Roos made at the HHS roundtable event last year, the spokesperson added.

Outside the health agencies, additional Long COVID funding could come from the Department of Defense. The fiscal year 2025 Defense budget included Long COVID among its priority topics for biomedical research grants within the agency’s Congressionally Directed Medical Research Programs (CDMRP). The Senate Defense appropriations subcommittee could include Long COVID as a topic for CDMRP again for 2027, Stone said.

“There’s strong bipartisan support: Reps. Brian Fitzpatrick (R-PA) and André Carson (D-IN) led a 117-member bipartisan House letter supporting FY27 CDMRP funding and identifying Long COVID as a priority,” she wrote.

Stone said it’s key to contact Senate offices in the coming weeks, as these offices are still writing initial appropriations bills. “Senators need to hear directly from people living with Long COVID, caregivers, and families while FY27 decisions are still being made,” she wrote.

Senators need to hear directly from people living with Long COVID, caregivers, and families while FY27 decisions are still being made.

Meighan Stone, Long COVID Campaign

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Betsy Ladyzhets is a co-founder and the managing editor of The Sick Times. She will continue covering federal government efforts on Long COVID and IACCs. Send her tips at betsy@thesicktimes.org or betsyladyzhets.25 on Signal.

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