In a letter last month urging federal officials to fund research into “long COVID,” U.S. Rep. Pete Stauber revealed he dealt for years with the chronic condition, which can leave patients with debilitating symptoms well after a coronavirus infection.

In a March 9 letter to National Institutes of Health Director Jay Bhattacharya, the northeastern Minnesota Republican said he struggled with symptoms like vertigo, carpal tunnel syndrome, rheumatoid arthritis, hearing and sight deterioration before a diagnosis of long COVID. But a treatment protocol that followed helped symptoms subside within six weeks, he said.

“I truly believe that this diagnosis and treatment saved my life,” Stauber said.

Now, he’s urging the NIH to continue funding research and trials into long COVID and its potential treatments.

“I stand ready to work with you to address Long COVID and help the millions of Americans who have suffered from this devastating disease,” Stauber wrote.

Stauber’s office declined an interview with the Duluth News Tribune and did not respond to a list of emailed questions about his experience with long COVID and his advocacy for treatment.

The letter represents the most the congressman has shared about his experience with COVID-19, a respiratory virus.

Stauber’s public messaging on the 2020 pandemic largely criticized Democrats’ response, and he has so far refused to answer whether he’s been vaccinated.

Billy Hanlon, a 37-year-old Robbinsdale man who has long COVID and is an advocate for research of the condition, said he applauds Stauber for sending the letter and hopes it prompts others, regardless of political affiliation, to share their experiences.

“We know a letter doesn’t solve a problem,” Hanlon said, “but it does help create momentum and accountability that our community desperately does need.”

There’s no diagnostic test or biomarkers for the diagnosis and, therefore, no path for therapeutics. The Food and Drug Administration has not approved a treatment specifically for long COVID.

But with proper funding into research, Hanlon and others are hopeful that can change.

“My life’s work now is really involved in advocacy and trying to expedite and fast track research to be able to get to answers of, physiologically, what’s happening in the body? How does that lead to FDA-approved treatment so that millions of Americans can get back to their lives that they once recognized and the futures that they once envisioned?” Hanlon said.

In his letter, Stauber called on NIH to continue investing in research through programs like the RECOVER Initiative, which specifically investigates long COVID, or the Advanced Research Projects Agency for Health, which funds “high-potential, high-impact” research, according to its website.

Last year, the Trump administration cut, but later reversed, some research grants under the RECOVER Initiative. It also cut the Secretary’s Advisory Committee on Long COVID and Office of Long COVID Research and Practice.

Asked how NIH plans to invest in long COVID research and if Americans could trust the funding will remain stable, NIH, in an emailed statement to the News Tribune, pointed to its RECOVER Initiative, noting it received more than $650 million in congressional funding in 2024.

“The program continues to accept applications for pathobiology studies to advance the understanding of long COVID,” NIH said. “Just last month, the initiative expanded a clinical trial arm, creating new opportunities to participate in long COVID research.”

NIH did not say whether it responded to Stauber’s letter.

President Donald Trump’s proposed 2027 budget request released last week calls for a $5 billion cut, or nearly 11%, in NIH’s budget.

Hanlon hopes disruptions to funding are over and commitments to more funding for long COVID come through.

As noted in Stauber’s letter, U.S. Health and Human Services Secretary Robert F. Kennedy Jr. held a roundtable in September on long COVID, so the administration is thinking about the condition, Hanlon said.

But now Hanlon wants action — specifically, boosted and consistent research funding.

“The ones that will suffer when there are these different dynamics that slow down research, the ones that are hit the hardest are the millions of Americans that are depending on rapid progress,” Hanlon said.

In his letter, Stauber said he hoped more treatment options became available.

“I shudder to think of those who are still suffering in silence,” Stauber wrote.