Hope has faded for legislation that would fund research for the millions of Americans suffering from Long COVID, according to some of the patients and advocates who testified before a first-ever congressional hearing on the topic a year ago this month.

Like many of the people who packed that U.S. Senate hearing last January, Scott Schneider of Golden Valley suffers from a debilitating disease known as ME/CFS.

“They’re just right now on the tipping point of going back to being treated just like people with ME/CFS for decades, just having been just forgotten and left behind,” he said on Sunday.

It’s been going on 10 years of pain and extreme exhaustion for Schneider, who said even sitting for this interview would force him back into bed.

“And it’s devastating, because every day I get up is just a little struggle, it’s a struggle to do the littlest things,” he said.

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Schneider spoke on behalf of decades of people who caught various viruses and never recovered. Patients have been waiting all along for ME/CFS to be more medically recognized, much less properly treated, he said.

Then more recently, COVID became a spotlight for the disease as Long COVID cases grew.

“We know that about 50%, depending on what study you look at, of people with Long COVID end up meeting the criteria for ME/CFS,” said MEAction Minnesota Chapter Chair Terri L Wilder. “So we know that it’s millions of people across the United States.”

It was somewhat of an ironically positive twist for longtime sufferers who packed that January 2024 congressional hearing, urging federal lawmakers to put more money, time and care into understanding and treating their lingering illnesses.

“If you look at every other major disease category, it is ME/CFS, Long COVID by far — especially ME/CFS, are greatly outspent,” Schneider said.

That moment brought him hope, he said, and so did subsequent legislation introduced in the summer.

Now, a year after that testimony, that bill — which would appropriate a billion dollars annually through 2034 — and Long COVID legislation in general has virtually stalled.

“Nobody knows they’re there. Nobody has talked about them, nobody has pushed,” Schneider said.

“It feels awful.”

“It’s billions of dollars on the line here to further science, to help educate medical providers across our country,” Wilder added.

“It also is a way to make sure that people get the medical care and the social services that they need. I mean, people’s lives have literally been stripped away.”

Wilder said she remains hopeful “that this will get to the finish line.”

Research currently happening on smaller scales across the country encourages her, but she said it’s not enough.

“No, there’s not enough investment right now for Long COVID and ME/CFS period. I mean, we’ve known this for a very, very long time,” she said.

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In the meantime, moves are being made in Minnesota. New state legislation is in the early stages and expected to be introduced this year, she said.

The Minnesota Department of Health is also expected to share the results of its Long COVID study in the coming weeks.