Chris Wexler of Edina, Minn. was among the long COVID patients and advocates who packed a U.S. Senate hearing on Capitol Hill late last week, pleading with members of Congress to put more money, time and care into understanding and treating the lingering effects of COVID-19.

“It’s the first hearing in Congress on long COVID since the beginning of the pandemic,” Wexler said in an interview back in Minnesota on Sunday.

Wexler, describing his experience since April 2020, said, “I’ve lost the ability to work. I have lost the ability to be out of bed more than four or five hours a day.”

As many as 16 million Americans currently suffer from long COVID, said committee chairman Senator Bernie Sanders, D-Vermont, adding, “We think we have not as a Congress done anywhere near enough, and we hope to turn that around.”

Minnesota Senator Tina Smith was also on the U.S. Senate Committee on Health, Education, Labor and Pensions on Thursday for the nearly three-hour hearing where patients shared stories of years living with severe symptoms — and without answers.

“I was a healthy runner for nearly two decades,” testified Angela Meriquez Vázquez of Los Angeles.

“What started as a mild illness progressed over weeks with an increasingly scary set of symptoms, including severe levels of blood clots, a series of mini-strokes, extreme confusion and numbness in my face, hands and legs that progressed to an inability to walk for several days,” she continued.

Nicole Heim, a mother of a previously healthy 14-year-old, also testified about a similar and lengthy list of symptoms that have kept her now 16-year-old daughter out of school.

“I’m watching my child suffer, I’m watching her sit down in the middle of a grocery store and just say, ‘I can’t go anymore,'” said Heim, who traveled from Winchester, VA.

“Meanwhile, I’m waiting. I’m waiting. I’m waiting. I’m waiting to find the answers.”

Sen. Sanders said long COVID is keeping roughly four million Americans out of work.

All the while, patients testified that their symptoms are either being brushed off or their doctors simply don’t know how to help them. They said they’re struggling to get health insurance coverage and disability benefits, and some are driving hours for care.

“And I think often our problems in health care, like you could just sort of multiply them for people that are living in more rural communities,” Sen. Smith remarked.

Wexler, like a few Minnesotans 5 EYEWITNESS NEWS interviewed in December, has myalgic encephalomyelitis/chronic fatigue syndrome, better known as ME/CFS. The debilitating disease, associated with profound exhaustion, was known for decades before it also became linked with long COVID.

“Prior to COVID, we knew this was coming, and we tried to alert everyone. We tried to sound the alarm,” said fellow ME/CFS patient and national advocate with the MEAction Network, Adriane Tillman.

Tillman said that so far, ME/CFS has not been included in long COVID research being conducted by the National Institutes of Health (NIH) and funded by taxpayers to the tune of $1.15 billion.

“Which is not insignificant,” Wexler said of the amount. “And so they wasted a dramatic amount of that money. It was truly embarrassing about how the NIH spent that money.”

Doctors and researchers also testified on Thursday, saying while vaccines were developed at “warp speed,” clinical trials for long COVID began at a “snail’s pace” as funding wanes.

Wexler and others before the Senate requested an investment of $1 billion annually going forward for research, namely to develop some medical screening tools and treatment, and they asked that at least some of the money go to researchers who have already been working on related post-viral conditions, like ME/CFS.

Asked to reflect on the hearing and what comes next, Wexler said, “We felt heard. I don’t know if we feel confident that the action is going to follow up. It was very much the first step.”

Testimony was also made about the importance of reaching people who are disproportionately impacted by long COVID, particularly people of color and low-income people.

Wexler said, thankfully, he can afford it, but medical bills cost him $40,000 last year alone.