Colorado Public Radio originally published this story at 4 a.m. on February 29, 2024.
Nearly 237,000 Coloradans might currently have long COVID, and another 410,000 might have had it but recovered. That’s according to a second annual state report on long COVID that claims about one in five people now affected have severe symptoms that “greatly reduce their ability to carry out day-to-day activities.”
Additionally, wait lists are up to six months at Colorado’s three clinics that treat the ailment — two in the Denver metro and one in Grand Junction. Together, the clinics have seen about 10,000 patients since 2020.
“It was emotional to read quotes from other people, to see that what others have gone through, others have lost their jobs,” said Tara Friedman, a long COVID patient from Highlands Ranch.
Friedman had to sharply cut back her work as a fundraiser after getting COVID-19 in early 2022. Her long COVID symptoms were neurological, with intense brain fog and fatigue. She credited the state with “assessing and sharing the impact—the deep horrendous impact—this is having on a lot of families. I appreciate them gathering that data.”
Still, Friedman said she's struggled to find adequate treatments and hopes research can find the root cause of long COVID.
“I just wish there was more of a translational research response to this condition, that we're not just throwing band-aids on symptoms,” Friedman said.
Long COVID alters lives, often significantly, impacting work, school, and finances
The 72-page report was issued by the Office of Saving People Money on Health Care, directed by Lieutenant Governor Dianne Primavera, and is a deep dive into the mysterious condition. It defines long COVID as “a wide range of new, returning, or ongoing health problems people can experience four weeks after being infected with the virus,” causing debilitating illness that can last “weeks, months or even years,” significantly limiting daily activities for sufferers.
About 15 percent of Colorado adults reported having developed long COVID, while a little more than five percent of adult Coloradans reported currently experiencing long COVID in October 2023, according to the data.
The state’s report cites national Kaiser Family Foundation data from 2022 about the condition’s often outsized impact on the workforce and personal finances, with more than half of working-age adults with long COVID who were working before infection unable to return to work as normal.
Of those who had long COVID, seven in 10 said they worked full time before the long COVID infection. That dropped to about four in 10 during the pandemic.
About a third of those who couldn't work full time had to reduce hours, and a quarter were out of work.
Friedman said she could relate to the troubles spotlighted by the data.
“I lasted two months at what was supposed to be my dream job, and I had to quit,” she said, noting she was initially denied short-term disability, appealed, and was ultimately approved a three-month short-term disability.
“I didn't work for a year at all and have slowly been coming back, working five to 10 hours a week,” Friedman said. She described having to take daily naps to deal with heavy fatigue.
“I'm sleeping through my marriage and my children's important years, and I've slept away a really successful career,” she said. “Fatigue is rough. I have a lot of screen sensitivity, so I can't look at a screen for very long. I get headaches.”
“We each were impacted by COVID in our own way,” Primavera said in a press release. “But for some, contracting COVID has altered the course of their life, from their educational opportunities, ability to work, finances, and daily care.”
The state is finding ways to respond to the mysterious illness
The report was mandated by Colorado House Bill 22-1401, sponsored by Sen. Dominick Moreno and Rep. Kyle Mullica. It asked the state to assess the preparedness of the state's health system to respond to long COVID.
“I've seen 23 providers, including 14 doctors at three different long COVID clinics and other private practices,” said Friedman. She also said her now 12-year-old son got COVID in 2022. “He had long COVID symptoms for almost a year,” she said. He missed 42 days of fifth grade.
“Thankfully, he is doing fantastic now.”
The report notes the condition affects children and adolescents. Recent research shows long COVID happens much less frequently in children than adults, with mild and temporary impacts for most, though symptoms can disrupt schoolwork and social lives.
However, “systematic data are lacking on pediatric long COVID,” it stated.
“Long COVID impacts a substantial number of Coloradans, many of whom face major challenges in returning to everyday life after their illness,” state epidemiologist Dr. Rachel Herlihy said in the release.
“If you have long COVID, you are not alone, and there is help,” said Herlihy. “Talk with a health care provider to learn more about treating and managing your symptoms.”
Friedman said she’s struggled to find treatments that work. Though, she recognized the difficulty coordinating the medical treatment of a disease that can cause so many symptoms, all over the body.
It has just been so slow going,” Friedman said. “The community of long COVID patients and advocates is way ahead of the medical community because we talk to each other. And there's people who have had long COVID for four years who are finding treatments that still aren't even being researched.”
She said low-dose Naltrexone had worked best for her. That’s a medication approved by the Food and Drug Administration to treat both alcohol use disorder and opioid use disorder. A 2022 study found it was safe for those with Post COVID Syndrome and “may improve well-being and reduce symptoms.”
“I found acupuncture and neurofeedback provide short-term relief,” Friedman said. In the desperate search for treatment, she said, many long COVID patients are turning to unusual potential remedies, like the nicotine patch.
“I tried it. It did not work for me, but it's an example of just the wild stuff people are trying,” said Friedman.
