“WE’RE FIGHTING FOR OUR LIVES”
More than 200,000 patients in state still struggling as world moves on
Chelsey Baker- Hauck hoped to celebrate her 50th birthday by hiking across Scotland, but when the day finally came this month, she was relieved just not to have to spend it in a chair at an infusion center.
The Denver resident keeps a typed list of her persistent health symptoms that runs a page and a half, not including the ones that resolved within the first six months after her initial COVID- 19 infection. Her existing symptoms got worse, and new ones developed after a reinfection — at least temporarily after receiving the vaccine — leading her doctors to conclude her immune system was mistakenly targeting its own tissues when it mobilized against the virus’ spike protein.
As a result, Baker- Hauck has suffered a loss of feeling and difficulty moving on her left side, abnormal heart rhythms and trouble chewing and swallowing — to the point that it can take hours to finish a meal.
It’s still not entirely clear why her immune system changed drastically after her first COVID- 19 infection, with new symptoms developing while older allergies and conditions went into remission. But the result is an attack on her autonomic nervous system, which controls involuntary functions such as heart rate and digestion.
“It’s not the COVID that’s trying to kill me at this point. It’s my immune system,” she said.
Baker- Hauck is one of more than 200,000 people in Colorado who have experienced what has become known as long COVID — a constellation of new or worsening symptoms that developed after surviving an initial infection by the virus. People who have long COVID aren’t contagious, and many are dealing with health problems that bear little resemblance to those they had when fighting the virus, like excessive fatigue, heart palpitations and “brain fog.”
More than three years after some of the
first COVID- 19 patients realized they weren’t getting better, the world has some answers about who is most at risk and how to decrease the odds patients will develop lasting symptoms. But doctors still may not be able to give patients a clear answer about what’s causing their continued illness, meaning treatment still involves some guesswork.
Baker- Hauck and other longCOVID patients in Colorado who spoke to The Denver Post about their experiences all said they’re concerned about being forgotten as most people return to their prepandemic lives. All mandates to take precautions have been lifted, and the federal government ended the public health emergency in mid- May.
Even in hospitals, people rarely wear masks, making it more dangerous for people with long COVID who need to avoid another infection, Baker- Hauck said. And patients are largely on their own, trying to find care and figure out how to pay for it while seriously ill, she said.
“Everybody’s moving on from COVID, but there’s a huge population of people like me who can’t and may never be able to. We’re fighting for our lives,” she said.
The Census Bureau’s Household Pulse survey found about 15.1% of adults nationwide and 17.9% of adults in Colorado reported they had symptoms that lasted at least three months after a COVID- 19 infection. About 5.6% of adults nationwide and 7.6% in Colorado said they were still dealing with symptoms when the data was collected in late April and early May.
A state report published in December estimated 228,000 to 651,000 people in Colorado could have had long COVID, depending on assumptions about what the odds are that any particular group will develop it. It noted that some of them likely have gotten better over time, so it’s not clear how many people are experiencing major life disruption now.
More than three- quarters of people who said they had long COVID in the Census Bureau’s survey reported some activity limitations, and 23.6% said the limitations were “significant.” About 1.4% of the total U. S. adult population said they have significant limitations, which would mean more than 4 million people are struggling in their daily lives.
Although Baker- Hauck has dealt with nerve pain, difficulty walking, vision problems, tremors and irregular heart rhythms, among other problems, she said she’s lucky in a few ways.
Her business clients stuck with her, allowing her to work parttime. She and her husband have insurance and had what seemed like a comfortable financial cushion, although it has been thinned significantly by medical bills. Her primary care doctor believed her symptoms were real and referred her to specialists who also took her seriously. And they were then willing to help her fight with her insurance company to get coverage for the infusions that seem to be helping quiet her immune system.
“I live in Denver. I have good insurance. I have a great primary care doctor who referred me to National Jewish ( Health) early” for treatment at the hospital’s long COVID clinic, she said. “I was able to scream loud enough, I guess, to be heard.”
Overlap with chronic fatigue
Three years in, researchers are still trying to define long COVID.
The National Institutes of Health’s Researching COVID to Enhance Recovery trial — known as RECOVER — identified 37 symptoms that are more common in people who had COVID19 than those who didn’t. It set up a scoring system for researchers, but the scores aren’t ready to use in assessing patients in the clinic, said Kristine Erlandson, site principal investigator for RECOVER at the University of Colorado.
It’s still worth identifying which symptoms are more likely to be linked to long COVID, though, because some conditions such as headaches and fatigue can have many causes, she said.
About 23% of people with long COVID assessed in RECOVER reported their only major symptom was the loss of smell or taste, while the others reported they became ill after physical or mental effort, a condition known as postexertional malaise. People who reported post- exertional malaise also tended to have other symptoms, such as general fatigue, brain fog, dizziness, gastrointestinal problems or heart palpitations.
The large share of people reporting post- exertional malaise suggests some overlap with myalgic encephalomyelitis, also known as chronic fatigue syndrome, Erlandson said. There was relatively little research into chronic fatigue syndrome before the pandemic. Now, studies are looking at patients’ blood for markers of excessive inflammation or signs that the immune system is attacking the body, she said.
“It’s thought that this is kind of a similar pathway,” she said.
This summer, CU will be part of a trial to find out if giving some long- COVID patients the antiviral drug Paxlovid improves their symptoms, Erlandson said. If it does, that would suggest that at least fragments of the virus persist in the body and may be driving inflammation in those patients, she said.
Other theories include that patients have antibodies targeting their own tissues, abnormal blood clotting, or damage to their mitochondria — the parts of a cell that perform metabolic functions and give energy. It’s possible that any of those causes may be affecting certain people and that one person may have multiple underlying problems.
Mike Brown, 49, said his initial infection in December 2021 put him in bed for about a week, but a few months later, he said he noticed “I wasn’t myself anymore.”
He said he would have no memory of his wife telling him what she planned to do that day, even if she’d mentioned those plans multiple times. Sometimes he would forget words, substituting “ketchup” when he meant “salad dressing,” for example. His two children thought it was funny, and sometimes he wasn’t sure if he was truly frustrated with them or if the irritation was just another symptom.
“It really messes with your mind,” he said. “You can’t trust your brain.”
Before he realized he would have to limit physical activity, Brown said he might mow the lawn of his home in Highlands Ranch and not be able to get up for the next two days. He had to take short- term disability from his job as a software developer because even the mental exertion of long meetings sapped him of energy for the rest of the day.
“I couldn’t walk around the block anymore. I’d feel like my legs were encased in concrete,” he said.
Occupational therapy helped him to identify the signs he could be overdoing it so that he could plan to rest before it got worse, Brown said. Although his boss has been understanding and tries to make it easier for him to continue working part time, many people don’t understand a largely invisible disability, he said.
“It’s like having your needle broken on your gas meter and you don’t know how far you’re going to get,” he said. “You don’t want to waste your energy.”
Good health helps, but doesn’t protect
The RECOVER trial found about 10% of people enrolled who had COVID- 19 were still experiencing at least some symptoms six months later. Other studies have come up with estimates ranging from as low as 6% to more than 50%, depending on the group studied and the definition used.
The risk was higher among unvaccinated people, women, people infected before omicron became dominant, and those between ages 45 and 65. Other research has found that people who became more severely ill or who had health problems before getting COVID- 19 are at higher risk for new or lingering symptoms, while small studies pointed to unhealthy lifestyles; preexisting anxiety or depression; or even air pollution as possible risk factors. More work needs to be done, however, to sort of if those factors are themselves important or are linked to something else that’s driving the risk.
But being in generally good health and having a mild case won’t necessarily protect a person from long COVID. Ty Godwin, 60, kept training for a race through what he thought was an ordinary respiratory bug in March 2020. The state largely shut down shortly before the race, but he opted to run on his own as part of a fundraiser.
“The next day, my body just crashed,” he said.
Godwin, of Denver, kept working through much of 2020 despite having fatigue, body aches and a fever that lasted about 100 days. He wasn’t diagnosed with long COVID until about a year later, and his symptoms have gotten worse since, with increasing nerve pain and brain fog, as well as severe dry eyes and difficulty breathing.
So far, nothing has helped, including antiviral drugs and naltrexone, a medication used to treat alcohol addiction that’s being studied as a way to lower inflammation in long COVID patients.
Godwin said he has sought testing in California and Oregon to determine whether his inflammation could be controlled or if blood clots might be to blame for some of the symptoms, but that’s not feasible for most people. He estimated he spent about $ 15,000 out of pocket on medical care in 2022, on top of about $ 20,000 in bills to his insurance.
“I hate to use the term ‘ fortunate,’ because this is devastating,” he said. “But I’m more fortunate than many.”
Godwin said he’s frustrated by the pace of the National Institutes of Health’s research and by people who harass others who are still trying to protect themselves by wearing masks. Instead of blogging about training for marathons, as he did before getting sick, he now writes and posts parody videos pushing back on the idea that COVID- 19 is nothing to worry about anymore.
“This is a one- in- 100- year supercharged pandemic, and we’re pretending it’s over,” he said.
Lily Griego, regional director for the U. S. Department of Health and Human Services, said the Biden administration is taking an “all of government” approach to long COVID, with a focus on people who are the most medically and socially vulnerable. That includes a national research plan and listening events with local governments and nonprofits, she said.
“Now we are shifting gears ( from the public health emergency) to focus on long COVID,” she said.
“A mass, growing, disabling event”
Right now the only sure way to prevent long COVID is to not get COVID- 19, which is increasingly difficult when most people are no longer taking precautions. Vaccinated people do appear to be less likely to have post- viral symptoms, although the exact size of the reduction in risk isn’t clear.
Studies found that patients with excess weight or obesity who took the diabetes drug metformin had a lower risk of long COVID, as did patients treated by the Department of Veterans Affairs who took Paxlovid. It’s not clear if more- diverse populations would see the same results.
Second infections appear about 40% less likely to produce new long- COVID symptoms than first infections. But that means people who were infected repeatedly still face greater risks than those who only got the virus once.
For Jessica Bray of Evergreen each of the three times she was infected worsened her long COVID symptoms: difficulty breathing, a fast heartbeat, chest pressure and pain, brain fog, headaches, blurry vision, rashes and muscle pain.
Exertion leads to a “crash” a
few days later, and because her doctors haven’t been able to offer any treatments that made a difference, she spends most of her time in bed. After her first infection in March 2020, Bray said she was able to function relatively normally for a week or two at a time before crashing, but “the trigger got finer,” and it takes far less to cause a relapse now. It’s been especially difficult for her two young daughters, she said.
“I have to plan out if there’s one thing I can do a day,” she said.
Bray, 39, said she was in good health before getting COVID- 19, other than occasional migraines. She’s not sure if she eventually will be able to return to normal life, particularly given the risk of being exposed to the virus again if she’s ever well enough to go out, and feels that officials have failed to account for and protect people who need to avoid infection.
“It’s going to be a mass, growing, disabling event,” she said. “Ignoring the problem won’t make it go away.”
Emotions matter, but it’s not all in the head
Although awareness of long COVID has increased with time, some patients still report difficulty getting their doctors to believe them.
Michaela Smith, 32, of Colorado Springs, said her primary care provider thought anxiety was causing the symptoms that developed after her infection in November 2021, which included extreme sensitivity in her skin, difficulty following conversations, a nearconstant stomach ache, vomiting and sudden, intense emotions. The allergist she saw because of new sensitivities to certain foods also thought it was in her head, telling her that tests showed she was fine, she said.
“But I went, ‘ Nothing is fine,’ ” she said.
Providers shouldn’t dismiss patients’ long COVID symptoms as all in their heads, but there is a clear link between mental health problems and worse functioning that shouldn’t be ignored, said Jim Jackson, director of behavioral health at Vanderbilt University’s Intensive Care Unit Recovery Center and author of “Clearing the Fog,” a book about long COVID.
Cognitive symptoms and depression tax the brain, making it more likely that patients will make mistakes like leaving a store without paying or driving off with the nozzle from the gas pump still in their tank, he said.
“They’ve already got a brain that is pretty overwhelmed,” he said. “When they have other issues going on like ( post- traumatic stress disorder) and depression … those accelerate the impact of those biological deficits and they create havoc in the lives of those people.”
A different allergist prescribed antihistamines, which seemed to make things worse, Smith said. Without much other guidance, she decided to try qi ( pronounced chee) gong, a Chinese practice that involves gentle movement with attention to breathing. Qi gong hasn’t been researched in long COVID, but small studies found some benefits, such as improved sleep and reduced pain, in people with other chronic illnesses.
Smith said she still struggles with digestive symptoms and hasn’t resumed driving. But she can concentrate well enough to work part- time and do things such as play Scrabble with her family. The seemingly random fluctuations in body temperature and nerve pain also went away, she said. She thinks the anxiety she experienced was a reaction to the virus, and that the qi gong calmed her system enough to allow healing to start.
“There’s a lot that goes on in the physical body that manifests emotionally,” she said.
Dr. Kyle Leggott, a family practice doctor with CU Medicine, said there is a history in health care of doubting patients when they have poorly understood conditions, such as chronic fatigue syndrome or fibromyalgia, which causes fatigue and widespread pain. He’s working with the Colorado branch of Project ECHO ( Extension for Community Healthcare Outcomes) to provide training for primary care providers
who see long COVID patients.
“So much of what we do ( in primary care) is chronic disease management, and long COVID seems to be moving into the category of chronic disease,” he said.
Project ECHO coordinates opportunities for primary care providers in rural areas to learn from specialists and to discuss what’s working for their patients, Leggott said. Although some doctors may have had a different experience, he said managing fatigue without a clear and treatable cause wasn’t part of his medical training.
Doctors need clearer guidelines about which patients will do well in primary care and which need help from multiple specialists at a long COVID clinic, Leggott said. Insurers also need to look at increasing compensation for seeing long COVID patients, because the model of paying for short office visits doesn’t work with complicated conditions, he said.
“I would find it difficult to talk to a patient comprehensively about their chronic fatigue in a 20- minute visit,” he said.
Still no clear set of treatments
While the growth of long COVID clinics has created an infrastructure to care for new patients, there isn’t yet a strong evidence base for how best to treat those who had relatively mild cases of the virus, said Dr. Nir Goldstein, director of the Center for PostCOVID Care and Recovery at National Jewish Health in Denver. When the virus makes someone seriously ill, the lung and brain damage they suffer is comparable to people who were in intensive care for other reasons, he said.
“That we are feeling comfortable treating, because it’s not that different,” he said. “The more challenging group, and the larger, is this long COVID group that had relatively mild disease.”
For the time being, diagnosing long COVID still mostly means ruling out anything else that could explain patients’ symptoms, Goldstein said.
“COVID has affected most of the population now, but the other diseases are still there,” he said.
Dr. Jinny Tavee, chief of neurology and behavioral health at National Jewish Health, said before the pandemic she would see sporadic cases of similar symptoms in people who had other viral illnesses. The prevailing theory was similar — that patients’ immune systems were overactive — but it never affected people on this scale, she said.
“I’ve seen this over 20 years,” she said. “I’ve never seen it in 23 million people ( nationwide) at a time.”
Even though it’s not an entirely new problem, treatment options are limited, Tavee said. Typically, she’ll prescribe oral or intravenous steroids or sometimes intravenous immunoglobulin, which is made by taking antibodies from donated blood. But it’s difficult to get insurance to pay for that, she said. Immunoglobulin costs more than $ 9,000 per dose.
Patients also can benefit from cognitive rehabilitation, which teaches them ways to compensate for problems in their memory, processing speed or attention, Jackson said.
That might mean coaching people on how to break down complicated tasks into simpler steps or teaching them ways to use reminders so they can accomplish the things they want or need to do, he said.
“We may not be able to fix those ( cognitive deficits), but we can teach you strategies to compensate,” he said. “We see a lot of people who get a lot better.”
It’s frustrating for patients to not have answers after three years, but research into long COVID is going far faster than it does for most illnesses, Erlandson said. The way the RECOVER clinical trials are set up hopefully will speed that work further, because they can reuse the same control group, rather than having to give half of people a placebo every time they want to test a treatment, she said.
“From the research side, it’s been incredible,” she said.
Connections to dementia, MS?
Some scientists are raising the alarm that a new wave of disability could be coming in the future, though.
Daniel Linseman, who researches neurodegenerative diseases at the University of Denver, is studying whether people who had had a concussion at some point had a higher risk of long COVID. Preliminary results showed they did and that people who developed long COVID and had a history of concussions had particularly high levels of brain inflammation.
If the same results bear out in larger numbers of people, that would suggest that treating the inf lammation could help control patients’ symptoms, Linseman said.
“I think those ( hits to the brain) all mount up over time,”
he said, although it’s likely some people are more genetically susceptible.
In the meantime, the overlap suggests that long COVID patients might benefit from rehabilitation used after a concussion, said Bradley Davidson, an associate professor at DU who studied whether assessments for concussion severity also worked on long COVID patients. What that looks like depends on patients’ symptoms, with balance exercises for people struggling with dizziness and cognitive training for people with brain fog, he said.
“I guess the big lesson is to be looking for treatment in unlikely places,” he said.
The findings have a less hopeful side. Brain inf lammation also increases a person’s risk of dementia, and it’s not clear how many people who have long COVID now might develop Alzheimer’s disease or similar conditions when they otherwise wouldn’t have, or earlier in life, Linseman said.
COVID- 19 infection also appears sometimes to reactivate viruses that were lying dormant in the body, including Epstein- Barr virus, which causes mononucleosis and infects the vast majority of Americans at some point in their lives. That’s particularly worrisome because reactivated Epstein- Barr is a major risk factor for multiple sclerosis, Linseman said. Although it’s not guaranteed that the country will see an increase in multiple sclerosis — which causes symptoms from numbness and tingling to partial blindness and losing the ability to walk — it’s a possibility we need to prepare for, he said.
“I just fear we’re going to see that happen,” he said.
“Everyone has a chance to get better”
Some long COVID patients do improve over time, either on their own or with treatment. A poll by the Kaiser Family Foundation found the percentage of adults reporting long COVID
symptoms has decreased over time, and more than half of people who reported they had symptoms at one point no longer did as of January. About 5% of all adults still reported some limitations on their daily activities because of post- COVID symptoms.
Jackson, from Vanderbilt’s Intensive Care Unit Recovery Center, said that in his experience, people who were less severely ill have a better chance of improving with cognitive rehabilitation, because their brains sustained less structural damage than someone who had a stroke or insufficient oxygen flow while in the intensive care unit. But it’s impossible to know with certainty how much a patient may improve, he said.
“Long before COVID, people with brain injuries got better if they got the right treatment,” he said.
Baker- Hauck said she’s starting to see improvement from taking intravenous immunoglobulin, which allowed her to take a walk on her birthday and sometimes work a full day. The treatment is deeply uncomfortable because of inflammation in her veins and requires sitting in an infusion center for eight hours, but she said it’s worth it to stop further damage and give her body a chance to heal at least partially, although she doesn’t know how long the benefits might last or whether another infection would set her back again.
“I might have to keep doing this every other week for the rest of my life, but if I can work and have fun activities … it’s a miracle,” she said.
Some patients who weren’t helped by the more proven treatments have pursued other therapies — some with promising early evidence, like hyperbaric oxygen therapy, and some that are “out there,” National Jewish’s Tavee said. The most important thing is to stay connected to medical care and not give up, because there could be treatments coming, she said. “Everyone has a chance to get better,” she said. “We just don’t know enough.”
“They’ve already got a brain that is pretty overwhelmed. When they have other issues going on like ( post- traumatic stress disorder) and depression — those accelerate the impact of those biological deficits and they create havoc in the lives of those people.” — Jim Jackson, director of behavioral health at Vanderbilt University’s Intensive Care Unit Recovery Center