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For most Americans, these late summer months feel like the calm after the COVID-19 storm. The United States appears to be moving toward what researchers call the endemic stage of the outbreak. Even though the virus is still widespread, COVID-19 is much less fatal than it was in 2020, and restrictions on public behavior are limited. For those suffering the effects of long COVID, a return to normalcy and full health is still elusive, but help and hope do exist.
"With long-haulers, you are working with a population that doesn't have much experience navigating the medical system, and then you hock them into the deep end and tell them to deal with this," said Jeanette Brown, MD, a pulmonologist at University of Utah Health, who has seen the suffering and frustration of long-haulers firsthand as director of the university's COVID-19 Long-Hauler Clinic.
In the year since the clinic opened in June 2021, Brown and her staff have seen more than a thousand patients and referred many of them to more than 40 types of medical specialists. "Long COVID is definitely something that affects a lot of people, and it affects your family and your friends too because it can be socially isolating," Brown said. She added that it can be "very difficult to treat because long COVID presents with such a huge variety of symptoms."
Long COVID symptoms range from mild to debilitating and include fatigue, difficulty breathing, joint, muscle, and chest pain, brain fog, headaches, depression or anxiety, and sleep problems. This wide range of symptoms and conditions makes long COVID so hard to define, diagnose, and treat. Even doctors like Brown, who have been following patients with long COVID for almost two years now, cannot always guarantee long-term care and follow-up.
Progress has been made and achievements attained over the past 15 months. Doctors working in and with the clinic have helped people suffering from sleep disturbances—one of the biggest complaints, along with the fatigue that often accompanies this post-viral condition. They have also treated patients with post-exertion malaise, a type of extreme exhaustion after limited exercise, by placing them on a personal program where they pace and monitor their activity. Complaints about headaches and their root causes have also been studied and treated when necessary.
Brown described the current situation at U of U Health's clinic this way: "At this point, our referrals are not slowing down. But I have been keeping track of the sub-specialists our patients get referred to, just to see how the people are doing. I also keep an eye on the Facebook groups. There are definitely patients that get better. The common description that I will hear, especially for the early pandemic folks, is, 'I'm 80 to 90% better.'"
Long COVID patient Lisa O'Brien was one of the first long-haulers in Utah to bring attention to the condition back in the spring of 2020. She is finally feeling good about her recovery from muscle spasms, blood clots, and a constantly spiking heart rate. "Most days now, I feel about 95% better," she said. "I am one of the lucky ones, and I don't know how that happened because I have a lot of friends who got COVID in the same time frame as me and are not even close to who they were before." Well beyond her friend group, O'Brien knows the impact long COVID has had and continues to have on Utahns.
O'Brien launched a Facebook group for Utah Long-Haulers back in June 2020 that now numbers over 5,000 members. She used the power of social media to reach out to others who needed early support and eventually a place like the clinic at U of U Health to get medical attention and direction. "I knew I didn't want people to go through this alone or to feel like they were alone," O'Brien said. "I also knew I was going to need to bring data to people that could help us and show them that this was going to be an issue. I knew they weren't just going to create this clinic going off my word for it that there was a problem."
For doctors like Brown and long-haulers like O'Brien, the clinic—and a growing number of research studies into the various effects of long COVID—have offered some early glimmers of hope in achieving a better understanding of who is at risk of getting long COVID, how to treat it, and how to hasten recovery from the condition. Brown has been impressed with how "incredibly altruistic" long COVID patients have been when it comes to helping doctors and researchers study this challenging and often life-changing condition.
O'Brien understands the importance of discovering clues to what has caused upwards of 30% of all those who contracted the virus to suffer its lingering aftereffects. "It's not going to happen overnight, but there are so many people who are looking into this right now that we have to come up with some answers," she said. "So, maybe that is me being hopeful, but I am trying to believe in science."
Brown believes strongly in the ability of researchers to get answers and improve the diagnosis and care of long COVID patients. However, she admits it will take time—something we all struggle to accept. "The major takeaway I have is we need to emphasize patient-focused outcomes," Brown said. "These are going to be more important in our research in the future. We need to study the things that matter to our patients and get them more involved in the research process." This approach could leave us all less vulnerable when another virus threatens our long-term health.
