One morning in July 2020, psychotherapist Christa Hines overslept her first appointment of the day. When Hines woke up, the right half of her face felt droopy, her mind clouded and her right arm was heavy as lead — all symptoms of a stroke.
But Hines didn’t have a stroke. Soon after the scare, she consulted a neurologist who diagnosed her with postural orthostatic tachycardia syndrome (POTS), a form of dysautonomia common among people who have Long COVID.
Fueled by the latest omicron variant, JN.1, the U.S. experienced one of its largest surges in COVID-19 infections at the beginning of 2024, according to wastewater data from the Centers for Disease Control and Prevention. Although Oregon’s virality rate was less than half of the national average, nearly one in six Oregon adults who contract COVID-19 also experience Long COVID as of March 2024.
Long COVID is a multisystemic condition that persists for months or years after an acute COVID-19 infection and has over 200 identified symptoms. According to a study by the Patient-Led Research Collaborative, Long COVID impacts the nervous system, causing dizziness, memory loss and irregular sleep; the heart, resulting in chest pain and palpitations; the respiratory system, leading to coughing and shortness of breath; the stomach, manifesting as nausea, abdominal pain and loss of appetite; the reproductive system, causing erectile dysfunction and irregular menstruation; and several other organs.
Four years into the pandemic, few protocols for diagnosing and treating Long COVID exist. Gina Assaf, a co-founder of Patient-Led Research, says scientists have several hypotheses on what causes Long COVID, including immune system dysfunction where the body either fails to eliminate the virus or produces an excessive immune response causing organ damage, but that these theories haven’t been confirmed yet.
“I had to relearn how to sit up, hold my head up and walk again,” says Hines. With dysautonomia, the basic functions of her nervous system, like regulating blood pressure and digestion, do not work properly and, because of POTS, her heart rate skyrockets whenever she stands upright. Once able to bike from Portland to Seattle, Hines now struggles to stand in line at the grocery store as a result of Long COVID and the many chronic conditions tied to it.
However, she didn’t always have that medical clarity. Hines first tested positive for COVID-19 in April 2020, but despite having extreme fatigue, lightheadedness and other neurological problems for months afterward, she says that doctors routinely dismissed her symptoms — Hines’ neurologist only diagnosed her with POTS and dysautonomia after she made the discovery herself.
“A lot of people were feeling quite isolated, not understood by their doctors and really challenged by the loss of their functioning level,” says Hines. Recognizing the need along with her unique background in trauma treatment and nervous system regulation, Hines created an online support group for “long haulers” in Oregon and Southwest Washington, or people with Long COVID since 2020.
Emma Smith, who first contracted COVID-19 in November 2020 and is now 25 years old, joined the group in March 2023. By that point, Smith had seen ten different doctors, quit her job at Freestone Climbing Gym in Missoula, Montana, and moved back home with her parents in Portland. At Smith’s first meeting, she listed off her symptoms. With each one, group members responded, “I have this too. You’re not alone.”
“When you’ve been sick for so long and you’re so young, to get validated and be heard like that,” Smith says. “I could start to breathe again and feel better that I’m not dying — I just have something terrible caused by a virus.
Smith has myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), another chronic condition prevalent among people with Long COVID. With ME/CFS, Smith experienced periodic post-exertional malaise (PEM) crashes that left her bedridden for a week or longer if she spent just a few hours climbing. After her second infection in July 2022, Smith’s symptoms worsened and she developed new ones: weakness and tremors in her limbs, weekly migraines and visual problems like seeing flashing lights or floaters in her eyes.
Althoughunvaccinated older people have a higher risk of developing Long COVID, as with Smith, Long COVID impacts even the young and able-bodied. One study found that women are 1.5 times more likely to develop Long COVID than men and, compounded with disparities in healthcare access and education, women of color are especially at risk. Moreover, contracting COVID-19 multiple times increases the likelihood of death, hospitalization and severe damage to organ systems.
Like Hines, Smith didn’t initially understand what was happening to her body — and neither did her doctors. Five different medical professionals told Smith that her physical symptoms stemmed from anxiety and depression. Smith tried three psychiatric medications to no avail. This persistent “medical gaslighting” left Smith utterly confused and caused her mental health to deteriorate: She fought suicidal ideation for four months, eventually ending up in a mental health crisis center in February 2023.
“When you’re in your twenties and you go to the doctor, you put a lot of trust in them,” says Smith. “My body was screaming at me, and to be told by these doctors that it was all in my head — that I just needed to power through it — was very invalidating and traumatizing.”
“There’s this assumption that doctors should know everything, and when they don’t, some behave in ways that I could consider gaslighting,” Assaf says. Many participants in her studies with Patient-Led Research also experienced medical gaslighting, and Assaf emphasized it was most common among women and people of color.
A few weeks following her release from the crisis center, Smith came across a Washington Post article discussing the relationship between Long COVID and ME/CFS. Over two years after her initial infection, Smith diagnosed herself with Long COVID. With the support group, though, Smith finally had a community who shared her frustration — the feeling of questioning herself — and who amassed a heap of useful resources.
The group divulged several strategies to help Smith manage her chronic fatigue, including pacing. Intended to reduce the severity of PEM crashes, Smith now chooses what activities she hopes to accomplish any given day, and if she starts to get fatigued, she rests instead of trying to push through them. By actively listening to her body, Smith only needs to rest a few days rather than a week after a bad crash.
For Hines, seeing a naturopath brought her the most relief. In her experience, naturopaths take a bottom-up approach to medicine by first identifying the root causes and then moving outwards. “That is the best practice when it comes to treating post-viral conditions which are complex and multisystemic in nature,” says Hines.
However, because Long COVID causes such a wide array of symptoms, each of which varies by individual, even a dedicated support group that knows a great deal about what to do or who to see can provide so much help.
Emily Rusthoven, a former nurse who recently moved to Eugene from southern Iowa, actively uses cannabis to manage her terminal pain and many chronic conditions: She has gastroparesis, Ehlers-Danlos Syndrome (EDS) and Mast Cell Activation Syndrome along with dysautonomia and POTS.
“It’s nice to connect with people and talk about how we’re all feeling, but a lot of them have different issues than I do,” Rusthoven says. “I feel out of place.”
Every day around 4 p.m., Rusthoven sorts through and takes over 30 prescribed medications. Soon after, she eats dinner through a feeding tube because of her gastroparesis, a disorder that essentially stops digestion and causes severe abdominal pain. Sometimes Rusthoven’s husband carries her to bed due to the extreme fatigue and discomfort that follows eating.
Now an insomniac, Rusthoven generally starts her day at 2 a.m. With EDS, a genetic connective tissue disorder that induces joint pain, hyper flexibility and weakens skin strength, she depends on a walker to move around and a wheelchair for longer distances. At 3 a.m., Rusthoven folds out her shower chair and adamantly does her makeup afterward.
“I’m really stubborn. I don’t want to lay in bed all day and complain,” Rusthoven says. “I want to try and feel good about myself.”
It’s been over four years since Rusthoven first contracted COVID-19. Since then, she’s lost her job, gotten her car repossessed, had to sell her house and given up custody over her 15-year-old daughter because she couldn’t provide care and manage her Long COVID symptoms at the same time — this is Rusthoven’s new normal.
Even with her medications and cannabis, she still deals with a significant amount of daily pain, depends on constant support from her husband and usually can’t make it past 10 a.m. without lying down. But Rusthoven, like Hines and Smith, found additional help at Oregon Health and Science University.
The doctors at OHSU’s Long COVID Clinic have worked with over 3,500 referred patients since its inception in March 2021 and is one of few places in Oregon that offers specialized Long COVID care. Recognizing the multisystemic nature of Long COVID, the clinic provides pulmonology, cardiology, neurology, primary care and physical rehabilitation services, among many others.
According to Dr. Aluko Hope, an associate professor at OHSU and medical director of the clinic, their treatment approach begins with listening to and validating patients. Their next step is communicating the complexity of Long COVID, how each case requires a unique plan and what patients need to know in the absence of federally approved treatments.
“The expectation that patients have about recovering from an illness is one that comes from a fiction where doctors figure out what’s wrong with them, give them a pill and they suddenly get better,” says Dr. Hope. “That’s not something available to us with Long COVID.”
While COVID-19 is still relatively novel, chronic conditions like dysautonomia and POTS have been around for decades. As Assaf explained, scientists have historically ignored researching and developing treatments for these disorders, advancements that could have been critical in mitigating Long COVID. According to the American Autonomic Society, the number of medical professionals familiar with POTS was already insufficient prior to the COVID-19 pandemic, and now there is a dire shortage.
“They don’t have a solution. They don’t have a medication they can give you,” Smith says. “Pacing is great, but it goes against every strand of my DNA — I was an athlete and I want to keep pushing my limits, I don’t want to pace.” While grateful for tailored care and more understanding doctors, Smith just wants to heal.
Patients turning to support groups rather than doctors. Lack of scientific knowledge and treatment options. Medical neglect that stretches far past March 2020. For Assaf, these factors point to a new paradigm — one that situates patients at the forefront of research and learning.
“With any new or misunderstood illness, the people best suited to lead and drive are people that are having the lived experience,” says Assaf.
Patient-Led Research, headed by five women who all have Long COVID, epitomizes this model, and OHSU recognizes the need for patient input too. In September 2022, OHSU launched a virtual education series on Long COVID as part ofProject ECHO (Extension for Community Healthcare Outcomes), a program that informs medical providers on specialized health conditions, specifically those caring for rural or other underserved communities.
“There’s a broad concept of who the experts might be, which allows the people learning to get a full sense of how to approach these complex cases,” says Dr. Hope. “It’s a bidirectional process where everybody grows and gets better from these kinds of interactions.”
Hines served as the patient representative for several ECHO presentations, during which she shared her experience with Long COVID and felt responsible to advocate for others. Having facilitated dozens of support group meetings, Hines couldn’t help but think about the many stories of people being lost in our medical system and utterly incapacitated by an invisible illness.
OHSU is also participating in two clinical trials funded by the National Institutes of Health as part of itsRECOVER (Researching COVID to Enhance Recovery) Initiative.One trial will test whether PAXLOVID, an antiviral drug already used by people infected with COVID-19 who have a high risk for hospitalization or death, can also treat Long COVID patients.The second will explore different interventions, such as brain training and stimulation, designed to mitigate the cognitive dysfunction associated with Long COVID.
The NIH devoted $515 million to its RECOVER Initiative in February 2023, but developing a concrete treatment for Long COVID will likely take years, all the while public health guidelines continue to erode. On March 1, 2024, the CDC declared that people who test positive for COVID-19 no longer have to isolate for five days, and the federal government suspended its free at-home COVID-19 test program shortly afterward.
There are 38 million U.S. adults living with Long COVID and around 485,000 in Oregon, according to a Statistica survey conducted in July 2023. Those figures have undoubtedly increased since, but Pew Research recently found that only 20% of Americans view COVID-19 as a major threat to public health.
As much as we want to find normalcy again, COVID-19 is still with us and millions suffer from debilitating, persistent symptoms that don’t have a cure. For those with Long COVID, returning to normal isn’t an option.
“Now, I don’t think I would be a nurse again, even if I could physically do it,” says Rusthoven. “It feels like everyone forgot about people with Long COVID.”
“We all feel isolated, lonely and abandoned by the world because everyone is moving on from COVID-19,” Smith says. “Yet we’re still here dealing with the ramifications of our infections.”
