Patients Find Peace and Answers at Stanford's Long Covid Clinic
Hector Bonilla, MD (left) and Linda Geng, MD, PhD
Brandie Parshall caught COVID-19 in December 2020, before vaccines were widely available. She described the sickness as a really bad flu that wouldn’t go away. Then there were the more unusual symptoms. It felt like a fire burned under her skin and in her chest. Sometimes her heart rate would suddenly shoot past 150 beats per minute.
A month later, it wasn’t any better — in fact, she noticed that she was actually getting worse. Parshall would be overcome by extreme tiredness over the simplest activities: doing dishes, climbing the stairs to her bedroom, and even just walking to the restroom.
“I feel a constant malaise; I just feel really sick,” Parshall, 44, says. “I can’t do a whole lot without crashing and going into a severe relapse.”
Linda Geng, MD, PhD, assesses a patient.
As symptoms persisted, Parshall joined a growing number of people who hadn’t fully recovered from COVID-19 even though the virus had left their bodies months prior. Patient groups and media dubbed this phenomenon long COVID-19.
As Parshall struggled to make sense of her illness, long COVID was gaining national attention. Congress approved $1.15 billion in December 2020 to fund the National Institutes of Health’s research on the long-term health impacts of COVID.
In February 2021, Anthony Fauci, MD, chief medical adviser to the president, announced in a White House briefing that the first study on long COVID, by the University of Washington, had found “something alarming”: 30% of patients had persistent symptoms up to nine months after the initial onset of illness.
Post-Acute COVID-19 Syndrome (PACS) Clinic.More than six months after Parshall came down with COVID, her primary care doctor referred her to specialty care at Stanford’s recently launched
As more people like Parshall reported puzzling symptoms related to their COVID infection, says Linda Geng, MD, PhD, clinical assistant professor of primary care and population health and co-director of the PACS Clinic, there was a clear and urgent need to better understand the enigmatic illness.
Geng, who has gravitated toward rare and puzzling illnesses since medical school and has been co-director of Stanford’s second opinion clinic since 2019, has seen many mysterious symptoms arise from viral infections, but nothing at the scale that the pandemic brought.
“Because of the sheer scale of the pandemic,” Geng says, “we’re talking about millions and millions of people at the same time experiencing these mysterious symptoms.”
Because of the sheer scale of the pandemic... we’re talking about millions and millions of people at the same time experiencing these mysterious symptoms.
– Linda Geng, MD, PhD
On paper, patients with long COVID appear in good health, says Hector Bonilla, MD.
A Hub and Spoke Model
The PACS clinic is a multidisciplinary effort for advancing both the care of patients with long COVID and clinical research. Since the clinic opened its doors in May 2021, it has been inundated with patients. Today, the clinic has nearly 300 patients, with a huge waiting list booked several months out.
PACS follows a hub and spoke model of care. The clinic is the hub. Patients begin there and receive a comprehensive medical evaluation to ensure that their symptoms aren’t due to other health conditions. Depending on their needs, patients then connect with a network of doctors (spokes) across disciplines.
“The origin of the clinic came out of the synergism and collaboration of those of us who already had patients struggling with these puzzling conditions and had a passion to help them,” Geng says.
Though there is still plenty to uncover, PACS is making headway at better understanding the impacts of the puzzling illness. To date, the clinic has made breakthrough discoveries: 87% of its patients were never hospitalized due to COVID; half of the patients meet the criteria for chronic fatigue syndrome; females are more prone to long COVID; and the most common co-occurring condition is obesity.
Long-term health problems spurred by viral infection are well established in the medical literature. The most common is myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Still, among the majority of medical professionals, postviral health conditions are poorly understood.
On paper, patients with long COVID appear in good health, says Hector Bonilla, MD, clinical associate professor of infectious disease and co-director of PACS, yet they report suffering from a host of ailments from mild to incapacitating: fatigue, shortness of breath, “brain fog,” sleep disorders, fevers, gastrointestinal symptoms, body aches, dizziness, anxiety, and depression.
“Somebody may be a very healthy, very active, very smart person, and then after they get COVID, their life is completely destroyed,” Bonilla says.
The origin of the clinic came out of the synergism and collaboration of those of us who already had patients struggling with these puzzling conditions and had a passion to help them.
– Linda Geng, MD, PhD
“Talk about having foresight”
On a Saturday afternoon in May 2020, Upinder Singh, MD, division chief and professor of infectious diseases, and Bonilla were working as part of a research team seeing COVID-19 patients in a tent in the Galvez parking lot at Stanford.
Bonilla, who discovered an interest in ME/CFS early in his career and never looked back, turned to his boss, Singh, and said, “Upi, I wonder if some people who get COVID will develop chronic fatigue syndrome.”
“Hector, you see chronic fatigue syndrome in everything. But I guess we’ll see,” Singh remembers saying.
Two years later, they now know that chronic fatigue is one of the most common symptoms.
“Talk about having foresight,” Singh says.
Bonilla spent the rest of 2020 and half of the following year thinking about how to open a clinic to research this condition and find possible therapeutics for long COVID. One day he received an email from Geng with the same ideas.
Independently of Bonilla, Geng had come to observe that long COVID was shaping up to be another public health emergency, and she also saw a connection between some of its symptoms and ME/CFS. So one day she reached out to Bonilla to see if he was interested in collaborating. Since many long COVID patients reported neurological problems, Geng also connected with Mitchell Miglis, MD, clinical associate professor of neurology and neurological sciences, an expert in autonomic neurology.
After securing clinical space in the division of infectious diseases building, their team grew to include Robert Shafer, MD, professor of infectious diseases, and Phillip Yang, MD, professor of cardiovascular medicine. Today, the clinic collaborates with more than a dozen medical providers.
In October 2021, PACS joined other research hospitals nationwide to act as a site for RECOVER, a wide-ranging, NIH-funded research effort aimed at learning the epidemiology and pathophysiology of long COVID, as well as defining the actual illness and finding ways to prevent and treat it.
Singh, who oversees the RECOVER initiative at Stanford, says she is very interested to learn what causes the illness — is it inflammatory or autoimmune, or is it viral? The answers could be used to help other postviral illnesses that currently are less researched but still impact large numbers of sick people.
"They listen to me, they understand me, and they’re trying to help me. That does give me some peace.”
– Brandie Parshall
At Least, "Some Peace"
After Parshall received her comprehensive assessment at PACS, she was connected to a team of specialists that she visits every few months to address her ongoing symptoms, including chronic fatigue, brain fog, and tachycardia. Doctors confirmed that she had postural orthostatic tachycardia syndrome, a disorder affecting the autonomic nervous system that has been linked to patients with long COVID.
By the fall of 2021, Parshall’s long COVID had gotten worse; especially debilitating were the extreme fatigue and bouts of brain fog. Despite these persistent symptoms, Parshall returned to work as an accountant after 10 months of medical leave. It was a disaster. The stress was incapacitating. She lasted only a month, every day of which she felt sick and miserable.
“I would cry every day,” she remembers. “I was trying to get through it, trying to be strong, but my body was not having it at all.”
Then, earlier this year, her brain fog got so bad that she had a hard time remembering the days of the week and couldn’t keep appointments straight. Parshall’s mother moved into her house in Hughson, California, to help with daily chores like doing laundry, washing dishes, and running errands.
For Parshall’s chronic fatigue, Bonilla prescribed off-label naltrexone, an opioid receptor blocker that has reduced inflammation and modulates the immune system for those with ME/CFS. Some patients had positive responses to this drug, but unfortunately for Parshall, the medication hasn’t seemed to work — another frustrating setback for her.
Some long COVID patients have gotten better and even graduated from the clinic, Geng says. But for Parshall, while some of her symptoms have improved, others, like the brain fog and fatigue, have not. She has gone through some dark times. Long COVID can be isolating for patients. Even today, people with long COVID struggle to be taken seriously among friends and family, some of whom don’t believe the symptoms are real.
At PACS, though, she is validated and knows there is hope.
“I’m not being gaslit: They listen to me, they understand me, and they’re trying to help me,” Parshall says. “That does give me some peace.”