With research showing up to 30% of COVID-19 patients experiencing lingering symptoms, Stanford Health Care treats such “long haulers” with multidisciplinary teams.
July 30, 2021 - By Tracie White
For about five months after contracting COVID-19, Rosie Flores lay on the couch at her home in Mountain View, California, feeling so fatigued that standing up was a struggle.
“I remember walking to my bed from the couch to grab a comforter and being out of breath,” said Flores, 47, who tested positive for the coronavirus in July 2020. “My arms felt like noodles. A phone conversation would exhaust me. My life was just living on the couch.”
Almost a year out, that fatigue has finally improved some. She went back to work part time in December as a project coordinator at Stanford Health Care, returning full time in March, but a day’s work still zaps her energy, and she continues to struggle with other symptoms, such as impaired memory, hair loss and balance problems.
In the fall, Flores was diagnosed at Stanford Health Care with symptoms of post-viral COVID-19 or, as it’s better known, long COVID. Unfortunately, she is not alone. As coronavirus cases have ebbed nationwide since the peak last winter, this newly described illness, estimated to affect up to 30% of recovering coronavirus patients, has caught the attention of the media, the federal government and the medical community, raising concerns that the long-term public health impact could be overwhelming.
At Stanford, some physicians who have been treating COVID-19 patients and researching long COVID realized they needed a clinic specifically for patients like Flores. Stanford Health Care’s Post-Acute COVID-19 Syndrome Clinic, or PACS, opened in May.
“As the pandemic progressed, we started seeing patients with all kinds of lingering symptoms after their initial COVID infection, including fatigue, dizziness, cognitive dysfunction, mood symptoms, chest pain, shortness of breath, insomnia, loss of taste and smell, hair loss and sleep disturbance,” said Linda Geng, MD, PhD, clinical assistant professor of medicine, who co-directs the clinic at Stanford. “It was clear this was a huge problem, and we needed to serve these patients.”
Stories in the media about large numbers of patients who recovered from COVID-19, only to develop new and lingering symptoms, first appeared last summer. Some of the patients started calling themselves long-haulers, and the name stuck. Often, they said, they were dismissed by doctors who didn’t believe them.
The cause of long COVID remains unclear, and the number of people who suffer from it is unknown. It can persist for months and range from mild to incapacitating. There is no definitive lab test to diagnose it, and there are no standardized treatments. In many cases, patients are left wondering if they will ever get better.
Clinicians are taking cues from what is known about other chronic illnesses, such as myalgic encephalomyelitis/chronic fatigue syndrome, a condition that often manifests after a viral infection and also has no known cause or standardized treatment, said Aruna Subramanian, MD, clinical professor of infectious disease at Stanford, who co-directs the ME/CFS Clinic. Long-COVID and ME/CFS symptoms are often similar and can include headaches and brain fog, as well as profound fatigue and something called post-exertional malaise — the worsening of symptoms after even minor physical or mental exertion.
“There seems to be a lot of overlap,” Subramanian said. “Working in the ME/CFS clinic, we see people who may have had other viral triggers, got sick … and their lives changed.”
Geng added that more research is needed to determine whether patients with long COVID fall into separate categories.
“This is a very heterogenous condition,” she said. “We may find different subgroups. There are patients who have multiple symptoms — dizziness, shortness of breath, insomnia all coming together — and then there are those with more isolated and defined COVID-specific symptoms like loss of smell and taste. The important thing to remember is to validate our patients; just because the condition is poorly understood doesn’t mean it’s not real.”
Whatever the case, enough scientific evidence has piled up to confirm that the problem is not only real but worrisome, according to the federal government. In December, Congress provided the National Institutes of Health with $1.15 billion to study the long-term symptoms of COVID-19. The NIH named the illness post-acute sequelae of SARS-CoV-2 infection and launched an initiative to find treatments.
“We do not know yet the magnitude of the problem, but given the number of individuals of all ages who have been or will be infected with SARS-CoV-2, the coronavirus that causes COVID-19, the public health impact could be profound,” Francis Collins, MD, PhD, director of the NIH, said in a press release announcing the initiative.
Studies providing evidence of the disorder first appeared in fall of 2020. In February, a study published in JAMA Open Network that followed COVID-19 patients up to nine months found about 30% reported persistent symptoms. A Nature Medicine article published in March, based on reports from 3,700 self-described long-haulers from 56 countries, showed nearly half couldn’t work full time for six months after first getting sick.
In May, a study by Stanford Medicine epidemiologists found that 70% of hospitalized COVID-19 patients had at least one symptom months later; another Stanford study found that even those with less severe cases of the virus, who were never hospitalized, were experiencing long COVID.
Physicians and scientists at Stanford continue to track symptoms and conduct imaging; they’re also searching for causes and treatments.
“There’s evidence the virus is triggering inflammation,” Subramanian said. “We know there is gastrointestinal involvement, but we don’t know much about these long-term symptoms in general — nausea, diarrhea, headaches. There seems to be some immune dysregulation. … We are wondering whether COVID is a trigger for ME/CFS.”
“We need new ideas so we can move treatment forward,” she added.
Just because the condition is poorly understood doesn't mean it's not real.
The PACS Clinic is designed to be a portal connecting long-COVID patients with a multidisciplinary team of post-COVID experts, including pulmonologists, cardiologists and neurologists, depending on symptoms. Some patients may have racing heartbeats and need to see a cardiologist. Many complain of shortness of breath and are referred to a pulmonologist. If a patient was hospitalized with COVID-19 and on a ventilator for a long period, the problem could be something called post-intensive care syndrome, and treatment could involve heart and lung and other rehabilitation.
Some patients have also been referred to the ME/CFS clinic, which can provide experimental medications, pain management techniques and activity-management training to help control the severe fatigue.
The co-directors of the PACS Clinic, Geng and Hector Bonilla, MD, clinical associate professor of infectious diseases, are experts in complex chronic diseases and post-viral illnesses. Geng’s expertise is in the diagnostic evaluation of patients with a wide variety of unexplained symptoms and mystery medical conditions, which is why long COVID caught her attention. She thought she could help by joining forces with other faculty members from various disciplines to tackle this complex condition, she said.
“When this condition came to light, it seemed very similar to many cases we had seen in our diagnotic clinic prior to COVID,” Geng said, referring to Stanford Health Care’s Consultative Care Clinic, which provides diagnostic services for patients with unexplained illnesses and symptoms. “We have seen patients with mysterious, puzzling symptoms after viral and other infectious illnesses. Long COVID can manifest in multiple systems of the body, including cardiopulmonary, endocrine, gastrointestinal, rheumatologic, neurologic, musculoskeletal, and so on.”
“We need to take a whole-body approach to patient care,” she added.
The long haul
Flores, who’s participating in a Stanford study of long COVID patients, has seen an array of specialists, including an audiologist, hematologist, cardiologist and pulmonologist. She’s been referred to a movement-disorders clinic. She’s discovered that she’s lost 10% to 15% of her hearing and that her balance is off. She has difficulty walking a straight line. No one knows why her hair keeps falling out.
“I feel like my memory has improved but not anywhere close to where it once was,” she said. There were times, especially in the early phase of her illness, when she would look at a word in print that she knew but couldn’t remember what it meant or how to pronounce it. A few times, she had difficulty speaking, and that scared her.
Most recently, she was given an off-label drug called aripiprazole that Bonilla studied in an earlier trial as an experimental treatment for ME/CFS. It gave her more energy and allowed her to work full time. Without it, she said, she wasn’t sure she could continue in her job.
“I was ready to give up, but those pills really helped,” she said. Still, her life is far from what it was before she got sick. She no longer volunteers at her church. A phone call to a friend can exhaust her. She can’t do a six-minute walk, and her balance remains unsteady. As each day passes, she grows more impatient for new research to provide better answers.
“You think it’s going to get better, but it doesn’t,” she said. “Everyone thinks you are doing well, but you’re not. My hair is still coming out in handfuls. If I close my eyes, I start swaying. That’s where I am right now.”
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