COVID ‘long-haulers’ advocate for more research, labor protections, and people-centered health policies

[Illustration by Jaycee Felkins — Mara Cavallaro is El Tecolote’s Report for America Corps Member who reports on mental health and healthcare inequality in the Latinx community.]

In May of 2020, Dr. Michael Peluso saw his first patient with long COVID at San Francisco General, before long COVID had a name. She was young, he remembers, and came in for persistent falling and fainting spells that made it hard to work and take care of her kids. Her symptoms were “surprising,” Peluso said. “She was debilitated.” 

It turned out that in her case COVID had triggered dysautonomia, a nervous system syndrome that interferes with heart rate and blood pressure regulation. In addition to fainting, common symptoms include vertigo, chest pain, migraines, nausea, and fatigue. And though sometimes present at birth, dysautonomia is often post-viral, meaning it develops in response to serious diseases or infections. “At the time, I didn’t know what I was seeing,” Peluso told El Tecolote. “Now, I know that [she] had long COVID.” 

An estimated ten to 30 percent of people who have had COVID experience PASC, or post-acute consequences of the virus that continue following a negative test. Of this group, nearly 70 percent developed moderate to severe dysautonomia, making the condition one of the most common manifestations of long COVID. What we still don’t know, though, is why. Why some infections develop into long COVID and not others, why long COVID symptoms are so varied — from “brain fog” to heart problems to erectile dysfunction —, why they are so persistent. Since the spring of 2020, patient-advocates have demanded investment in research to find answers to these — and many more — questions, and to improve both care and prevention. “Right now we have an estimated 19 million people in the U.S. with long COVID,” said Lisa McCorkell, Oakland-based co-founder of the Patient Led Research Collaborative (PLRC). “It’s critical for anything with that severity … to be studied. The number of people that are experiencing it now makes it that much more urgent.”

In March of this year, thanks to patient advocacy for more research, UCSF launched a chapter of RECOVER (Researching COVID to Enhance Recovery), a three-to-four year national study on long COVID sponsored by the National Institute of Health. It encompasses lab tests — of blood, saliva, and urine — that seek to answer the biological whys, as well as surveys and interviews that seek to better understand the populations most affected by long COVID and their needs.

In San Francisco, for instance, data demonstrate that Latinx people are disproportionately represented in COVID cases and deaths. The CDC estimates that 17.6 percent of Latinx adults have experienced long COVID, more than “non-Hispanic” white adults (13.7 percent), Black adults (12.2 percent), and Asian adults (8.3 percent), and second only to “non-Hispanics” of other or multiple races (19.2 percent). More recently, the Abriendo Puertas National Family Study found that one in four Latinx families are currently suffering from long COVID symptoms. 

White people with long COVID, however, have been overrepresented in clinical treatment settings — what The Guardian calls an “equity gap.” Even in cities with predominantly Latinx populations, local clinics’ patient demographics are skewed — towards whiter, wealthier patients, who have the time and resources to seek help. Now, as we approach three years of COVID, research and treatment projects are recognizing that low-income communities and patients of color have been overlooked.

“I want to make sure that the communities most heavily affected by COVID, — and in particular the Latino community in San Francisco — are represented in this study,” Dr. Carina Marquez, RECOVER’s community engagement co-lead, told El Tecolote. 

Patient-led Research 

By the time Peluso and other UCSF physicians had seen several patients with symptoms lasting weeks or months after initial infections, they began to study COVID “more formally,” in a research project called LIINC. Across the United States, though, patients with long COVID continued to be ignored, doubted, and dismissed by medical professionals. “I experienced a lot of gaslighting,” McCorkell said of her experience trying to get support from Sutter Urgent Care for her persisting symptoms. “There was a point where I had extreme palpitations and a lot of chest pain, and so I went to the ER and was told I was just having anxiety. In retrospect, I know that was an episode of POTS [a form of dysautonomia].”

Lisa, and many others, turned to online forums — the term “long COVID” itself was coined by a patient on Twitter — to discuss their symptoms and be in community. In quarantine, it was these digital spaces that became information, research, and advocacy centers for ‘long-haulers.’ The Patient Led Research Collaborative McCorkell is a co-founder of, a group of researchers who have or had long COVID, itself emerged from a WhatsApp group-turned-Slack page called Body Politic that still functions as a support group for its 11,000 members. 

“In those early days, I was very active within the support group, documenting a lot of my symptoms, asking for advice,” McCorkell said. Now that she’s been in it for years, “it’s like a family.” People share news about COVID research, talk about the wins and losses of their illnesses, and send updates on “you know, life.” 

In April of 2020, a small group within Body Politic began documenting long COVID symptoms and patient experiences, since the medical establishment wasn’t. McCorkell had some background in data analysis, so she offered to help on the project, and by May, she had helped finalize the first formal report on long COVID, with data from 640 respondents in over a dozen countries. (It’s worth noting here that 76.5 percent of respondents were white, a reflection moreso of the national lack of outreach to people of color about long COVID than the support groups’ dynamics). Regardless, “that was the birth of the Patient-led Research Collaborative,” she explained.

Now, McCorkell works full-time at the PLRC, an organization founded on the understanding that patient-led research is more effective and empathetic. “As a patient, you know your body best, and have done research [by living in it].” Without patient input in the planning stages of research, professionals often study “the wrong things, and are not going to help us get to a solution or a treatment.” Experiences of long COVID are so varied, for example, that without patient leadership, physicians may not include comprehensive lists of symptoms on surveys. Even RECOVER — which is not patient-led but for which McCorkell is a patient representative — has a study design that she says is “not really reflective of the patient experience.” She describes patients who have been turned down erroneously from the study and others who are accepted but for whom the testing itself is inaccessible. 

This May, the PLRC received $5 million in funding from Balvi to fund biomedical research with patient input. Various other studies are already underway: on reinfections and long COVID, on long COVID and mental health, and on the impact of long COVID in low and middle income countries. 

Long COVID Advocacy Intersections

The lack of institutional care for people with long COVID — across sectors — reflects a much longer history of neglecting other chronic conditions. Illnesses like myalgic encephalomyelitis (or chronic fatigue syndrome), dysautonomia, and chronic Lyme disease, for instance, have not been prioritized in research funding or labor policy. Had they been, care for those with long COVID — and scientific understandings about it — would have been achieved more easily. 

Instead, the reality is that people with long COVID are faced not only with debilitating, life-altering symptoms, but also labor practices that are rigged against employees—in terms of accommodations, reduced hours, and long-term sick leave. Worker’s compensation requires a COVID diagnosis, and many long-haulers, like Lisa, have never been diagnosed. “I couldn’t get a COVID test,” she says. When she got sick, tests were scarce, and you had to either have a fever or be hospitalized to be tested. In the PLRC’s first survey, only 23.1 percent of people with long COVID symptoms had a positive COVID test. Over a quarter were “denied testing,” 22.3 percent weren’t tested, and 27.5 percent were negative. “Making these things contingent on having some sort of test is one thing we’re fighting,” McCorkell says.

Ed Yong, who covers COVID for The Atlantic, writes, “other sources of disability benefits and care, including private insurance and Social Security, are notoriously hard to access. Long-haulers would need to provide a history of being unable to do substantial gainful employment, and ample medical documentation of their disability to prove that it’s expected to last at least a year. Many have neither.” 

According to the Abriendo Puertas National Survey referenced earlier, 36 percent of surveyed Latines “have depleted savings to pay for healthcare costs.” 22 percent have lost jobs, 24 percent felt they were “in danger of losing a job because of missed work,” and 33 percent have lost wages because they’ve missed work. Part of the governmental response to long COVID needs to be a reimagining of labor policies and government assistance programs, where again, low-income patients are disproportionately harmed.

Instead, state and federal policymakers have opted to neglect both people with long COVID and those at risk of getting it. The president himself announced on CBS’ 60 Minutes that “the pandemic is over,” just weeks after halting a program that mailed out free test kits. In reality, as The Nation put it, there’s been “a 9/11’s worth of American deaths [from COVID] every week for the past several months.” Despite an average of 37 people dying from COVID daily in California, the state has lifted its masking protocols. BART lifted its mask mandate in early October. 

“[These decisions are] absolutely not based in any actual science, and [they’re] coming at the expense of people who are most at risk in our communities — and making us feel dismissed and disposable,” said McCorkell. Especially when policymakers refuse to, we need to look out for each other. Wear a mask.

For additional information or to join the RECOVER study, call 415-353-9306, send an email to FiguringOutLongCOVID@ucsf.edu, or fill out a form at: Studies.RecoverCovid.org.