‘Long COVID’ still a mystery as California fights pandemic

More than two years after California imposed the nation’s first lockdown to stop the spread of COVID-19, the deadly disease persists, fueled now by the highly infectious subvariants and clouded by fears that the malady will stick around awhile — a long while.

Despite the persistent threats and a death toll of about 92,000 and 10.3 million infections,  many COVID precautions — remarkably — have been removed. As of early July, the number of those testing positive was about 17% and climbing, putting it on track to being the second-highest positivity rate of the entire pandemic. About half of those were infected by BA.5, Omicron and other subvariants.

Four-out-of-five Californians have been vaccinated, boosted, or both, and experts clearly have gained a better understanding of COVID-19.

Long covid is “a very diverse condition…spanning almost every organ system.” — Dr. Lucy Horton

But the persistent re-emergence of symptoms long after infection — colloquially known as “long COVID” — is a mystery that doctors and researchers are only beginning to unravel.

Long COVID, officially known as Post-Acute Sequelae of SARS-CoV-2 infection (PASC), covers a wide range of post-infection health problems that are difficult to diagnose and can be extremely debilitating for many people who develop it.

Compounding the problem is that experts still haven’t agreed on crucial questions surrounding long COVID.

First, there is still no clear definition for what constitutes long COVID. The U.S. Centers for Disease Control and Prevention lists a number of the most common symptoms on its website such as fatigue, brain fog, difficulty breathing, headaches, and chest pain.

It is “a very diverse condition…spanning almost every organ system,” says Dr. Lucy Horton, an infectious disease specialist at UC San Diego Health, who pointed to a recent international study that estimated that there were over 200 symptoms associated with the disease.

“There is no classic presentation of long COVID – each patient has their own flavor of it,” she said, explaining that it is a continually evolving condition in which new symptoms can arise over time.

Another question is the cause. Researchers have not come to a consensus and are working through several theories.

In some cases, physicians told patients they were completely healthy and that they were imagining their infection.

Dr. Linda Geng, co-director of the Stanford PASC Clinic, said that there are a couple leading explanations that have gained attention including immune and inflammatory dysregulation, persistent viral particles, microbiome disruption, and microclots.

With the coronavirus still prevalent across the state, another question is how often infections result in long COVID. The answer is complicated. Many studies have pointed to anywhere between 10% and 30% of cases resulting in the condition, including a recent CDC study which said it was one in five.

If you assume a 10%-to-30% range, the number of Californians who have had long COVID ranges between 920,000 to 2.8 million.

The numbers are necessarily a rough estimate, in part because there is no standardized definition of the disease.

For example, while the World Health Organization says symptoms can be classified as long COVID if they continue for more than 12 weeks from the point of infection, the CDC’s official definition states that it is four weeks.

“We’re talking about the fact that a large swath of individuals, who would’ve been working age and healthy otherwise, are now plagued with symptoms that prevent them from executing their work…” — Dr. Nisha Viswanathan

Another complication is the constantly evolving nature of the pandemic.

Dr. Nisha Viswanathan, co-director of the Long COVID program at UCLA, says that the rate of developing this condition has been changing with time, depending on an individual’s exposure to COVID. This is because the newer variants and vaccinations may have made it less likely, although still possible, for people to develop long COVID.

While much is still unknown, many patients are already experiencing significant ramifications as a result of their condition, what some experts call a “mass disabling event.”

Dr. Viswanathan says the description is apt, because “we’re talking about the fact that a large swath of individuals, who would’ve been working age and healthy otherwise, are now plagued with symptoms that prevent them from executing their work at perhaps either the level they were doing before or being able to work at all.”

So far, long COVID’s effect on the job market hasn’t shown up much in the employment data. This could be because it may be too soon to see the disease’s full effect, or it could be due to another problem that has plagued these long-haulers: having to suffer in silence.

Governments and institutions are continuing to set up several studies meant to understand and find treatments for long COVID.

Several experts who were consulted for this article described patients whose symptoms were dismissed and ignored by others, including other medical professionals. In some cases, physicians told patients they were completely healthy and that they were imagining their infection.

Dr. Horton believes that an obstacle to identifying long COVID sufferers is that “it’s a very resource intensive condition and in the state of our current health system, it’s very challenging for patients to get into their primary care physicians, [who] are very overbooked [and] forced to see so many patients that they can only spend 15 minutes with somebody.” And that’s for those who even have a primary care physician.

Governments and institutions are continuing to set up several studies meant to understand and find treatments for long COVID.

The National Institutes of Health is sponsoring the RECOVER Initiative, which is meant to provide more conclusive epidemiological data on many of the unanswered questions surrounding the disease.

Survivor Corps, an organization meant to support COVID-19 patients, has a list of clinics throughout California and the rest of the country.

On both the federal and state level, the California Department of Public Health is collaborating with UCLA and UCSF on a national CDC-sponsored study called INSPIRE, in order to further understand the long-term effects of long COVID.

The CDPH says that they are hoping “the California study population will reflect the geographic, racial and ethnic diversity of the state” and that they “are also exploring other collaborative approaches to better understand post-COVID conditions with CDC and other academic partners.”

As experts continue to work on this research, many institutions have set up post-COVID clinics and recovery programs to help diagnose and help patients cope with symptoms. Survivor Corps, an organization meant to support COVID-19 patients, has a list of clinics throughout California and the rest of the country.

Dr. Susan Cheng, a cardiologist and clinician-scientist who works with the Post-COVID Clinic at Cedars Sinai Medical Center in Los Angeles, thinks clinical-research partnerships should be funded to benefit long COVID patients. That, she added, would allow researchers to acquire real time feedback and see how the health issues change over time.

Dr. Viswanathan thinks that putting funding aside to create a statewide database on long COVID and aiding institutions in talking with one another are two steps that the state can take to further research into the condition.

One of the biggest challenges that has affected Dr. Viswanathan’s ability to take care of her patients has been the huge amount of medical bills that those seeking help with long COVID have accumulated.

She noted that some of the treatments used to deal with patients’ specific symptoms, like aquatic physical therapy, are not covered by all insurance plans.