Long COVID: a ‘massive disabling event’

Is the pandemic over? Not for millions of people like Robin Jackson. 

Jackson first got sick in early March 2020, when there was barely even a name for what she had.

There were no tests for it at that time, but Jackson was told she likely contracted the novel coronavirus.

Her initial illness was like an extreme case of the flu and lasted about a month and a half. When the acute period was over, Jackson assumed she could get back to her life before COVID-19 — but she was wrong. That’s when her real struggle began.

Jackson lives in Duvall and is a member of the Washington state chapter of the COVID-19 Longhauler Advocacy Project, a grassroots effort to bring attention and support to the up to 20% of COVID patients who experience symptoms for months or years after infection.

Symptoms of long COVID can include a multitude of ailments — and differ person to person — but often present as fatigue, difficulty breathing, headaches, heart palpitations, digestive issues and brain fog. According to the Centers for Disease Control and Prevention, about 80% of people with long COVID reported activity limitations due to their illness.

So why, if an estimated 24 million people are still coping with long COVID, are we declaring the pandemic a thing of the past?

In September, President Joe Biden famously said on “60 Minutes,” “the pandemic is over.” In October, closer to home, Washington state’s emergency order ended. Following that, the state’s COVID response website was decommissioned, with COVID tracking and other resources shifted to the Department of Health site.

True, state public health officials on Friday recommended people once again mask indoors to battle the “tripledemic” of RSV, flu and COVID. And nationally, the COVID public health emergency is still in place, meaning that tests and treatments are still free. But since August, there have been signals that it may be allowed to expire sooner than later. Given the number of people no longer masking indoors and out, it seems the public is happy to agree.

These shifts are not lost on long COVID patients. They are watching all this with trepidation.

“When they get rid of the dashboards, and they get rid of the advertising, it makes people like me who have COVID feel like, well, we should just get over it. What happened to us didn’t happen,” Jackson said. “We should be normal, we should be fine. COVID is not a real thing. The government isn’t taking it seriously. So why should anybody else?”

To be fair, some government, research and health care entities are taking long COVID seriously, such as the RECOVER study, a nationwide project of the National Institutes of Health to better “understand, prevent and treat” PASC, or post-acute sequelae of SARS-CoV-2, known as long COVID.

In the Northwest, the Institute for Systems Biology, or ISB, is leading the effort through the PNW Consortium, a multisite partnership including the University of Washington, Swedish, Providence and others. 

While researchers still have a lot to learn and understand about long COVID, the ISB’s research into factors that might contribute to susceptibility for the illness identified four things that could be at play. These included the presence of coronavirus RNA levels in the blood, certain autoantibodies in the body, Epstein-Barr virus DNA levels in the blood and preexisting Type 2 diabetes.

Dr. Helen Chu, associate professor of epidemiology, medicine and infectious diseases at UW, is the university’s lead researcher for the RECOVER study. 

She said the attention and response to long COVID has not been proportional to the urgency of the problem. “It feels like this massive disabling event that’s happening and people are not acknowledging it,” Chu said.

Also, she said, the need for support for long COVID patients is greater in rural areas and for Native American, Black and Latino communities, who are disproportionately affected. “The amount of need relative to the amount of services available … that number is multifold,” Chu said.

According to the CDC in September and as Axios reported, of the millions who have long COVID in the U.S., nearly twice the percentage of African Americans (38%) reported significant activity limitations compared to non-Hispanic white people (20%). 

UW has a long COVID clinic, which Jackson gets treatment from through telemedicine, but the demand for services is high and the number of resources low. Jackson is also part of the RECOVER study.

Chu said one thing the public can do to help is get vaccinated. She said the more you can prevent or delay getting COVID, and the more you can get vaccinated, the better the outcomes seem to be.

Dr. James Heath, president of ISB and director of the Northwest RECOVER study, said that while long COVID is a really hard problem to solve, there are a number of people working on solutions and they aren’t scared by it. Given the pace of research, there could be treatments and standards of care for symptoms related to long COVID in about a year. His advice to long COVID patients? “Hang in there.”

In the meantime, Jackson wants to make sure long COVID patients are not forgotten in the rush to get back to normal.

“You may not be able to see that we’re sick. We have days that are good. We have days that are bad,” she said. “But we’re fighting and what we need from everybody else is the support: the funding, the education, the mental support.

“We’re not the same people we used to be, mentally and physically. But we’re still here — still include us. Don’t write us off. Because we’re still here. We’re still fighting.”