Pandemic fatigue and a lack of research dollars means long COVID patients are being left behind

Experts tell Salon there aren't enough research funds to help figure out how to help long COVID patients

By Troy Farah

Science & Health Editor

Published March 16, 2023 12:00PM (EDT)

Long-covid patients do breathing training with a physiotherapist in a gymnastics room at the Teutoburger Wald Clinic, a rehabilitation clinic for post-covid patients.  (Friso Gentsch/picture alliance via Getty Images)
Long-covid patients do breathing training with a physiotherapist in a gymnastics room at the Teutoburger Wald Clinic, a rehabilitation clinic for post-covid patients. (Friso Gentsch/picture alliance via Getty Images)

So far this year, most metrics for measuring the COVID pandemic have been trending downward. On average, there are fewer deaths, hospitalizations and overall infections, while traces of the SARS-CoV-2 virus in wastewater have dropped. Antiviral drugs and vaccines still work, even against XBB.1.5, the most dominant variant the last several months. We understand how to fight this disease better than ever compared to three years ago and the good news is that we seem to be winning. For now.

Unfortunately, none of this means the pandemic is truly "over." And it's especially not over for a certain subset of the population: the long COVID community. Long COVID, technically known as Post-Acute Sequelae of SARS-CoV-2 infection (PASC), is a broad category of chronic illnesses that linger long after catching the virus, usually with symptoms persisting for three months or more. And as the rest of the country moves on, many of those with long COVID feel they're being left behind and forgotten. 

An estimated 10 percent of people who contract the virus, no matter what variant, develop long COVID.

That's not the kind of news that many people want to hear, least of all self-centered celebrities or politicians. All of us are truly tired of this endless COVID cycle constantly swishing through us — but the harsh reality is that while aforementioned metrics are dropping, they are still very high relative to months and years past. In other words, our baselines have shifted as we have become accustomed to a certain degree of COVID-associated death and illness.

In approximately 72 percent of the country, there is still an elevated level of community spread, which gives the virus ample opportunity to mutate into something that can evade our immunity — a trend we've seen over and over with the omicron and delta strains, for example. A future surge remains a distinct possibility, especially if a new mutation gives a variant an advantage to once again drive high levels of death and illness.

Some public health experts and "long hauler" advocates describe long COVID as a "mass disabling event," given the surging number of people who have become jobless or permanently disabled by COVID infection. An estimated 10 percent of people who contract the virus, no matter what variant, develop long COVID. The risk is about 15 to 20 percent for the unvaccinated. It's sort of a pandemic within a pandemic, like a set of Russian nesting dolls.

Yet the long COVID problem gets far less attention and some patients still struggle to be believed. Funding for long COVID patients is drying up, a burden that seems unlikely to ease as public health emergency funds also evaporate. Research exists into this condition, but there are no universal treatments and some health insurance companies seem baffled with how to approach this. Many patients struggle to afford care, if they can even find a clinic that can treat them.

To make matters worse, this patient population is regularly subjected to "medical gaslighting," or not having their health taken seriously by doctors. Not even health care workers themselves are immune to being dismissed or accused of lying about their lingering illness.

"For some reason, the idea of dying and that imagery of people on ventilators was very compelling to the general public at the beginning of the pandemic. But somehow, the imagery of people being bedridden gets dismissed as laziness or psychosomatic," explains Dr. Julia Moore Vogel, a program director at Scripps Research, a nonprofit American medical research facility. "I wish people understood the risk of these severe long-term symptoms and how absolutely life-changing it can be. There's this tendency to trivialize it because of the nature of the disease. There's a long history of this with many post-viral illnesses."

Vogel knows firsthand what it's like living with PASC, being a patient researcher that developed long COVID herself in July 2020. Like most people, her infection began with a loss of taste and smell.

"I called my health system and they said, 'You're young and healthy, this will probably be your only symptom, you'll definitely be fine in two weeks,'" Vogel recalls to Salon. "About 10 days in, I started having real difficulty breathing. And I ended up getting some outpatient care to help with that, but then I just never recovered. I never bounced back from it."

Even today Vogel says she struggles with the critical thinking that is crucial for her job, but her baseline energy levels have continued to lower over the years. Some preventative medications have only made her symptoms worse.

"None of them have considerably helped me," Vogel says. "I've tried a lot of different supplements, none of which have given me an appreciable quality of life improvement. I'm basically just trying whatever is out there, whatever has some evidence behind it, even though there's a severe lack of well-powered studies."

Vogel is a coauthor on a recent paper in Nature Reviews Microbiology which summarizes what we know about long COVID so far and what gaps we still have in our understanding of this condition. Those uncertainties range from not knowing how to effectively treat long COVID (though some drugs and therapies work for some patients) to a basic understanding of the disorder and how it pathologizes. Some patients will recover from COVID, develop some persisting medical malady and yet never even realize they have PASC. Many physicians, especially in underfunded rural areas, may not even recognize it, let alone know how to treat it.

"One of the challenges about long COVID is that the symptoms are so diverse. It's not like there's one presentation that is easy for an individual or even the medical community to recognize," Vogel explains. "It's a really dispersed sort of syndrome."

Long COVID can encompass more than 200 symptoms across multiple organ systems, from the brain to the gastrointestinal tract to the heart and lungs. The reason for this is a testament to SARS-CoV-2's innovative evolution, which allows it to gingerly enter our cells using its spike protein — a sort of master key for receptors, which are like doors on the membranes of our cells.

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Different people experience different symptoms, which can manifest as fatigue, chest pains, heart palpitations, cognitive impairment, poor sleep, blood clots, erectile dysfunction, irregular menstruation and much more. A common form of long COVID resembles conditions like myalgic encephalomyelitis/chronic fatigue syndrome, a highly disabling, severe condition distinguished by extreme fatigue after even minor exertion, like getting out of bed.

Experts aren't entirely sure why people develop post-viral illnesses like PASC. Some theories involve persisting reservoirs of SARS-CoV-2 viruses or activation of other viruses many people carry, such as Epstein-Barr. Some people recover from long COVID, while others, like Vogel, are still struggling to recuperate. But with so many associated symptoms, it begs the question: What isn't long COVID? Can we really blame this virus for so many different diseases? Even the term "long COVID" can sound somewhat vague. Is there a better way of defining something so extensive and devastating?

"The term long is tough because we don't really know how long it is. How do you define 'long?'" Dr. Nicole Gentile, a primary care physician that specializes in post-COVID rehabilitation at the University of Washington Medical Center in Seattle, told Salon in a phone call. Gentile has been treating PASC patients since autumn 2020 and still sees about 150 new patients and 200 return patients per month. She also conducts research on long COVID and has helped design clinical trials to better understand this condition.

"I don't know if anyone really knows the best term ... I will use the term long COVID with patients because it acknowledges them, that what they're experiencing is very real and I believe that it is because they had COVID."

"We use caution with terms like 'long hauler' or 'post-COVID' patient. We don't like to say that because it can shape the identity and culture of this [condition], as we have very well seen, and doesn't really allow for possibility of recovery," Gentile says, noting that long COVID is actually a term invented by the patients themselves, back when the condition was so new that doctors didn't really have a universal word for it like they do now with PASC.

"I don't know if anyone really knows the best term," Gentile says. "I will use the term long COVID with patients because it acknowledges them, that what they're experiencing is very real and I believe that it is because they had COVID. One of the most important things is making sure that we validate the patients when they come in, because this condition is very real."

Aside from the challenge of convincing people that PASC is a genuine threat to public health, there is a general lack of research in this area, a lack of funding and a lack of treatment access. Many treatments also remain in experimental limbo, which makes health insurance coverage a patchwork nightmare.

"While some of this stuff works, we don't yet know the optimal dosing of some of these things. That all needs to be studied," Gentile says. "Some of this stuff can be really dangerous. Oftentimes, we'll get patients coming in requesting referrals for some of these very expensive and risky treatments that have not been studied in randomized controlled trials yet and the safety profile has not been determined."

Unsurprisingly, but no less tragic, access to treatment and even recognition of PASC as a condition is riddled with racial disparities. For a long time, there wasn't even clear data showing how long COVID was affecting Black and Brown communities compared to white populations, but the initial analysis pointed to a trend that began with the pandemic: COVID has made systemic racism worse.

Two recently published studies underscored this problem. The first, published last month in the Journal of General Internal Medicine, analyzed the health records of 62,000 adults in New York City who received a positive COVID-19 test, finding racial and ethnic minority groups had "significantly different odds of developing potential PASC symptoms and conditions."

"Our study suggests that different communities may have different experiences and needs, and that ensuring diversity of enrollment in PASC trials and clinics is essential," the authors wrote.

In another study, published in BMC Medicine, data from the electronic health records of nearly 34,000 adults and children who received a long COVID diagnosis revealed that patient demographics skewed toward female, white, non-Hispanic individuals in areas with low poverty and greater access to healthcare. What this suggests is that certain groups aren't even able to receive long COVID diagnoses, though more research is needed to really understand what's causing these discrepancies.

There are still things that people can do to prevent long COVID, the same basic tips we've been told repeatedly throughout the pandemic: keep up to date on vaccines and boosters and wear masks in public.

"I think for the general public vaccination is a no brainer. It has a great safety profile and great evidence for preventing severe disease and in some cases reducing transmission," Vogel says. She notes that in rare cases some people can develop long COVID in response to the vaccines, although it's not yet clear how or why.

"There are some cases reported of vaccine injury where people end up with long COVID-like symptoms from the vaccine," Vogel explains. "It's a rare side effect that still doesn't outweigh the benefit of vaccination for the general public. But I think it's something that needs to be looked into more so that we can fully understand it and quantify what that risk is. I think there's a tendency to say, vaccines are good, period, and not acknowledge those low risks, even though they exist. And I think that just erodes trust and feeds the fuel of the anti-vaccine community if you're not acknowledging that."

If not long COVID, the vaccines are still especially good at preventing hospitalization and death. There's still a lot we don't know about this condition, but COVID is most likely here to stay, with occasional seasonal flareups or perhaps continuing this sustained level of moderate to high infection rates. The more infections, the more long COVID we can expect.

"This pandemic has impacted everybody, regardless of whether or not they've been diagnosed with COVID," Gentile says. "I need the government and the public to realize that this is a big thing. I don't like that people think that the pandemic is over. But if you're going to move forward and move us into the chronic stage of the pandemic, please acknowledge that long COVID is not yet in the chronic stage, as no one has even acknowledged that it is a pandemic in and of itself."

By Troy Farah

Troy Farah is Salon's science and health editor specializing in drug policy and pandemics.

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Covid-19 Health Long Covid Pandemic Pasc Post-viral Illness Science