Last August, I wrote about my personal experiences with Long COVID (referred to by medical types as “post-acute sequelae of COVID-19,” or PASC), and my sense that the nation was sleepwalking toward a trainwreck. Since then, there have been quite a few developments, both in my own situation and the overall Long COVID picture. A bit of the news is encouraging, some of it decidedly not.
My own issues began with knee pain, starting about six weeks after COVID-19 had first laid me low for about a week in early January—not long after I’d moved from San Francisco to Hilo, Hawaii. It quickly morphed into pain and stiffness everywhere from the knees down—knees, lower legs, ankles, feet—accompanied by afternoon fatigue bad enough that I needed to lay down and essentially be immobile for at least an hour after lunch every day.
Since then, my symptoms haven’t changed much, except that the pain in my feet got worse. In general, I’m weaker, less mobile and with less stamina than I was pre-COVID, as if I’d aged 15 years in the space of two months. After a rather complicated medical odyssey (note to self: next time, don’t move to the hinterlands right before catching a little-understood disease), I have some answers, but no significant progress. Barring some unforeseen medical advance, I’m never going back to how I was a year and a half ago.
The major news is that nerve tests found fairly severe peripheral neuropathy—nerve damage—in my legs and feet, which explains at least some of my symptoms. A number of things can cause neuropathy other than COVID—diabetes, HIV and certain medications, for example —but none of them apply to me, while several studies have shown increased incidence of neuropathy in PASC patients. This seems to be my particular manifestation of Long COVID.
Neuropathy isn’t curable. Modern medicine’s many miracles don’t yet include large-scale repair of damaged nerve tissues. The best my doctors can do is, perhaps, partially alleviate my symptoms.
And that is pretty similar to where we are with Long COVID in general. We’re learning more about what’s going on and some patients have found treatments that bring a bit of relief, but definitive answers about precisely what is happening to patients or how to fix it remain far away.
A review published this March in Nature Reviews Microbiologylays out the state of things. Long COVID afflicts at least 65 million people worldwide, based on a conservative estimate that 10 percent of those infected with SARS-CoV-2 end up with prolonged symptoms (some estimates are much higher). With an estimated 105 million U.S. COVID-19 cases, that means more than 10 million people with Long COVID in this country, the majority of whom were never hospitalized for their initial infection. And, the Nature Reviews article notes, “There are currently no validated effective treatments.”
One of the world’s top-ranked medical journals, Britain’s The Lancet, summed up the present state of Long COVID in a March 11 editorial:
“The acute months of the COVID-19 pandemic motivated an unprecedented response from governments, international organisations, pharmaceutical companies, and civil society. Long COVID has not received anywhere near the same level of attention or resources: the result has been widespread harm to health, societies, and economies. 3 years in, more is needed to recognise, treat, and support patients with long COVID.”
So why do some COVID patients have prolonged symptoms? No one knows for sure. Yale University immunobiologist Akiko Iwasaki comments, “There are a few different hypotheses for Long COVID—viral persistence, autoimmunity, reactivation of latent viruses, and unrepaired or ongoing tissue damage,” but the exact role of any of these in the symptoms patients experience remains unproven. A number have studies have found persistent viral RNA or proteins lingering months after the initial infection, suggesting that SARS CoV2 may still be hiding out somewhere in the body, at least in some people, but again, what precisely is going on remains unclear.
Multiple abnormalities have been found in the immune systems of Long COVID patients. Levels of various types of immune cells and signaling chemicals called cytokines are frequently out of whack, but Dr. Iwasaki explains, “whether these are driving diseases, or whether they are a marker of the disease process, remains unclear.” In short, we don’t know what is cause and what is effect.
What we do know, definitively and without question, is that COVID-19 is not “just a cold,” as some right-wingers have maintained. As the Nature Reviews article notes, “SARS-CoV-2 has the capacity to damage many organ systems.” These include the circulatory system, with evidence of microscopic blood clots and serious events like pulmonary embolism—blood clots blocking blood flow to the lungs. The virus can damage the kidneys, the heart, the nervous system, and increase one’s risk of diabetes, to name just a few of the major issues. COVID can mess with nearly any part of your body and do it for months or years, and maybe indefinitely.
One of the more alarming Long COVID manifestations is its potential impact on the brain and nervous system. Nature Reviews notes that one meta-analysis (a study combining and analyzing results from multiple individual studies) found fatigue in nearly a third of COVID-19 patients and cognitive impairment (aka “brain fog”) in 22 percent at 12 weeks after infection. Some studies suggest that rates of cognitive impairment actually increase over time rather than improving, as one would hope. And a British study found an “overall reduction in brain size” in post-COVID patients compared to those who were never infected. The rate of cognitive impairment doesn’t seem to be related to whether the patient was hospitalized with their initial infection.
In some with Long COVID, symptoms are similar to myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), which can cause overwhelming fatigue that often gets worse after any physical or mental exertion. ME/CFS often follows other viral infections, including Epstein-Barr virus. And some Long COVID patients suffer from what’s called dysautonomia, disruption of the part of the nervous system that controls involuntary, automatic functions like breathing and heartbeat, with results that can be both debilitating and scary.
There are lots of theories about what’s causing all this, but nothing close to a definitive answer. Inflammation of nerves, other sorts of injury to neurons and damage to blood vessels are all considered possibilities, but for all aspects of Long COVID, causal mechanisms remain uncertain. Dr. Iwasaki notes, “We are not there yet in being able to draw arrows between these various observations. We are definitely making progress on figuring out the mechanisms, but causality is difficult to prove in humans.”
With causal mechanisms unclear, most of what doctors can do is try to manage symptoms, and perhaps take a stab at what might be underlying mechanisms without knowing for sure if they’re aiming at the right target.
In my case, that’s meant trying one drug that may help the neuropathy pain (which is notoriously unresponsive to conventional pain drugs) and boosting the dose of an allergy drug I was already taking to perhaps tamp down overactive parts of my immune system. As I write this, I’m starting a gradual ramp-up of dosages, so It’s too soon to know whether this is helping, but I’ve already had some unpleasant side effects.
And to get this far, I had to fly from Hilo to the Queen Emma Post-COVID clinic in Honolulu, the only such clinic in Hawaii. Clinics specializing in Long COVID pretty much only exist in big cities with major medical centers. In California, they’re overwhelmingly concentrated in the Bay Area, LA, and San Diego. If you don’t live near one of those places, expect to spend time and money traveling.
That said, I’m lucky in several respects. First, my symptoms are not nearly as severe as what some face. I can’t hike anymore, but I can still walk at least a few blocks. And my illness hit just as I was transitioning from a high-intensity full-time job to semi-retirement, doing contract/consulting work and a bit of writing to the tune of 10-15 hours per week. I can manage that more relaxed schedule with little difficulty. I don’t know if I could do my former job anymore, and I know I couldn’t if my employer insisted on my resuming my former SF-to- Oakland commute five days a week, or if my job had entailed any significant amount of physical labor.
Which brings us to the US worker shortage that the business pages have been moaning about for at least a year, with articles literally asking where all the workers went. In response, Long COVID advocates scream, “They have Long COVID!” Surely some do, but exact numbers have been hard to pin down. Estimates have ranged from a few hundred thousand to a few million knocked out of the workforce.
One of the researchers trying to crunch these numbers is Katie Bach, a nonresident senior fellow at the Brookings Institution. “If I had to take a guess today,” Bach says, “I would guess that somewhere in the neighborhood of 500,000 to 1,000,000 full-time equivalent workers are out of work due to Long COVID. In some, and maybe many cases, there is an overlap between people who leave the workforce due to retirement and people who have Long COVID. In other words, for now, the largest impact may be among older workers.”
Bach notes that enormous gaps in our knowledge remain, including “the actual number of people who have had to stop working due to Long COVID, or have reduced hours and therefore lost income.” We also don’t know much about workers with Long Covid who continue to work. “Some of those people may be sick enough that the productivity is impacted,” Bach notes, leaving a lot of uncertainty about Long COVID’s impact on the economy.
Adding another source of uncertainty is that due to lack of knowledge of Long COVID among primary care providers, many people may be experiencing symptoms that make it hard for them to work, or to work full-time, without knowing what’s causing them.
Meanwhile, America is charging ahead with “back to normal,” trying very hard to pretend that the pandemic is over: Mask mandates have all but disappeared, and the national COVID emergency, which provided many types of assistance, is expiring this spring. The Biden administration seems to be putting all its eggs in the vaccination basket, but that isn’t going well: In February, the CDC reported that only 27.1 percent of adults and 18.5 percent of adolescents who had completed their original COVID-19 vaccinations had gotten the bivalent booster—covering both Omicron variants and the earlier COVID strains—that became available Sept. 1. We are becoming a nation of unmasked people with waning immunity to a virus that’s still killing nearly 2,000 Americans a week and can disable you for life, pretending everything’s normal.
All of this frustrates Lisa McCorkell, co-founder of the Patient-Led Research Collaborative and co-author of the Nature Reviews article cited above. “Politicians are eager to move past COVID, despite it continuing to impact us daily,” she says. “This is impacting both the response to Long COVID and [efforts at] preventing people from developing Long COVID.” The end of the federal health emergency, McCorkell argues, means that “critical support that people need to survive is going to be taken away and it will prove disastrous, particularly for the most marginalized.”
Dropping precautions and pretending the pandemic is behind us is insane. We’ve known for some time that neither prior infection nor vaccination provides anything close to complete protection against a second or third infection. And a growing body of evidence indicates that repeated infections increase the risk of Long COVID and can make existing cases of Long COVID worse. One study of Brazilian healthcare workers found that “acquiring more than one COVID-19 infection was a major risk factor for long COVID.” And a British survey of Long COVID patients found, “For 80 percent of respondents, reinfection made at least one of their Long COVID symptoms worse.”
In a recent American Medical Association article Rambod A. Rouhbakhsh spelled things out: “We know from a pretty elegant study that was recently published in Nature Medicine that each subsequent COVID infection will increase your risk of developing chronic health issues like diabetes, kidney disease, organ failure and even mental health problems.” He called repeated COVID-19 infections “akin to playing Russian roulette.”
On the brighter side, McCorkell sees more attention being paid to Long COVID, by both the pharmaceutical industry and the federal government, which last year released its National Research Action Plan on Long COVID. And she notes that her Nature Reviews article was widely shared right out of the gate, another sign that the issue is getting noticed. More research is happening, though it’s not at all clear that funding is adequate given the complexity of the challenge.
Still, it feels like the U.S. and many other countries around the world have decided that playing Russian roulette with a deadly virus is okay. I suspect we’ll come to regret this.
