Long COVID deserves a long, hard look

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In our haste to put the pandemic behind us, let’s not forget that COVID-19 will be forever for many.

The virus and our political and societal response to it have both left scars – mental, physical and economic – that will take a long time to heal.

The future is especially uncertain for those with “long COVID.”

Studies estimate that anywhere from 5 per cent to 30 per cent of people infected with SARS-CoV-2 will end up with lingering symptoms, sometimes severe, that last six months or more.

When you consider that at least 3.3 million Canadians, and 436 million people around the world, have been infected (and we know those are large underestimates because we have pretty well given up on testing), the fallout could be massive.

Even in the most optimistic scenario, we’re looking at 150,000 to 400,000 more Canadians living with a chronic health condition as a result of the pandemic. Consider, too, that, according to a study in JAMA, about 10 per cent of health workers – a group with high COVID-19 infection rates – now have long COVID. Many are leaving their jobs, exacerbating health care staffing woes.

Some are calling it the coming postpandemic pandemic.

We have to ask ourselves whether we’re any more prepared for this onslaught than we were for the virus in the first place. All indications are that we are not.

There is nothing simple about long COVID.

It’s difficult to diagnose and even harder to treat. More than 200 symptoms have been catalogued, affecting 10 organ systems, from the heart to the brain to the gut. Because there is no single biological cause, seemingly, no two cases are the same.

In fact, long COVID has become a catch-all term for many things ailing us today, making it difficult to pinpoint how many sufferers there are, or how to treat them. It’s even more difficult to study.

There isn’t even agreement on what the condition should be called. The World Health Organization has dubbed it “post-COVID-19 condition,” and Health Canada uses that designation. The U.S. National Institutes of Health has settled on “post-acute sequelae of COVID-19,″ or PASC.

What we do know is that long-term health problems are not unusual after infections, whether they are viral, bacterial or parasitical. When the body’s immune system takes a beating, it can have long-term consequences.

Pandemics don’t only kill, they maim and linger.

After the Great Influenza, which killed at least 50 million people between 1918 and 1919, millions of survivors suffered from what was known as “sleepy sickness” (encephalitis lethargica), and many developed a Parkinson’s-like disease. There were analogous spikes in neurological problems such as encephalitis after the influenza pandemics of 1957 and 1968.

Similarly, while vaccination virtually wiped out polio, millions who contracted the frightening viral illness as children suffered post-polio syndrome decades later. We even see post-Ebola syndrome in the rare survivors of the Ebola virus.

There are many similarities between long COVID and myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), which also tends to be diagnosed after a viral infection.

The good news, if we can frame it in those terms, is that we’ve learned a lot about long COVID in a short time.

In particular, scientists have identified key factors that help explain why some people have long-lasting symptoms and many more do not.

Research published in the scientific journal Cell found four distinct risk factors: high levels of SARS-CoV-2 RNA in blood during initial COVID-19 infection; the presence of some autoantibodies; reactivation of the Epstein-Barr virus; and having type 2 diabetes. It’s worth noting that long COVID is less likely to occur in the vaccinated, and vaccination postinfection can even alleviate symptoms.

What is intriguing is that long COVID affects both those who have mild and severe cases of COVID-19. The key risk factor seems to be autoantibodies, which attack the body, not just viral invaders. This misfiring of the immune system is also the cause of auto-immune diseases such as lupus and rheumatoid arthritis.

Children seem to have slightly lower rates of long COVID, but there are also unusual consequences, such as a spike in diabetes in young people after infection.

We are now seeing the emergence of clinics specializing in the treatment of long COVID, and advocacy groups such as Long Covid Canada. This is good: Despite the complexity and vagueness of long COVID, we can’t afford to be dismissive, as has often been the case with chronic fatigue syndrome.

We need better diagnosis and treatment, more compassionate care, and a large investment in research.

We have to take this postpandemic fallout as seriously as the pandemic itself.

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