“Pandemics are not just mass fatality events, they are mass disabling events,” a radiologist told me a couple of weeks ago. I’ve spent the month of October talking to New Zealanders who caught COVID-19 and then didn’t get better again. I spoke to seven people with long COVID, as well as people experiencing or studying myalgic encephalomyelitis (ME), which is also known as chronic fatigue syndrome. The two are likely sister illnesses, rooted in the same immunological mystery.
The trouble with ME, and for some people with long COVID, is that the usual suite of tests don’t find anything wrong with them. As University of Otago emeritus professor Warren Tate has learned, the damage that leads to ME is visible only on a molecular level. The same is likely true for some types of long COVID.
The radiologist developed the symptoms of ME about a year ago. He remembered learning about it at medical school in Otago back in the day. But you don’t really get it, he realised, until you get it.
Admist the deluge of facts about COVID-19, two pieces of important information have failed to surface. One is that the risk of disability is higher than the risk of death. Connected to this: we can’t predict who is most at risk of losing their health from the virus in the same way that we can predict who is most at risk of losing their life. And so I looked at long COVID, as well as the other information voids that the government is facing, in the feature on page 60.
The second piece of information is that managing COVID-19 within our country is going to require changes on a structural level, not just a personal one.
In the past, the way out of epidemics has involved making widescale changes to the fabric of society. We had to improve sewerage systems to get rid of cholera. We had to improve hygiene habits to prevent sepsis. We are going to have to improve ventilation in order to stop the Delta variant in its tracks. And we are going to have to change something about the nature of work to allow people to contain the virus.
Keeping yourself safe from COVID isn’t just on you. It also depends on the options available to the people around you: whether they have the ability to stay home from work with a sore throat or keep a feverish child back from school. It depends on their access to tests and vaccinations and masks.
The structural change we face today is in the form of a national rethink of how we manage illness, and how illness and work interface.
Is this a paranoid view? Epidemiologist Michael Baker laughs when he tells me about being criticised for “barking at cars”. His job is to spot unknowns—the ones that might come back to bite us—so that we can know them better.
“Maybe this will turn into quite a benign virus in a couple of years’ time,” he says. “We’ll say, ‘Well, what was all the fuss about?’ We have incomplete knowledge.”
But the practice of public health, he says, defaults to a precautionary approach.
“When you don’t know about the level of threat from something, you take a more severe interpretation until proven otherwise.”
This makes sense to me. The human immune system is no less complex than the human brain, and we don’t know what’s going on in either of them. We can detect subatomic particles and operate robots on the surface of Mars, but we still don’t know why two people’s bodies act differently when the same viral particles go up their noses.
That, I think, is worthy of our caution.