I’m relieved to see New Zealand starting to look at long covid. Our relatively low covid infection rate has meant this hasn’t been prominent in the pandemic response debate. The arrival of the very fast spreading omicron variant points to now being the time to look at the long range covid forecast, not just how to get back to normal.
I’ve been following people with long covid online, including in NZ, since near the start of the pandemic, and it’s been obvious from early on that this is a serious condition for individuals and for society. Long covid is when people either don’t fully recover from covid, or they recover and then get related symptoms some time later. Some of these symptoms are sustained for a while and then leave, some just seem to stay. Some are less problematic, some are very serious, and some create long term disability. It can affect nearly any organ system in the body, making it a complex syndrome rather than a discrete, easily understandable illness.
Estimates of how many people with covid end up with long term symptoms vary. I’ve heard the MoH is using a 10% rate but internationally it’s more like up to 40%. It also depends on how long covid is defined. I’m not referencing much, because I think this is such a new area and there are going to be a lot of competing ideas and data sources out there. In other words, we just don’t know yet how this will work with omicron. I’m less interested in arguing selective data than I am in looking at the importance of caution, and why the precautionary principle is sound.
Mainstream media in New Zealand have been reporting on a recent study on pre-omicron long covid. RNZ in October,
According to a new study from Oxford University, 37 percent of infected had at least one long Covid symptom diagnosed.
“Two hundred and seventy thousand Covid survivors, and they followed them, and between a third and a half had symptoms three to six months later,” Potter said speaking today to Saturday Morning.
“And those are a wide variety of symptoms that are indicative of the fact that this particular virus infects a lot of different parts of us. It’s not just a respiratory virus.”
“It’s a virus that gets into lots of organs and has downstream consequences that are really nasty for a lot of people.”
Long Covid symptoms can include breathing problems, abdominal symptoms, fatigue, pain, anxiety and depression.
Victims can have myalgia, pain in the muscles, which can present similar to chronic fatigue syndrome.
“Abnormal breathing persists in a decent percentage of people almost 20 percent of people because of damage to the lungs,” Potter said.
“Some people have headaches and cognitive symptoms which tells us that it does damage to the brain.”
From the CDC’s clinical care page on long covid,
It’s worth pointing out here that this is a novel illness. Which means that we don’t actually know what we are dealing with yet. In part because we haven’t had enough time to see how this plays out over time. And because it takes time to do medical research.
It’s also worth pointing out the similarities with Myalgic Encephalomyelitis, a chronic illness that the medical profession has long struggled to even understand let alone treat. M.E. is also quaintly known as Chronic Fatigue Syndrome, which is akin to calling tuberculosis Chronic Cough Syndrome. Minimisation is part of a pattern that plays into priorities in medical funding, and governmental responses in the Health and Welfare systems, as well as prejudices in society.
Of particular note in that chart is the presence of Post-Exertional Malaise, one of the key indicators of M.E. and a symptom that means normal activity can become very constrained as it worsens fatigue and other symptoms. M.E. is also known as post-viral syndrome, and there is now research looking at the similarities between the two illnesses.
I’m not sure if we know much yet about how long covid plays out in vaccinated and unvaccinated people, but obviously unvaccinated people are more likely to get covid in the first place, so have an increased risk of long covid. This from Australian data geeks on pre-omicron long covid in NZ,
We also don’t know a lot yet about how long covid will impact on people with already existing other health disabilities. And for those thinking that they’re sweet because they have no pre-existing conditions so covid is unlikely to affect them much, M.E. hits some very fit and healthy people hard, and it’s unclear how those without comorbidities are affected.
There are additional issues for children, and groups of people already at a higher risk from covid eg Māori and people living in poverty.
So what are the concerns here? Foremost is that people who contract covid are also then at risk of long term disability. Not just some annoying symptoms that drag on, but life altering disability.
That obviously is also a big issue for the State. What will be the impact on the Health and Welfare budgets? Will productivity be affected? Will front line workers, including in highly trained professions like nurses and doctors, be disproportionately affected and how will this impact on the wider health system? I don’t think I’ve seen the government talk about this.
There’s also the grim and bleak prospect that people who become unable to work from long covid will have their lives changed in other ways. Work and Income current payment rates:
I’m laying this out because I want it to be clear that Labour and New Zealand generally are ok with that situation. In the long years that Labour has been dragging on sorting welfare rates, there’s been almost nothing from them about the rates of people who cannot work due to disability.
It’s also in the health system, where people with chronic illnesses, sometimes severely disabling, often get very little in the way of practical assistance at home.
We know that people on benefits because of disability and illness also face particular discrimination. Then Labour leader David Shearer’s 2012, dog whistling, painter-on-the-roof speech to Grey Power was both shocking and unsurprising as Shearer empathised with the good working class man who goes out to earn for the family everyday while his bad neighbour on sickness benefit is up painting his roof. Long covid already includes invisible disability. You can’t see PEM, pain levels, or any number of the other symptoms, and prejudice is built into our governance systems.
The benefit bludger memes get applied on steroids to ill people who don’t look disabled enough, who are not just bludgers but malingerers.
All of that is the result of long standing state discrimination against disabled people, those with chronic illnesses in particular.
There is some hope here that long covid will wake up the government and medical profession, and we will see a change in attitude. But let’s not forget that when the pandemic first arrived, we were going into lockdown, and Labour were giving out money to businesses and workers, people on benefits had to wait for any financial assistance. Which meant no extra cash to buy masks, hand sanitiser, or bulk food so they could avoid crowded places. This is a long standing attitude towards disabled beneficiaries in particular. Get to the back of the queue.
This at RNZ from Jenene Crossan, 37th person in NZ to test positive for covid (in 2020) and covid long hauler, speaks to the attitudes to long covid,
Sufferers “can’t get ACC, they’re not getting any kind of public health response, they’re being ignored in the public health system, they’re being pushed back saying ‘we have no place for you, we don’t know what to do with you’, being gaslit. “We don’t believe in Long Covid’ – they’re hearing that from GPs still.
“There’s no pathway, there’s no protocols, there’s no official information about whether we should be getting the vaccines or not. There’s a lot of ‘yes we plan on… ‘ but not a lot of ‘yes we’re doing’.”
For people struggling with the restrictions of the pandemic response, there is a not much talked about dynamic of the relationship between constraint and freedom. If long covid affects between 10% and 40% of people that contract covid, what should we then make of the arguments for open borders, no more lock downs, and letting it rip until we have natural or herd immunity? What if natural immunity is something that we can gain in later years, once covid has settled into a more recognisable pattern but is premature now? If we increase community transmission, what are the likelihoods of further variants that may or may not be more deadly and may or may not be associated with higher levels of long covid?
We just don’t know.
New Zealand is still in a fairly unique position in the world because of our low community transmission rates. Omicron presents new challenges. The precautionary principle tells us that we can act to prevent disability as well as death, and that we can keep our future options open by being careful now. The alternative is that we gamble future freedoms for short term gain.
To me long covid looks like a shit show waiting to happen on multiple, life destroying levels. We should be taking it extremely seriously, and learning from the experiences of people with similar chronic illnesses.
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