Those concerns have been aired in a series of just-released video interviews, as the Ministry of Health says it's impossible to quantify how many people are living with the post-viral condition today.

A constellation of persisting symptoms thought to accompany 10 to 20 per cent of infections, Long Covid can affect nearly every organ system in our bodies - yet there remains no universally-established treatment or cure.

A major study published earlier this year found that one in five participants reported Long Covid symptoms after their initial infection - and that many patients were still struggling to get help.

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The findings are drawn from a large study of 33,281 people in Scotland who tested positive for the coronavirus. Most of the results are in line with those from earlier, smaller studies.

Among a subset of 197 survivors of symptomatic SARS-CoV-2 infections who completed surveys at 12 months and 18 months, most reported lingering symptoms at both time points, researchers reported in Nature Communications.

Rates of no recovery at 12 months were 11% with 51% partial recovery and 39% complete recovery. Rates at 18 months were 11% no recovery, 51% partial and 38% complete.

Asymptomatic infections were not associated with long COVID. But among the 31,486 people with symptomatic infections, nearly half reported incomplete recovery at six to 18 months.

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The two most concerning aspects of long COVID are its high prevalence (up to 30% of those infected) and a link between reinfection and a higher risk of harmful outcomes.

American science writer Ed Yong, commenting on government responses to the pandemic, described them as a case of debrouillez-vous, which approximates to "you work it out - you're on your own".

In the face of official attitudes that are increasingly laissez-faire towards the continuing pandemic, many people no longer take even those precautions over which we have individual control: mask wearing, physical distancing and choosing carefully whether to attend crowded events. The consequences are an increase in both daily case numbers and the lurking burden of long COVID.

Omicron's first variant, BA.1, emerged in late 2021, substantially different - clinically and genetically - from earlier variants. It displaced the Delta variant and, in early 2022, was itself replaced by BA.2.

The degree to which BA.2 had evolved away from BA.1 is far greater than the genetic distance between the original version of SARS-CoV-2 and the Delta variant. BA.5, a sub-variant of BA.2, is now quickly overtaking other variants.

Recent data from the US Centers for Disease Control and Prevention show the rapid rise of the BA.5 variant and its replacement of other Omicron variants.

Omicron variants, and BA.5 specifically, show several worrying features. They can evade immunity acquired through earlier infections and breakthrough infections in vaccinated people. BA.5 is better able to infect cells, acting more like Delta than the previous Omicron variants.

What we know about long COVID

SARS-CoV-2 is not unique in its ability to cause post-acute symptoms and organ damage. Unexplained chronic disability occurred in a minority of patients after Ebola, dengue, polio, the original SARS and West Nile virus infections.

Collection date (month/day format), for week ending.
Recent data from the US Centers for Disease Control and Prevention show the rapid rise of the BA.5 variant and its replacement of other Omicron variants. US CDC, Author provided

What is different is the sheer size of this pandemic and the number of people affected by long COVID. One of the absolutely critical issues about long COVID is that we should not underestimate it. It is now clear from multiple large studies that:

• It is a set of syndromes
• it affects multiple organs and systems
• it resolves in some but remains persistent in others
• it can be markedly debilitating
• its risk is reduced by vaccination
• its pathology is poorly understood
• we are just beginning to find ways to predict risk and monitor its course, and
• management is, at best, ad hoc.

Perhaps most crucially, reinfection may now become a feature of the pandemic for at least the next 12 to 36 months, raising the risk of long COVID with each repeat infection.

Some large studies in Denmark, England, and the US show 20-30% of people who tested positive for COVID-19 experienced at least one post-acute symptom, up to 12 months after infection. Symptoms included loss of smell and taste, fatigue, shortness of breath, reduced limb strength, concentration difficulties, memory disturbance, sleep disturbance and mental or physical exhaustion.

In England, the prevalence of persistent symptoms was higher in women and older people. Obesity, smoking or vaping, hospitalisation and deprivation were also associated with a higher probability of persistent symptoms. Those who were hospitalised with COVID in the UK showed even more severe outcomes.

Long COVID affects all age groups, but younger people have a higher risk for heart-rhythm disturbances.
In the US, younger survivors were at higher risk than people over 65 for heart-rhythm disturbances and musculo-skeletal pain. This is consistent with other observations that long COVID is not a disorder only of older age.

However, older survivors had a statistically significantly higher risk of developing certain conditions, including kidney failure, clotting disorders, cerebrovascular disease (stroke), type 2 diabetes, muscle disorders and a variety of neurologic and psychiatric conditions.

A US study involving more than five million people shows the risk of long COVID increases with the number of reinfections. But vaccination consistently reduces the risk of long COVID as well as severe disease, hospitalisation, ICU and death.

The century-old lesson we're yet to apply

There are lessons from the 1918-19 influenza pandemic that we need to bring back into our repertoire, not for a month or two but for the long term.

Japan adopted mask-wearing as a key public-health element on a short list of available measures. As science writer Laura Spinney notes in her excellent 2017 coverage of the flu pandemic's history, it "probably marked the beginning of the practice of mask-wearing to protect others from one's own germs".

In Japan, mask use was compulsory for some, such as the police. In some towns, people were not permitted on public transport or allowed to enter a theatre without a mask. Japan had the lowest death rate of all Asian countries in the flu pandemic and is looking to be close to the lowest cumulative mortality in the OECD for the COVID-19 pandemic.

Mask-wearing has protected people in Japan during the flu pandemic a century ago and again now as new Omicron variants continue to surge.

During the 1918-19 pandemic, the US, unlike Europe, put considerable effort into public-health interventions, which reduced total mortality. San Francisco, St Louis, Milwaukee and Kansas City had the most effective interventions, reducing transmission rates by 30-50%.

In historian Geoffrey Rice's Black November and Black Flu (together the most comprehensive coverage of the 1918-19 pandemic in Aotearoa), there are some photographs of people wearing masks and a reference to "gauze masks" for shopkeepers. However, there is little evidence to suggest mask wearing was widespread or encouraged in New Zealand.

The influential Italian newspaper Corriere della Sera reported daily death tolls during the 1918-19 flu pandemic until civil authorities asserted it was stirring up anxiety and forced it to stop. As Spinney notes, people could see the exodus of dead bodies from their neighbourhoods and the silence was provoking even more anxiety.

The pandemic and the silence conspired to confuse people about the efficacy of public-health measures and compliance dropped off even further. People drifted back to church and race meetings - and left masks at home. Public-health infrastructure collapsed.

Vaccines (not available a century ago) are almost all that stands between us and a similar collapse. We would remain stronger and healthier - and reduce the burden of long COVID - if we increased vaccination coverage and universally adopted Japanese-style regular mask use and physical distancing.

• John Donne Potter. Professor Research Centre for Hauora and Health, Massey University
• First published in The Conversation. Republished with permission

Long COVID is a growing concern. But we still don't have a clear definition and there are insufficient data to provide a trajectory or a timeline for how long it lingers.

The National Institute for Health and Care Excellence (NICE) has proposed a working definition:

Signs and symptoms that develop during or after infection are consistent with COVID-19 but continue for more than 12 weeks and are not explained by an alternative diagnosis.

It usually presents with clusters of symptoms, often overlapping, which can fluctuate and change over time and can affect any system in the body.

Although some symptoms resolve over time, others persist or re-emerge. There are many individuals with symptoms lasting 12 months or longer.

Downstream damage can affect the brain, heart, lungs, pancreas (causing diabetes) and other organs. However, we know that vaccination is protective against long COVID, whether given before or after the initial infection and illness.

On average, the risk is higher for people with more severe disease, but many develop long COVID after a mild initial illness.

Long COVID is more common in women than men, but there is no consistent relationship with age. Although the initial viral illness is more severe for older people, this is not true for long COVID.

Common symptoms of long COVID

Most studies show a general pattern of higher prevalence of long COVID for people with more severe illnesses.

The estimates of prevalence range from 19% to 57%, with one outlier at more than 80%.

The three largest cohort studies place it at 19% to 30%, showing long COVID is common enough to be a major public health threat, independently of acute COVID.

It is becoming increasingly clear that long COVID is much more than a collection of symptoms. Rather, it is a recognisable clinical syndrome (or set of syndromes) with well-described underlying pathology.

SARS-CoV-2 infection can contribute to long COVID in a variety of ways.

It can cause direct damage to tissue as well as microscopic blood clots, which sometimes result in deep vein thrombosis, pulmonary embolism and stroke.

The immune system can itself cause damage when it begins to attack normal tissue or produce a cytokine storm.

All of these effects are seen in COVID-related brain damage, which is likely to be the result of infection, micro clots, lack of oxygen and an activated immune response.

Impacts on the brain and heart

A study across 62 healthcare organisations reported that, among almost 250,000 patients with COVID, 33.6% were diagnosed with neurologic and psychiatric conditions in the following six months, with 12.8% being new-onset conditions.

For ICU patients, the comparable estimates were 46.4% and 25.8%.

Specific outcomes included stroke, Parkinson's, dementia, anxiety and psychosis.

A large study of US veterans reported an elevated risk of anxiety and depression.

Studies in the UK and China established evidence of cognitive decline, again related to the severity of the initial illness.

A brain-imaging study in the UK involved participants who were initially scanned pre-infection, making it possible to see clearly the timeline of changes.

The COVID-affected group showed damage to brain tissue and an overall reduction in brain size compared with those who had not been infected - changes that occurred with even relatively mild infection.

The most comprehensive study of cardiovascular complications of SARS-CoV-2 infection involved a cohort of more than 150,000 US veterans and more than 11 million controls.

It revealed an elevated risk of new-onset stroke, heart arrhythmia, pericarditis and myocarditis, ischaemic heart disease and clotting disorders.

As with the brain, risks and burdens were evident even among individuals who were not hospitalised with acute infection and increased in a graded fashion across non-hospitalised, hospitalised and intensive care.

Other studies have shown inflammatory changes in the heart and markedly reduced oxygen supply to both blood and tissue.

Long COVID affects lungs and other organs

COVID can result in prolonged changes in both the lung blood supply and immune system, which may produce lethal lung disease and seems likely to cause persistent lung damage in those who recover.

A meta-analysis of eight studies with more than 3,700 patients reported 14.4% of those hospitalised with COVID developed diabetes.

Patients with pre-existing type 2 diabetes are already at higher risk, but this provides evidence that SARS-CoV-2 can cause new-onset diabetes.

The virus can also damage muscles, which plausibly explains the very common symptoms of fatigue and muscle pain.

Immune abnormalities probably contribute to the chronic inflammatory aspects of long COVID.

Kidney damage occurs early during long COVID, particularly among those with respiratory failure. Clots in small blood vessels can cause erectile dysfunction.

Long COVID in children

Post-acute effects have been described in all infectious childhood diseases and COVID is no exception.

It is useful to consider the persistent effects of COVID in children in three main groups:

multisystem inflammatory syndrome in children, a rare but severe syndrome that occurs from two to five weeks after the initial illness

longer-term symptoms grouped under the umbrella term of long COVID, with similar symptoms to adults

tissue-level damage (heart, lungs, blood vessels and brain) that may be silent during childhood but cause chronic disease in later life.

Minimising harm from long COVID

Prevention measures currently in place are not enough, given what we now know about the full population impact of widespread COVID infection.

Prevalence is much less clear in children but the impacts of the pandemic could potentially last decades.

Damage to tissues that may be undetected in childhood could emerge as chronic disease as the pandemic generation ages.

We now have a good sense of the services we need in Aotearoa for long-COVID patients.

There is strong and consistent evidence that vaccination protects against long COVID.

However, recurrent infections with Omicron (and any future variants) suggest we need a "vaccine plus" approach while we wait for universal, sterilizing vaccines.

Public-health measures such as mask-wearing remain highly protective because they are effective for all variants.

But most of all, New Zealand urgently needs to deliver a high standard of air quality in all indoor settings, especially schools.

These vital protections against airborne viruses are essential to ensure New Zealand can safely navigate the remainder of the pandemic without generating a long shadow of chronic disease.

• John Donne Potter is Professor, Research Centre for Hauora and Health, Massey University
• Amanda Kvalsig is Senior Research Fellow, Department of Public Health, University of Otago
• First published in The Conversation. Republished with permission.

It was a Thursday and I was heading into London to work from my firm's office for a couple of days while staying with my parents just to the north of the city.

On the weekend I stayed in London with kiwi friends and we would all go to a friend's engagement party.

When I left my apartment in Bristol that day with my backpack and laptop, it turned out that it was for the last time.

I would never live there again.

On the train to Paddington, I began to get a headache and feel a little rough.

During that day at the London office, this got worse and I began to have what I will draw a veil over by calling it ‘gastrointestinal symptoms'.

I had a small tickle in my throat but no real cough.

But the ‘slightly rough' feeling became worse and, by the time I left work early to get to my parents, I was beginning to have that intense ‘get me out of this poisoned body' feeling so characteristic of the proper flu.

The next little while is a bit of a blur.

I was off work for a couple of weeks and the second week was worse than the first.

This was when the cough appeared - and moving around became more difficult.

In the meantime, my office switched to remote working and the UK (eventually) went into lockdown. And I had given my parents Covid and taken up what turned out to be permanent residence with them.

There was a dicey couple of weeks when none of us was well and food was in short supply, but a kind neighbour brought us shopping and we felt very grateful that we had a safe refuge and could be together.

My recovery was very slow.

It took weeks to be able to walk a few blocks to the park and I couldn't really taste or smell.

Months later my cough still lingered and I was often quite fatigued. I needed an operation for endometriosis in November and hoped after that that I would be in a better position to get better properly.

After the operation, I'd been trying to gently increase exercise to help get some fitness and condition back.

And then, one day in May 2021, just over a year after I first came down with COVID, I overdid it.

I had what I imagine an asthma attack must feel like.

I could barely talk and I just couldn't seem to get enough air into my body.

After an hour or two of lying on my front to take the weight off my lungs, I began to feel a bit better.

But this was really just the beginning of what I thought of as The Great Decline.

My heart rate began to spike at over 120bpm just walking across the room.

My shortness of breath became more extreme and I became dizzy and unsteady on my feet.

I fainted waiting in line at the pharmacy and then discovered that I had to lean on my parents to get from the car to a building.

Even sitting down to work, I began to have heart palpitations and was having huge trouble focussing.

Increasingly, halfway through a sentence, my mind would be wiped blank, leaving me hanging like a train on a half-completed bridge.

This was one thing at home but disastrous at work in front of clients or when slowing my team down in design workshops.

Even working independently, I found I couldn't read the material let alone write text for reports or emails.

Eventually, I realised that I couldn't do my job anymore.

I went to my GP and at one point had to go to A&E. Both declared they could find nothing wrong, anxiety was likely at the root of it, and I should consider talking therapy.

Therapy is great and I think that if it were normalised and made free-of-charge to everyone, the world would likely be a better place.

But there are limits to what therapy can achieve and repairing a body is beyond it.

Luckily, I had private health insurance through work and found a cardiologist who had been working with Covid and long-term Covid patients throughout the pandemic.

He recognised my symptoms and quite simply believed me. When I mentioned that previous doctors had thought that this was largely psychological, he replied: "Not understanding a pathology is no excuse for bad medicine."

After many tests and visits to electrophysical, respiratory and rheumatology specialists I was diagnosed with:

• a heart arrhythmia (Supraventricular Tachycardia — SVT)
• a form of autonomic dysfunction, Vasis Type 3 (Postural Orthostatic Tachycardia Syndrome — POTS)
• Fibromyalgia
• Laryngopharyngeal Reflux (LPR)

Long Covid has radically changed my life.

But it has also given me a new perspective on my previous life and my body. I am frequently amazed when I contemplate what I used to be able to do in the past. Continue reading

• Charlotte Murphy is a New Zealand-born landscape architect of proud Irish heritage. She has been living in the UK since 2017.

One of the costliest, it is now feared, could be a tsunami of "long COVID" cases.

Long COVID is a serious ongoing illness that follows an acute episode of the disease. It is characterised by extreme fatigue, muscle weakness, post-exertional malaise and an inability to concentrate ("brain fog"), among many other symptoms.

The focus, therefore, needs to shift towards protecting quality of life as much as saving lives in the first place.

In the UK it is reported two million people have experienced long COVID. Around 385,000 having suffered symptoms for a year or more.

The nation's so-called "Freedom Day" on July 19 went ahead despite expert warnings of soaring infections, especially among younger and unvaccinated people. A further 500,000 long COVID cases have been predicted during the current wave of infection.

These numbers far outstrip the already staggering 150,000 deaths attributed to the virus in the UK — and the associated costs will be significant.

Putting a price on long COVID

The social costs of long COVID should not be underestimated. For example, suppose an elderly person contracts COVID-19 and dies, when they might otherwise have lived in full health another five years. A health economist would say their early death has cost society five "quality-adjusted life years" (QALYs).

This is usually expressed as a monetary amount that can then be weighed against the cost of saving that person's life when deciding on appropriate pandemic protections.

Contrast this with a young person contracting COVID-19 and not dying, but suffering long COVID for 10 years, with their estimated quality of life effectively halved while unwell.

They too will have lost an estimated five QALYs — the same social cost as the elderly person who died.

This means if we ease pandemic restrictions on the basis that people are no longer dying, we might be facing equally serious social costs from long COVID.

If long COVID is chronic and much more common than death from COVID (as the current data strongly suggest), the costs rise further. If sufferers of long COVID also face shortened lives, having endured years of debilitation and misery, the costs rise again.

Rough first estimates suggest the overall economic cost of long COVID could be almost half the cost of COVID-related deaths in the UK.

For younger people, however, the social costs of long COVID are estimated to far outstrip those of dying, meaning they will carry a disproportionate burden of the pandemic's long-term costs.

Comparison with chronic fatigue syndrome

Long COVID is often likened to chronic fatigue syndrome (CFS), which is sometimes called ME (for myalgic encephalomyelitis). Both are characterised as a form of "post-viral fatigue syndrome", with CFS leaving sufferers seriously debilitated and unable to maintain normal lives — often for years, even decades.

While we have no long-term data to gauge how chronic or serious long COVID might be, we should be mindful that it could be as long-lived as CFS.

Furthermore, long COVID is also reported to affect multiple organs in measurable ways, including damage to major organs like the heart and lungs.

Consequently, long COVID could shorten lives, if not end them. This distinguishes it from CFS which - frustratingly, for sufferers wanting to be taken seriously - lacks recognised objective markers.

Protecting quality of life

On a personal note, I suffered CFS for 11 years and recovered in 2004. It emerged after a flu-like illness in 1993, which evolved into a constellation of symptoms that defied explanation or treatment.

Recovery required years off work and, with the care and support of family and friends, patient and determined rebuilding of my ability to lead a normal life.

The condition involved huge personal, social and professional costs. I was unable to maintain a normal life, relationships and work commitments. Constant ill health, with no end in sight, was enormously frustrating and miserable.

It never helped that medical practitioners were either incredulous or believed I was unwell but had no real solutions to offer.

Like CFS, long COVID is a serious condition that cannot be taken lightly. Even if not fatal, it can still seriously affect the sufferer's quality of life. Hence, policymakers need to consider the social costs of long COVID when deciding when and how to ease pandemic restrictions.

Our pandemic response will need to be as much about protecting quality of life as it has been about saving lives. We need to take serious steps to keep long COVID at bay.

• Richard Meade is a Research Fellow in Economics, and in Social Sciences & Public Policy, Auckland University of Technology.
• First Published by The Conversation. Republished with permission.