The cost is set to go far beyond human suffering, yet almost five years into the pandemic, not only are there still no treatments for long Covid, there aren’t even any diagnostic tools – and we don’t seem overly interested in finding them.

The jig is up. People are catching on that “mild” Covid-19 may not be so mild, and that the mysterious lingering symptoms they’ve experienced after catching the virus, such as fatigue and brain fog, may just be connected. For others, this will be the first time that they put two and two together. I hate to be the bearer of bad news, but strap in for what comes next.

Recently, RNZ ran a piece outlining the estimated $2bn per year economic cost of long Covid in New Zealand and signalling that further research would be needed to determine a more precise figure. The average reader would assume that this research is under way or has at least been planned and funded. Human suffering aside, such a hit to productivity would surely raise alarm bells across the political spectrum!

I say this solemnly: yeah… nah.

Almost five years into the pandemic, not only are there still no treatments for long Covid, there also aren’t even any diagnostic tools – and we don’t seem overly interested in finding them.

At present, a long Covid diagnosis relies on a patient finding a doctor with up-to-date knowledge, who will believe their symptoms, and who will spend time investigating further to rule out other possibilities. This mythical trifecta is out of reach for most people, particularly women, who are affected by immune conditions at far higher rates, but have their symptoms written off as hysteria; and Māori and Pasifika, who face barriers to healthcare, and have their symptoms written off as laziness. Obtaining accurate data on prevalence under these circumstances is simply impossible.

In this way, and several others, long Covid mirrors ME/CFS (myalgic encephalomyelitis), a brutally debilitating biophysical condition, though the oft misused term “chronic fatigue” doesn’t quite convey that. Around half of long Covid sufferers meet the criteria for ME/CFS, which by the World Health Organization’s scale has a worse disease burden than HIV/Aids, multiple sclerosis (MS), and many forms of cancer. But again, there are no treatments.

I suffer from ME/CFS myself. My illness predates Covid-19 and came on after an infection with cytomegalovirus (CMV). I went from a fit and active young man to debilitatingly sick and fatigued, with several unexplained symptoms.

Pre-pandemic there was estimated to be more than 25,000 people in New Zealand suffering from ME/CFS, and only one specialist in the country, working one day a week, who has since retired (well earned, bless her). For years I had been praying for any sort of diagnosis, even if it was bad, so that I could get on the path to recovery. I got the diagnosis – but for a disease with no path to recovery.

As the pandemic unfolded, patients and advocates in the ME/CFS community warned that a tsunami of disability was approaching. They were of course ignored, as they have been for decades, and are now joined by masses of long Covid sufferers facing the reality that the medical profession has no answers for them, except perhaps euthanasia.

Frustrated with my lack of options, I connected with cellular immunologist Dr Anna Brooks, who had become a leading expert on long Covid, so I assumed that her biomedical research would be well supported. Alas, she detailed the uphill grind that it’s been to gain traction compared to other countries, and that generous donations, usually from patients themselves, had been the driving force of funding.

Together we founded DysImmune Research Aotearoa, with the goal of developing diagnostic tools leading to treatment for post-viral illnesses like long Covid and ME/CFS. In layman’s terms, we collect blood samples, analyse differences in cells, and put together an immune profile. My priority is ensuring that Māori and Pasifika patients and researchers are at the table and taking action into our own hands.

We’ve made a small start, and we have some incredible collaborations lined up, with far-reaching implications for community health. We’re in the process of seeking partnerships to take things forward. The expertise exists, it’s here in New Zealand. Still, the barrier to progress across the research space is the urgency for resourcing. It is dire to say the least.

Without some long-term project certainty, it’s difficult to pull the necessary teams together. While study after study illuminates more horrifying long-term effects of Covid infections, and prevention has been completely abandoned, research and development for treatments for long Covid is tanking. The private sector is at the whim of the quarterly financial report, and with no guaranteed short-term profit in treating us, it has very little incentive to take the risk.

So, barring some philanthropic miracle, only government can fill this gap. Yet where Australia had set aside A$50m specifically for long Covid research, and the US Senate considers a billion-dollar long Covid “moonshot” bill, New Zealand has allocated nothing. We’re fast asleep at the wheel. No other country can determine how many of our people are impacted by post-viral illnesses. No other country can address our specific needs.

Since this government is focused on ambition, productivity and fast-tracking, I assume they’d want to be world leaders in research, warp-speed some projects, and get long Covid sufferers back into work, no? This is what we are calling for. Not surveys. Not “talk” therapy and positive thinking. Biomedical research.

Put the money down and commit to this. Seize this opportunity to right decades of neglect. There are tens of thousands of us fighting for our lives, and millions more around the world. You think it won’t be you, then after your next inevitable Covid-19 reinfection, it is, and you’re left to wonder why nobody stepped up.

Government, iwi and whānau ora groups, health organisations, philanthropists – reach out. Let’s work.

Rohan Botica (Te Ātihaunui-a-Pāpārangi, Ngāti Tūwharetoa) is a lived-experience researcher and co-founder of DysImmune Research Aotearoa.