NZ’s Long Covid blind spot

This week marks International Day of Immunology, with this year’s theme focusing on the connection between the brain and the immune system – a relationship crucial to understanding the impacts of post-acute infection syndromes like Long Covid, which is currently estimated to affect 400 million people.

Cognitive dysfunction, sensory sensitivity, and nervous system abnormalities (which I often describe as ‘auto-pilot disruption’) are hallmark symptoms of this condition, yet they remain poorly recognised. We need to deepen our understanding of how these symptoms reflect real, measurable changes in how the brain and immune system interact to develop better diagnostic and therapeutic strategies for many chronic inflammatory conditions.

In line with this growing recognition, a global consensus on Long Covid has just been published, the first to bring together clinicians, researchers, and people with lived experience from 28 countries. I represented Aotearoa New Zealand as part of the lead authorship team shaping a shared framework to better understand one of the most significant and lasting consequences of the Covid-19 pandemic.

The areas where general consensus was met include: the recognition of Long Covid as a complex, multi-system condition involving neurological, metabolic, and immune dysfunction – impacts that often present as invisible disabilities and are undetectable by routine tests; an understanding that Long Covid is an umbrella term encompassing overlapping and in some cases diagnosable conditions, each of which may require specialised care; and the acknowledgement that the long-term impacts of cumulative infections in children should be a research priority.

There was also strong consensus that healthcare workers urgently need access to education to recognise the complexity of Long Covid, and that the lack of a unified clinical definition continues to hinder diagnosis, clinical care, and research. Collectively, these findings highlight the urgent need for global investment, not just in research, clinical trials, and clinical care pathways, but also in strengthening equitable healthcare access and protecting vulnerable communities from the mounting impacts of Long Covid.

Although not a definitive guide, this paper marks the first time such a broad, interdisciplinary group has aligned on clinical, scientific, and structural approaches to Long Covid. As a researcher focused on immune dysfunction and post-infection syndromes, I see this paper as a crucial first step, a foundational framework to unify efforts, guide research priorities, and support future advances in science and care.

While Long Covid has brought overdue attention to the long-term health consequences of infections, this phenomenon is not new. Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) has long been recognised as a serious post-infection syndrome.

Some people with Long Covid will meet the diagnostic criteria for ME/CFS, distinguished by a key symptom: an inability to tolerate even minimal physical or mental effort, reflecting a breakdown in the body’s energy systems – or more directly, ‘broken’ mitochondria.

This isn’t merely feeling tired; it is debilitating exhaustion, often described as feeling ‘poisoned’, triggered even by minor exertion such as walking a few metres, and persisting for days or weeks. Unfortunately, no diagnostic tools currently exist to detect this dysfunction, medically termed post-exertional malaise. Developing such a diagnostic tool would finally provide the objective validation that patients have been missing for decades.

Recognising post-exertional malaise is critical, not just for accurate diagnosis but to prevent harm. Pushing through physical activity can worsen the underlying energy dysfunction – a phenomenon now clearly documented in scientific literature, and a risk widely acknowledged by clinical experts.

Both Long Covid and ME/CFS are under-recognised, not because they are rare, but because clinicians lack the tools and training to adequately detect the systemic dysfunction they reflect, a gap that only investment in research and better clinician education can address. With no diagnostic tests and no established evidence-based treatments, care requires a personalised approach – guided by symptoms and impacts on daily functioning and supported by input from multiple specialties.

The paper highlights areas where research is urgently needed. This includes how the immune system, nervous system, cellular energy and metabolism, and gut microbiome may all be involved; what reinfections mean for long-term recovery; and how children are affected, not just physically, but in school and daily life. Understanding the ‘how’ and the ‘why’ these conditions occur, often without warning, is critical – not just for Covid-19, but for all infections capable of triggering long-term health harms.

The global consensus paper signals emerging international scientific alignment on Long Covid and highlights the research and care gaps that demand urgent attention. What we need now is targeted research and a strategy to disseminate and educate our healthcare workforce – so we can develop the tools needed to prevent, diagnose, and care for people effectively. This consensus marks an essential starting point for action.

After all, post-infection syndromes are not new – but pandemic-scale waves of a novel virus exposed just how ill-prepared we were to recognise and respond to them. Covid-19 continues to drive long-term illness, and if we fail to invest in research and recognition now, the burden will only deepen. We must act urgently – not only to prepare for future pandemics, but to confront the growing crisis we are already facing.