New Zealand has been praised for its initial COVID-19 pandemic response, but what do we know about long-term health effects and how Kiwis are impacted?
A WHO policy brief published earlier this year says around a quarter of people who have had the virus have symptoms that continue for at least a month, but one in 10 are still unwell after three months. However, understanding of how to diagnose and manage long COVID is still evolving.
The SMC asked experts about long COVID in New Zealand, including similarities with ME/CFS (sometimes called chronic fatigue syndrome).
Dr Anna Brooks, cellular immunologist and Senior Research Fellow, Maurice Wilkins Centre, University of Auckland, comments:
How many people in New Zealand are thought to have long COVID?
“All we know at this stage is that a long COVID Facebook support group in New Zealand has over 200 members. However, we also know that support groups are not for everyone, so there are likely many more (e.g. many have contacted me personally as well). The group continues to grow – often linked to either media stories raising awareness, or New Zealanders returning from overseas who have this condition.
“Evidence suggests that somewhere between 10 to 30 per cent of individuals infected will not return to their previous or baseline healthy state – 14 to 21 days after their symptoms started – yet we still see all cases reported as ‘recovered’ in our statistics.
“Long COVID can affect anyone: all ages, including children, and it is also not related to disease severity. We now know that long COVID can also present in those that showed no symptoms at all, i.e. asymptomatic people, and that most long COVID sufferers were never hospitalised.”
What reports are you hearing from people about their experiences of seeking health care or support for long COVID?
“Overwhelmingly, the reports have not been encouraging. Due to the low prevalence of COVID cases in NZ, so too are the cases of long COVID, and therefore the experience of our health professionals in assessing long COVID patients is limited.
“It has been incredibly slow for information about the chronic condition to disseminate within New Zealand, and just like in the UK and the US, the patients are finding they are needing to self-advocate, and often educate their doctors – if they are indeed heard at all. Patients continue to experience difficulties accessing informed care, and ‘medical gaslighting’ (when a health professional dismisses or trivialises a person’s health concerns).
“Currently there are no routine diagnostic tests that can be applied to this multi-system, complex chronic condition, which is why research is urgently needed to try and uncover mechanisms or biomarkers to help with long term care.
“I have heard countless reports of patients being turned away, denied consultations or even treated as if they are infectious when presenting with long COVID symptoms – there really just seems to be a general lack of understanding within our healthcare system, and it’s really heart-breaking to keep hearing their stories.”
“Medical gaslighting is the most common feedback I hear – that it’s all in their heads, likely ‘just’ anxiety, or that they couldn’t possibly have had COVID-19. These patients are often traumatised by their experiences, and too exhausted to persevere or fight to be heard.”
What happens when people with ongoing ‘long covid’ symptoms haven’t received a positive test result for COVID-19?
“Many of New Zealand’s long haulers, or those presenting with long COVID symptoms, were infected at the beginning of the outbreak and did not have access to the diagnostic nasal swab/PCR testing for various reasons.
“Antibody (serology) tests can detect historical infections, however we do know that not everyone will produce or retain detectable antibodies, especially a year or more out from their infection. No studies have specifically investigated immune responses in these non-recovered individuals, and therefore we do not yet know if antibody tests will even reliably detect past infection in these probable long COVID cases.
“Patients in this situation feel completely ignored, dismissed, and gaslit by medical professionals. Although we know that many individuals may still have detectable antibodies – proving they had COVID – the most reliable antibody test, which detects antibodies for the spike protein, is not widely available. So not only are the tests not easily accessible, most patients are getting turned away, or describe begging for tests that they still cannot access.
“Without a confirmation of COVID-19, they are marginalised not only by the health care system, but also by their colleagues, loved ones, and society. Many only feel safe to talk about their ongoing health concerns within their private support group through fear of being victimised, gaslit, and generally unsupported.
“Obviously not having an official diagnosis will mean seeking health care for long COVID-like symptoms will be difficult, if not completely fruitless, given those who have been diagnosed are also struggling to be heard.
“This is another area where immunology research laboratories can help, as we can do tests to search for the specific immune cells (T and B cells) that fought off their initial viral infection. If we can detect those cells, we can provide evidence to those individuals who sorely seek confirmation or validation that the ongoing symptoms they are experiencing are due to COVID-19. Many New Zealanders experiencing long COVID-like symptoms are desperately wanting this question answered.”
What would you like to see the government do as top priorities in response to long COVID?
“i) Acknowledge long COVID, ii) report non-recovered cases iii) support those who have it, and iv) support research to find answers.
“We should be supporting these efforts here in New Zealand, and give back internationally by leading the charge in researching mechanisms and treatment options for those still suffering, and providing all unconfirmed/probable cases a chance to be diagnosed.
“New Zealand may have led the way by adopting a very successful elimination strategy to keep the virus out, but we are trailing far behind in how we are treating those most affected.
“Many countries now at least acknowledge the condition, provide information and have resourced multi-speciality long COVID treatment clinics. The US and the UK have invested heavily in research, and provide official information describing what is known about the condition and how to seek medical assistance (eg via the CDC, NIH etc).
“Due to the low prevalence of COVID-19, and the relative return to normality for most New Zealanders, those most in need of support have been completely marginalised, and for many, this has lasted for over a year. These individuals did not choose this; they are victims, and they are waiting to be heard, seen and supported.
“Until there is widespread knowledge within our healthcare system, awareness disseminated and support provided by our Ministry of Health, these individuals will continue to feel abandoned. It is incredibly disheartening hearing first-hand that those most affected by the virus are still struggling for support.”
Where can people with long COVID find help or support?
“Right now in New Zealand, all we have are online support groups. We have a NZ Long Haulers Facebook group where people can join, which is private, but I can also understand these avenues aren’t for everyone. For people who just want to stay connected, and have information disseminated when research opportunities or information comes to hand, they can send an email to LongCovidNZ@gmail.com.
“I am also working with Dr Robyn Whittaker and her team at the National Institute of Health and Innovation (NIHI) at Auckland University. They have curated a webpage full of up-to-date resources about long COVID – for both patients and GPs and other health professionals. https://www.nihi.auckland.ac.nz/long-covid
“What I would like to see is a page on our Ministry of Health or Unite against COVID-19 websites, at least acknowledging that long COVID is a very real potential consequence of COVID-19 disease.
“Just like there was a race to produce an effective vaccine, now there is a race to help the millions world-wide experiencing the long-lasting health effects from having been infected.
“Patients are asking for a list of health professionals who understand long COVID so patients can trust they will at least be heard. Although we know that treatment pathways or clear diagnostic routes are still unknown, resources for affected patients are sorely needed.”
No conflict of interest declared.
Emeritus Professor Warren Tate, biochemist, molecular biologist and ME/CFS expert, Brain Health Research Centre, University of Otago, comments:
What is the difference between post-viral fatigue and long COVID?
“Post-viral fatigue is a general term used when people do not recover within about two weeks after any viral infection (e.g. flu or glandular fever). It may take several months for the ‘flu’-type symptoms to resolve, or even longer. In a subset of cases, this can become an ongoing condition. Post-viral fatigue suggests the immune system response has not settled and is still in active.
“In this pandemic, long COVID refers to the large group of people who have been infected with the coronavirus but have not recovered normal health after the expected recovery time.
“However, there are thought to be several causes of long covid: a sizable proportion is post-viral fatigue, but others will have ongoing lung pathology, effects on the heart, and post-traumatic syndrome as a result of hospitalisation and emergency treatment.”
How does long COVID compare to ME/CFS?
“A group of long COVID patients have symptoms that mimic those of ME/CFS, such as fatigue, ‘brain fog’ and problems with memory and cognition, and ‘post exertional malaise’ – where symptoms worsen after physical, emotional or mental exertion or stress. ME/CFS is diagnosed using a set of criteria after six months of ongoing symptoms.
“Many long COVID patients suffering from post-viral fatigue have now had ongoing symptoms for more than six months, and may meet the diagnostic criteria for ME/CFS.
“As well, many long COVID patients had relatively mild illness at first, then deteriorated markedly later on – this pattern also often occurs with ME/CFS patients.
“In my longstanding (more than 30 years’) experience with ME/CFS, while New Zealand has some very knowledgeable clinicians, generally the understanding of the disease in the health system has been poor. Many patients report feeling their long-term disease has never been affirmed as ‘real’ by their health practitioners.
“In contrast, there has been wide publicity and attention given to long COVID internationally, which may mean better recognition, although there is still much debate and research gaps about the various categories of long COVID.
“In New Zealand, long COVID patients are needing to access a healthcare system that has not served ME/CFS patients well. I hope the greater international focus on long COVID means there will be more understanding given to New Zealand patients with long COVID, and that this will also extend to ME/CFS patients.”
How would you like to see long COVID approached by the government, health care and social support services, compared with what has happened with ME/CFS?
“First, an acceptance at the highest level that long COVID is a real and serious health condition that will likely have long-term devastating effects on individuals and their families. It is important that government and services appreciate the likely serious economic consequences for families, and how socially-isolating it can be for those affected.
“Second, long COVID must be included in medical training and ‘refresher training’ for frontline doctors. Otherwise, we will just repeat the poor outcomes for patients as with ME/CFS, which has traditionally not been included in medical training.
“Third, it is important health and social services act positively to help this long COVID group. In comparison, some ME/CFS patients have had negative experiences, such as doctors stating ‘they can work full time’ – ruling out income support – when the patients have been virtually housebound, often for many years, due to their debilitating illness.”
What opportunities do you see for New Zealand research into both conditions?
“ME/CFS has been a poorly-researched illness worldwide, and very few studies have been done in New Zealand. It has not been regarded as a high-priority illness from our research investment agencies. The research that has been done has largely been funded by donations from ME/CFS families and the Associated New Zealand ME Society (ANZMES) support organisation.
“Internationally, just before this pandemic began, major research centres were established at Harvard and Stanford in the USA (and linked in Sweden) to study specific aspects of ME/CFS.
“If research into long COVID (and ME/CFS) is prioritised now by New Zealand funding bodies, then our talented research workforce will have an incentive to study these long-term conditions and more progress will inevitably be made. New Zealand patients deserve this.
“Unlike ME/CFS patients who have had their illness from six months to over 40 years in some cases, the long COVID group with post-viral fatigue have been unwell for a relatively short time (up to a year). This is early in the course of what could be a lifelong disease like ME/CFS, so now is the best time to research therapeutic options that might alleviate – and even reverse – the disease.”
What would you like to see the government do as top priorities in response to long COVID?
“New Zealand’s government has led an outstanding initial response to the pandemic. This now needs to be extended to support people with prolonged recoveries through financial support, wraparound social services, empathetic health care services, and research funding. This would continue the ethos of ‘being kind to each other’. People with Long COVID in New Zealand are already facing devastation to their lives, negative effects on their families, social isolation, and financial stresses.
“Just as priority has been given to serious non-communicable diseases, like cancer, heart disease, diabetes, and Alzheimer’s disease, the same should be applied to those who are now affected with long COVID, which for some may potentially be a lifelong disease like ME/CFS.
“The United States has already committed $1.15 billion US dollars for research to understand long COVID. Plus, last week bipartisan legislation on COVID-19 long haulers was reintroduced to the US Congress, aiming to benefit people with long COVID, and also those with ME/CFS. It aims to fund nationwide medical education (with ME/CFS specifically identified), expand prevalence tracking (again with ME/CFS included), and research into post-viral care and diagnostics.”
No conflict of interest declared.