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Lack of support for those with Long COVID – Expert Reaction

One in five participants in a major nationwide study experienced symptoms of Long COVID following an infection, and researchers say the health sector has been letting them down. 

The report, Ngā Kawekawe Mate Korona | Impacts of COVID-19also found that the Covid-19 pandemic had much greater health, social, and financial impacts on Māori, Pasifika and disabled people.

The study is based on survey research with 990 people who caught COVID-19 before 1 December 2021. Information was also collected through in-depth interviews with 52 people.

The SMC asked experts to comment on the findings and recommendations in the report.

Dr Mona Jeffreys, Senior Research Fellow (Epidemiology) and Dr Lynne Russell (Ngāti Kahungunu, Rangitāne, Kāi Tahu, Ngāti Porou), Senior Research Fellow (Maori Health), Health Services Research Centre, Victoria University of Wellington, comment:

  • What are the main findings?

“Amid a host of results, key findings are i) the vital role that Māori providers, iwi and communities played in supporting Te Tangata Whenua during the pandemic; ii) the thriving of Pasifika people when health services appropriately and effectively anticipated and provided for their specific needs iii) the impact of having COVID-19 on mental distress, but lack of access to appropriate care or services; iv) in nearly all measured metrics, disabled people faced more barriers to care than non- disabled people – and this was even more pronounced for tāngata whaikaha Māori; v) Long COVID care continues to be insufficient and patchy.”

  • Why are these important?

“We, along with other researchers, have found clear breaches of Te Tiriti o Waitangi in the Government’s response to the pandemic. The ongoing Government COVID-19 response at all levels, and for any future pandemics, must be based on Te Tiriti o Waitangi to ensure that all processes, decisions, management and monitoring approaches are responsive to Māori communities’ lived realities. Numerous examples of good practice should be built upon for future service provision. Mental health services require significant investment to cope with the impacts of the pandemic.”

  • What should happen next?

“We have made a host of recommendations, arising from the research. Many of these, if implemented, could have beneficial change to achieve pae ora; intersectoral approaches to improve health and social determinants of health are required to address on the ongoing COVID-19 and future pandemics. Sustainable, long-term funding for providers with track records of supporting Tāngata Whenua with COVID-19 must be established and maintained.”

Conflicts of interest statement: Dr Jeffreys and Dr Russell were the Principal Investigators on this report.

Professor Paula Lorgelly, Faculty of Medical and Health Sciences and School of Business, University of Auckland, comments:

“The team at Te Herenga Waka–Victoria University of Wellington in partnership with the Rōpū Kaitiaki have comprehensively and sensitively evidenced the considerable impact of COVID-19 in Aotearoa, and most notably the inequitable impact.

“The personal stories and journeys documented sadly reflect the experience of many in Aotearoa, and we must learn from these experiences and not repeat them when we respond to future pandemics and health crises. Many individuals, estimates suggest 1 in 10 infected, continue to experience symptoms (and for some new symptoms) more than 3 months after an acute infection. While much is still unknown about Long COVID, Long COVID is expected to be the most significant and enduring impact of the pandemic.

“The study recommendations will help address this impact. Some of these have been implemented, for example Manatū Hauora has reviewed the criteria for diagnosing long COVID and communicated this to health professionals, but despite this no new clinical or support services have been provided by Te Whatu Ora, thus there is no pathway from Long COVID diagnosis to treatment and management.

“The study recommends that policies need to be broader than the health sector, this is particularly true in order to address the socioeconomic determinants of health and the inequalities that COVID-19 and the pandemic response exacerbated.

“Manatū Hauora has funded further studies to understand the burden of Long COVID, but this is only a first step to solving the problem. Estimating the burden will provide an understanding of the cost of Long COVID to different sectors of the economy, and who bears this cost. Developing and implementing accessible and integrated support services can then efficiently and equitably address what could be the leading cause of disability in Aotearoa New Zealand.”

Conflict of interest statement: “Lead investigator of a MoH COVID-19 and National Immunisation Programme research project to create a long COVID registry.”

Emeritus Professor Warren Tate FRSNZ CNZM, Department of Biochemistry, University of Otago, comments:

“The collective executive summaries of this report are detailed, carefully researched, prepared and presented. The document is extensive so I have extracted individual statements and conclusions/recommendations to comment on.”


  • Pandemics “hugely amplify already entrenched inequities within societies”

“We have been aware for several decades that there were health inequities for Māori and Pasifika, and for the disabled community. Despite honest endeavours, slow progress has been made to close these gaps. Indeed, this pandemic has highlighted more publicly these inequities and needs, for example, through the vaccination campaign for Māori (one size does not fit all!), the crowded housing and family sizes of the Pasifika community and thereby their vulnerability in such a pandemic event, and the isolation of disabled people from their regular carers and services, not helped by vaccine passes. It is hoped these lessons are learned and our Ministry will be better prepared for future health crises in our society and sensitive to the needs of tangata whenua, Pasifika communities, and health impaired groups, as they were for the aged care sector in this pandemic hit.”

  • “Equity was not evidenced to have been at the forefront of Governments planning, analysis, responses and policies with COVID 19”

“The pre- preparedness for such a public health crisis clearly did not have that degree of depth, and so day to day responses were made ‘without an existing playbook’. A major positive was scientists were listened to. They stepped up and gave excellent advice but their brief was mainly advice for the “5 million” as though we were a homogeneous group. Nevertheless, the way the vaccination campaign for Māori was quickly brought around and made effective when tangata whenua themselves were heavily involved illustrated how it is possible to respond to and bridge inequality in such a crisis.”

Long Covid:

  • “ongoing symptoms of COVID-19 […] affect around 22% of people who have had the illness”

“One of the major frustrations particularly, but not only in New Zealand, is knowing the frequency of Long COVID and therefore the future burden on our health and social systems. Erudite publications from international experts to date have varied estimates of between 10-50%, and there has been uncertainty as to whether the Omicron variants produce as much as the earlier Alpha and Delta strains of the virus. Moreover, Long COVID is a heterogeneous condition, made up of those with organ damage after their infection and those – probably the majority – with a classic post viral fatigue syndrome, with symptoms of fatigue, brain fog, sleep disturbance, pain, post exertional malaise (post activity health deterioration) and breathlessness. These are not separated in most publications.

“So, the 22% referred to here from the survey is in line with international estimates and it is great to have an evidenced-based New Zealand figure reported. But this is a rapidly changing landscape. A major analysis of Long COVID published this week in Nature Reviews puts the figure now at 10% and that includes consideration of the Omicron variants. Even so, in New Zealand with perhaps three million of us having had the virus, and now some of us two or three times with a higher risk of ongoing illness, it means New Zealand could have a burden of at least 300,000 people needing targeted health, social and financial services.”

  • We need to ”develop consumer-led Long COVID services” and offer a “wider range of more integrated services in the future”

“There is first a clear need to establish reporting so that accurate estimates of the growing size of the cohort of affected people are known, if appropriate services are to be developed. Second there needs to be an effective programme of education on the post viral conditions in the medical schools so that emerging doctors are knowledgeable, and aware of best management practices for affected patients. This has not been available for the estimated 45 000 people affected with Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) (the classic post viral/stress syndrome that is a model for Long COVID). Knowledge of and clinical care has not been consistent across all health practitioners, and access to needed health and social services and financial services has been difficult. With Long COVID, there is the possibility of creating a national strategy of consistent clinical management and support services vastly improving the outlook for affected patients for both ME/CFS and Long COVID.

“From the survey – There was a lack of understanding by health professionals reported by survey participants, including not feeling listened to or understood and noting that doctors seemed to have a lack of information or be misinformed. This has also been reported strongly in a survey conducted by a Master’s student in my research group, Anna Blair, who is comparing ME/CFS and Long COVID cohorts to explore susceptibility factors in those who develop the post viral/stress syndromes. Appropriate education of the health work force seems paramount to address this.”

  • “Ensure that long COVID is recognised as a disability, to allow access to financial and practical support.”

“This is an essential recommendation. People developing Long COVID have immediate needs for help from social services and financial services and need clearly easily accessible pathways to access these. They are debilitated from day 1 of their illness, most cannot work and need wide support. Currently ANZMES the New Zealand ME/CFS disease advisory association has a petition before parliament to have ME/CFS reclassified from a chronic disease to a disability so access to services for affected people can be made much easier and consistent throughout the country.”

  • “The prevalence of anxiety (41%), depression (43%) and both combined (54%) were also significantly higher among disabled compared to non-disabled survey participants […] indicating significant levels of mental distress among those with lived experience of disability.”

“My experience with the ME/CFS community is they were particularly vulnerable as the pandemic hit, and it created so many justifiable uncertainties for them. Would they be severely affected by the virus? Would their illness deteriorate with the infection? And questions about the safety of the vaccine for them – sadly for 1 in 4 had an ongoing severe adverse reaction that made their existing ME/CFS considerably worse and that created enormous anxiety among the ME/CFS community. Without information, health leaders and practitioners were generally denying there was a problem and so affected patients were left largely isolated and unsupported.”

No conflict of interest declared

Dr Bronwyn Lennox Thompson, Senior Lecturer, Orthopaedic Surgery & Musculoskeletal Medicine, University of Otago, comments:

“The report investigating Aotearoa/New Zealand’s response to Covid-19 is a remarkable document. Its findings clearly demonstrate how crucial integrating health and social strategies are to ensure equity for all. We can learn so much from understanding what helped and what didn’t from the perspectives of people affected by the policies used to manage the pandemic in our country.

“Two groups particularly strike me: the perspectives of people with pre-existing disabilities, and those who now live with Long COVID, as they illustrate that we must develop an integrated health and welfare systems approach to ensure equity for all.

“People living with disabilities of any kind (the kinds of disabilities are not detailed in the report) reported greater impacts from their disability after contracting Covid-19, with increased barriers to effective and appropriate care experienced by most, and particularly Tangata Whenua. When the health system is under strain, the impact is significantly greater for those already having difficulty accessing care. Involving people with disabilities of all kinds and diverse backgrounds as new initiatives are developed is vital.

“People living with Long COVID articulate their desire to be recognised, destigmatised, and to experience an integrated, joined-up approach to their needs. Their comments echo those consistently reported by people living with other ‘unexplained’ conditions such as chronic pain. Grace Griffiths, PhD candidate in the Department of Orthopaedic Surgery and Musculoskeletal Medicine, University of Otago, has found similar concerns expressed by people living with upper limb complex regional pain syndrome: being passed from health professional to health professional, limited connection between each one, delays between referral and appointment, disparity in the care between those receiving ACC and those who do not, and being viewed with caution and even disdain when recovery does not follow the accepted path. These findings show how important it is to have well-funded, well-connected primary care clinicians that are not solely focused on a medical model of health but who see the person and their unique needs in the context of their life.

“In addition to non-medical primary care resourcing, specialist multi- and inter-disciplinary centres that can both support the person with complex needs and offer expertise to primary care clinicians are recommended. Again, this approach echoes that recommended in the report ‘Mamaenga Roa: Model of Care for people living with chronic pain’, published late in 2022 from the Office of the Chief Clinical Officers, MOH. Reducing inequity is not just about boosting funding, it is also about hearing what people with lived experience need and want, seeing beyond the disease to the person and their needs, and creating structural changes to how health and welfare are connected.”

No conflict of interest declared