New Zealand may have 100,000-150,000 people affected by Long Covid and ME, and of those, 85 percent will be moderately to very severely affected and needing significant support
Opinion: The dramatic effects of the Covid pandemic on the fabric of our society during this last term of government have suggested there is an urgent need for a reset in many of the ways we function as a society.
Lockdown aimed at preserving lives from the rapid spread of a dangerous worldwide virus gave us time for reflection on new directions that might lock in future sustainability.
Sadly, but perhaps understandably, as we have resumed more normal life this reflection has largely been put aside and replaced by a strong desire to restore the pre-Covid past where a cohesive supportive society was beginning to unravel.
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Almost a year ago, a petition was presented to Parliament for Myalgic Encephalomyelitis (also known as Chronic Fatigue Syndrome) to be reclassified as a disability rather than a chronic condition by the national advisory group Associated ME Society.
Its underlying rationale for change was to provide needed social and financial support for people whose lives had been so dramatically and suddenly affected with this debilitating disease which, for the vast majority, has proven to be lifelong.
At the time I wrote in support of this petition, having heard extensive histories from many patients whose lives had been devastated by ME, and with the knowledge they had been so poorly served by our health and social systems.
The pandemic exacerbated their plight as they were a vulnerable community not only from the long-term effects of Covid-19 infection, but also, as occurred at high frequency, from severe adverse reactions from the vaccination against the Sars-CoV-2 virus.
A consequence of the pandemic has been a new significant group of people with an ongoing post-viral fatigue syndrome very closely related to ME, encompassing about half of those designated as having Long Covid.
Many of those affected by this complex, ongoing, debilitating post-Sars-CoV-2 fatigue condition that is so similar to ME face the inability to work and participate productively in their communities.
It has shone a light on the vulnerable ME group who have been suffering for years in the shadows. In the United States, they been called the “missing millions” – lost to society, not able to sustain employment, largely ignored by health and social services, able to interact only marginally with their communities, and often misunderstood by friends and even families.
Sadly, in New Zealand this is still happening today – I hear heartfelt stories each week from new ME and Long Covid patients feeling abandoned.
So how has the petition to parliament progressed to make the lives of these people a little easier?
A select committee evaluated it earlier this year. It followed a decade after a parliamentary Health Select Committee had agreed ME fitted the definition of a disability, consistent with the Human Rights Act of 1993.
But for that last decade, classified as a chronic condition, ME was managed differently by each DHB and so care and support has been inconsistent. There has been no dedicated funding within the Ministry of Health for ME.
Disappointingly, at the parliamentary select committee hearing on the petition, the ministry's position was to oppose a change, completely out of touch with the reality of how inaccessible services were for the ME group.
It is of interest that the Disability Commissioner acknowledged in 2022 that the newly appearing Long Covid was a disability, and a report prepared for the Ministry of Health in 2023, Impacts of Covid-19 in Aotearoa, Nga Kawekawe O mate Korona, strongly endorsed this position. As yet there has been no political response to the petition.
Collectively, New Zealand might expect to have 100,000-150,000 people, roughly 2 percent of the population, affected by Long Covid and ME. Of those, 85 percent are moderate to very severely affected and needing significant support.
Māori and Pasifika are under-diagnosed with respect to ME, and disproportionately affected by Covid. We are at a moment in time when we can choose to be a fully inclusive society and provide the less fortunate suffering with these long-term debilitating illnesses appropriate support from the relevant ministries: health, social development, and disabled people.
Concern has been expressed in New Zealand as to the economic health burden of Long Covid, and its effect on our financial services in the long term. The Ministry of Health has acknowledged the need for a national strategy, after giving little attention previously to the plight of those affected with ME.
At this phase in the election cycle where a competition of ideas are in abundance, is there any glimmer of hope for this vulnerable group that the health policies of political parties will support a change?
Sadly, the focus is on health structural reorganisation and healthcare delivery but constructive cooperation between the parties could make a real difference to the lives of many New Zealanders without a huge cost.
There is a season and a time for every purpose, a time for leadership, a time for social responsibility.
Don’t let this group of New Zealanders be the ‘missing thousands’ any longer.
