News from Aotearoa/New Zealand and the Pacific Islands

If I recall correctly, ME Respite was created by a former nurse who has severe ME. There is a Board of Trustees and they have an office in Auckland and volunteers. I signed up a few years ago to do mentoring but then became too unwell to do this. They also have a craft group where you can make items for their ME op shops which are in Auckland. I get phone calls every so often asking how I am and if I need help which is nice to know for when I might need more support. The support is mostly Auckland based eg they drop off easy meals but if out of town they can get you a small discount on your online shopping (from the former Countdown, not sure if it is now with it's replacement Woolworths). It's a bit convoluted a process but once learnt could be useful to save money.
 
Shane Reti was the Health Minister, he has been replaced today. Shane Reti, a doctor, was no friend of people with ME/CFS, I've mentioned a couple of things about him before.

The new Health Minister (same government) is Simeon Brown. He has a reputation for getting things done, hence his appointment to this very challenging role.
I see that he was the MP who presented the ANZMES petition in 2022 to be read in parliament.
https://anzmes.org.nz/reclassification-update/
The petition closed on 29th August. Simeon Brown, National MP for Pakuranga kindly agreed to submit the petition on ANZMES behalf to parliament. This will happen within the next month.
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So, this new appointment seems to be pretty much as good as it could be for people with ME/CFS in New Zealand at this time.
 
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It would be interesting to know why Simeon Brown presented the petition on ANZMES behalf.

Could it be he just accepted the petition at the door because he was the duty MP of the day to accept petitions? or he has a genuine interest/concern for us?

Although Simeon Brown appears to be taking on the fixer role for this government, doesn't mean he is any good as a fixer and the current government is still firmly in the cost-saving stage.

Many positions at Whaihaka/Ministry of Disabled People have been disestablished and many of their processes are being looked at very carefully to save further money. Many important managerial roles and IT roles at Te Whatu Ora/Health New Zealand have also been axed. Major projects that have taken years to develop and were working on the IT infrastructure making the referral process easier and quicker between primary care and hospitals has been canned. There is a hiring freeze in hospitals. But maybe he will turn things around...
 
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MoH has published a systematic review: Prolonged Symptoms Attributable to Infection with COVID-19
Link | PDF

One mention each of post-extortion exertional malaise and ME/CFS (referencing the NASEM definition).

Further, in the absence of robust prevalence studies in New Zealand and lack of a formal long COVID registry, the potential burden of long COVID in New Zealand remains unknown. This is particularly significant as New Zealand had a high vaccination rate at the time of community spread, and Omicron was the predominant variant among those infected. Thus, the aim of this brief was to understand the overall prevalence of prolonged symptoms (three months and beyond) that may be attributable to COVID-19 infection.
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Sure, those things would have been quite useful.
 
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An issue is that the people up to helping train the next generation of doctors probably are going to do their best to look and sound perky on the day they go into the medical school.

Imagine if the med students had to go to the home of a person with very severe ME/CFS and just sit quietly in the lounge for an hour looking at each other, while the person remained resting in their bedroom with the curtains closed and no stimulation. And then the students got to go home. Maybe that would get some sort of message through.
 
Arroll and Oliver writing in NZ Doctor: Using Lightning Process to break cycle of fatigue in long COVID

Above the paywall reads —

This article discusses the Lightning Process, which is being found to be effective for some people with long COVID, with no harms reported
This Practice article has been endorsed by the RNZCGP and has been approved for
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References are —

1. Baker M, Lorgelly P, Crossan J, Tate W. Long COVID – Are we taking it seriously enough?[webinar] The Helen Clark Foundation, 3 April 2024.

2. Arroll B, Moir F, Jenkins E, et al. Long COVID: An audit of 12 cases of long COVID following the Lightning Process intervention examining benefits and harms. Journal of Family Medicine and Primary Care 2025; in press.

3. Parker P, Aston J, de Rijk L. A systematic review of the evidence base for the Lightning Process. Explore (NY) 2021;17(4):372–79.
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Chief Medical Officer was appointed to Te Whatu Ora (ie NZ's health system) and started in October last year. Her name will be familiar to many on the forum
Dame Helen Stokes Lampard
https://www.tewhatuora.govt.nz/corp...ates/national-chief-medical-officer-appointed

The Chief Medical Officer works in partnership with other senior Officers at Te Whatu Ora to provide clinical input and strategic professional advice to the Ministry, Ministers, and the wider health system.

She has recently finished her fixed term as Chair of the UK Academy of Medical Colleges (2020-23), which is the overarching body for all UK and Ireland Medical Colleges.

In 2012 she became the Royal College of General Practitioners first female Honorary Treasurer and was elected to be their Chair in November 2016.

Dame Helen sits on several national advisory groups and boards in the UK, including the expert advisory group overseeing the National Frontier AI Security Institute. She is also a trustee at Macmillan Cancer and founding Chair of the National Academy for Social Prescribing, where she is actively involved in shaping the direction of social prescribing — establishing an academic foundation for the movement and forming alliances to increase its impact globally.
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See for example
UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion
 
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https://www.phcc.org.nz/briefing/long-covid-update-threat-continues-demand-strong-response
Long Covid Update – a threat that continues to demand a strong response
Long Covid (LC) remains a risk following any Covid-19 infection or reinfection. It includes a syndrome of long-term symptoms, a substantially increased risk of sudden death, and silent cell and organ damage that may predispose to later illness. Consequently, it produces a large burden of illness for our communities, healthcare system, and economy. Covid-19 vaccination reduces the risk of LC following Omicron infection, but there is still around a 10% risk of LC among vaccinated individuals.

Aotearoa New Zealand (NZ) needs a coordinated response from Government to minimise LC incidence and impact. In addition to funding treatment and support services, this strategy must include public health and social measures to protect individuals and populations from exposure to Covid-19. We also need a programme to maximise vaccine coverage across all age groups, including young people and pregnant women. These interventions must be supported by a concerted and clear information campaign, targeted surveillance, and research.
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The NZ Government response to LC has been markedly inadequate. A Long COVID Expert Advisory Group was established in May 2022 to assess the evidence on LC and provide recommendations for clinical practice.85 It lacked specialists in key areas, including infectious disease, neurology, cardiology, and immunology. Their (revised) guidelines were published in December 2022 86 and work concluded in November 2022; they have not been reactivated or replaced.

The Report of the Royal Commission of Inquiry into Covid-19,87 like our previous report on LC,3disappeared like a rock in a lake of indifference.88 Health organisations attempting to provide LC services to staff and communities are hampered by lack of funding.89 90 If only 5% of the population of Aotearoa (a low-end estimate) have LC, that involves >250,000 people; our only LC registry includes about 1200.91 92 A NZ extrapolation of Australian data suggests that LC will result in a GDP loss around NZ$2 billion per year.82 (also see Appendix)
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Public Health Communications Centre Aotearoa
John D Potter
Michael Baker
Amanda Kvalsvig

It's getting some media coverage this morning.
 
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