News from Aotearoa/New Zealand and the Pacific Islands

Donation page for Prof Tate's team has been updated with their 2025 projects
(A) A molecular diagnostic test for early diagnosis of ME/CFS and Long COVID

Professor Tate has joined the Pathology Department, Dunedin School of Medicine to link up closely with Associate Professor Chatterjee, NZ’s expert scientist for analysing the DNA methylome of the epigenetic code. Our new project will determine how the changes of the DNA methylome can be captured to provide a molecular signature for early diagnosis of ME/CFS and Long COVID and for following the course of ongoing disease. The goal is to develop tests accessible to all clinicians and their patients and available in all community Chemical Pathology laboratories. Early definitive diagnosis would mark a significant breakthrough for the disease outcome of ME/CFS and Long COVID patients not only in New Zealand but also globally.

(B) A genetic test for susceptibility to developing ME/CFS and Long COVID

A recent technical breakthrough has revealed certain combinations of naturally occuring genetic variations in the DNA genome can account for most of the samples from ME/CFS patients in the UK biobank. These variations can account for why 5-10% of the population are susceptible to developing the post-viral sydromes, ME/CFS and Long COVID, when exposed to a triggering stress event. In preliminary studies we have shown our NZ patients also have some of these combinations of the single base variations. In 2025 we are investigating whether it is possible to develop a test for susceptibility within affected families by establishing a family molecular signature that would indicate high risk or not. We now are recruiting families to test whether such an individual family risk signature can be identified and then used to detect susceptibility among those unaffected family members. It would then be possible for those individuals at risk to take prophylactic protective measures if they were exposed to a typical triggering event like a viral infection or a major stress event, and prevent them succumbing to the long term syndromes.
https://alumni.otago.ac.nz/donate/myalgic-encephalomyelitis
 
ANZMES petition to NZ government: Fairness for the Hospitalised: Stop Benefit Cuts After 13 Weeks
[...]Rhiannon, a 34-year-old suffering from Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), was bedridden in Wellington Hospital for months. Her benefit was reduced from $480 to $56.58 per week, leaving her unable to afford essential medications and personal items. This automated reduction process exacerbates the suffering of those who are too unwell to advocate for themselves. It affects anyone on a benefit and hospitalised for over 13 weeks, unless they have a partner and child, or are a veteran.

Even when patients are gravely ill and hospitalised, their financial obligations do not pause. Mortgages, rent, insurance premiums, subscription fees, and other living expenses continue to accumulate. For those in shared accommodations, contributions toward utility bills must still be made
https://our.actionstation.org.nz/pe...hospitalised-stop-benefit-cuts-after-13-weeks
 
I'm not clear on what has happened there. The RNZCGP has been like a brick wall, in terms of the Lighting Process. They have allowed Bruce Arroll to promote it from his platform in the Goodfellow Unit (for GP continuing education) and in their frequent conferences.

Nina appears to have complained about an article about the Lightning Process in the NZ Doctor magazine and has got a response that the RNZCGP's doesn't endorse the Lightning Process for ME/CFS due to it not being compliant with the NICE 2021 guidelines. And so the RNZCGP endorsement and the 0.5 CPD credits associated with the article has been withdrawn.

I think there's probably more to come on this story. I doubt that Arroll will be giving up on this. I'm interested to hear more.
 
so it might be that her request landed on the desk of someone else than the people that have allowed Arroll to promote LP?
Yes, I wondered that. I wrote a letter to the RNZCGP in 2023, and, despite several followups and communications with the personal assistant to make sure it was received, I'm still waiting for a reply. I sent another one last night to find out what is going on.
 
It seems to be the exact same text that she sent to Dr. Raman Kumar at the editorial office of the journal that published the ‘audit’. The text highlighted how it wasn’t an audit at all.

Which makes it possible that they withdrew their endorsement based on this flaw rather than that topic of LP.
 
I do wonder what is going on behind the closed doors of the RNZCGP....

Many members follow the NICE guidelines (eg my GP is the clinical director of about 20 GPs for her primary health care clinic and we have discussed briefly my concerns about the CME conference and Bruce's promotion of LP). Whether complaints from ME clients about him filter through to the college is unclear. Advocates here write letters of complaints and we have a doctor based at the Wellington, University of Otago, Department of General Practice who does good education based on the NICE guidelines. This department seems very different to the University of Auckland which is now collaborating publicly with it's Dept of Psychological Medicine (which has a long history of promoting psychosomatic theories for ME and other illnesses.

Nina's letter and the RNZCGP's response is the first time I have seen them show some sort of repudiation of Bruce's work. But I doubt NZ Doctor will publicly state they have removed the CME credits and why...
(NZ Doctor is not a medical journal or newsletter produced by the RNZCGP. It is a subscription based publication written by a team of journalists for primary health care providers and has also interviewed Mel Abbott in the past promoting her LP derived "neuroplasticity" scam treatment for ME/CFS - The Switch.)

I know wonder if RNZCGP are pushing back on Bruce by removing the CME points and I wonder if that will also mean they will no longer support his promotion of LP at the CME conferences he runs out of his Goodfellow Unit at Auckland University. I am hoping they are aware they have a Professor of General Practice down the LP rabbit hole (well, two, if you count Mel's efforts on the one in Dunedin...)
 
Last edited:
The National Ethics Advisory Committee (NEAC), has published its Finding Balance: Ethical Principles for Epidemics and Pandemics
https://neac.health.govt.nz/publications-and-resources/neac-publications/finding-balance/

This report replaces its previous guidance published in 2007.

There is some content relevant to post-infection consequences of epidemic infections, and some recommendations. e.g.


(Page 41) Post-acute infection consequences

Many infectious diseases have significant persisting post-acute infection consequences (Choutka et al 2022). Some of these consequences present soon after infection, such as the Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) type illnesses after Crimean Congo haemorrhagic fever (Ambikan et al 2023), SARS-CoV-1 infection (Li et al 2023), Ebola (Wohl et al 2022), Q-fever, dengue-fever and COVID-19 (Choutka et al 2022). Other health consequences have a delay before manifesting, such as human immunodeficiency virus infection and acquired immune deficiency syndrome (HIV AIDS) (WHO 2022c), cancers caused by the human papillomaviruses (National Institutes of Health National Cancer Institute 2023) and post-polio syndrome (Choutka et al 2022).

Research on past and current pandemics (such as the Black Death, the 1918 influenza pandemic and COVID-19) has shown pandemics can cause significant and long-lasting population health consequences (DeWitte and Wissler 2018; van Doren and Sattenspiel 2021; Kelmelis and DeWitte 2021; van Doren and Kelmelis 2023; Wissler 2021; Saglanmak et al 2011; Noymer and Garenne 2000; van Doren and Brown, 2023). The full consequences of COVID-19 are not fully understood, but personal and societal impacts arising from persisting symptoms, grouped under various terms, such as long COVID, post-COVID condition and post-acute sequelae of COVID-19 (PASC), are significant (Callard and Perego 2021; Choutka et al 2022). There is also increasing evidence suggesting that COVID-19 causes neuropathological changes that could develop into neurological disorders later in life (Kim et al 2023). In addition to consequences triggered by the infection itself, there can be long-term health consequences arising from disease treatments (Vasilevskis et al 2010) and vaccinations (Tondo et al 2022).

As with the acute effects of a disease, different risks of post-infection consequences borne by different groups will exacerbate existing inequities. For example, foetuses may suffer brain damage causing permanent cognitive impairment as was the case for the Zika virus (Jash and Sharma 2022), and women appear to have a higher risk of ME/CFS-type illnesses (Clayton 2015).

Each re-infection may also risk post-infection consequences, as appears to be the case with COVID-19 (Bowe et al 2022; Kuang et al 2023). People who are repeatedly infected, as healthcare workers, people living in large family groups, and unvaccinated children attending school are likely to be, will have an accumulating lifetime risk of post-infection consequences.

It will be very rare for a pandemic disease to result only in short-term health impacts. Many of the long-term consequences of infections majorly impact quality of life and productivity and do not yet have diagnostic tests or effective treatments. They have been understudied, and the health workforce is generally poorly informed about them (Choutka et al 2022).

Differences in how people disabled by an infection or a post-infection chronic illness are supported compared with people disabled by an accident creates and exacerbates inequities (Cameron 2023; Kia Piki Ake - Welfare Expert Advisory Group 2019). An essential worker may have difficulty proving that they have been disabled by an infection contracted at work, particularly when the disease has become widespread in the community (Fisher 2022). A family member who contracts a disease from an essential worker and then goes on to be disabled is no less deserving of support but would not meet a criterion of harm sustained while at work. Aside from the equity issues, inadequate support provided to people harmed by infections and a lack of effective treatments may impact on the willingness of essential workers to put themselves at risk during a pandemic.

Recommendation 7
Analyses of pandemic response strategies should fully consider the long-term health impacts of both the disease and delayed health service delivery. (Manaakitanga, Tika, Promoting health and wellbeing)

Recommendation 8
There should be more investment in training the health workforce in post-infection diseases.
(Promoting health and wellbeing)

Recommendation 9
The disability support system should be reviewed to provide the equivalent support to people with disabilities that have similar impacts on quality of life, regardless of whether the disability is caused by an accident or an infection. (Equity)
 
There's also content on herd immunity:

5.2.1 Herd immunity as a primary strategy

Decision makers may consider seeking herd immunity, also known as community immunity, as part of a pandemic response strategy. Herd immunity is when the proportion of individuals with immunity is large enough to prevent the disease from spreading in a population (Fine et al 2011). One approach to developing herd immunity is to allow the disease to spread in the population without using tools such as quarantine, or lockdowns. This approach has drawn criticism from the World Health Organisation who noted that, in the first year of the COVID-19 pandemic, attempting to reach herd immunity simply by exposing a population to the disease was “scientifically problematic and unethical” and that “Allowing a dangerous virus that we don’t fully understand to run free is simply unethical (WHO 2020b).

Vaccinations may significantly reduce the harm of pursuing such a strategy, by allowing most people to gain immunity without getting the disease. However, developing an effective and sufficiently long-lasting vaccine takes time, during which the disease may spread rapidly, overwhelming health systems (Health and Social Care 2021).

Non-human host reservoirs, incomplete or short-duration immunity that allows for re-infection and transmission, a lack of a vaccine that provides long-lasting protection, insufficient uptake of vaccination, a quickly mutating pathogen, and the rapid transit of people around the world can make achieving herd immunity impossible (Morens et al 2022). If herd immunity is not achieved then the harm of pursuing a herd immunity strategy, including the considerable ethical consequences such as higher death rates and health care costs in perpetuity, may greatly outweigh short term economic benefits.

The impact on the global community of a herd immunity approach must also be considered. A country with an outbreak or epidemic that follows a primary herd immunity strategy may increase the risk of the disease becoming a pandemic, affecting countries that may have less capacity to manage the health care and governance consequences.
 
Back
Top