News from Aotearoa/New Zealand and the Pacific Islands

Jonathan Edwards said:
I am going to the BBC tomorrow to be interviewed about the Lightning Process and Long Covid. They want to know if I have talked to anyone who has had the Lightning Process for Long Covid. I don't think I have yet but if anyone here has tried the Lightning Pro9cess for Long Covid I would be very happy to talk to them before lunchtime tomorrow!!

And if anyone has talked to anyone about this I am interested to hear anything relevant.
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Given the massive marketing push for the Lightning Process and related treatments in NZ, targeted at Long Covid, has anyone come across reports of harm here?
 
tweet in previous post says "Article published by the Otago Daily Times - includes a video interview with two people from Tapanui, West Otago, who caught Tapanui 'Flu 40-odd years ago"

Early indications point to higher visibility for 12 May this year

In the 30+ years I've been reading the Otago Daily Times I don't ever recall seeing coverage of ME anywhere near this level before. There's the article on page 2 (same as the one linked in the tweet, currently prominently featured on the online landing page, with video) plus ME is on the frontcover of the weekend supplement with a major 3-page feature article (paywalled, but found in archive). Pretty good overall even if, perhaps inevitably, it contains a few small argh moments. The writer has done some good reporting in the past but never this extensive that I can remember

And this in The Star (Dunedin), an advertising feature with a very over-hyped headline: "Breakthrough with ME genetic factor" - yeah right (pp14-15)

And this in The NZ Herald
 
Ravn said:
with a major 3-page feature article (paywalled, but found in archive).
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Charlotte Paul, now a University of Otago emeritus professor, recalls the late Dr Snow’s enthusiasm.

"It takes a certain amount of drive to want to actually go further and find out what the hell’s going on," she says.

Their research helped expand the pool of knowledge of this strange disease being experienced in countries around the world. In the United Kingdom, it was called ME; in the United States, chronic fatigue syndrome (CFS); in New Zealand, Tapanui flu.
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Along with others (eg Prof Campbell Murdoch) both were well admired lecturers of mine in the early 90s. I don't recall from Charlotte Paul's epidemiology lectures specific illustrations of ME/CFS, but she probably did include it. What did absolutely stick with me was the clinical description of the profound effect on people's lives, the absence of treatments and the early thinking behind the biology — eg Les Simpson's red cell deformability studies. Simultaneously, BPS was on the rise, so as I've commented before, I suspect mine was the last class to be taught that ME/CFS was biological, before "abnormal illness beliefs" took hold for the next 30 years. Little did I guess this would be in my and my family's future…
 
Kia ora everyone. I've been quiet on S4ME due to lack of cognitive spoons, so this is my first post here (and I hope I’m doing it right!)

Yesterday was the 40th Anniversary of a landmark article in the New Zealand Listener, that contains a goldmine of historical information about the Tapanui ‘Flu epidemic that is not well known. So, I seized the day (or, more accurately, the evening) to launch some new Kiwiana onto the internet:

1. Informational website – Tapanui ‘Flu Blog (It's a work in progress, to be expanded over time)

2. Digital reproduction of “M.E. Mystery Epidemic” by Jacqueline Steincamp (NZ Listener, 19 May 1984)

3. My first blog, which discusses Jacqueline Steincamp’s article, it's historical significance, and the impact it had at the time.
 
Deanne NZ said:
@Tapanui 'Flu I love this! You have such an endearing style & tone in your writing that draws me as the reader into your story like we are old friends.
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Thank you for your lovely feedback @Deanne NZ - that means a lot! I had been struggling with drafting the blog for days, and ended up completely re-writing it on the day it was posted - so I was quite nervous about it. Your comment will help me to find the confidence to do more (when my brain recovers sufficiently from the monumental PESE I just inflicted upon myself!) :)
 
Kia ora @Tapanui 'Flu

Some seriously interesting reading there, both in the blog post and the 40-year-old article

40 looong years and the first thing that comes to mind is... plus ça change, plus c'est la même chose

Except that today I would only suspect the writer and proofreader of this hilarious typo - 40 years ago it could have been the typesetter - anyone for some "calcium for witches" :rofl:
 
Ravn said:
Kia ora @Tapanui 'Flu

Some seriously interesting reading there, both in the blog post and the 40-year-old article

40 looong years and the first thing that comes to mind is... plus ça change, plus c'est la même chose

Except that today I would only suspect the writer and proofreader of this hilarious typo - 40 years ago it could have been the typesetter - anyone for some "calcium for witches" :rofl:
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Thanks @Ravn. Yep, there's been a fair bit of deja vu over the last 40 years. A lot of the new stuff is still the same old stuff, and not a lot seems to change.

The "calcium for witches" also had me in stitches :laugh:. But even funnier is how I could not, for the life of me, see that witches should read twitches! :facepalm::rofl: I've amended the digital version of the article to read "[t]witches" in case other ME-brains struggle to make the switch from witch to twitch :laugh:
 
Just heard an inspiring interview on RNZ about the Mātai Institute.
Mātai is a prominent not-for-profit research and innovation center located in Gisborne-Tairāwhiti, New Zealand. Established in October 2020, Mātai has become a leading force in medical imaging, with a state-of-the-art GE 3-Tesla MRI machine and a team of experts.

Through collaborations with academic and industrial partners, as well as researchers, scientists, clinicians, and Māori-led organisations, Mātai aims to improve health and well-being locally and globally, while also creating new educational opportunities.

The core focus of Mātai is to enhance the capabilities of medical imaging through the use of advanced software, post-processing techniques, and artificial intelligence. By doing so, Mātai seeks to advance preventative and predictive approaches through medical innovation and discovery.
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Gisborne-Tairāwhiti is where I grew up, it's a small city in a remote part of New Zealand (population 38,000). That it has world class infrastructure for medical research is almost incredible. And yet it really seems it does. It has the MRI machine and a new purpose built campus. There was mention of international collaborations underway on post-viral conditions. And also a longitudinal study to do complete body scans of children as they grow.

They will soon be publishing some work they have done on brain injury. They report being able to identify changes in the brains of people who have ongoing symptoms following a brain injury, even though conventional imaging approaches show nothing.

Link to the radio interview - 15 minute listen
 
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The following Ministry of Health commissioned report was published on 16th May 2024.
Life since the pandemic: How the COVID-19 pandemic experience has shaped public attitudes and beliefs on public health, infectious disease and vaccination | Ministry of Health NZ
I haven't read this and am not sure if this has anything relevant for the ME/CFS community or anything relevant to raise concerns about. But if someone has time to review and advise that would be helpful.

In June 2023, the Public Health Agency, within the Ministry of Health, commissioned research and evaluation agency Verian to undertake a series of research projects and population surveys into attitudes and behaviours related to public health measures following the COVID-19 pandemic. The purpose of this research was to examine the impact of COVID-19 on New Zealanders’ attitudes and behaviours towards public health measures and use this knowledge to better prepare the Ministry, and other decision makers, for future pandemics and other major health threats.

This work is split into two parts, each with two reports. The first part is two repeated behavioural surveys to monitor adherence to public health measures over time, covering both intention and actual behaviour. The second part is a qualitative analysis to explore drivers of COVID-19 related public health behaviours, and to quantify the impact of barriers and other factors on adherence to public health measures. This involves qualitative interviews followed by a survey.

This report, Life since the pandemic: How the COVID-19 pandemic experience has shaped public attitudes and beliefs on public health, infectious disease and vaccination is based on findings from the qualitative interviews and is the first of the four reports to be published. It focuses on the drivers behind people’s public health actions and attitudes during the COVID-19 pandemic and how they have changed over time.
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Tapanui 'Flu said:
Kia ora everyone. I've been quiet on S4ME due to lack of cognitive spoons, so this is my first post here (and I hope I’m doing it right!)

Yesterday was the 40th Anniversary of a landmark article in the New Zealand Listener, that contains a goldmine of historical information about the Tapanui ‘Flu epidemic that is not well known. So, I seized the day (or, more accurately, the evening) to launch some new Kiwiana onto the internet:
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After that serious piece of work Tapanui 'Flu is having some fun with this Twitter campaign aimed at John Oliver and Jon Stewart
 
Public consultation on New Zealand's system for making complaints about health care.
Submissions close 31 Jul 2024


"We are reviewing the Code of Health and Disability Service Consumers’ Rights (the Code) and the Health and Disability Commissioner Act (the Act). You can have your say in our public consultation. Submissions close on 31 July 2024.

We want to know how you think we can make the Act and the Code better. You will be able to answer questions on five topics:
  • Supporting better and equitable complaint resolution;
  • Making the Act and the Code more effective for, and responsive to the needs of, Māori;
  • Making the Act and the Code work better for tāngata whaikaha | disabled people;
  • Considering options for a right of appeal of HDC decisions; and
  • Minor and technical improvements."
 
New novel by recognised NZ author, David Coventry, pwME, about his experience with ME.
https://teherengawakapress.co.nz/performance/

Performance is a self-portrait like no other. David Coventry takes us into his experience of ME, a debilitating systemic disease which took hold in March 2013 but has roots in his childhood.

For Coventry, ME radically overturns the rules of time, thought and embodiment – an experience which has shaped the writing of this book. Through an illuminating blend of life transcription and deep imaginative projection, he shows how placing fiction into the stories of our damaged lives can remind us of who we are and who we might have been, even when so much of us has been taken away by illness.

From a mountaineering disaster in Kaikōura to a literary encounter in Austria, a country mansion to a volcanic archipelago, this novel is a strikingly vivid, at times disorienting series of journeys, stopovers and emergencies that take in the world, one in which Coventry is often an outsider, even when at home in Wellington. With purposeful unreliability and flashes of humour amid pain and searching, Performance takes us into a space where ‘reading’ itself fails as a description of how we meet the text. This is a generous, unforgettable vista of life within illness.

‘Like all great art, Performance defies paraphrase. This novel is a staggeringly ambitious work that few writers or scholars could conceive and probably only one could enact. It locates David Coventry in a genealogy of modern and postmodern writers including Virginia Woolf and Thomas Bernhard, whose illness intelligence is part of what makes their work innovative, important, and unforgettable.’ —Martha Stoddard Holmes, author of Fictions of Affliction: Physical Disability in Victoria Culture

‘A masterpiece of narrative disintegration with a deep psychic grip on the reader – a book whose design not infrequently had me exhaling in both profound affect and aesthetic astonishment. A monumental achievement.’
—Tracey Slaughter, author of Devil’s Trumpet and Conventional Weapons

'Compelling, thoughtful, memorable, suitably frustrating and disconcerting. It is a unique contribution to the literature of illness.' —Thomas Koed, Volume Books

David Coventry’s first novel, The Invisible Mile, won the Hubert Church Award for Best First Book at the 2016 Ockham New Zealand Book Awards. It was also published in the UK and Commonwealth by Picador UK, and the USA and Canada by Europa Editions. It has been translated into Dutch, Hebrew, Spanish, Danish and German. His second novel, Dance Prone, was published in 2020. David received an MA in Creative Writing in 2010 from the International Institute of Modern Letters, and he was the recipient of the 2015 Todd New Writer’s Bursary from Creative New Zealand. In 2022 he completed his PhD exploring the complexities and impossibilities of living a creative life with ME/CFS – a project which was selected for the 2022 Dean’s List, and forms the basis of Performance (2024). He was the 2022 Ursula Bethell Writer in Residence at the University of Canterbury.
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Available in paperback or kindle
Amazon product ASIN B0D34KGBV6
 
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