News from Aotearoa/New Zealand and the Pacific Islands

Hutan said:
Thanks @Ravn, the archive link worked for me. But, ugh.



For goodness sake. The illness that seemed to start my ME/CFS and that of my two children didn't have us lying in bed for weeks. For my son and I, who still have ME/CFS 10 years later, it didn't even have us significantly changing our routines. We assumed that we would recover, just as we had with previous similar illnesses before.



Here's a roll call of woo:


And from there it turns into paragraphs of advertising for the Lightning Process. You've heard it all before. Profiteering from the tragedy of Long Covid.
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The whole framing about the solution being so damn simple, requiring no skills at all, all you have to do is to be open-minded, to not be such a downer ruminating about that illness-so-severe-it-left-you-bedbound-for-days that didn't even happen, since most cases stem from mild illnesses anyway, is so creepily similar to the common tactic of tyrannical governments calling their enemies (usually people with no power at all) all-powerful, capable of toppling society in a heartbeat, but also being very easy to beat, all it takes is the will to do it. And every one of their failure is because of that nefarious enemy.

It's not even similar, it's the same thing. The enemy is both weak and all-powerful at the same time, so easy to tame, but capable of destroying everything from within. Coming from expert professionals this is catastrophic. It destroys trust and credibility in all expertise that they have to lie so much and make up fake scenarios that almost never happen. This is as good an example of opening Pandora's box as it gets.

Long Covid has revealed all of this as a giant scam. We even have good data about natural recoveries being the norm, and the more so early on. All of which completely nullifies any weak attribution for a particular treatment. And still it's happening anyway. We even see people saying "this thing helped me", which could just as well have been drinking cow urine on a full moon for all that it matters, and MDs are gushing over it, despite knowing fully that this is not a valid way to demonstrate causal evidence.

It's not just Long Covid, COVID itself made medicine massively regress. It's basically abandoning science as the only valid method of determining what is true and what isn't. It's all feelings now. It's truly baffling what's happening right now. I'd be so depressed if I wasn't so confident in AIs changing everything soon.
 
Ravn said:
The Spinoff has, sort of, responded to concerns and the article has been edited:

"This piece was amended on October 1, 2023 to make clear that this is an account of one person’s recovery, not medical advice, and to respond to readers’ concerns about the Lightning Process in relation to ME/CFS."

I haven't checked to see what changes have been made.

Archived revised version: https://archive.ph/7bgd3
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Unfortunately, this is also actual medical advice you can get from MDs behind their desk in an actual clinic or hospital. And that is the most terrifying thing about it. It's as if geologists were going on about hollow Earth in their normal every day work, integrating it as part of it. Not in their spare time in the week-end but in actual professional work, using it in earthquake prediction models and the like.

You can in fact get this very kind of advice going back decades and routinely so. It's been plaguing medicine for a long time, having essentially built the foundations of the profession not on the scientific method, but rather on some complex mix of various practices and beliefs. Until medicine is actually built on science, it's only going to get worse.
 
Trish said:
What is nitter.net?
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It's an unofficial "mirror" of twitter and allows you to actually read threads and replies without being logged in. I don't know how long it will last, but for less important links that don't need to be permanently recorded here, it seems convenient. From https://nitter.net/about —

Nitter is a free and open source alternative Twitter front-end focused on privacy and performance. The source is available on GitHub at https://github.com/zedeus/nitter

No JavaScript or ads
All requests go through the backend, client never talks to Twitter
Prevents Twitter from tracking your IP or JavaScript fingerprint
Uses Twitter's unofficial API (no rate limits or developer account required)
 
It's actually a listen not a watch, as audio only. No need to listen though - the content is good (in my biased opinion) but only represents an overview of the scientific thinking to date, which is probably well understood already here on S4ME. There's certainly nothing in the content to avoid but a positive recommendation only for those that might like to hear a rundown of where the immunology/metabolic arm of LC/ME research is coming from and heading to.

The audience for the talk were prospective donors to the University, so it's a conversational and relatively easy listen with lay descriptions, although as Anna herself says at the beginning "I can talk a lot." :)
 
https://www.wgtn.ac.nz/health/centr...-centre/recent-projects/long-covid-collective

"Long COVID Collective
A platform for collaboration between researchers, professionals and those with lived experiences of Long COVID to drive the future direction of health delivery.

Upcoming opportunities
Research should always be fit for purpose - for who it serves.
We'd greatly appreciate your input in identifying crucial Long COVID questions that will shape future studies. We invite you to a one-hour Zoom session to brainstorm ideas. Your contribution will be invaluable. We look forward to your participation.

Key dates
  • Tuesday 24 October 2023, 10–11am: We're keen to hear from individuals with lived experiences of Long COVID.
  • Tuesday 31 October 2023, 10–11am: Researchers and health professionals interested in Long COVID, your insights are crucial.
  • Monday 13 November 2023, 10–11am: Calling all kids with Long COVID and their parents parents to join the discussion.
Your participation is greatly appreciated, and we're looking forward to these engaging sessions."

There's also a link to the Long Covid Registry, and monthly summaries of Long covid literature.
 
Fatigue study uses population data
A new study will highlight the daily lives of people living with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in New Zealand.

University of Otago department of women’s and children’s health research fellow Dr Nicholas Bowden is the principal investigator.

He said he hoped the research would, for the first time in New Zealand, provide population-level quantitative evidence around some of the experiences and struggles faced by people with ME/CFS.

The study would utilise the Integrated Data Infrastructure, a large research database managed by Stats NZ Tatauranga Aotearoa, he said.

This resource brought together data from all government agencies and enabled them to be linked at an individual level.

"What we are planning to do is to identify a population with ME/CFS and then look at their health, social service use and labour market characteristics," Dr Bowden said.

For example, information about people’s health such as chronic health conditions, mental health, hospital admissions or general health service use as well as their use of social services, employment and income could be linked at the individual level.

"When you are able to do that at a population level, that is quite powerful information."

The study would investigate about 2000 people identified through their government service interactions as having received a health and disability-related benefit with a diagnosis code for ME/CFS.

Although this was only a small subset of the wider ME/CFS population in New Zealand, it would still provide statistically useful information.
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https://www.odt.co.nz/the-star/fatigue-study-uses-population-data
 
Sly Saint said:
Fatigue study uses population data

https://www.odt.co.nz/the-star/fatigue-study-uses-population-data
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This article (appalling headline btw) is about one of the two $25,000 ANZMES research grants. A worthwhile project but unfortunately a bit limited by how much you can do with $25,000 (not meant as a criticism of anybody involved, any criticism must be directed at all the government health research funders past and present who should have funded this sort of thing long ago).

Another limitation is this bit
ODT Star article said:
The study would investigate about 2000 people identified through their government service interactions as having received a health and disability-related benefit with a diagnosis code for ME/CFS.
Although this was only a small subset of the wider ME/CFS population in New Zealand, it would still provide statistically useful information.
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The article doesn't say how they're going to address any potential biases arising from this approach and which could involve significant proportions of the total ME population, such as
  • inclusion of people misdiagnosed with ME/CFS
  • exclusion of pwME without a formal diagnosis
  • exclusion of pwME not in contact with the benefit system (e.g. those with a partner earning above the threshold and children fully supported by their parents)
Still, it's a good start and especially good to see someone from outside the very small circle of established ME researchers taking an interest in ME. Looking forward to the results
 
MECFS Canterbury
Financial Assistance from Work and Income when we are chronically ill
Rose-elle Ross, a Work and Income Advocate with MECFS Canterbury, recently talked about the financial assistance that people with ME/CFS and Long COVID in New Zealand may be eligible for from Work and Income. Presentation for MECFS Canterbury, 11th October 2023. Topics covered: ✦ The Advocacy service at MECFS Canterbury ✦ Types of benefits and payments available from Work and Income ✦ How to apply to Work and Income ✦ Tips for making it easier to deal with Work and Income It can be a stressful time when applying for financial assistance. Reaching out for support can really help. Please note that the audio is not always crystal clear. We apologise for this.
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RNZ: NZ must prepare for Long Covid implications, researcher warns
article said:
Interim results from New Zealand's Long Covid Registry show support measures are lacking and people are going to work while unwell.

The study, conducted in collaboration with Long Covid Support Aotearoa and the University of Auckland, with funding from the Ministry of Health, is the first quantitative research of New Zealanders with Long Covid.

Research lead Dr Paula Lorgelly said one of the advantages of this study was that it looked at cases of Long Covid from more recent Covid variants.

The study looked at a range of health and wellbeing factors experienced by Long Covid sufferers.

Quality of life was measured using the globally renowned EQ-5D questionnaire. Lorgelly said the mean score for participants before Covid was 0.88, fairly standard for New Zealanders.

"Now with Long Covid, they're reporting a mean score of 0.529. And that is similar to people who have severe cancer and severe MS," she said.
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Continues at https://www.rnz.co.nz/news/national...-for-long-covid-implications-researcher-warns
 
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