News from Aotearoa/New Zealand and the Pacific Islands

Pleased to report the article has now been pulled. (Was here.) Well done to the NZ ME community who responded.

https://nitter.net/TheSpinoffTV/status/1708620781155176711#m

 

Equivalent of twitter for people who don't want to post on twitter I think.

 

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.

 

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.

 

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)

 

That's the same link as in my original post. It results in "page not found". Perhaps he had it locally cached.

 

Dr Anna Brooks talking at the University of Auckland on the history and direction of LC/ME research in NZ.

https://www.youtube.com/watch?v=VB7Cm6DH10w

 

Do you know if it's a recommended watch or is this something best avoided? Video is more than an hour long.

 

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."

 

Fatigue study uses population data

https://www.odt.co.nz/the-star/fatigue-study-uses-population-data

 

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

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

 

I want what they've got!
More seriously, it's impressive what the LC people have managed to do in a short space of time (short compared to ME, I'm sure it feels too slow to them)

 

"monthly summaries of Long covid literature."

I think our weekly News-in-brief is a pretty strong resource though!

 

MECFS Canterbury
Financial Assistance from Work and Income when we are chronically ill

https://www.youtube.com/watch?v=xgTxw5iS9GE

 

RNZ: NZ must prepare for Long Covid implications, researcher warns

Continues at https://www.rnz.co.nz/news/national...-for-long-covid-implications-researcher-warns