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News from Aotearoa/New Zealand and the Pacific Islands
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Ravn
Senior Member (Voting Rights)
Yes, just a teeny tiny bit of biomarker hype happening here 
More interesting but with much less detail it was mentioned that they’re planning to study cell-free dna
This doesn’t seem to have been looked at much in ME if the tag ‘cell-free dna’ is anything to go by
I checked the donation website for their current projects but cell-free dna doesn’t look to map onto either of them? So an additional project?
More interesting but with much less detail it was mentioned that they’re planning to study cell-free dna
This doesn’t seem to have been looked at much in ME if the tag ‘cell-free dna’ is anything to go by
I checked the donation website for their current projects but cell-free dna doesn’t look to map onto either of them? So an additional project?
Tags: cell-free dna (and neutrophil extracellular traps)
Mij
Senior Member (Voting Rights)
Teen was told the crippling stomach pain she suffered was in her head- it wasn't
A leading vascular surgeon is angry and frustrated that patients like Amelia Turner are told their symptoms are eating disorders before a correct diagnosis is made. He says the collateral damage of being believed is far-reaching
“There is a chunk of our health service actively resisting this diagnosis and treatment upfront.”
“What that means is patients are told their symptoms are the result of an eating disorder. It is true these patients lose weight; their weight loss can be dramatic and frightening. And the majority are young women. But they are not starving themselves to lose weight. The are not eating because it’s painful to eat. This is a physical and anatomical issue, not a mental health issue. Tragically, the more weight they lose, the more painful the AVCS symptoms because fat is a useful buffer to keep structures apart and reduce compression.”
In a statement to RNZ, Te Whatu Ora says AVCS, also called median arcuate ligament syndrome (MALS), can be a complication of Ehlers-Danlos Syndrome. It also occurs in other conditions and may arise as a consequence of weight loss.
Te Whatu Ora says a “very careful assessment of how we diagnose and treat MALS in New Zealand is required because the available evidence is of low quality, with no published randomised controlled trials”.
A leading vascular surgeon is angry and frustrated that patients like Amelia Turner are told their symptoms are eating disorders before a correct diagnosis is made. He says the collateral damage of being believed is far-reaching
“There is a chunk of our health service actively resisting this diagnosis and treatment upfront.”
Chris HoldawayVascular surgeon at Waikato Hospital.
“What that means is patients are told their symptoms are the result of an eating disorder. It is true these patients lose weight; their weight loss can be dramatic and frightening. And the majority are young women. But they are not starving themselves to lose weight. The are not eating because it’s painful to eat. This is a physical and anatomical issue, not a mental health issue. Tragically, the more weight they lose, the more painful the AVCS symptoms because fat is a useful buffer to keep structures apart and reduce compression.”
In a statement to RNZ, Te Whatu Ora says AVCS, also called median arcuate ligament syndrome (MALS), can be a complication of Ehlers-Danlos Syndrome. It also occurs in other conditions and may arise as a consequence of weight loss.
Te Whatu Ora says a “very careful assessment of how we diagnose and treat MALS in New Zealand is required because the available evidence is of low quality, with no published randomised controlled trials”.
Jonathan Edwards
Senior Member (Voting Rights)
Which would suggest that statements such as " The are not eating because it’s painful to eat. This is a physical and anatomical issue, not a mental health issue. Tragically, the more weight they lose, the more painful the AVCS symptoms because fat is a useful buffer to keep structures apart and reduce compression.” may have no very clear foundation.
hibiscuswahine
Senior Member (Voting Rights)
ME Support have put out a position statement on Brain Retraining and has directed that there is to be no discussion of it and related "therapies" in face to face support groups or in their national Facebook support group.
I have attached other files about this here.
(link edited following thread split)
I have attached other files about this here.
(link edited following thread split)
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Long Covid Models of Care for People with Long Covid - Report from Ministry of Health
Shared in a chat elsewhere today. Possibly published in May 2025. I do not recall seeing it discussed here previously.
Shared in a chat elsewhere today. Possibly published in May 2025. I do not recall seeing it discussed here previously.
Link minus the Facebook tracking –
https://www.health.govt.nz/system/files/2025-05/models-care-people-living-with-long-covid.pdf
Thanks @Deanne NZ I wonder if we should start a new thread. It has the usual mix of good and bad points on initial skim. One good being listing the potential models of care with JE's specialty physician-led clinic listed first. One bad being highlighting the REGAIN trial.
Clinical effectiveness of an online supervised group physical and mental health rehabilitation programme for adults with post-covid-19 condition REGAIN study: multicentre randomised controlled trial (2024, BMJ)
They look to focus on Long COVID Definitions and Models of Care (2024, Annals of Internal Medicine) which I don't think we have a thread for either. It claims to be free access but the PDF appears locked up. I'll make a thread if I can have a look at the article.
https://www.health.govt.nz/system/files/2025-05/models-care-people-living-with-long-covid.pdf
Thanks @Deanne NZ I wonder if we should start a new thread. It has the usual mix of good and bad points on initial skim. One good being listing the potential models of care with JE's specialty physician-led clinic listed first. One bad being highlighting the REGAIN trial.
Clinical effectiveness of an online supervised group physical and mental health rehabilitation programme for adults with post-covid-19 condition REGAIN study: multicentre randomised controlled trial (2024, BMJ)
They look to focus on Long COVID Definitions and Models of Care (2024, Annals of Internal Medicine) which I don't think we have a thread for either. It claims to be free access but the PDF appears locked up. I'll make a thread if I can have a look at the article.
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rvallee
Senior Member (Voting Rights)
I don't feel as generous in my assessment. It's slightly better than average, but that's only because the average is far below professional grade. It's not as heavily biased as some, but all this report does is cherry-pick a few examples of how things are done elsewhere or from low-quality biased randomized trials, which they assess as high quality, and assume that rehabilitation must work because reasons:
They don't have a clue. They started not having a clue, and that hasn't changed. This is an imaginary model that can be summed as: if rehabilitation worked, it would work, therefore we must do rehabilitation, here's how a few other organizations have done it. It assumes that rehabilitation treatments exist and are effective, indifferent to the fact that it's widely known and reported that no such treatments exist.
This report is no different than a Theranos marketing presentation where they assume their machines work and how they should be deployed and how many do you want to buy? Except they don't. Because results don't matter at all.
So, nothing changes. Nothing has been learned anywhere, things are just as bad as on day 1, and nothing will change because results simply don't matter. They mention a few randomized trials that produced no useful benefits, and basically conclude: "meh, good enough". Because results don't matter, only the appearance of pretending to do something does. It's typical but always weird to see stuff like "community-supported self-management" when in reality it means you're on your own.
They don't have a clue. They started not having a clue, and that hasn't changed. This is an imaginary model that can be summed as: if rehabilitation worked, it would work, therefore we must do rehabilitation, here's how a few other organizations have done it. It assumes that rehabilitation treatments exist and are effective, indifferent to the fact that it's widely known and reported that no such treatments exist.
This report is no different than a Theranos marketing presentation where they assume their machines work and how they should be deployed and how many do you want to buy? Except they don't. Because results don't matter at all.
A parent in a FB group asked about Neuro Care in Auckland offering treatments for a wide variety of conditions including CFS, Dysautonomia, Concussion, Brain Injury Fibromyalgia etc etc etc oh hand vaccine injury. The treatments are a combination of “Functional Neurological Rehabilitation” & Hyperbaric Oxygen Therapy. The 3 DOCTORS offering this service are chiropractors although there is virtually no reference in the website to them offering chiropractic treatments.
Another parent commented that they have seen them for their daughter & that guy they saw was so knowledgeable.
I pointed out that they are not medical doctors. The website is so misleading but I doubt that it actually breaks any laws.
www.neurocare.co.nz
Another parent commented that they have seen them for their daughter & that guy they saw was so knowledgeable.
I pointed out that they are not medical doctors. The website is so misleading but I doubt that it actually breaks any laws.
Neuro Care
Neuro Care provides advanced neurological rehabilitation, combining Hyperbaric Oxygen Therapy (HBOT) and Functional Neurological Rehabilitation to treat brain injuries, fibromyalgia, stroke recovery, vaccine injuries and more. Achieve lasting recovery with science-backed, personalised care in New Ze
www.neurocare.co.nz
hibiscuswahine
Senior Member (Voting Rights)
This Stuff article charts the progress of a TV reporter, off work with LC/ME, after a recent story of another reporter having to resign from her Stuff job due to LC/ME.
The TV reporter has been struggling for two years with LC/ME and further covid infection and then basically becomes an advert for LP and she "focused on the science behind how the brain and body react". (Sadly she is not aware that most of this "science" is pseudoscience). She felt it built on skills she had learnt prior which appears to be pacing and calming techniques for high arousal. Has not fully recovered.
https://www.stuff.co.nz/nz-news/360...dy-started-crashing-long-covid-2-12-years-ago
The TV reporter has been struggling for two years with LC/ME and further covid infection and then basically becomes an advert for LP and she "focused on the science behind how the brain and body react". (Sadly she is not aware that most of this "science" is pseudoscience). She felt it built on skills she had learnt prior which appears to be pacing and calming techniques for high arousal. Has not fully recovered.
https://www.stuff.co.nz/nz-news/360...dy-started-crashing-long-covid-2-12-years-ago
The other reporter's story is at https://www.stuff.co.nz/culture/360789288/tvnz-journalist-resigns-after-experiencing-long-covid
Ravn
Senior Member (Voting Rights)
There seems to be a new script emerging in recent media stories about LP in NZ
The old script was a version of this: I was terribly horribly ill, tried everything, nothing helped. Someone suggested the LP, I was very sceptical but had nothing to loose so tried it anyway. To my huge surprise miracle, immediate cure!!!
The new script is something like this: I was terribly horribly ill, worked very hard on my health journey but was making only slow progress. Then I tried the LP and that helped hugely. It’s all based on neuroscience you know. I’m not a 100% but sooo much better
Maybe they’ve decided the old miracle script was raising too many too obvious too-good-to-be-true red flags with people and that the new, more moderate claims would be perceived as more believable and therefore more likely to be effective at parting people from their $$$
Also, in NZ the LP promoters are working very hard at being included in medical education. That may explain their desire to not be seen as making easily dismissible miracle cure claims
[just to note, to avoid confusion, as far as we know the second reporter hasn’t done any LP though I suspect there’s a good chance she’s being approached with “special offers”]
The old script was a version of this: I was terribly horribly ill, tried everything, nothing helped. Someone suggested the LP, I was very sceptical but had nothing to loose so tried it anyway. To my huge surprise miracle, immediate cure!!!
The new script is something like this: I was terribly horribly ill, worked very hard on my health journey but was making only slow progress. Then I tried the LP and that helped hugely. It’s all based on neuroscience you know. I’m not a 100% but sooo much better
Maybe they’ve decided the old miracle script was raising too many too obvious too-good-to-be-true red flags with people and that the new, more moderate claims would be perceived as more believable and therefore more likely to be effective at parting people from their $$$
Also, in NZ the LP promoters are working very hard at being included in medical education. That may explain their desire to not be seen as making easily dismissible miracle cure claims
[just to note, to avoid confusion, as far as we know the second reporter hasn’t done any LP though I suspect there’s a good chance she’s being approached with “special offers”]
I doubt she'd be on board with that.
Zoe Madden-Smith at Re: News was responsible for the excellent recent piece linked here.
Zoe Madden-Smith at Re: News was responsible for the excellent recent piece linked here.
Dolphin
Senior Member (Voting Rights)
BrokenBeaktheBrave
Established Member
I suspect it will be RNZ given they're been consistently covering long covid and MECFS since the start of the pandemic. So much so that I even anticiplated that Chris would be invited to interview on RNZ as they've been doing a pretty good job at keeping up with LC/MECFS news. I'll do some digging but I suspect it will be the Saturday Morning show on Radio New Zealand. Will circle back if I can find anything.
BrokenBeaktheBrave
Established Member
Yep it is indeed "Saturday Morning" on Radtio New Zealand at 7.41am (NZST) - so likely interviewing right now. The show is usually uploaded and available to listen by Saturday afternoon BST.
Should be able to listen here when the episode is uploaded.
