News from Aotearoa/New Zealand and the Pacific Islands

Yes, just a teeny tiny bit of biomarker hype happening here :rolleyes:

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?
 
Radio New Zealand
Long Covid voices 'excluded' from inquiry hearings
People with Long Covid are disappointed their voices will not be prioritised as part of public hearings about the government's pandemic response.

Phase two of the Royal Commission of Inquiry into the official response to Covid-19 gets underway in Auckland on Monday, and will run until Thursday. It will hear from everyday people and their experiences of the government's decisions over vaccine use and lockdowns, including the extended lockdowns in Auckland and Northland. It will also hear from businesses and organisations affected.

Long Covid Support Aotearoa spokesperson Catherine Appleby said she felt in choosing its focus, the inuiry had missed an opportunity to include the perspectives of people with post-Covid conditions.
"A massive mistake really, to do that, because we were directly affected and our lives are still particularly affected as well."

Appleby worked as a nurse at an urgent care centre when Covid-19 hit in 2020. Each day, after her shift, she would have to strip down her clothes on her doorstep, in the hope she wouldn't transmit Covid to her whānau. It's something many other healthcare practitioners did. In 2022, she caught Covid-19 herself. She returned to work thinking she was recovered, but the symptoms didn't go away.

She reduced her hours of work in the hope it would improve things, but it didn't. "Finally, I just had to decide, and at that stage, I was over two and a half years into Long Covid, and I thought, "I'm looking down the barrel of non-recovery. If I want to have any chance of recovery, I just have to stop working completely."
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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.”

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.
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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”.
 
Mij said:
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”.
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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.
 
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)
 
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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.
 
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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:
While orthostatic intolerance and post-exertional symptom exacerbation (PESE) are amenable to rehabilitation, where they are diagnosed it will be necessary to
modify interventions for rehabilitation to be safe.
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It qualifies these recommendations with the following: ‘We do not yet have sufficient evidence of expected rehabilitation outcomes in people with post
COVID-19 condition and subpopulations. However, maintenance or improvement of functioning is expected in patients who are referred using this recommendation based on the available indirect evidence for interventions for rehabilitation of selected impairments.’
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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

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 www.neurocare.co.nz
 
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