News from Aotearoa/New Zealand and the Pacific Islands

Ravn said:
Another thought. Given the controversies around the English names it is a big ask to come up with something better in Māori, especially at short notice. The community would have to first agree on what they want from the name and then find suitable language to express it.

One possible way around that would be to partially translate and partially transliterate for now and use that as a placeholder name until the international community has decided on a final name for ME/CFS that better reflects what ME really is, once we know that, at which point the placeholder can be changed to a better term.
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I agree. In the Healthinfo document, subheadings have been translated into Maori. One of the subheadings is
Whakatau me tiaki ake i a koe i te ME/CFS
Diagnosis and self-care for ME/CFS
So, they used the disease name of ME/CFS, although inconsistently. Using ME/CFS seems like a good way to go for now.
 
@Hutan, until when will you be able to feed back any comments to Te Reo Komiti via the HealthInfo people?
And is there a way Māori with ME can contact them directly?
 
event
The looming crisis of Long Covid by Anna Brooks
Date and time

Tue, August 2, 2022

6:30 PM – 7:30 PM NZST

Location
The Birdcage

133 Franklin Road

Auckland, Auckland 1011

New Zealand

Talk Description

The global Covid-19 pandemic has changed life as we once knew it, creating wave upon wave of disruptions and uncertainty. A pandemic-scale, highly contagious virus has not been experienced in our lifetimes. However, the notion that viruses can cause debilitating post-infectious conditions is not new. Long Covid is the term coined by a patient-led movement in May 2020 following the realisation that many people were in fact not recovering from their SARS-CoV-2 infection – a movement that was created when it seemed no one was listening. That was everyone except the millions worldwide who were already living with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) – the most common, yet still poorly understood, post-viral condition. It has taken a pandemic-scale virus for many to finally take a largely neglected area of research and medicine seriously. There is still much we don’t understand about how viruses affect our long-term health – so what has this pandemic taught us that desperately needs attention?
Bio

Dr Anna Brooks is a cellular immunologist, Senior Lecturer and Director of the Auckland Cytometry lab. She has a broad background in human immunology, with specific training and expertise in advanced cell characterisation using leading-edge cell analysis technologies (spectral flow cytometry). Anna’s research focuses on characterising immune cell populations in the blood following various immune responses such as viral infections, vaccinations or treatments. Her primary research interest lies in understanding the immune dysfunction associated with Long Covid and the relationship to or comparison with other post-viral illnesses such as ME/CFS.
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https://www.eventbrite.com.au/e/the...vid-tickets-369564024947?aff=ebdsoporgprofile
 
Scientists who study the potential relationship between chronic fatigue and the long struggle of Cov

23 Jun 2022 More than 100,000 kiwis could obtain a long COVID, but researchers studying fatigue diseases are fighting to obtain funds for next year. #Scientistsstudying #potentiallink #chronicfatigue #longCovid Professor Warren Tate is working hard to ensure crucial funds, but, despite the urgency of finding responses to fatigue diseases, he does not know if they can continue. A small team of Dumedin -based researchers is essential to understand fatigue disease in New Zealand, but they could not be present in another year. Professor Emeritus Warren Tate says that it took two decades when the research of chronic fatigue syndrome will take seriously, but after a decade of good work it is still a mission to ensure funds. From this week, they still did not have the financing to continue in 2023. This was despite the current studies that show an overlap between myalgic encephalomyelitis/chronic fatigue syndrome and the long covid, the first of which suffer 25,000 kiwis, and the second that could affect up to 100,000 people. * Long Covid's research could bring great advance for chronic fatigue patients
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"Professor Emeritus Warren Tate says that it took two decades when the research of chronic fatigue syndrome will take seriously"
not helped by constant referral as 'chronic fatigue'.
 
Sly Saint said:
Scientists who study the potential relationship between chronic fatigue and the long struggle of Cov





"Professor Emeritus Warren Tate says that it took two decades when the research of chronic fatigue syndrome will take seriously"
not helped by constant referral as 'chronic fatigue'.
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Seriously weird channel. Seems to be some sort of AI-generated "news presenter" reading articles from other sites (in this case the Stuff article linked in post#705). Yet in the the 'about' section they make it sound as though they have their own team of journalists. They joined Youtube only in January this year and there's nothing to be found about 'NZ VIP News' by googling. Doesn't inspire confidence.
 
RNZ: "Efforts underway to establish Long Covid clinic"

14 min interview

Some mixed messages here.

On the one hand, recognition that currently there's only symptomatic treatment, recognition of gaslighting of patients (incl pwME) and recognition, albeit a bit limited, of PEM and pacing.

On the other hand naive admiration for the UK LC clinics and excessive focus on physio and breathing rehab.

https://www.rnz.co.nz/national/prog...forts-underway-to-establish-long-covid-clinic
 
Ravn said:
On the one hand, recognition that currently there's only symptomatic treatment, recognition of gaslighting of patients (incl pwME) and recognition, albeit a bit limited, of PEM and pacing.

On the other hand naive admiration for the UK LC clinics and excessive focus on physio and breathing rehab.
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Recognize the problem. Recommend the problem.

Spot the real problem here.

And if only there was symptomatic treatment. It's literally the whole problem that there isn't any at all, everything exists to get people back to work and stop whining about their symptoms, even though nothing exists to do that either. It's all a house of lies, built on foundations of lies and with the end-goal of lying about the whole thing.
 
Experts warn teachers and parents to look out for long Covid in children
RNZ news item
For families like Becca's some answers could not come soon enough.

"Because this is happening to people now and research obviously takes takes time and if you're only sort of starting research now, it's still going to be a long time before those findings come out and things can be changed and put in place."

A spokesperson from the Ministry of Health said although the Victoria University was studying long Covid, its funding was not specifically focused on children.

An aspect of it focused on the impact on families, which may include children. It also launched a Covid-19 research fund earlier this year and a key theme will be long Covid in adults and children.
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Not sure if this has been posted already.
NZ Geographic article: "Warren Tate investigates unexplained illnesses"
It was Tate’s first experience of myalgic encephalomyelitis (ME), and of medical professionals’ reactions to it. “So I tried to get started on research,” he says. “I put in a grant to the Health Research Council and it basically got laughed out. The referee said, ‘This is not a real disease’.”

In 2010, Tate won New Zealand’s highest honour in science, the Rutherford Medal, for his work on protein synthesis and Alzheimer’s. It didn’t make it any easier to fund his work on ME. “People have said, ‘Why, after winning the Rutherford Medal, why would you want to fritter away the rest of your research time working on this?’”
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Don't recall having see it put like this before (no further elaboration oin the article):
In ME patients, less energy was being made, and, as if to compensate, the mitochondria were overproducing other proteins instead. The factory, instead of generating its product, was busy making more machinery.
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https://www.nzgeo.com/stories/warren-tate-investigates-unexplained-illnesses/
 
Press release:
It is estimated that at least 25,000 people in Aotearoa have Myalgic Encephalomyelitis, also known as Chronic Fatigue Synrome (ME/CFS). A new fund to support people experiencing this condition is being launched in Nelson this month and the organisers hope to raise $50,000 to kickstart their efforts.

The ‘Zest for Life Fund’ has been established in the memory of Zascha Mann, a young Nelson man who died in July 2021 as a result of a long struggle with this debilitating condition. The name Zest for Life was chosen in recognition of Zascha’s exuberance for life as an adventurer, traveller, skier, mountain climber, and kayaker.
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https://www.scoop.co.nz/stories/GE2...ing-to-support-mechronic-fatigue-syndrome.htm

Article heavily based on press release:
https://www.stuff.co.nz/national/12...-spur-fund-to-tackle-chronic-fatigue-syndrome

[I have no connection with this and no additional knowledge.]
 
LONG COVID CARE:
I came across this article highlighting a care model in Hawkes Bay... http://www.ourhealthhb.nz/news-and-...pport-for-long-covid-sufferers-in-hawkes-bay/

People are referred by their GP and then assessed by the Outreach team who determines if they need to see a Nurse Practitioner, an Allied Health professional or another service for either an acute COVID infection, post-COVID syndrome or Long-COVID rehabilitation.
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The article links to a guidance document that looks reasonable...
http://www.ourhealthhb.nz/assets/CO...6_TWOHB_COVID-Self-Management-Booklet_1.4.pdf
 
6444 signatures on the ANZMES petition that closed 30th August.

Article related to the ANZMES Petition to reclassify ME/CFS as a disability...
https://www.stuff.co.nz/national/he...isappointed-officials-wont-reclassify-illness

This quotes MOH officials as saying the reclassification won't happen.
The Ministry of Health said it understood the impact of illnesses such as ME or CFS “can be significant for individuals and their whānau, and that the symptoms can be experienced as disabling”.

Despite this, the ministry said it was “not currently looking into reclassification for ME/CFS”.
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and
Charlton said it was “disappointing” to hear the ministry’s position and authorities “cannot see just how serious this situation is”.

Fiona Charlton, president of the Associated NZ Myalgic Encephalomyelitis Society Inc, said it was pleased the petition had garnered the support it had, but was disappointed to hear the Ministry of Health “is not currently looking into reclassification for ME/CFS”.

There had been no consultation while the petition was open and ANZMES had not received a response from the Ministry of Disabled People (Whaikaha) regarding its “extensive” report, she said.
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ANZMES statement post closing of the Petition to reclassify ME/CFS as a disability...
https://anzmes.org.nz/reclassification-update/

This seems to [be] in response to the article shared in prior post above, that quoted MOH officials as saying the reclassification won't happen.

ANZMES President, Fiona Charlton says, “What they have failed to understand previously, is that ME/CFS is truly a debilitating and disabling condition, with little recognition, and inadequate access to services.

Reclassification would help provide the support needed for people with ME/CFS to have improved quality of life and improved equity to health services.”
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and
The petition has been accompanied by an evidence-based report, sent to Whaikaha (Ministry of Disabled People), Health & Disabilities Commissioner, Disability Rights Commissioner, Health Select Committee, Health Ministers, and the COVID-19 Response Minister, and ANZMES is awaiting their responses.

ANZMES is very pleased with the new appointment of CEO to Whaikaha. Paula Tesoriero understands the needs of people with ME/CFS and we not only congratulate her in her role and believe she’ll do a great job for all people living with disabilities, but we hope that in this new role she’ll be in the position to affect real positive change for people with ME/CFS.

Charlton says, “we have not given up hope.”

“After this due consideration by parliament and portfolio ministers, and the new CEO of Whaikaha, we hope that we will receive the very long overdue ‘yes’ we have all been waiting for.”
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Apologies if this has already been posted:

Learn From ME

Learn from leading ME/CFS researcher Dr Lynette Hodges, Exercise Physiologist

“Post-exertional malaise(PEM) suffered by individuals can last anywhere from 5-20 days following a period of exercise. It is really important for those with ME/CFS to pace themselves and take plenty of recovery time. My research has demonstrated that a little exercise every three days could benefit those with ME/CFS, when done within their limits.”

You can read more about Dr Hodges research at https://m.e.awareness.nz/research/#MasseyUni
 
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