News from Aotearoa/New Zealand and the Pacific Islands

Hutan said:
I've just received word that I've been appointed as a member of this committee, the National Advisory Committee on Health and Disability Ethics. The 'Ethical guidance for a Pandemic' document that is being prepared is one project. There's also responsibility for overseeing the process of ethics approvals of health and disability research, and many other issues to be addressed.
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Brilliant news Hutan!

Looks like I was wrong about my assessment that this submission process was a tick box exercise. Tbh, when I was writing my much shorter submission and encouraging (ok, badgering) others to do the same I thought it was pretty much a waste of time, apart from getting a few points on the official record for some investigative journalist to find in the distant future. Though I also figured there's always the tiniest off-chance somebody with the power to do something takes notice, especially if several submissions come in making similar points. Especially if one of those is a well-argued 50 pages long!
Hutan said:
If you have some spare capacity, do consider seeking out similar opportunities in your own countries or states. Our experience is relevant beyond just ME/CFS, we know things that can make systems and research better and fairer. A position on a government committee usually involves mostly online engagement, and a fairly low amount of required core hours, with the ability to work on specific projects if capacity allows. So, the roles can be compatible with the capabilities of those of us able to work a little if most of the work can be done from home. Having people with ME/CFS in these kinds of roles is one way to help change the experience of people currently disadvantaged in health and welfare systems, and to change the perception of people with ME/CFS.
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Couldn't agree more. Unfortunately, for the more severely affected, we're often doomed by Zoom. Ironically the pandemic may have made things worse in that respect. A lot of people now seem to think of Zoom as the solution to all accessibility issues.

For example, prior to the recent health system reforms, I tried to insert myself onto my then local health authority's community & patient advisory board. They were keen initially (don't think they got many volunteers tbh), and very understanding and accommodating of the fact that I wouldn't be able to attend meetings in person. But when I explained I wouldn't be able to participate in Zoom meetings either, they couldn't get their heads around that at all. I suggested some workarounds but those must have been deemed beyond "reasonable accommodations".
Hutan said:
Here in New Zealand, the Ministry of Disabled People operates a registry of people seeking government roles. The lovely staff there work very actively to get disabled people into decision-making and advisory roles.
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Is this what you're referring to?
Ministry of Disabled People said:
There are a number of positions within Whaikaha - Ministry of Disabled People where people can guide change by, with, and for the disability community. This work can be undertaken across the following categories.
  • Partnering: Whaikaha will create partnership relationships with disabled people, families and tāngata whaikaha Māori me o rātou whānau, Māori
  • Voice: Whaikaha will seek and listen to views of the disability community, which will guide the work.
  • Te Tiriti: Whaikaha will give effect to the articles of Te Tiriti in the work of organisation.
  • Leadership/Stewardship of Disability across Government: Whaikaha will provide guidance, advice and strategic policy support related to disability, accessibility and equity for all disability population groups. Whaikaha has a specific responsibility for policy leadership for tāngata whaikaha Māori me o rātou whānau
  • Enabling Person-Directed support: Whaikaha will plan and act on transformation of the disability support system. This includes using the Enabling Good Lives model across the country so disabled people direct their support.
  • Performance and Governance: Whaikaha will provide administration for its partnership groups and keep track of how well it is doing its work.
  • Listening, Insights and Learning: Whaikaha will provide monitoring, evaluation, analysis and learning related to disability. It will also generate disability and Te Tiriti based research and learning, and take care of data related to disability.
  • Building Capability and Capacity: Whaikaha will grow capability and capacity of the disability community to engage with the whole government system. It will also have workforce development programmes for its own staff and the disability support workforce.
You can set up an account through the ‘Join Talent Community’ tab at the top of the page which will result in you receiving notifications of any new job postings. Alternatively, use the search boxes below to find positions that may interest you.
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https://jobs.msd.govt.nz/go/Whaikaha/9001500/
 
Ravn said:
Is this what you're referring to?
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Here's the link - it wasn't super easy to find:

Expressions of Interest for the Office for Disability Issue's Nominations Database
The Government wants to increase the membership diversity of governance and advisory groups. As part of the Office for Disability Issue's role to help facilitate effective working relationships between disabled people, the disability sector and government agencies, it has set up this nominations database to further this aim.

It is important for disabled people to be represented on governance and advisory groups, including State sector boards and committees, to provide a disability perspective. Boards work best when there is diversity of skills, expertise, backgrounds, perspectives and ways of thinking around the table. The ODI is often asked by appointing agencies to nominate disabled people for governance and advisory positions, as part of its work in the sector and has set up this Expressions of Interest Database to gather information to identify possible suitable candidates.
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Tom Kindlon said:
Emeritus Professor Warren Talks gives a talk at the ANZMES 42nd Annual General Meeting on Saturday 19th November 2022 about his latest research into ME/CFS and Long COVID.
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Anyone know any more about this?
On the face of it this sounds like something some of our members could consider contributing an article to[ETA: the topic being research methodology in ME/CFS]?
transcript of Tate video said:
9:13
interview earlier in the week and then just to show the interest last night I
9:18
received a request from a Nobel Prize winner who was editing uh volumes of a a
9:27
series um on methodology used to study uh
9:33
diseases and other things and they're planning a
9:39
um a volume on exclusively on mecfs and I was asked if I would edit that so
9:45
that's a task which I'll pick up uh for next year so that shows you there's so
9:51
much more interest so that's a real positive thing in terms of the research
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Not encouraging...
transcript of Tate video said:
14:05
you know I had hoped that mecfs would be a role model post-viral syndrome for
14:11
long covert and be recognized in government programs I would say so far it's been at best lukewarm certainly
14:19
when I found out who in the ministry our ministry who was going to be overseeing
14:24
the development of a long covert problem I contacted that person and talked to
14:30
them about mecfs and the importance of actually having that LinkedIn and I have
14:35
to say you know I haven't got any commitments or you know I don't feel
14:41
there's a high degree of interest in doing that so I hope that will change I had another experience where I talked
14:47
at a a National Finance conference and they they wanted me to talk on the
14:54
financial impact of long covert for the financial system and I started I was in
14:59
the session the first of to talk and I started off by saying that long covert
15:04
is not a new disease it's a classic or contains within the patient group a
15:10
classic post-viral syndrome the difference is that there are so many cases of covert that there are so many
15:17
cases of this that it's the incidence of it is so much more and the next speaker
15:23
was the head of a with the CEO of a crown research entity which has been
15:30
involved in the covert thing and he got up and challenged my view that long
15:37
covert wasn't a new disease so there's kind of you know continuing work to be
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Uh-oh...
transcript of Tate video said:
43:05
and I want to just finish the talk by talking about an interaction that I had
43:12
with an me CFS patient recently who wanted me to tell me of her experience
43:18
and and and wanted me to tell people about it um you know to spread because it might
43:25
have been able to help other people so this was a patient who has headed me
43:32
for a while and was pretty unwell late last year and so someone gave her a book
43:37
and the book was by a woman called Annie Hopper and the the title was wired for
43:44
healing and so she read this and this woman has
43:50
developed a program called Dynamic neural retraining system and I'll give
43:56
you a little bit of the background in a minute and so the New Zealand patient
44:02
um uh could access this online and and so she started this program and
44:11
she said incrementally just a little bit at a time over the time that she
44:17
contacted me which was about nine or ten months after you know she was in a bad State she said there's been incremental
44:24
Improvement in her um in her energy and her symptoms and now
44:31
when she Compares how she's feeling to what she was feeling before it's quite an amazing difference so when I hear
44:37
something like this I'm naturally a bit skeptical as a as a scientist but she
44:44
asked me do you know of this person did you know the book and I said no I haven't I haven't heard of this so I
44:50
went on to the internet and I found this was a really interesting story any Hopper was a person that her stress

[...]
[ANZMES president]
49:55
great thank you Warren we do appreciate that and I just wanted to make a note about that final
50:01
um wired healing that Dr Ali Stein who's the Canadian psychiatrist that um Roz
50:06
has had some dealings with as well um she created the course Pathways to Improvement that ansme's reviewed and
50:13
during that course she has also suggested that neuroplasticity is
50:19
um can create some changes to to the limbic system and that the dnrs program
50:25
in Australia is one worth looking into for those that are interested in that
50:31
um so that's just a little bit on that Warren [Tate interjects] um I I went into this totally blind and you
50:40
know I was a bit reluctant to talk about it too much because you know there may
50:46
have been some negative things around it but you've kind of given me yeah [ANZMES president again] it's um
50:52
it's basically they think that the The Sciences sound for dnrs and that yeah
50:58
it's based on neuroplasticity um so I wanted to um thank you Warren
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DNRS discussed here https://www.s4me.info/threads/annie-hoppers-dynamic-neural-retraining-system.918/
 
Ravn said:
DNRS
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That's really disappointing. That's New Zealand's most eminent scientist with any interest in ME/CFS, promoting DNRS; that's people in the national ME/CFS charity promoting DNRS. Warren has promoted reiki in a recorded talk before, and I tried my best to ignore it.

It's like we live in a parallel universe or something. How do smart people believe this stuff? These are all people who mean well, but..

Does anyone else think of a 'Do Not Resuscitate' note, signed by Science when they see DNRS, as in, science is at death's door and has lost the will to live? Ugh, I'm still making exasperated sighing noises. Maybe I need to go watch something on Netflix.
 
That is so disappointing to hear of Tate being taken in by quacks and being used by them to give them advertising.
It sounds like it might be something for S4ME NZ members to get together to write to him explaining the lack of scientific backing for these treatments, and the harm he's doing by spreading false info.
 
Special Report: The rising, rippling cost of Covid-19
Jamie Morton, NZ Herald 31/12/22 - paywalled

New Zealand spent the first two years of the pandemic trying to keep out Covid-19, and the third trying to blunt its blow. Now that we’re well and truly living with the coronavirus, what will be the ongoing human cost?

“It’s important to understand that long Covid can impact people at any age, including those previously healthy,” [Dr Anna Brooks] the University of Auckland immunologist explains. “We continue to hear stories of athletes succumbing to long Covid and failing to recover.”

She’s spent much of the last three years trying to unravel the complex causes of a multi-system illness capable of affecting nearly every organ, with no treatment or cure in sight.
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There’s a range of hypotheses. Most involve the immune system going haywire and leaving people with a frighteningly wide spectrum of ongoing symptoms. “We know that it can cause damage to our blood vessels, disrupts our clotting pathways, and impairs our immune system – yet the trajectory of a ‘return to a healthy baseline’ is not yet known,” Brooks says.
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It’s possible that infection can also re-awaken dormant viruses within us that we normally control with a healthy immune system. And any reinfection is a long Covid gamble.
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Long Covid is something the nursing community has only recently begun discussing. “There’s certainly a lot of health professionals I know that have been crippled by long Covid, and some of my friends are still needing specialist care and support.”
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For children, Brooks says there appears to be a lower risk of long Covid, “but certainly not no risk”. “The stories of children having their life on pause due to not recovering are truly heart-breaking.”
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In the US, where as many as one in 13 people are estimated to have had long Covid symptoms, Harvard University researchers calculate the economic blow at US$3.7 trillion ($5.7 trillion).
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In the face of this threat, [Prof Michael Baker] questions why New Zealand no longer appears to have a single, coherent strategy to manage the virus – not least more measures in place to reduce the risk of long Covid.

“This is something critical to our wider social system because, as reinfection can mean running the gauntlet with long Covid, this is going to produce a huge burden of people with significant disabilities.”
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Why don’t we yet have infection prevalence surveys in place, and why aren’t we funding enough long Covid research of our own, or at least doing enough to warn Kiwis about the dangers of reinfection?

Brooks could go on. “In short, no, we are not doing enough.”
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Founding LC Research published today by Te Herenga Waka/Victoria University, Wellington with recommendations for the Ministry of Health.

It is in English and Te Reo Māori.

This is the link for the executive summary looking at the Covid Response and the recommendations for LC in Aotearoa New Zealand

Long Covid is on Page 27-29. Recommends it be made a disability, establish long covid clinics, the importance of lived experience and peer support, full income and disability support.

https://covidaotearoa.com/wp-conten...-Mate-Korona-Executive-Summary-2023-01-24.pdf

There is a lengthy report which includes discussion of ME epidemiology amongst other things. Haven’t read it yet as 138 pages long. One step closer to getting ME recognised as a disability….

https://covidaotearoa.com/wp-conten...kawe-o-Mate-Korona-Full-Report-2023-01-24.pdf

ETA: searched the pdf document - no mention ME, ME/CFS. Post-infection, post viral. Must be hidden in the reference papers…. Still a harrowing read of experiences of pwLC
 
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Some interesting findings on the incidence of long covid and use of health services following above population survey.

Please note: Tangata Whenua means people of the land (the indigenous Māori of Aotearoa) and Tangata Tiriti - people of the treaty (all non Maori).

Possible predictors of long COVID were modelled where there were sufficient data. These compare the odds (risk) of having long COVID or symptoms that persisted beyond three months with people who had symptoms for at least one month but did not have symptoms that persisted for three months or longer.

Pasifika peoples were significantly less likely to develop long COVID than other ethnic groups (OR: 0.15, 95%CI: 0.04 to 0.54); this could be because of a different recognition or attribution of ongoing symptoms, rather than a real difference per se.

There was no meaningful difference in likelihood of developing long COVID by age or gender (Supplementary Table 21).

Associations between pre-existing conditions, and symptoms and markers of COVID-19, adjusted for age, gender and ethnicity, are shown in Supplementary Table 22.

A higher risk of long COVID was seen in people who had pre-existing heart disease (OR: 8.65, 95%CI: 1.29 to 57.86) or high BMI (OR: 2.29, 95%CI: 1.30 to 4.00), with a suggestion of a higher risk among people with allergies (OR: 2.29, 95%CI: 0.90 to 5.82).

A higher risk of long COVID was also seen among people who, in the first month of having COVID-19, reported difficulty breathing (OR: 2.20, 95%CI: 1.31 to 3.70), muscle aches (OR: 2.45, 95%CI: 1.26 to 4.75), a change in taste (OR: 2.09, 95%CI: 1.21 to 3.59) or smell (OR: 2.08, 95%CI: 1.21 to 3.57), chest pain (OR: 1.99, 95%CI: 1.11 to 3.54), dizziness (OR: 1.89, 95%CI: 1.11 to 3.21), tingling (OR: 2.09, 95%CI: 1.13 to 3.89), or brain fog (OR: 2.36, 95%CI: 1.31 to 4.29). This may be due to these symptoms persisting for longer than other symptoms, and hence being classified as long COVID, or it may be that their presence in the early stages of illness does predict long COVID.

There was no association between attending hospital due to COVID-19 and developing long COVID (OR: 1.44, 95%CI: 0.71 to 2.91).

Survey participants reported where they had help and support since first getting COVID-19. Fewer than ten people (for each provider type) reported getting support from their iwi, church, tohunga/elder or other religious organisation, charity, Whānau Ora provider, ACC, Māori health and social services provider, Pasifika health and social services provider. The proportions of people who got support from other providers is shown in Table 22. Most participants reported informal help from their whānau, families, friends and neighbours. About half of participants with long COVID reported getting help or support from their GP, public health units and a smaller proportion from a nurse. Employers were also a reported source of help and support.

The use of health services by people with long COVID was significant. About one in six people with long COVID had seen their GP four or more times because of COVID-19 symptoms or ongoing impacts (Tāngata Whenua, n=4 (12%); Tāngata Tiriti, n=33 (18%)). These visits do not come at a negligible cost; 12% of people with long COVID (Tāngata Whenua, n=4 (22%); Tāngata Tiriti, n=11 (10%)) reported experiencing a time they needed to see a doctor because of COVID-19 or long COVID but did not because they couldn’t afford it.
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Media reporting on LC study….Prof Taite comments (no mention of ME despite him researching ME and LC metabolomics etc). Unfortunately (or unsurprisingly) the epidemiological study (with qualitative interviews) - with a result finding 1 in 5 kiwis (400,000) have long covid is disputed by the Minister of Covid Response/MOH on both main television channels. Some acknowledgement that it is disabling but apparently not as much as others and assigning this to the newly created disability ministry and it’s election year…..

https://www.newshub.co.nz/home/new-...19.html?utm_source=dlvr.it&utm_medium=twitter
 
Survey covered original and delta waves (up to Dec 2021) with 12 months of the study period pre-vaccination. While I doubt that the Omicron wave would extrapolate out to 3-400,000 LC cases, I think the Minister's response is inadequate:

“We know there is hardship for a very small number of people but I think the question that that poses is how does that fare relative to other people with chronic conditions.”
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Ravn said:
Uh-oh...

DNRS discussed here https://www.s4me.info/threads/annie-hoppers-dynamic-neural-retraining-system.918/
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Gutted, I know Dr Vallings has always believed ME is closely linked to stress (well, yes, we all know stress makes our illness worse but it is pretty stressful having ME and no treatments or support from the medical profession - and her stigmatisation has been damaging to the ME community, in my opinion. That is why I largely ignored her work, did read her book, but the evidence base for some of her stuff had been excluded overseas with EBM but she was still touting it. Especially supplementation, so expensive…..and little to no evidence. And she and ANZMES didn’t reject LP and the Switch strongly enough and now look what is happening in our country….

As for Prof Tate, I think he is very much over-estimating neuroplasticity and must be under some pressure for media interviews and causation explanations and apparently now health economics and getting funding for his ME/LC research (and maybe he has given up critical thinking as LP takes hold in other departments. Cynical speculation)

I worked in mental health for 30 years in NZ and watched the stress diathesis model and psychosomatic model develop (BPS) in the 80’s and every other psychiatric and psychological theory, (new one’s being trotted out all the time), each running it’s course and evolving (often not in good ways for ME).

I am afraid to say no one I saw within the mental health service “cured” their psychiatric condition, let alone physical illness eg. ME, FM, POTS and everything else (including aging) - due to neuroplasticity.

No special device/therapy or medication is going to rewire your brain and you will put in a lot of hard work, time and energy for unclear results that could be learnt elsewhere and free. I can’t believe he has fallen for this woo….and so disappointing he is discussing this non-evidenced treatment/verging on quakery with the media.

They are grossly conflating neurobiological and psychology research. It is hopium at work. You can learn some helpful techniques to manage stress and yes, that is a little neuron connecting with another and over time helps with coping with illness… but here we all are, getting more severe.

I feel we are going back to the dark ages of pseudoscience in Ao/NZ when we finally got EBM going in the right direction with NICE. I really want better clinical leadership from ANZMES and looking forward to what further changes the new CEO will have, now they have got the disability petition into parliament and what the new ME clinician is doing for pwME, who has taken over from Dr Vallings now she is formerly retired from clinical practice but is still mentoring Dr Jargese…(who is based in the Waikato and works with a local public physician).

edits for typo’s
 
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