News from Aotearoa/New Zealand and the Pacific Islands

Dolphin said:
New research using anonymised government records in Stats NZ’s Integrated Data Infrastructure reveals what life is like for people with ME/CFS [in New Zealand].

https://www.odt.co.nz/the-star/study-provides-data-life-me

"study is now under peer review at BMC Public Health"
Click to expand...
In the past year, 18.8% had visited an emergency department, compared with 12.8% of the general population, and 32.8% had been dispensed 10 or more medications, compared with 14.2%.

The study also hinted at diagnostic inequity because Māori and Pasifika were under-represented.

"It is certainly not consistent with the general trends of benefit use in the population.

"So a low percent of Māori, low percent of Pasifika in this ME group on a benefit is very different to the distribution of ethnicity among that other benefit group.

"There is some evidence around access and equities of access to diagnosis."

Long-term data on employment, unemployment and benefit reliance showed how debilitating the condition was, he said.

Only 18.3% of people with ME/CFS were employed, compared with 83.8% of the general population.

Even when looking back one, two or five years, about half of those affected had earned no labour-market income in the preceding five years.
Click to expand...
 
Dolphin said:
New research using anonymised government records in Stats NZ’s Integrated Data Infrastructure reveals what life is like for people with ME/CFS [in New Zealand].

https://www.odt.co.nz/the-star/study-provides-data-life-me

"study is now under peer review at BMC Public Health"
Click to expand...
Just guessing but could well be the study discussed in this video:

https://www.s4me.info/threads/nz-an...scholarships-starting-2023.33465/#post-566568

There’s some further discussion about the preliminary data presented in the video in that thread
 
Dolphin said:
New research using anonymised government records in Stats NZ’s Integrated Data Infrastructure reveals what life is like for people with ME/CFS [in New Zealand].

https://www.odt.co.nz/the-star/study-provides-data-life-me

"study is now under peer review at BMC Public Health"
Click to expand...
"They are pretty hard for the government to turn a blind eye to."
Click to expand...
Oh, I bet they will. On the strong recommendation of their medical advisers. Because reasons. Penis envy, I think is how it went? Old piss in ancient bottles. Something like that anyway.
 
Saw this on FB. Don’t know anything more about it but looks like Kimberly and Sam are having fun fundraising
”YouTube description” said:
Do-A-Dare for M.E. Episode 1: Can Sam Smith Hold A Tune? The Traitor’s NZ winner Sam Smith joins me on Do-A-Dare for M.E. to help raise money for ME Support NZ, a charity that supports people with ME/CFS and long COVID in New Zealand. Today I’m giving Sam 3 dares to do. He’ll then have to set a price for each dare. If the price for a dare is raised in donations to our GiveALittle page, Kimberly’s Spoons, he’ll then have to do that dare. We have a few questions relating to the dares though: Can Sam Smith hold a tune? Is he allergic to dairy products? How does he feel about supermarkets and black marker pens? Do donate towards a dare go to: www.givealittle.co.nz/fundraiser/kimberlys-spoons
Click to expand...
 
Mel Abbott is excited about her next GP presentation.
“Only a couple of weeks till I present at the GP Conference again! Here is my latest topic. I have written a whole new presentation about how to recognise the emotion patterns behind various chronic illnesses, as well as the latest scientific research to show the link between emotions and illness!
I LOVE presenting at the GP Conference! I have done it about 5 times now and been voted Best Speaker out of 200 speakers TWICE, and was 2nd another time. I LOVE that doctors are so keen to expand their knowledge into the mind-body arena these days. Doctor's referrals are now my 2nd biggest source of clients (behind word of mouth). When doctors and alternative practitioners are working together, we will get the best outcomes for our people!”
IMG_0259.jpeg
 
Two bits of news from Te Herenga Waka – Victoria University of Wellington from Associate Professor Mona Jeffreys and Kahurangi Dey

"HE AHA TE KAUPAPA? WHAT IS THE PURPOSE OF THIS STUDY?

Our aim is to understand how common it is to experience food insecurity in people with

ME/CFS and/or Long Covid, so we can develop ways to address this.

The study will also contribute to the beginnings of a ME/CFS Registry."
Click to expand...

1. ANZMES is funding their research into food security for pwME and pwLC.

People with ME and LC and/or their carers are asked to contribute to their research by doing this survey

Information sheet here: https://vuw.qualtrics.com/CP/File.php?F=F_71UHcJXdDsplsXA

2. They have the approval of the University to start compiling a patient registry for ME/CFS.

Full information on the Count ME patient registry is included in the above information sheet.

You can give your details to the registry without doing the survey.

Sorry I have not been able to attach the links to the survey and registry but if you are a member of the following Facebook Groups: ME/CFS Support Group NZ or M.E. Awareness NZ group - they have the links.

Alternatively you could contact the investigators themselves, their university emails are in the information sheet above.
 
Last edited:
hibiscuswahine said:
2. They have the approval of the University to start compiling a patient registry for ME/CFS.

Full information on the Count ME patient registry is included in the above information sheet.

You can give your details to the registry without doing the survey.

Sorry I have not been able to attach the links to the survey and registry but if you are a member of the following Facebook Groups: ME/CFS Support Group NZ or M.E. Awareness NZ group - they have the links.
Click to expand...
Note that a functional registry happening is by no means a done deal. I imagine it would help if as many NZ pwME as possible register their interest.

I haven’t tried it but I think you could just click through all the food insecurity questions without answering to get to the end of the survey to register your interest in the registry if you’re not interested in the food insecurity thing (though I suspect the researchers would much rather you fill in the lot)

I hope this link works

https://vuw.qualtrics.com/jfe/form/SV_bgD6WsfJE31F4Hk
 
ME Support are gauging feelings on 'brain retraining'. It looks as though proponents of some version of that stuff (e.g. Lightning Process) have been trying to get clients via their Facebook facility.

Message to members on brain retraining,
from Patrick Hadfield

In relation to discussion in the (Facebook) ME/CFS Support Group NZ and ‘Admin’ post - 10 June, 2025

We want to start by acknowledging that the topic of brain retraining has been a source of concern and tension for some of our members, both recently and in the past. We're really sorry that some of these conversations have left people feeling unheard or upset. This was not our intention at all and we apologise for any upset to members this process has caused. The ME Support Board is listening, and we’re very aware of the strong feelings and diverse opinions around this issue, especially in our Facebook community and wider membership.

For those unfamiliar with the term, brain retraining refers to programmes that aim to shift how the brain responds to stress and perceived threats, drawing on ideas around the nervous system and neuroplasticity. “Brain retraining” could include a range of approaches from Cognitive Behavioural Therapy (CBT) and mindfulness to overall programs like the Lightning Process.

Just to clarify where ME Support stands:
  • ME/CFS and Long COVID are biomedical illnesses.
  • We recommend following the NICE guidelines (2021), as a first step.
  • We don’t endorse formal brain retraining programmes like the Lightning Process. We don’t consider them to be curative and advise against them.
That said, we know some people have found various strategies, including elements of brain retraining, helpful in their personal journey, even if those strategies sit outside current NICE recommendations. We believe it’s important for members to have access to a range of perspectives, while also being aware of the potential risks, costs, and different outcomes people have experienced.

We’d like to explore how we can support respectful, balanced discussions around these kinds of approaches. Any such conversations would need to be carefully moderated and follow our community guidelines to ensure everyone feels safe and respected.

We’d love to hear from you
Would you be interested in having a well-moderated space within our Facebook group and support groups to discuss brain retraining, whether that’s specific programmes or individual techniques that can be used in isolation to support wellbeing?

Our Process
To be transparent about how we’re approaching this:
  • A discussion paper on this issue was presented to the Board in April and discussed in depth.
  • We then set up a small subcommittee to develop a clearer outline of ME Support’s position and how this topic might be talked about in our Facebook group and support groups.
  • A draft document has now been created, but it’s still being refined.
  • All the feedback we’ve received so far from members has been passed on to the subcommittee.
  • Before anything is finalised, we want to hear directly from more of you both ME Support members and those in our Facebook group, about whether and how you’d like this topic to be discussed in these spaces.
Your feedback will help shape the final version of the position and communication document, which will be signed off by the Board and shared with everyone.

At the same time, we’ve already been working on updated guidelines to help us better moderate all discussions in the Facebook group. These will include clearer roles and responsibilities for admins, group rules, and expectations for how members engage with one another.
Click to expand...

You can share your thoughts through this short member survey:
Click here to have your say
Click to expand...

You don't have to be a member of ME Support to complete their survey.
 
Deanne NZ said:
Disappointing that they are even considering this.
Click to expand...
Yes, that was my initial reaction. However, I imagine some proponents of these therapies are insistent and creative in the way they promote them e.g. on the organisation's Facebook page. If the majority of stakeholders indicate that they don't want the therapies promoted, it would make it easier for the ME Support committee to make very clear rules. Politically, it might be a good way to deal with the issue. But, only if there are plenty of replies expressing concern about the therapies. I imagine the brain retraining proponents will be mobilising their supporters.

In the survey, it is not specified if the CBT is aimed at changing false illness beliefs or beliefs that might make it hard to adjust to having ME/CFS e.g. 'I don't need help' or 'my worth as a person is measured by how big my salary is' i.e. curative CBT versus supportive CBT. There is space to make comments - survey respondents might like to clarify their rating of CBT there. I think in most cases, a good GP and a good support group can make supportive CBT unnecessary.
 
Last edited:
Hutan said:
ME Support are gauging feelings on 'brain retraining'. It looks as though proponents of some version of that stuff (e.g. Lightning Process) have been trying to get clients via their Facebook facility.





You don't have to be a member of ME Support to complete their survey.
Click to expand...

If they're going to start promoting brain retraining, are they going to do the same for all the other unevidenced treatments backed by enthusiastic anecdotes? Why would you lower your standards for one but not others?
 
You must log in or register to reply here.
Back
Top Bottom