News from Aotearoa/New Zealand and the Pacific Islands

Thanks Ravn. Sorry for the effort required to respond to my question.
I find it so hard saying "listen to us, this is a real illness" and then not being able to describe what's going wrong, nor quality research to show it.
I will improve the references used in the next letter! Thanks for the guidance.

 

Stuff: Mothers' devastation as daughters develop the same debilitating illness that can mean years in bed

quotes:

They are known as the “millions missing” – missing from their homes, the workforce, society and even their own families. Kristie Boland speaks to some of the silent sufferers of chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME), including two mums and their daughters.

...


Tate says there hasn’t been enough research to determine whether ME/CFS could be genetic.

“What we’re seeing is the body’s response to a stress... is leading to post-stresser disease syndromes,” Tate said.

A survey found there is a genetic susceptibility component to the illness.

“Genetic susceptibility [could be] one factor, personal medical history, life experience and what’s gone on in your environment is another. It could be a combination.”


https://www.stuff.co.nz/national/he...bilitating-illness-that-can-mean-years-in-bed

 

Just to bump this

There's been a bit of activity going on with people putting forward ideas and commenting. In the comments, others are telling their personal stories of being failed by the system, which underlines the importance of putting some of the improvement ideas into practice (even if some of the ideas aren't perfectly formulated yet, the important thing is they all demonstrate pwME are being failed badly). Just need to make someone with the power to do so take notice (and action!)

There are quite a few relevant proposals under the "The future of the health system" tag. The one by CCIS called "ME/CFS & Long COVID Support in New Zealand" has a lot of comments including one by ANZMES. This idea+thread of comments - and the others - can be used by ANZMES to support their parliamentary petition to reclassify ME as a disability. So the more constructive, thoughtful comments and high star ratings the better. If you are a Kiwi and you haven't already, please consider adding yours (registration required but it's relatively low hassle)

Other ideas worth a look include (I may have missed some)

• National postinfectious illness telehealth 4 ME/CFS, Long Covid & related illnesses
• Educate GPs, Emergency Docs, and Neurologists on Myalgic Encephalomyelitis
• Improved training of health professionals in ME/Long Covid
• Updated training in ME/CFS for health professionals.
• Needs assessed disability assessment
• 20,000+ People in NZ have M.E/CFS with NO Medical Specialist

All here: https://tatou.health.govt.nz/the-future-of-the-health-system#idea-count-container

There are also some relevant suggestions under the "Achieving pae ora healthy futures" tag

• CFS treatment options
• recognise CFS as a DISABILITY
• Set up long covid clinics

All here: https://tatou.health.govt.nz/achieving-pae-ora-healthy-future#idea-count-container

 

Looks like health professionals need to sign up for this, doesn't look to be publicly available.

https://anzmes.org.nz/new-cme-accredited-series-for-health-professionals/

 

Deadline soon for anyone still wanting to comment on or rate proposals

From an email: "Discussions on Tātou about pae ora and our journey to better health will finish by 30 April. If you would like to share your thoughts and ideas, please make sure you do it before then."

The Pae Ora forum contains a few suggestions relevant to ME including this new one which, while expressing a genuine need for better care for all people with a variety of invisible illnesses, rather muddles things up as some of the illnesses listed do have specialists - albeit often without realistic access to said specialists - while others don't have specialists full stop, accessible or otherwise (these are the listed illnesses: "...eg chronic fatigue syndrome, ehlers danlos syndromes, anxiety, depression and many more...").

https://tatou.health.govt.nz/achiev...isible-illnesses-and-disabilities-specialists

I don't know - the email is not clear - if the 30 April deadline above also applies to the other forum "The future of the health system" which has most of the suggestions relevant to ME, including those from CCIS & ANZMES.

 

Select Committee Submitters List, Week Commencing 1 May 2023
Tuesday, 2 May 2023, 4:42 pm
Press Release: NZ House of Representatives

https://www.scoop.co.nz/stories/PO2...ubmitters-list-week-commencing-1-may-2023.htm

 

A strong oral submission by ANZMES (starts at 39:20).

Just a pity the health officials got speaking time afterwards allowing them to list all the services pwME are theorectically entitled to without acknowledging that in reality this isn't happening on the ground, as pointed out repeatedly by Fiona for ANZMES. Hopefully the select committee members saw through that
Haven't been able to find the video outside of FB

Code:

https://www.facebook.com/hescnz/videos/1872174863153510

 

Transcript of the ANZMES section of the video (not including the submissions by the health officials).

Plus a list of points ANZMES didn't get to make orally due to time constraints (but that were presumably included in their written submission).
The points ANZMES chose to emphasise in the oral submission look to have been a preemptive response to some evasive statements made by Whaikaha (ministry for disabled people) and the Ministry of Health in their respective prior written submissions, and duly repeated in their oral submissions.

Here's hoping this strategy made it easy for the MPs to see through the empty waffle especially by the Ministry of Health rep. My impression, based on the questions asked, was that a few of the MPs did see through it. Unfortunately our likely future health minister Reti looked decidedly disengaged throughout

https://anzmes.org.nz/anzmes-speaks-to-parliament/

 

I can't access this article in New Zealand Doctor, but it cannot be anything good:

Lightning Process: ‘Rewiring the brain’

It seems to be about the Goodfellow Symposium that @SNT Gatchaman posted about earlier in this thread: News from Aotearoa/New Zealand and the Pacific Islands

 

Yes - won't be good, though I can't read the article either. The other not good thing today was the Minister of Health's interview on Nine to Noon. From 25'50".

Transcript —

Kathryn Ryan (interviewer): Long Covid - Australians had a parliamentary enquiry there. It's found a figure of between 2 and 20%, which is quite a range [AV laughs] of Australians infected with long COVID... or have developed long COVID; but the rule of thumb that people are working to is around 10%. $50 million injection of funding on research - meanwhile Anna Brooks here is crowd-funding for her research. Where are we at with gathering data and having a plan to deal with this nasty hangover for so many people?

Ayesha Verrall (Minister of Health): So we have guidelines for people to access care through primary care for long COVID. I don't believe there is... uh... I think only in a minority of people with long COVID would there be a need for... for more than that, because fundamentally this is a question of... you know... moderating your exertion til you get [overtalk] better.

KR: It's a question of you're essentially ending up with ME because you've got an over-fired immune response.

AV: Yep, that's right. In some...

KR: And that research is being done by brilliant researchers here in New Zealand [overtalk] we could be funding them.

AV: Yes look I used to be a health researcher. I am not going to get into a situation of having political pressure put on me around one person's research project ever. So those projects can go to the HRC and be assessed by a committee of other experts to see if they make the grade, in terms of an important public health problem, that has good methods presented in order to be funded.

KR: Warren Tate is who I was referring to with respect to the ME overlap. So OK I've been unfair naming names here. What I'm asking you is: as a health minister, are you open to the sort of investigation the parliament in Australia has just done over whether we could be - not only researching - but offering services better: one-stop shop services for example?

AV: Umm sure I am open to that but I think umm uhh I mean uh... it'll be interesting to see what that Australian umm investigation turned up. Umm I'm not sure if a range of between 2 and 20% [laughs] is a particularly helpful basis for public health action.

 

Trying to describe the health minister's response. Looking for a term that signifies more lame than lame. Sigh

 

When the number of NZ infections is 2,336,352 (per Worldometer today) and let's say for argument that 2 million are first and only infections (allowing some give and take for repeats, and infections not recorded). Then a floor estimate of LC of 2% is —

40,000

Each of those people will have 1 or 2 family members secondarily impacted doing the support that the health system is not doing; with multiplied impacts on employment and education, earning and expenditure.

So Minister: how many New Zealanders do you consider would be a helpful basis for public health action?