News from Aotearoa/New Zealand and the Pacific Islands

If anyone is in touch with the patient Simone, or Kate Waterworth, or whoever organised that item on the Panel, I used that clip in advocacy with WINZ ( NZ govt social welfare agency). It was received well and seemed to make a difference with the staff's willingness to understand.
 
Helpful piece on the TVNZ 6 o'clock news, with accompanying article.

https://www.1news.co.nz/2022/09/25/chronic-fatigue-syndrome-i-lost-my-thirties-to-this-illness/

Have to say I don't hold high hopes for the petition (but hope to be proven wrong). The last few words in the article is why
Minister Poto Williams told 1News in a statement that their report has been received, and now sits with the newly set up Ministry of Disability Issues, Whaikaha.

She says, "Whaikaha is responsible for the delivery and transformation of most Disability Support Services (DSS), previously funded through the Ministry of Health. The recent appointment of a permanent Chief Executive will Whaikaha to develop and progress a long-term cross-government policy work programme, which will tackle key issues such as eligibility for DSS. The timeframe for this is still to be determined and any changes to eligibility will require additional investment."
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Adding to @Ravn's post above on the TVNZ piece. Super impressed not even one ‘chronic fatigue’. Like wow.
mins.

Here it is on youtube, hopefully you can all see it. Don’t suppose youtube vids are geo-blocked but I’m a total Luddite so wouldn’t have a clue!




Edited to add, have not read the article. Not sure if "chronic fatigue" has been mentioned there, just wasn't included in the piece that wen to air.
 
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From the Health Quality and Safety Commission, wanting ideas for questions for the National Patient Experience Survey and feedback on the current survey.

Tēnā koe

The Health Quality & Safety Commission (the Commission) invites you to help us identify and prioritise new topics for the national patient experience survey programme. Evidence shows that patient experience is a good indicator of the quality of health services. Survey feedback is expected to guide quality improvement activity for health services and to provide measures of performance regionally and nationally.

The Commission regularly conducts two national surveys to collect, measure and use patient experience information:

· The adult hospital inpatient experience survey gathers information about the experience of care received in Aotearoa New Zealand's public hospitals.
· The adult primary care patient experience survey gathers information about patients' experiences in primary care and how their overall care is managed between their general practice and other parts of the health system.

The Commission has received additional budget to expand the survey programme over the next four years. This involves developing new patient experience surveys.Alongside this process, the Commission is also reviewing the content of the adult hospital inpatient and primary care patient experience surveys to ensure they continue to capture relevant information.

More information on the current patient experience survey programme is available here: https://www.hqsc.govt.nz/our-data/patient-experience/

To nominate new survey topics, please complete the topic nomination form.
If you wish to provide feedback on the current surveys, please complete the feedback forms

Please submit your completed forms by Friday 14 October 2022.
Please forward this invitation to anyone in your networks who might be interested.
Thank you in advance for your valuable time and feedback. If you have any questions, please contact Joanna.Swanson@hqsc.govt.nz or me (Catherine.Gerard@hqsc.govt.nz).
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50 minute talk (masked) by Dr Anna Brooks on LC and ME, with audience Q&A. A few quotes from the first portion.

"All postviral illnesses... post-infectious illnesses are absolutely real, they're absolutely physiologically caused and there's huge demand and huge urgency to understand why these illnesses happen."

"Of course being sick ... is going to trigger those feelings as well as psychological elements, but that is secondary to your illness - it is not the cause of your illness."

On the severity of fatigue and PEM: "I very much doubt here tonight there is anyone here with these symptoms, because they could not be in this room. So many people with this condition are now shut away from society."

On the spectrum of disease severity: "There are many among us that you would never know have this illness because they go to work, they do their job and they function to their best ability, and they recover over the weekends."

"So we are sort of hypothesising that the two things that underpin the ongoing chronic illness is the fact that you've had widespread vascular... blood vessel... damage and your immune system has been disrupted."

"Another area of neglect is that we walk around with latent viruses. ... These latent viruses could be re-awakened. ... We don't have decent clinical tools to categorically say that."

Smart Talk - Dr Anna Brooks on the looming crisis of Long Covid
 
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Subtropical Island said:
NZ has a long history in shoestring research in other fields than medicine coming up with useful results.
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I would also comment that often we imagine that large countries with big budgets hold the monopoly on the best research. Sometimes it just comes down to the particular researcher, their interests and the random walk of their career path. Sometimes that person lives in a country like NZ.

For example, Anna Brooks at the University of Auckland is trained in analysing the T cell responses particularly relevant to Covid/LC (and probably ME). She also happens to have a top line 5-laser spectral flow cytometer (don't ask me - it sounds like a good one tho). What we lack :banghead: is government funding, so we're forced to crowd-fund her work, which could be pivotal in this space. To date there has been zero NZ government/HRC funding of biomedical research in long COVID.
 
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SNT Gatchaman said:
What we lack :banghead: is government funding, so we're forced to crowd-fund her work, which could be pivotal in this space. To date there has been zero NZ government/HRC funding of biomedical research in long COVID.
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Something that could help is the National Ethics Advisory Committee's 'Ethical guidance for a Pandemic'. NEAC is currently calling for submissions on the draft. The deadline keeps shifting further out each time I look, it's now 1 November 2022. There is mention of Long Covid, but much more could be said about how common post-infection (fatigue) syndromes are after infections and the current lack of support for people with them in New Zealand, the lack of any treatments, the lack of even one decent specialist and the ongoing stigma.

There's the issue that people who contract an infection that leads to a chronic condition get good financial support under ACC, but only if they can prove that they definitely contracted the infection at work. That leaves anyone who contracted an infection after it becomes common in the community unable to show that they didn't catch it at the supermarket. It leaves someone who caught the infection from a spouse who became infected at work also ineligible.

So, this is an opportunity to point out issues around a lack of fairness in how Long Covid and ME/CFS are treated. It could help change attitudes about research funding.
 
Good article in the Spinoff, written by a pwME. Quite a long read.
In my and others’ experience, having a number of long-Covid specialised nurses would be much more sensible and efficient, both for the healthcare system and for patients with very limited energy (and income). For instance, our nurse at MECFS Canterbury is able to advise on pacing, mobility aids, advocacy, welfare access, community support and more, all with understanding of the unique challenges long-haulers face. Because there are no approved medications or clinical treatments for ME/CFS and long Covid, support, education and advice around management of the condition are the best chance to improve people’s outcomes.

In-home care is also much needed. “You don’t need research or a fancy clinic to provide help to patients now,” says long-hauler Lauren, who is part of my ME/CFS support group. “Funding able bodies for housework, cooking, getting around the home, errands… so we can rest … should be a very easy way to provide care now.” Like all long-haulers, Lauren often struggles with completing essential tasks of daily living, “and without that extra help you don’t always have the option to rest, even when you need to”. If ME/CFS was reclassified as a disability this would give access to home care, and reduce the frequency of debilitating relapses, or “crashes”.
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https://thespinoff.co.nz/society/25-10-2022/if-you-get-long-covid-whos-going-to-help
 
Hutan said:
Something that could help is the National Ethics Advisory Committee's 'Ethical guidance for a Pandemic'. NEAC is currently calling for submissions on the draft.
[...]
So, this is an opportunity to point out issues around a lack of fairness in how Long Covid and ME/CFS are treated.
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Hope to be wrong but this looks more like a tick box exercise designed to confirm the draft document as the consulted-upon final version with maybe some minor cosmetic changes. So I doubt it'll make any difference but an official submission has been made. At least they can't say they didn't know.
 
Sly Saint said:
ME/CFS reclassification petition to be read in Parliament - ANZMES

full post here
http://www.voxy.co.nz/health/5/406995
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The petition has now been referred to the Health Committee and ANZMES' submission documents can be downloaded here:

https://www.parliament.nz/en/pb/sc/submissions-and-advice/all?custom=PET_125649

Looks like the Tourette syndrome people had a similar petition going last year, asking to be reclassified as a disability. The response they got was along the lines of Yes we understand you're disabled and it's horrible but we're not going to do anything about it for the time being though maybe, possibly, perhaps at some unspecified time in the future we may conceivably consider the possibility of having another look provided we have more money to play with then... I rather fear ANZMES are going to get the same response. Hope to be wrong. ANZMES provided a lot more evidence in their submission than the Tourette's people did. Maybe that will make a difference.

https://www.parliament.nz/en/pb/pet...f-tourettes-association-new-zealand-recognise
 
There's a lot that is great in that submission, even just the fact that one was made, but also a lot that makes me want to go 'arghh!'. ANZMES is asking for $5 million/annum so that it can support patients and educate health professionals - and this is the description of 'Post Exertion Malaise' that it gives in at least a couple of places in the submission:
The most defining feature of ME/CFS and LC is Post Exertion Malaise, which means that the ability to exert energy is limited due to malfunction of energy production, and the consequences are long periods of rest.
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PEM does not mean 'the ability to exert energy is limited due to malfunction of energy production', and describing the consequences (of what?) as 'long periods of rest', well, words fail me. Just to remind non-NZ members - this is New Zealand's only national ME/CFS charity describing the core symptom of ME/CFS in a crucial submission.

This was another 'aarghh!' moment:

Screen Shot 2022-10-31 at 9.38.21 pm.png

If that is ME/CFS in 'New Zealand (NZ)', then the world's population of ME/CFS sufferers will be applying to immigrate, because it looks like a damn good time. Beer at the pub with a multicultural selection of happy friends and a small fluffy dog followed by 'long periods of rest' - sounds like an illness I'd like to have.

I appreciate the intent of whoever wrote this document, I really do. But why didn't they consult with knowledgeable patients? Given my experience with many of the people in ANZMES, the harmful attitudes Dr Vallings holds, and the level of understanding of the illness displayed in the submission, having ANZMES running anything would be a very mixed blessing. There's a lot of talk of holistic multi-disciplinary teams in the submission - perhaps there will be gargling workshops?
 
ANZMES are members of World ME Alliance who state
"Everyone with ME experiences post-exertional malaise"

Their description of PEM on their website says
All recent diagnostic criteria include post-exertional malaise as a defining feature of ME. This is a global increase in symptoms following any type of exertion, including physical exercise, cognitive exertion (concentration), and emotional exertion such as stress. This reaction to exertion is often delayed by 24-48 hours, and can sometimes lead to a permanent worsening of the person’s condition – known as a relapse.
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it also says
Different countries have different approaches to treating ME, so take a look at our members page to see if an organisation in your country can provide more information.
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https://worldmealliance.org/what-is-me/

if this alliance is to mean anything, particularly as their main goal seems to be 'engaging' with the WHO, shouldn't they first at least try and agree on a standard description of the 'defining feature of ME' and use it.
 
Not up to reading the submission atm so can't comment on content. Disappointing to see the poor PEM definition and that misguided picture. I wish ANZMES would consult more outside their immediate inner circle, even just for the benefit of a fresh pair of eyeballs to pick up on those simple to fix things and help produce the most compelling submission possible.

Just going by the number of pages somebody clearly did a shitload of work on that submission. But often when you've worked intensely on something your brain gets sort of stuck and you can't see your output clearly anymore, let alone any better alternatives. To break through the block you either have to take a long break or get some outside feedback. And I mean outside outside, as in somebody with genuinely fresh eyes and who's prepared to tell it straight. Can be uncomfortable but almost always improves the final result. In the end we all want ANZMES to be as effective an organisation as possible and we all want this petition to succeed.
 
First session tomorrow 3 Nov. Don't know if you have to be a medical professional to register.

Speakers Nov 3: Tate, Brooks, Dalziel, Vallings, Scheffer

Speakers Nov 8: Jeffreys, Pearce, Hodges, Clifton-Smith, Mepham
Long COVID event for medical professionals

Are you a GP, nurse, or allied health professional?

Do you want to learn more about Long COVID diagnosis and treatment?

Then join us for this free recorded online interactive event!

Our goal is to offer insight into the emerging situation with Long COVID, highlight what current research is showing in terms of links to ME/CFS, and provide education around symptom management – providing practical tools you can use and prescribe in your clinics or medical practice.

This course is CME endorsed! Allied health can apply for CPD hours too!

There is a shortage of evidence based information available to healthcare professionals or the general public about Long COVID and ANZMES has created this event in order to address this. GP’s and patients get in touch with ANZMES asking for up to date information about Long COVID and its relationship to ME/CFS and evidence based management. This event provides an overview of the appropriate tools and techniques that health professionals can add to your toolkit and prescribe easily to help manage symptoms; guest speakers will help bring health professionals up to date with this evidence-based knowledge.

Spread out over two evenings, this event is packed full of useful, interesting, and interactive sessions. It is designed so that you can learn directly from GPs, researchers, and clinicians and interact with your colleagues in break out rooms as you discuss case studies, and ask those burning questions during Question and Answer sessions with our guest speakers.

When? 7pm on Thursday 3rd November 2022 and 7pm Tuesday 8th November 2022

Where? Zoom.

How to register: Fill out this form to register for the event
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More at link, including speaker bios.
https://anzmes.org.nz/long-covid-event/
 
Hutan said:
Something that could help is the National Ethics Advisory Committee's 'Ethical guidance for a Pandemic'. NEAC is currently calling for submissions on the draft.
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Ravn said:
Hope to be wrong but this looks more like a tick box exercise designed to confirm the draft document as the consulted-upon final version with maybe some minor cosmetic changes. So I doubt it'll make any difference but an official submission has been made. At least they can't say they didn't know.
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:) My submission on that draft filled up nearly 50 pages.

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.

The knowledge and confidence I have gained on the forum helped me to be seen as a suitable candidate. The forum also helped when it came to finding referees - I'm very thankful for that support.

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.

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. I've mentioned the registry on the forum before - I encourage those of our New Zealand members here who might be able to take on part-time work to sign up to the registry. There's no obligation to apply for a role but you will be notified of relevant opportunities and offered assistance with things like CV preparation.
 
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