News from Aotearoa/New Zealand and the Pacific Islands

Ravn said:
Yes, clever strategy to not use the term ME/CFS until after you've (hopefully) got readers on your side.

But oh my oh my, sometimes the task of educating our health professionals feels like looking up at Mount Everest and wondering how on earth to get anywhere near the summit, and that without the fitness of a Hillary or Norgay to draw on.
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Slightly blown away to realise that my reaction was that it was an excellent description of some of my own experience …but that I had become so worn down that I completely failed to be outraged. Just glad that someone put those words out there to be heard. I wonder how many people think they helped (to calm some imagined anxiety) when what they really did was leave us speechless.
 
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Lengthy article by Katie Kenny on Stuff.co.nz...

The narrative of Omicron as a 'milder' variant is dangerous, given what we know about long Covid, experts warn

Quotes from:
  • Dr Anna Brooks, a senior lecturer and immunologist at Auckland University
  • Emeritus Professor Warren Tate, biochemist at Otago University
  • Professor Peter McIntyre, an Otago University paediatrician specialising in infectious disease
  • Professor Kurt Krause, biochemistry at Otago University
  • Professor Stuart Dalziel, paediatrician
https://www.stuff.co.nz/national/he...en-what-we-know-about-long-covid-experts-warn
 
New research by Victoria University of Wellington will look into New Zealanders' experiences of Covid-19.

The study, Impacts of Covid-19 in Aotearoa Ngā Kawekawe o Mate Korona, has been funded by the Ministry of Health, at a cost of $1m. It aims to survey people aged 16 and over who have had Covid-19 or were a probable case before 1 December, 2021.

Co-lead of the study Dr Mona Jeffreys said the research includes online surveys and interviews.

She said researchers were interested in hearing about the support people received, the quality of health services, financial impacts, and any long Covid symptoms.
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https://www.rnz.co.nz/news/national/461056/nz-study-on-covid-19-impacts-launched

Jaw-dropping amount of funding in the NZ context. Let's hope they make a decent job of it.

Link to the study's website: https://covidaotearoa.com/
 
The title is just where the problems start. Hawkins manages to trip over a remarkable number of ME/CFS landmines in that one short piece (e.g. I count at least 11 items of misinformation or statements that will mislead in just the two paragraphs copied below). Given that she seems to write for a living, it is likely she will write of her illness again. I hope someone can give her some advice before she does. If she wants to contact me here, I'd be happy to talk to her.

I was diagnosed with mild Chronic Fatigue Syndrome, of which about 18-20,000 New Zealanders suffer from, and is caused by a range of reasons that no one really knows for sure yet. Trauma, physical exertion, over-achieving, genetics, making out with someone regrettable at high school and getting glandular fever, or even worse, no reason at all. Fatigue is a sleuthy beast.

If you have it, you’re tired, unrefreshed by sleep, often low in vitamins that don’t absorb into your body. Physical exercise can make it worse, but so can none at all. You’re cold a lot of the time and feel pain more intensely than most. You get sick often and are advised to be cautious of vaccines. It’s even become an effect of long Covid. I have it mildly and can only imagine how debilitating it can be further along the spectrum.
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RoseE said:
Article by Annabel Hawkins for Ensemble Magazine on her journey with mild Chronic Fatigue Syndrome, published 25th January 2022.
Perhaps an unfortunate title "I’m tired all the time" and lack of clarity on diagnostic criteria, but may resonate with the many people that have mild ME/CFS and are still to be diagnosed.

https://www.ensemblemagazine.co.nz/articles/i-am-tired-all-the-time-chronic-fatigue
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I like her more as the piece goes on. It’s not a good intro to ME/CFS (really not) but it does introduce us to her. And a quick google-stalking provides more context, with a website of creative writing / prose and an instagram account. There’s a real potential here. I hope that she gets both some helpful feedback in skirting the traps in how the illness might be described, but also in how good it is to celebrate the parts of life we can still have, and the wonderful people we can still be. Even as we feel sad about what once was.
Does it end up a bit too vague? “Before my diagnosis, there was a greater mantra that circulated in my head: how much of this is my fault? As though tiredness is a weakness that can be cured by going for a run, eating a piece of fruit or just trying harder. I had to tread softly.” Yes, that’s exactly what you might need to do to fix simple tiredness. I agree with all the critique in the thread above. But I also think the point she might be making is that our illness is full of uncertainties and that sometimes understating it (almost like the claiming of use of the word ‘queer’) can reach people who might simply close their ears to a more strident description.
It’s good to hear from someone at the ‘mild’ end of the spectrum who’s making a good life without climbing mountains.
Maybe I’m just in the mood to hear it. (I’m not sure if she’s succeeded on ME/CFS but as a story written for ‘just amongst ourselves’, it’s a nice read)
 
Webinar - A practical approach to ME/CFS (Chronic Fatigue Syndrome) - Wed 23rd Feb 7-8PM
Dr Cathy Stephenson presents a webinar next week to share a practical approach to understanding, assessing and managing Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).

The session will cover:
  • What we know (and don’t know) about ME/CFS, including some of the myths and pseudoscience that have surrounded it over the years
  • A systematic approach to diagnosis
  • How to support a patient with ME/CFS
  • Resources for patients and whanau
  • Where to go to learn more
More info:
https://myhealthhub.co.nz/myalgic-encephalomyelitis-chronic-fatigue-syndrome/

Intended audience:
All health professionals including GPs, Physicians, Nurses, Allied Health, Pharmacists, Psychologists, Counsellors, Healthcare Assistants.

Live participation is encouraged. However, the session will be recorded and will be available afterwards on https://myhealthhub.co.nz/webinars/ for those unable to watch live.
The My HealthHub webinar series are endorsed by the Royal New Zealand College of General Practitioners (RNZCGP) and 1 CME credit can be claimed.
 
ANZMES are calling for people to join them in advocating for the ME/CFS community
Do you know anyone that has skills, time and energy?

Anzmes is seeking people who would like to join the committee or perhaps a sub committee.
"We are seeking people who will dedicate their time to writing, creating, producing, designing, and delivering materials and projects to fulfil our constitutional goals and ensure we continue to deliver our mission and vision, as the national advisory organisation for ME/CFS."
The close off date for applying is 31st March 2022.

More info in the PDF provided by ANZMES.

Subsequent discussion here New Zealand: ANZMES
 

Attachments

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from the ANZMES pdf said:
Do you have ideas for how we can further the cause to reduce stigma, improve awareness and understanding, and enhance quality-of-life for the ME/CFS community? Apply today!
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Ha, perhaps not have a medical advisor who promotes the idea that there is an ME/CFS personality or that singing in the shower is a useful treatment?
Perhaps not promote courses for people with ME/CFS that have them examine their personality for flaws that can be fixed?
Perhaps not embark on unevidenced crusades that increase the fear people with ME/CFS have of Covid-19 vaccines?
As I've just mentioned on another thread, ANZMES' actions have actually increased stigma, decreased understanding and reduced quality of life for people with ME/CFS in New Zealand. (thread on ANZMES here)

I'm glad that there might now be some recognition of the very poor written materials that have come out of ANZMES and some desire to do better. But, and I speak as someone with a background in governance and in ME/CFS who volunteered to help and was rejected by ANZMES, and who has a family member who gave up being part of the committee, I can't see that they will recruit and retain sensible people while some of the key people continue to have power. Perhaps those people are stepping down?

Further discussion on this is on New Zealand: Covid-19 vaccinations for people with ME/CFS
 
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Even though there've been some noises from our health authorities about long Covid being real, the denial has started.
A company letter sent to Lavender in December 2021 stated: "This is because for a claim to acceptable under the legislation there is a requirement for there to be a specific injury.

"The information contained in the medical reports obtained by your doctors do not confirm that your medical issues are directly caused by Covid-19 and there is no confirmation that there is any actual physical injury that satisfies the legislation for a coverable ACC injury claim."

Lavender believed the company was simply seeking to avoid responsibility.

"Long Covid symptoms play conveniently into their hands, because these can all be caused by a myriad of things and so me having Covid is just seen as a coincidence. They didn't want it on the books.

"They're not even arguing that I didn't get it at work... There were no links in my genome-sequencing to New Zealand, as they were initially trying to say - saying I caught it in the community and I took it to work. When genome sequencing proved I got it in China, they said, 'yeah, okay, but you've got no injury'.
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https://www.rnz.co.nz/news/national...upport-as-air-nz-refuses-cover-to-ex-employee
There's also this long Covid study going on. Somebody on FB reported filling in the questionnaire and there being no questions about PEM. Obviously unconfirmed, I haven't seen the questionnaire myself, but a deflating report nonetheless.

https://www.rnz.co.nz/news/national/461056/nz-study-on-covid-19-impacts-launched
 
For the benefit of those outside NZ, we have the Accident Compensation Corporation that pays compensation to anyone who has an accident. The idea was to stop a situation with costly litigation resulting in unfair outcomes. So, the government is responsible for the compensation, and industries, and I think sports organisations and the like, pay a levy. And that's all good, people who are injured are generally looked after pretty well, with rehabilitation and life accommodations paid for.

But, ACC has traditionally not provided support for people who suffer harm as a result of a disease process. So, you could have a baby affected by some professional mishap during their birth being supported for life, whereas a baby disabled by measles gets no support from ACC. People who are disabled as a result of a disease process get some limited support from the government through social welfare, but it's nothing like the support given for people who have accidents. The words used like compensation versus beneficiary underline the attitudes - with ACC you are receiving something you are owed as compensation whereas in the social welfare system you should feel lucky to get anything. There are some ridiculous outcomes - people who get injured doing really stupid or criminal things get the high quality support, while the person suffering through no fault of their own often gets very little. Of course, people with ME/CFS tend to be lumped in with mental illness, and get the least support of all.

I'm a bit surprised to read in that article that ACC is paying out costs related to Covid infections acquired on the job (including payouts to nine nurses so far) - and not at all surprised that they don't want to know about Long Covid. With Covid, there's certainly some blurring of the lines between harm caused by an accident and harm caused by a disease process here that may bring the unfairness of the current dichotomy into focus.

Early on in the pandemic, I noticed that the advice the Nurses Union (I forget the actual organisation name) was giving to its members about Covid made no mention of Long Covid, and I wrote to them, to try to make them aware that this was an issue that they needed to be acting on. They needed to inform their members, so that they did not take the risk of getting Covid lightly, and they needed to be negotiating arrangements for nurses who ended up with Long Covid as a result of them doing their work. The Nurses Union never replied to me. I hope they have done something. It's a tremendously grey area, but an important one for ME/CFS advocates in NZ to influence.
 
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Ravn said:
NZ Geographic has a lengthy article on long Covid. Nothing new to members here but it's a good piece and ME gets discussed towards the end.

https://www.nzgeo.com/stories/the-known-unknowns/

ANZMES have put some $$$ towards Anna Brooks' research:
https://anzmes.org.nz/anzmes-sponsors-nz-long-covid-me-research/

But also still fundraising here:
https://www.auckland.ac.nz/en/giving/donate/a-z-list-of-funds/long-covid-research-project.html
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Fundraiser for this research: Cycle for ME / CFS
I am aiming to cycle 3,000 kms from the top to the bottom of NZ to raise awareness for ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) - a complex, debilitating and poorly understood post viral condition.

At its most extreme this is a truly awful illness. Over the past few years I’ve watched one of my daughter’s closest friends (and a dear friend of mine) deteriorate to the point that she has now been in hospital for 18 months, in constant severe pain, unable to sit up or roll over, confined to a dark and soundproof hospital bed 24 hours a day.

It has been devastating seeing her robbed of her teenage years, missing out on all the experiences a teenager should be enjoying – compounded by the fact that there is very limited understanding of the cause of her illness and more importantly what the prospects to recovery look like.

Dr Anna Brooks is an Auckland based immunologist who is doing some world leading research into ME/CFS and its relationship with Long Covid, a post-viral condition that is gaining a lot of attention and which has very similar symptoms as ME/CFS. Check out these links to find out more about Dr Brooks' important work in this area:
My target is to raise $3,000 for Dr Brooks' research, or $1 for every km on the way from Cape Reinga to Bluff. I’m aiming to complete the trip in around 25 days, but expect a few twists and turns.

Please help us support Dr Brooks' research to better understand this insidious illness. 100% of all donations will go towards Dr Brooks’ research fund and are tax deductible in NZ.

Thank you in advance for your interest and support – and wish me luck!
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https://www.justgiving.com/fundraising/james-gouldnz
 
Hutan said:
But, ACC has traditionally not provided support for people who suffer harm as a result of a disease process.
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ukxmrv said:
ACC was originally intended to cover illness as well as accidents but that never got implemented.
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I wondered if people are aware of calls for submission on the proposed New Zealand Income Insurance Scheme
The scheme proposes cover for up to seven months and includes... "People whose ability to work has been impacted by a health condition or disability would be supported to take the time off work to recover properly, work reduced hours, or retrain if they couldn’t continue in the same job."
Closing date for submissions is 26 April 2022 5pm.

https://www.mbie.govt.nz/have-your-say/income-insurance/

Every year, more than 100,000 New Zealanders are made redundant, laid off, or have to stop working because of a health condition or disability.

The Government, Business New Zealand and the New Zealand Council of Trade Unions are proposing a new way of better protecting workers and the economy: a New Zealand Income Insurance scheme.

Events such as the current pandemic and natural disasters like the Canterbury earthquake have caused widespread job losses and seen successful businesses close. Economic challenges are likely to become more frequent, with technology replacing more jobs done by people. The move to a low-emissions economy will see significant changes in how we do things, and some industries, like oil and gas, will be replaced by others over time.

The Government, Business New Zealand and the New Zealand Council of Trade Unions are proposing a new way of better protecting workers and the economy: a New Zealand Income Insurance scheme.

They have worked together to develop the proposed scheme which would support workers with 80% of their income for up to seven months if they lose their job through no fault of their own.

It would give people the time and financial security to find a good job that matches their skills, needs and aspirations, or take part in training or rehabilitation for a new, fulfilling career.

People whose ability to work has been impacted by a health condition or disability would be supported to take the time off work to recover properly, work reduced hours, or retrain if they couldn’t continue in the same job.

The proposed scheme would play a key role in better protecting workers and incomes, matching skills with businesses that need them, and helping to support communities and industries to transition through economic changes.

Like ACC, the scheme would be funded by levies on wages and salaries, with both workers and employers contributing.

The New Zealand Income Insurance Scheme would be a significant change for New Zealand, and the Government, Business New Zealand and the New Zealand Council of Trade Unions are keen to get your views on everything they’ve proposed. Schemes like these are common across the developed world, and temporary schemes have been set up here in New Zealand after economic crises.
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MECFS Canterbury is drafting a submission and expects that this will be picked up by ANZMES and endorsed by the four regional ME/CFS organisations in NZ (ME Auckland, Complex Chronic Illness Support (Bay of Plenty, Waikato, Wellington), MECFS Canterbury and MEISS (Otago and Southland)).

Additional individual submissions may be helpful. Also, suggestions for content to the submission by the ME/CFS organisations would be welcome.
 
If anyone is interested and can dive in, the questions in the submission word template that relate to health conditions or disabilities (ref Chapter 8 pg 96-112 in the discussion document) area start on page 10 and are as follows....
https://www.mbie.govt.nz/dmsdocumen...income-insurance-scheme-a-discussion-document

Edit: Added to the Question sets below the page nos in discussion document that relate to the question set.

Chapter 8 – Coverage and entitlements for loss of work due to health conditions or disabilities (Pg 96-112)

No restrictions on the types of conditions covered by the income insurance scheme
(Refer Discussion doc Pg 99 - 100)
49 Do you agree there should be no restrictions on the types of conditions covered by the scheme?


No restrictions on the working arrangements covered by the scheme
(Refer Discussion doc Pg 101)
50 Do you agree that all work arrangements should be covered (assuming other eligibility criteria are met)?


Coverage for loss of at least 50 percent of capacity to work, for at least four weeks
(Refer Discussion doc Pg 102 - 103)
51 Should the scheme cover partial loss of earnings due to a health condition or disability reducing work capacity?


52 If partial loss is to be covered, do you agree claimants should have at least a 50 percent reduction of capacity to work caused by a health condition or disability and that reduction is expected to last for at least four working weeks?


Claimants’ medical practitioners would assess work capacity, with final eligibility assessed by the scheme administrator
(Refer Discussion doc Pg 104 - 106)
53 Do you agree that the claimants’ health practitioner should be main the assessor of work capacity?

54 Do you agree that, where appropriate, employers could provide supporting information to inform the claimant’s work capacity assessment process?


Employers would remain responsible for taking reasonable steps to support an employee to continue working
(Refer Discussion doc Pg 107 - 108)
55 Are the current requirements on employers to make workplace changes sufficient to allow health condition and disability claimants to return to their regular employment (or alternative work)?

56 How could employers be supported to help workers with health conditions or disabilities to remain in or return to work?


Employers would be expected to make reasonable efforts to keep a job open where a return to work within six months is likely
(Refer Discussion doc Pg 109)
57 Where an employee must stop work entirely because of a health condition or disability, do you think employers should be expected to keep a job open and help with vocational rehabilitation where a reasonable prognosis is made of return to work within six months?

58 Should this be a statutory requirement placed on employers or an expectation?


The scheme would generally meet the full cost of income replacement once a claim is accepted
(Refer Discussion doc Pg 110 - 112)
59 Do you agree that employers should only pay a bridging payment to employees leaving work because of a health condition or disability when the employment is terminated by the employer?
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Hmmm... also worth answering earlier Q 41 & 42 to raise the disparity between ACC having no time limit, and the suggestion that a health condition has 6 month limit..

A sufficient base entitlement period
41 Do you agree with a base insurance entitlement length of six months, plus a four-week bridging payment paid by the employer?

42 Would you support a longer or shorter length of base insurance entitlement?
 
A practical approach to understanding, assessing and managing ME/CFS
Dr Cathy Stephenson recently delivered a webinar about ME/CFS for health professionals on the My Health Hub platform. The recording is now available to watch.

The 67 minute presentation covered:
• What we know (and don’t know) about ME/CFS, including some of the myths and pseudoscience that have surrounded it over the years
• A systematic approach to diagnosis
• How to support a patient with ME/CFS
• Resources for patients and whānau
• Where to go to learn more

NZ-based Health Professionals can claim CPD points by watching the video on https://myhealthhub.co.nz/myalgic-encephalomyelitis-chronic-fatigue-syndrome-2/ and answering a couple of questions. We recommend that this is the link that you share with members of your health team.

The recording is also available to view on Vimeo https://vimeo.com/682646835
 
ANZMES is "urgently seeking to ascertain demand for fractionated/micro (paediatric) doses of the Pfizer vaccine within the ME/CFS community. Please consider answering this short survey if you're interested in a lower dose of the vaccine + research participation."

Survey: https://forms.gle/pHAaUXe3VXBinUwK6

URGENT - Micro Dosing Survey
We are seeking urgent information on the current demand for people to receive micro doses (paediatric doses) of the COVID-19 vaccine (Pfizer BioNTech / Comirnaty) instead of the full dose.

Pfizer's own research showed that paediatric doses in adults produce reduced reactogenicity (less side effects) than full doses. This means that potentially, people who receive the lower dose will have less severe immune responses.

Dr. Anna Brooks and IMAC in conjunction with ANZMES have put together a proposal due for sign off by Ministry of Health (MoH). For the final iteration of the proposal, we need to indicate how great the demand is within the community for micro doses, and how important immunity data, and contributing to research, is to those of you who are waiting for this option.

Research is still required to determine efficacy of paediatric doses in adults (i.e. determine how long the antibodies stay in the body - what level of protection is expected, and for how long). ANZMES has part-funded a research proposal by Dr. Anna Brooks to investigate this, and she is also currently crowdfunding in order for this aspect of her Long COVID-ME/CFS research to be conducted.
These studies would also generate data that may determine whether vaccine certificates/passports could be considered by MoH, if indeed they remain mandated.

Currently, we have two feasible options:

Individuals could receive the micro dose immediately and not be part of the research.
This would be facilitated through your doctor and access to serology testing would be at the discretion of your doctor, and at your own cost ($141). However this information will just indicate your level of antibodies, and would not be comparable to any vaccine study data indicating protection.

or
Individuals could receive the micro dose as part of the research. This would likely start once ethics is approved and after the omicron wave has peaked.
This would include deep immune profiling and serology for 30 Aucklanders and serology for 50 individuals nationwide at no cost. This would need to be done before vaccination, and after your second dose. This requires the individual to give blood samples at a community laboratory (i.e.: Labtests/Southern Laboratories).
Data collected from these samples will be compared to international vaccine studies (i.e.: WHO international units) and will include assessment of cellular immunity.
Any additional samples could be analysed when more funding becomes available. Therefore individuals could still sign-up to be part of the research, and be contacted for testing, when appropriate.

If you want to know more about the study, please see the draft overview of the key information of the study, at the end of the survey questions.
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Webinar on Orthostatic Intolerance for people with ME/CFS
Dr Jenny Butler, Consultant Physician - General Medicine, at Christchurch Hospital.
Hosted by MECFS Canterbury on 9th March 2022.

"Many people with ME/CFS experience triggering or worsening of symptoms when moving to and/or maintaining an upright posture (sitting or standing). This is known as orthostatic intolerance.
Dr Butler shares her expert understanding of OI and dysautonomia, what it is and how it is diagnosed, and some of the ways to manage it if you also have ME/CFS."

The video is available on youtube with timestamps listed for each slide.


____________________________
Bio:
Jenny Butler works in acute General Medicine at Christchurch Hospital, Canterbury District Health Board, New Zealand.
She was always interested in syncope, with people admitted for investigation of collapse being a daily occurrence in General Medicine.
She became more interested in autonomic medicine whilst doing an advanced training project on sympathetic nerve function (under the supervision of Dr Jardine) in 2008. Dr Butler has subsequently continued to work in the ‘funny turns clinic’ one afternoon per week.
Particular areas of interest include tilt testing, diagnosis of ‘funny turns’ (is it a heart problem? low blood pressure? seizure? functional? something else?), management of postural hypotension and vasovagal syncope, autonomic neuropathy, and POTS (postural tachycardia syndrome).
She is also interested in quality, teaching, and communication in healthcare. She works 0.7FTE at the DHB.
Dr Butler was also involved in updating the ME/CFS topic on the HealthPathways clinical platform provided by the CDHB for Physicians and GPs in Canterbury.
 
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