News from Aotearoa/New Zealand and the Pacific Islands

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.

 

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

 

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/

 

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

 

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

 

Even though there've been some noises from our health authorities about long Covid being real, the denial has started.

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

 

ACC was originally intended to cover illness as well as accidents but that never got implemented.

https://www.nzherald.co.nz/nz/sir-g...n-into-unjust-acc/AZ2D6XTNU3WPKBJUNZDQ4JTZTU/

I noticed this discussed on a Long Covid group.
Members had to prove that they caught Covid at work. One person had been away at a work conference abroad and was accepted.

 

Fundraiser for this research: Cycle for ME / CFS

https://www.justgiving.com/fundraising/james-gouldnz

 

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/

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.

 

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

 

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.

https://www.youtube.com/watch?v=tJl0R--SAe8

____________________________
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.