News from Aotearoa/New Zealand and the Pacific Islands

Key changes seem good. I'm very much looking forward to direct acknowledgement that the current recommendations are so flawed that the entire process that lead to their creation needs massive reform as they have caused harm.

But every bit of progress adds up to that moment so this is still very positive, at least unless internal fury succeeds at blocking or watering it down. Truth moves slowly but it grinds down everything in its path.

Is the content not being public information temporary? I don't understand the point of that besides making accountability harder.

 

New story on Stuff (and I think in the printed The Press today).
https://www.stuff.co.nz/national/he...-fatigue-sufferer-told-it-was-all-in-her-head

Good article and video.

We led this with...

 

@RoseE
I know you don't have ME yourself, Rose, but even for a healthy person - do you ever sleep?!
The amount of stuff you get done is simply astonishing. Thanks so much!

 

gets mentioned in this article
Christchurch chronic fatigue syndrome sufferer told it was all in her head (Dec 2019)
https://www.stuff.co.nz/national/he...-fatigue-sufferer-told-it-was-all-in-her-head

(still too many references to 'chronic fatigue' )

 

When will we move on from these horrible headlines?

 

We've had "things are changing for ME patients" for decades now. Still no change. Even in this article it basically reports how nothing has changed, how everything is clearly broken, yet includes the tired trope of "things are changing".

I don't think we'll move past them until everything moves past everything. Too much confusion, too much sunk cost, too many mistakes that no one wants to own.

 

Dr Vallings has written an editorial article titled "Chronic fatigue syndrome" for the Journal of Primary Health Care.

Is it possible to give Dr Vallings an editor or a media advisor or some such person? She clearly puts a lot of well-intentioned work into her educational efforts - and I appreciate that - only I'm not convinced the results are as she intended.

After reading this particular piece I feel like I've been whirled about and spat out again by a tornado, all dizzy and disoriented and unable to remember much of anything. I suspect any GP reading this would feel much the same.

Full article here https://www.publish.csiro.au/hc/Fulltext/HCv11n4_ED2

Journal of Primary Health Care 11(4) 295-299 https://doi.org/10.1071/HCv11n4_ED2
Published: 18 December 2019

 

This research article in the Journal of The Royal New Zealand College of General Practitioners has just been brought to my attention...
http://www.publish.csiro.au/HC/fulltext/HC19041

A neuro-inflammatory model can explain the onset, symptoms and flare-ups of myalgic encephalomyelitis/chronic fatigue syndrome
Angus Mackay 1
+ Author Affiliations
Journal of Primary Health Care 11(4) 300-307 https://doi.org/10.1071/HC19041
Published: 29 November 2019

Discussion of this paper is continued here.

 

Interesting. Still curious how that would explain the myalgia, but then again there is probably a similarity with the flu and similar infections and why they also have muscle and joint plain. The pain is very unlike the soreness from exercising long-sedentary muscles, contrary to the confused BPS model.

This is interesting:

I can't say I have noticed that, especially as for many it seems to be simple cases of the flu and I've had a few minor infections with flu-like symptoms and they didn't particularly affect the illness. But the effect sure is similar. An accumulation threshold could be at play.

 

This is an opportunity to raise awareness of the issues in accessing education and support for students at NCEA level with ME and other disabilities. n.b. There are an estimated 3,000 young people with ME in NZ.

Individuals can apply for a role on the "Disability & Learning Support NCEA Panel" by sending in a CV by 5th February 2020.

You will need to be prepared and able to commit to 4 days panel work during 2020. Most likely difficult for someone ill with ME.

The Ministry of Education says...

"For the Disability & Learning Support NCEA Panel, we’re looking for people that can demonstrate:
+ Expertise in disability and/or learning support issues in senior secondary schooling or similar context, or lived experience as a disabled person in education
+ An ability to recognise and acknowledge the diverse needs of a wide variety of different disabled young people and/or people with learning support needs
+ An awareness of the particular issues in NCEA affecting key groups of disabled young people and young people with learning support needs."

For more information... https://conversation.education.govt.nz/conversations/ncea-review/ncea-panels-eoi/

Please shoulder tap someone if you know anyone with some education experience and/or some lived (self or child) experience that could contribute in this way.

 

This news item is interesting in that some ME researchers are using PET and MRI scanners. This new invention, a 3d colour xray, MARS scanner looks like it might replace those?
Might be some years off?

https://www.stuff.co.nz/science/118...nvention-will-revolutionise-medical-treatment


Moderator note:
This post copied to new thread here
https://www.s4me.info/threads/3-d-colour-x-ray-mars-scanner-invented-in-nz-2019.13065/

 

Happy New Year to all those in NZ and Aus etc.

 

I was having a look online for how issues around MESH injury were treated by different countries and came across this in NZ

Diana Unwin Chair in Restorative Justice
Victoria University of Wellington

The Collaborating Centre for Safe Healthcare, Faculty of Health, Victoria
University of Wellington partnered with the Chair to provide expertise in safe healthcare.

Has anyone approached this group or the Restorative Justice Chair regarding ME issues in the past?

(here is their MESH document)

https://static1.squarespace.com/sta...na+Unwin+Chair+in+Restorative+Justice+(1).pdf

 

Hadn't heard about either the chair role or the group. Thanks!
Definitely will be good to investigate.

 

Presentation by Dr Vallings and Meghan Keenan in Auckland, 22 Feb.

Topics: latest research, new Auckland Health Pathway [largely written by Dr Vallings], spinal & brain stem abnormalities in ME [no further information on this], Auckland support services.

https://www.meauckland.org.nz/drvallings2020

 

This worries me....

 

Note from moderators:
This post copied and another moved to a thread on this story here:
https://www.s4me.info/threads/the-heart-breaking-experiences-of-mothers-with-me-nz-herald-feb-2020.13710/

New article in the NZ Herald from the Complex Chronic Illness Support team...
https://www.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=12305695

"Local Focus: The heart-breaking experiences of mothers with ME"
Talks to that topic a bit. But also to how people with ME are not eligible for home care.

 

The Rest Assured Respite Charitable Trust is advertising for two more Trustees.

The Trust has a MEal programme, Mentor programme and Charity Boutique, and are working towards their long term goal of providing a place of respite for those with ME/CFS/FM.

For more info:

• https://seekvolunteer.co.nz/volunteering/115941/trustee-role
  
• visit www.restassuredrespitetrust.org to discover more about the Trust.