New Zealand: ANZMES

[Jonathan Edwards]

However, for ME/CFS,
a highly individualised condition, the precision medicine model
takes a “deep dive” approach, essential for revealing subgroups,
and understanding individual patient differences. This nuanced
approach is often lost in large, one-dimensional datasets, often
seen in fields like cancer studies."

This makes it clear that whoever wrote this is naïve and has no clue of the real issues.
Precision medicine is largely a cult. Individualisation comes after a general finding has been shown to be reliable. It is even more open to abuse.

 

[Utsikt]

This makes it clear that whoever wrote this is naïve and has no clue of the real issues.
Precision medicine is largely a cult. Individualisation comes after a general finding has been shown to be reliable. It is even more open to abuse.

My life would be so much easier if everyone around me understood this. Apparently, I’m supposed to try everything because everyone are unique so it might just work for me even though it hasn’t worked for othere.

 

[RoseE]

Just wondering if there is a thread to discuss ANZMES upcoming SGM and AGM and related documents (including a Constitution refresh) here, as there are major issues. I wonder if other people are considering voting No, and providing feedback to ANZMES or will be at the SGM to speak (if allowed).

 

[Hutan]

Just wondering if there is a thread to discuss ANZMES upcoming SGM and AGM and related documents (including a Constitution refresh) here, as there are major issues. I wonder if other people are considering voting No, and providing feedback to ANZMES or will be at the SGM to speak (if allowed).

This thread is probably a good place to start a discussion on that. What is being proposed?

 

[RoseE]

This thread is probably a good place to start a discussion on that. What is being proposed?

I apologise for raising the question and not coming back to clarify. I ran out of capacity.

The AGM for ANZMES on the 1st Nov did not have a quorum (10 people) so it has been rescheduled to Monday 24th Nov, and they have announced a change of approach to be voted on - which is evidence that they have reflected on some of the concerns raised by individuals in October. For consideration and voting there were some new purpose statements and constitution, a new National Advisory Council, new logo, and other matters that many people felt needed consultation and there had been none - along with technical issues with amount of notice and sending 49 pages out to chronically ill people to review in 23 days.

NZ incorporated societies are being forced to re-register by April 2026 to comply with new law. A constitution re-write or move to a new Charitable Trust model is a great opportunity to reflect on purpose and scope, and who ANZMES members should be i.e. should it follow models used by other national advisory charities for health conditions and have the regional ME/CFS groups as core members and partners, rather than focusing on individual members? etc

ANZMES new plan:

We will re-register as an Incorporated Society — to meet the April 2026 deadline under the new Act — using our existing Constitution. A minor amendment will be added to clarify that, in the event of any conflict between the Constitution and the Incorporated Societies Act 2022, the Act will take precedence. This ensures compliance without requiring broader constitutional changes at this stage.

Following re-registration, our focus will shift to developing the Trust Deed, which will be presented to members alongside a refreshed logo.

...
We will also keep you apprised of progress, and you’ll have the opportunity to review and contribute to the proposed Trust Deed.