New Zealand: ANZMES

Death* by a thousand facts.

* to disinformation

 

The postal voting papers for the ANZMES elections have just arrived - and I'm confused.

There is only one nomination each for President, Vice President and Treasurer. You have the option of voting for them or abstaining. Quite what's the point of a vote here, surely they are automatically elected?

For the Executive Committee there are 12 nominations and you can vote for as many as you like. You can also vote against or abstain. It doesn't say, unless I missed it somehow, how many people out of the 12 will be elected to the committee, nor if there is a minimum number of votes they need to get, nor how negative votes are counted - does each no negate one yes?

Also a bit weird that you have to put your name on top of the voting paper so the person counting the votes can see who voted for or against whom.

Anyway, if anyone knows the track record, good or bad, of any of the nominees, I'd love to know. Maybe by PM, for discretion.

Not much time to vote, deadline is 19 October.

@Hutan, you might know how the voting system works?

 

I don't think these have been posted yet?
Recorded at AGM in November 19, posted on Youtube March 20.
Some issues with sound quality, especially with the Q&A video.

Dr Vallings (eclectic overview of international research, nothing new in there):

https://www.youtube.com/watch?v=iVLtYqdir5s

Prof Tate (presentation of his team's work, mostly published, but some may be unpublished?):

https://www.youtube.com/watch?v=dVepELli8EI

Q&A (both, but mostly Prof Tate):

https://www.youtube.com/watch?v=LzHOtNbDmiw

 

I knew Prof Tate had a daughter with ME but I didn't realise he had two family members with ME .

He describes how funding is very difficult, often wondering how he is going to continue to pay wages. One nice story was that he had a South Island farmer phone him up and they got in a bit of a heated debate about ME. Following that the farmer donated 100,000 to his research and followed up right before this talk with another significant donation.

Here is the last slide showing what was planned for 2020


He would also like to try and replicate the Stanford IDO2 gene testing to see if his cohort of patients also have those mutations.

He has samples stored from people taken monthly and would like to compare "good" samples with "relapsed" ones to see if he can find something that is significantly changed.

 

I agree about your concerns about the explanation of the albatross. I do not think it is “pwME” centred within Aoteroa/NZ culture and reflects a position that we rely on science, medicine or the wellness industry to “fix us”. I also find the positive spin of hope, lifting up, assumes we are broken as people and cannot draw upon our own strengths, supports and cultures. They are based in Dunedin and are rightfully proud of their albatross colony and research. For me, nothing much has been going on in science to help “treat” my illness so I took my own health journey to find out what might help me, most of this has been gleaned from training in the bio-psycho-socio-cultural-spiritual model of health. I also find it difficult to be in patient support groups and have avoided them because of my profession and there is also an assumption you should be using alternative medicine, special diets and expensive supplementation, well-being courses etc No one has the answer, just what worked for them and often many of these approaches require money and resources that pwME often don’t have as we maybe on benefits, live away from big cities or have to keep to a strict budget to maintain the essentials for our whanau’s health. Health beliefs and practices have developed within the pwME community and to a degree that has become pwME culture with a language to match. I feel alienated from this Eurocentric culture at times, although I am a Pakeha, I was born in Dunedin, raised in Rotorua and lived in the Pacific Islands (and Europe) and my close whanau are Maori and my children are part Samoan. When I see the albatross, I see a powerful, solitary bird that braves the wind and stormy seas of the South Pacific and sub Antarctic Islands and I can derive much meaning as a pwME into the resilience of living and experiencing inhospitable environments (both internally and externally) but always returning to the sanctuary of the whenua and supportive networks.

 

When I first realised the bird in the ANZMES logo was an albatross I immediately associated this with the saying 'having an albatross around one's neck' - which ME could certainly qualify as - but it still struck me as a weird symbol to choose, especially as it leaves open the unfortunate interpretation of the pwME being an albatross around somebody else's neck. No thanks!!!

FWIW, having spent a few years in Dunedin myself I love the Royal Albatross, a truly stunning bird to watch. And of course albatross have other symbolic meanings attached to them, like bringing good luck to mariners (just as long as you don't harm the birds, that's very bad luck). But the ANZMES interpretation of its symbolism reads awfully dated. "like the help sufferers need from others in order to begin their lives again" - sure, I need help with this and that, as does everyone at some point in their life, but I'm not sitting here passively waiting for life to begin.

 

The ANZMES AGM was held on Saturday 6th November 2021.

Fiona Charlton was elected president, and there are some other new faces from last year's AGM too. A new era for our national ME organisation ahead.

Fiona recently send this introduction out to the regional groups...

In other news from the AGM:

• Anna Brooks (Immunologist, Auckland University), Prof Tate (Biochemist, University of Otago) and others talked about ideas for research during the Q&A post the AGM presentations.
• Anna talked briefly about her connections with the MoH and IMAC and the possibility of research into fractionated dosing of the covid vaccination for pwME, etc.
  
• ANZMES was bequeathed significant funds some time ago, and the funds have recently been deposited into their bank. I understand that the amount was close to $1 million. Hopefully that enables some great strategic planning and actions.

 

Dr Vallings is retiring - not sure exactly when but if not already, then soon…

 

I have a dim feeling I heard that her daughter is taking over? Does anyone know for sure? And if so, what she's like?

 

Copied post
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.

 

I think it is always a good idea to keep us all informed of what supposed charities for ME are up to wherever they may be.

Charities, especially if not large often can work in a blind spot were they can do whatever and the few people who notice and speak up get dismissed.

But if people affected by the illness from farther afield also notice and they are getting more scrutiny they may start to feel obliged to check their personal beliefs against some facts.

This isn't about shame and blame but about accountability. It's literally their job to provide accurate information.

So here they are -- the executive committee for ANZME:

https://anzmes.org.nz/tips-advice/

Perhaps they might like to be outward looking and become familiar with the community of ME sufferers beyond their enclave and join us here to discuss their advocacy goals etc.

They don't seem to have a mission statement but it does seem that they have a donation option for bio research being done by Warren Tate. So some mixed messages there.

 

Looking at this from the outside, my impression is that the new president is genuinely trying to address some of ANZMES' weaknesses most of which appear to be the result of an echo chamber effect crossed with small-group dynamics.

In such a situation the biases of one or two dominant individuals can become magnified and overly influential and group loyalty demands they not be critically evaluated and habits develop that are not easily changed even when they no longer serve their original purpose. This is not at all unique to ANZMES, it happens in many small organisations with only a small pool of volunteers.

It then becomes very difficult for any single person or two to try and open up thinking as this is often perceived as a threat to the group and they're ignored, obstructed or frozen out. As per @Hutan's report.

If my observation is correct and the new president really is trying to implement better processes she needs to be supported. In fact, now may be a short window of opportunity - new president plus a significantly improved financial position due to a generous bequest - to make ANZMES into a more effective organisation.

The million dollar question, how to get the right people into the right position within ANZMES to make the most of the opportunity?

 

Merged

Special Episode Part One: ME/CFS, disability and health equity - Know M.E. Series

https://www.youtube.com/watch?v=xh5E5_qVWWM

 

Possibly part of this Continuing Medical Education series?
https://anzmes.org.nz/new-cme-accredited-series-for-health-professionals/

More videos here (haven't watched any yet)
https://www.youtube.com/playlist?list=PLlV7biMCtpYDdldX5H94-cJrEIUAsgzU1