News from Aotearoa/New Zealand and the Pacific Islands

There is a new thread on the Bay of Plenty Complex Chronic Illness Support - Towards Wellness course that we have discussed a bit above. It appears that there are plans to roll out the course across the country and online.

https://www.s4me.info/threads/nz-complex-chronic-illness-support-towards-wellness-course.6548/

 

Yesterday the Association of New Zealand ME Societies (ANZMES) held its AGM. In addition to the AGM agenda, there were talks from: President Nicola Swain and Dr Ros Vallings, ANZMES' medical advisor.

The following are my highlights - apologies for any errors and omissions.

President's report

• 520 members (regional organisations are affiliated but memberships are separate - people have to hold two memberships to be members of both). More members are needed.
• One administrator is employed part-time.
• There was a meeting with the Minister of Health, David Clark, who was interested. There will be another meeting in 2019.
• There was a meeting with representatives from regional organisations in August.
• A review of information sheets is underway.
• Carey Foley (apologies if the spelling is wrong) left a bequest to fund consultations with suitable medical practitioners for those who can not afford it.
• Another significant bequest is in process.
• A primary school made a donation resulting from a range of fundraising efforts in support of a pupil with the illness
• Trying to maintain an active presence on social media

Treasurer's report

• The treasurer, who has just been in the role for a year, has moved the accounts onto the MYOB platform and has data stored on the cloud - a pretty significant step forward
• The Lotteries Commission funding has halved to $15,000 this year - there is a lot of competition from this funding source.
• Subs were kept at $40 per person per year (I think it might be $20 for beneficiaries)
• Ros Vallings commented that Work and Income can pay subs as a medical expense for beneficiaries.

Election of committee members
I believe that all current committee members were renewed in their roles and two extra members were added.

Name change
ANZMES agreed to change its name from Association of NZ Myalgic Encephalopathy Societies to Association of NZ Myalgic Encephalomyelitis Societies on the basis that 'there is now good evidence that there is inflammation in the brains of people with ME'.

Nicola Swain's presentation
Nicola presented on depression and anxiety in carers - this was a summary of work she has done as an associate professor at Otago University and relates primarily to carers of older people rather than specifically of PwME. She found significant levels of depression and anxiety in carers, higher than the average for NZ people.

One finding was that the mental health of carers was related to the level of distress and ill-health of the person they care for. Therefore, addressing the medical and pain control needs of the people being cared for can bring many benefits. I found this to be a good practical finding - rather than, or perhaps as well as, providing workshops on coping, one good strategy to improve the mental health of carers is to improve the well-being of the people they care for. The government is aware of the very difficult situation of many carers and is working on solutions - respite care provision is acknowledged as a major need.

Dr Ros Vallings' presentation - this was an update on research.
There are some threads related to Dr Vallings' presentation here, that I will add to as I make them.
https://www.s4me.info/threads/singing-and-gargling.6611/
https://www.s4me.info/threads/new-z...lity-type-of-people-with-me.6636/#post-120849

Professor Warren Tate attended. He chatted before and after the meeting and I just jotted down things later, so the information is a bit patchy. Prof Tate no longer has a large teaching obligation although he continues to educate medical students about ME. He has informed around 1800 future doctors now, so this should improve things as they move through their careers.

It sounds as though he is managing to continue with a research programme into ME, amongst other programmes into things like Alzheimers, with the help of some motivated researchers and a little funding. There have been some significant donations made by individuals who appreciate what they are doing.

Dr Eiren Sweetman, who earned her PhD last year will continue to work in the team. Dr Angus Mackay, who has ME himself, has been working with Professor Tate for some years. He mentioned his work is centred around a theory involving the hypothalamus and an inability to control stress.

The focus of the team in general seems to be on the analysis of cytokines and other molecules from blood samples taken before and after exertion as well as looking at abnormalities of muscle chemistry. They have a funded study on the utility of MitoQ as a treatment of ME. They have just had a paper accepted on chronic inflammation/microglial activation.

I invited Professor Tate to encourage his team to join us here to explain and discuss their work.

 

Mel Abbott, in Auckland, who previously offered the Lightning Process now has her own brand, The Switch. It's discussed here:

https://www.s4me.info/threads/the-lightning-process-has-mutated-into-the-switch-in-nz.6590/

Edited out a comment.

 

No, just that it was positive, that David Clark seemed interested. My recollection is that Nicola said that it was David Clark who asked for another meeting next year, but I'm not sure about this.

 

From the Mindfood magazine
https://www.mindfood.com/article/curing-chronic-fatigue/

For years, Fiona Cutts was controlled by her crippling fear of chronic fatigue.

“I used to be so shy that I could scarcely say my name in public”, Cutts says. “My fear of public speaking was so intense that people would often say to me, ‘How are you going to make this work in the corporate world?’ I did make it work, through a mixture of avoidance and sheer determination, but eventually, the effort caused me to develop chronic fatigue syndrome.”

Numerous studies show that getting stuck in negative emotional patterns – anger, loneliness, sadness, stress and anxiety – can have a huge impact on physical health.

Despite being told that she couldn’t heal herself, Fiona pressed on, making space for negative emotions to be processed (not suppressed), trusting her own body and empowering herself with tools and strategies that support her to be more positive.

And it worked. After six years, Fiona went from having a chronic illness to a life of vibrantly good health.
​

Controlled by her crippling fear of chronic fatigue? And it seems that a fear of public speaking is what caused her to develop chronic fatigue syndrome.

This article, which is really more of an ad for Fiona, is dated July 2018 - I came across it at the hairdressers. It goes on to tell us how Fiona now travels the world helping people become well. There's helpful advice there like:

Perhaps Mindfood needs some letters, as I can imagine that many people would search the Mindfood site for guidance when they start to feel ill. I think that Mindfood, despite its name, aims to be a bit more credible than this article suggests.

 

Recent NZ related threads:

The recent study done by Eiren Sweetman and the Otago team:
Changes in the transcriptome of circulating immune cells of a NZ cohort with ME/CFS

An article in the Spinoff (note: Members Only)
Spinoff article: Inventing illness what it’s like when your GP won’t believe you’re in pain