News from Aotearoa/New Zealand and the Pacific Islands

Hutan said:
This was as frustrating as I thought it might be. My comments about Ros' handouts above sum up my view on her presentation today too.
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Compared with what ME specialists say in other parts of the world, I wouldn't complain.

Hutan said:
In answer to a question about how to explain the illness to others, Ros said
'You need to learn about your illness so that when you talk to people it comes across as real genuine knowledge and not just something you are making up'.
I feel Ros follows this advice and, undoubtedly in a desire to make patients feel better, fills in any gaps of knowledge with statements that might or mightn't be true, delivered with certainty.
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For sure!
But isn't that rather typical of clinicians?

Hutan said:
  • Anti-inflammatory medicines can help - ibuprofen, voltarin, paracetamol, aspirin
  • Fibromyalgia is a symptom not a disease in its own right. The person feels more pain than they ought to. It's an exaggeration of pain signals. Michael Butler in Auckland has done a lot of research that helps us understand the mechanism of fibromyalgia. Rest, warmth and massage are useful. Pain creates stress which creates more pain - try to reduce stress levels. Gabapentin and pregabalin can be helpful, build up the dose slowly.
  • Dealing with sleep issues should be top of the list. Get daylight exposure. Avoid naps. Aim is to normalise sleep patterns.
  • Medication for sleep includes tricyclics, melatonin, phenergen. Avoid benzodiazepines.
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If I were a consulted physician, with my current experiences, I would have said the same (with exception for benzodiazepines, maybe). They can't propose too radical ideas, as for instance CBD or cannabis edibles).

Hutan said:
  • Professor Tate now gives lectures to all 3rd and 4th year medical students at Otago University (one of the two universities in NZ producing doctors). This is having a big impact. Young doctors have much better knowledge now.
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This is good news. Warren Tate may be right or wrong on certain points, but he for sure has insights.
 
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.
 
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Otago Daily Times, 16 Nov 2018.
Article mentions other winners but here are the bits concerning Prof Tate. Motor Neurone and ME in the same family – what very bad luck!
I understand he'll be speaking in Dunedin on 24 November, at a MEISS meeting. If anybody is going, please do report back.
Leading University of Otago scientist Prof Warren Tate has been awarded the Marsden Medal for services to science, an honour earlier won by his late brother, Dr Kevin Tate.
Prof Tate was honoured by the New Zealand Association of Scientists last night for "a lifetime of outstanding service".
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Prof Tate, of the biochemistry department, is internationally respected for key research in molecular biology and human disease.
In 2010, he also won the Rutherford Medal, recognised as the country's top science award, but Prof Tate said the Marsden Medal had special significance for him.
His brother, a former Palmerston North-based Landcare Research scientist, also won the Marsden Medal, in 2005.
Dr Kevin Tate died earlier this year after being diagnosed with motor neurone disease.
Other family connections have also been important in Prof Tate's research.
His daughter Katherine's difficulties with ME, once called Tapanui Flu, had strongly contributed to his research on this condition.
And the loss of his brother had increased Prof Tate's determination to continue his research into neurological diseases, he said.
Through mentoring, he also tried to help young scientists to "reach their full potential", he said.
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ETA: add link
https://www.odt.co.nz/news/dunedin/campus/university-of-otago/family-link-makes-tate-award-special
 
From the MEISS December newsletter (bolding mine). Not exactly sure what it means but it appears to be saying that currently ME patients are not eligible for home help?

The Office for Disability Issues and the Disabled Peoples’ Organisations Coalition are holding workshops through out NZ to gather ideas about what should be in the new Disability Action Plan. The Disability Action Plan will document the government’s commitments for the next four years to implement the New Zealand Disability Strategy. 2019‒2022.

Heather Wilson the co ordinator went to a meeting with Minister for Disability Issues is Hon Carmel Sepuloni and Brian Coffee (new Director of the Office for Disability Issues) on the 30th of November.

The meeting was in preparation of a strategy for disability support services - the New Zealand Disability Strategy and there were others there. This provides the framework for the Government's overall direction for the disability sector and for improving disability support services

I managed after this meeting to have an in depth talk to Brian Coffee and I have been told that there are historic medical stream s holding ME/CFS back from becoming under the MoH for home help etc. Under the WHO and also under the act ME/CFS would come under disabling. Apparently ME/CFS is an anomaly and the medical funding model is historic and time to bring it up to date. Brian C suggested continue lobbying more to try and come under the MOH for funding for those disabled by ME/CFS. MEISS and ANZMES ( National Organisation are continuing to lobby in this area)

For those unable to attend these workships the ODI has made an accessible online consultation tool available to gather your ideas about the Disability Action Plan at https://dap-workshop.odi.govt.nz.
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Unwieldy site but might be worth adding a few ME-disability-specific suggestions, just to get ME on to their radar as a disability. Suggestions may be made in writing or by video.
Make Disability Action Plan 2019-2022 suggestions here:
https://dap-workshop.odi.govt.nz/dap-2019-2022#idea-count-container
https://dap-workshop.odi.govt.nz/dap-2019-2022-video
 
@Ravn I attended the Office for Disability Issues (ODI) Wellington Workshop on the new Disability Strategy. It was led by Brian Coffey, Director of the Office for Disability Issues. Only about a dozen people attended.
The reason I attended was to get a flavour of what legislative changes are in the pipeline given the 100 Issues raised by the United Nations preceding the NZ upcoming review. I was fortunate to be in a discussion group with Barrister Warren Forster who is working with the government on idea of expanding the ACC system beyond injury to wider health and social services, income support and rehabilitation for all New Zealanders.

More info here: https://www.forster.co.nz/beyond-in...MOkWPlXFjw9cylSJhpGjT9ojaM7MJlwvUMtYcrGO0OuBA
 
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.
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Controlled by her crippling fear of chronic fatigue? :rofl: 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:
Questions are powerful. What would life look like if you didn’t have the chronic illness? Who do you need to talk to feel more positive about your journey to health? What would it take to be that healthy? “By asking and answering these questions you will be signalling that the chronic fatigue does not work for you in your life,”
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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.
 
Highlighting this thread about the Australian NHMRC ME/CFS advisory committee draft report currently open to submissions – from anyone, not just Australians. Submissions close 18 February 2019 (Australian time).

Important for Kiwis as there is a very good chance that whatever the Australians end up with will be noted – and possibly copied - by our own health authorities.

There's a lot of good stuff in the draft report. Just praising a good point or two, if you don't have the energy for more, will support the committee's positive recommendations.

However, in some places it is clear the committee couldn't agree and they simply state the differing views. So here it's especially important with feedback for or against certain views.

If you possibly can, please make the effort to make a submission, even if only a partial one. Our advocates have worked hard on getting the draft report to be as positive as it is. Let's help them push it further by making lots of submissions.

https://www.s4me.info/threads/australia%E2%80%99s-nhmrc-me-cfs-advisory-committee-draft-report-released-for-public-consultation.7319/#post-131506
 
Metlifecare Senior New Zealander of the Year 2019 finalists named
The three finalists for the Metlifecare Senior New Zealander of the Year have been announced. They are Sir Mason Durie, Dr Bill Glass and Dr Rosamund Vallings. The winner will be announced at the New Zealander of the Year gala event on 13 February.

Dr Rosamund Vallings is New Zealand’s leading authority, and a highly regarded global expert, on Chronic Fatigue Syndrome (CFS) and myalgic encephalomyelitis (ME).
She acts as a reviewer of international guidelines for diagnosis & management of CFS/ME, and for the NZ Guidelines Group. She co-authored the IACFS/ME physicians’ primer, & participated in the international group producing the Canadian and International consensus definitions for CFS/ME. She has also been part of the international group, writing a paediatric primer for physicians.
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"highly regarded global expert" hmm

https://www.metlifecare.co.nz/NZOTY-2019-Finalists
 
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