News from Aotearoa/New Zealand and the Pacific Islands

Yes Ros does what she can with very little time. I think the whole nomenclature thing in terms of ME. ME/CFS or cfs/ME has to do with whatever country one is trying to make an impact in. There is an explanation of this in the 2017 Pediatric Primer, with contributions from several people, including Ros Vallings.

https://www.frontiersin.org/articles/10.3389/fped.2017.00121/full

 

Many people are hoping that we can get approval for cannabis. Many patients are doing it on their own, the old fashioned way. I used to do it this way until I went back to Oregon US for awhile, and there was a good medical program. The problem in NZ has always been that people might get arrested! Hopefully that may change in 2020.
In terms of the information sheets, Anzmes updates them as able. I am not a medical expert so I can only update the ones that are more general in tone. As usual Ros has to do most of the work because she is our only specialist who is currently well enough to practice. I am hoping that before long the science in the field will be catapulted toward the moment when none of the ME organisations around the world have a reason to exist at all! I don't think I will live to see it, but it would be wonderful.

 

I have met many of her colleagues personally at a conference in San Francisco in 2014, as well as corresponding with some by email, and I can tell you that in my opinion, she is very well-regarded internationally. See the 2017 pediatric primer for example, as well as the International consensus criteria for ME, which distinguishes ME from CFS in terms of the research available at that time. Please send me a message if you want the links to the documents I mentioned. They are available free online, as opposed to the one put out by the IACFS/ME. I think you still have to pay for that one, but I am not a big fan of that group anymore anyway. There will be a new summary of the Invest in ME conference available soon online. I am happy to help in any way I can.

 

Anzmes has already submitted for the first round, so that is good. I am not sure if MEISS has submitted yet but I can find out.

 

I recall that there was a typo somewhere on that site, but I don't know if it has been corrected yet or not. Sorry, I have cognitive problems so I am a bit slow sometimes.

 

I think Wendy's effort in this is called the Rest Assured Respite Charitable Trust. I hope it is a great success!

 

Hi Rose, I am on committee but I haven't noticed that yet. The thing with Anzmes is that if we broaden our scope too much to include all the conditions that our members suffer from, we risk diluting out resources in terms of lobbying MOH for people who have been diagnosed with ME. This is sad, and I wish it were different, but we so far have to focus on ME alone. Maybe that will change in the future. We do have information sheets on other co-morbid conditions and you are always welcome to ring the office or email and talk to Debbie, who is our national coordinator and does a find job, in my opinion. At one point the Arthritis Foundation was very active and had good funding but that may no longer be the case. Sadly. I know that people with FM and other conditions attend our local support group meetings in the Waikato. I am actually too ill to attend them myself. I am not sure if other neurological charities might be able to delve into the issues with chronic and neuropathic pain. I hope so.

 

So sorry ANZMES was behind the times with this. We were focused on our media release for ME Day. We just this morning sent in our reply and I am hoping that the Listener will still publish it. I thought the other replies were great! I managed to see some photos of them. I am too ill to buy the magazine from a shop and too poor to subscribe! I am sure many here are in the same boat.

 

Our editor of the MP, has had some personal setbacks from time to time. She is alway very apologetic about not being able to attend to everything. I know her personally and I find her one of the most conscientious and hard working people I know. She served as Prez of Anzmes for many years while her husband edited the MP and now we are very happy to have her back on the job - for some years now! Sometimes I can hardly believe so much time has passed since I first became involved with Anzmes. I try to help with the editing of the MP, but I always fall short because of my congnitive disability and my lack of computer skills in terms of editing online without a Word program on my Mac. Word for Mac is very pricey but otherwise I love my Mac laptop.

 

Yes, I am afraid that it may have been a rush job, because of the deadline for ME Awareness Day. MEISS wears multiple hats. The article by Prof Tate was very good in the Star I think, and yes - he needs much more funding. I think the people with Open Medicine Foundation have money for good PR. I always try to emphasize the work of Prof Tate as well as the work at Griffith Uni in Australia. Perhaps they don't have as much money for PR - I don't know. But they are also hard at work on a biomarker. I think competition between scientists is a good thing. From where I sit, it looks like they might be spurred on by knowing others may beat them to the finish line. But I have no idea, really. I am just an armchair fan of science. Also, I think it is important to give hope to people who have been in despair for so many years. Like me!

 

https://systemreview.citizenspace.com/review/health-and-disability-system-review-plain-english/

 

I, too, tell everyone about Prof Tate's work, whether people want to hear it or not

Not so sure how I feel about Griffith. Obviously I really hope they're onto something. However, they have a history of over-hyping small studies and their biomarker is always just around the corner... an has been for some significant amount of time. As I understand it they do get a bit of money, at least within the Australian context. Which of course is still far too little all round.

As for competition, personally I think cooperation is more helpful at this stage of research. Later, once we have biomarkers and enough knowledge of pathophysiology to get big pharma interested, then competition might help speed things up.

 

@Marylib Welcome to the forum by the way! It's good to have a representative from ANZMES here. When, like me, you're housebound at the other end of the country it can be hard to see or interpret what exactly ANZMES does, just through lack of information, especially when it comes to the so very important behind the scenes work. So it's good to have somebody in the know floating around.

Also, if you haven't already done so, there's a thread called Introduce yourself where, if you wish, you could do just that: introduce yourself to forum members.

 

Check out if your local library gives you free online access to the PressReader. That would give you access to the Listener and thousands of other publications, NZ and International.

 

@Ravn thanks for the link. Just completed my submission. Since system-wide changes were particularly sought I focused a lot on more direct accountability at all lvls of the system to the end consumer (as contrasted to the brush off we receive from politicians currently). Better systems for collecting and adapting in response to consumer feedback. Better communication to consumers about available services and better accessibility of those services. Also slipped in special consideration for rural folk. And slipped in special consideration of those with hidden, under-researched and difficult-to-treat illnesses using ME as an example... stating that our experiences are a good measure of the effectiveness of the system as a whole.

 

Article in a NZ magazine about Moss-Morris' research. As you might expect it's

How illnesses are affected by your psychology
by Marc Wilson / 28 May, 2019

 

A gem of a newsletter from 2002 NZ has surfaced that talked about 23 'MPs for ME' with the aim of promoting awareness and action, and changes to WINZ policy. File attached. A shame that the energy and intention from that time, did not continue.

 

Woops, just thought to share here for any NZers /others interested in a separate thread
https://s4me.info/threads/developin...-mp-to-effect-change-for-people-with-me.9754/

 

Would be interesting to ask WINZ how much if any of the action promised actually occurred.....