News from Aotearoa/New Zealand and the Pacific Islands

Don't know if she views ME/CFS as functional, but Wrapson has co-authored with Rona Moss-Morris;

https://www.google.com/amp/s/www.re...eliefs_about_functional_somatic_syndromes/amp

 

I was looking at some MUS papers a while back and noticed that quite a few authors were from NZ, mostly from the psych department at AUT. They seem to collaborate a lot with Kings College.

 

Wessley did a visit there (and maybe a sabbatical?) in the 1990's. I remember his interview on National Radio which was non-critical. He organised a conference or two whilst there.

 

I imagine most people on this thread are well aware of this research and this facility to donate. However I did a search on Twitter and nobody seems to have posted the link there ever.
So I thought I would post these links in case anyone wants to use them to retweet/share.

https://twitter.com/user/status/1178423841812615169

 

Thanks @Tom Kindlon for the prompt!

M.E. Awareness NZ did share info about the donation opportunity on twitter earlier in the year. But we linked to our facebook page, as Prof Tate's page didn't have any info about what he was studying (and our facebook post did). There was also a typo in the url (the Otago Uni alumni team had used 'encephalitis' instead of 'Encephalomyelitis' which we weren't too keen on). We contacted the alumni team (& Prof Tate) and they have since provided a new url. And I see now there is some info about the research

Too much background info probably. haha.

Anyway... going off to share on twitter now. Thank you.

 

We have an opportunity people, and would appreciate your wisdom /media release writing skills.
Another article on ME is about to be published in a NZ publication, and M.E. Awareness NZ has been asked for an official comment about the state of funding for ME research in NZ. (Prof Tate has been interviewed for this, along with a pwME and a doctor.)

What would you write? Looking for some ideas.
@Ravn @Hutan @theJOYdecision

What do you think about this?...

Research funding in New Zealand and around the world is woefully inadequate given the prevalence of the disease and the level of disability that ME brings to people’s lives. We need researchers focused on understanding the sub-groups in ME, and on finding treatments and recovery pathways. It is not okay that there are no diagnostic tests and not even one drug or treatment specifically approved for ME. People with ME, some who have been ill since the Tapanui Flu epidemics in NZ during the 1980's, are being denied even a basic quality of life, and research is the key to remedying this.

A small number of New Zealand researchers are engaged in ME-related research that is making an impact internationally, but their access to funding is severely limited. There is an urgent need for a contestable NZ grant fund to be established for ME research, to identify interested researchers and increase the opportunity for collaboration within New Zealand and internationally. The estimated 20,000 New Zealanders with ME, including 3,000 young people and children, deserve it.​

We have under a day to refine something impactful /quotable. i.e. Need it by Tuesday 8pm NZ time. In 19 hours.

 

It’s good. I’d suggest taking out ‘and around the world’ out of the first line. Giving the impression NZ is lagging might be more effective than admitting the rest of the world aren’t doing much, because then people might think “ah well, if the rest of the world isn’t bothered, why should we be?”.

If there is a rivalry with Australia, you could add that the Health Minister this year announced $3m in medical research and said “it’s real, it’s significant, it’s important” and you want to see NZ Health do the same thing.

More of his quote if you wanted it: “Myalgic Encephalomyelitis and chronic fatigue syndrome are major issues that can have a profound impact on individual and community life. 240,000 Australians – at least – have some form of ME or CFS. Of those a quarter can be housebound with the same impact on them as MS or any of the neurological conditions so it can be a crippling and catastrophic diagnosis for an individual.“

How much has NZ spent on research?

 

It would have been good if I had thought of doing some research on that!
I think it is probably in the $10,000s. And I know that right at the start (tapanui flu era) requests for promising research were declined. Where might we be now, if that research had happened!?

 

Sounds pretty good.

I agree with @Trish's and @MyalgicE's comments.

Re funding, Prof Tate might know?

Here's an attempt to combine the original draft with @Trish's and @MyalgicE's comments. I assumed a word limit (beware subeditors just cutting the last paragraph when they can't fit all the text) so I chopped and pruned a bit to arrive back at the same length of text.

Research funding into ME in New Zealand is woefully inadequate given the high prevalence of ME and the level of disability it causes - about a quarter of people affected are too ill to leave their homes and some are too ill to leave their beds. It is not okay that many decades after the Tapanui Flu epidemics of the 1980s there still are no diagnostic tests and not even a single drug or treatment specifically approved for ME. As a result people with ME, some of whom have been ill since the Tapanui Flu epidemics, are being denied even a basic quality of life. Research is the key to remedying this.

A small number of New Zealand researchers are engaged in ME research and are making an impact internationally but their access to funding is severely limited. Australia recently announced AU$3 million for biomedical research into ME. There is an urgent need for a similar contestable grant fund in NZ. The estimated 20,000 New Zealanders with ME, including 3,000 young people and children, deserve nothing less.​

 

don't know if this has been posted

https://www.eventbrite.co.nz/e/what...ome-an-update-on-research-tickets-76132286719

 

Soon the dam will break. Reality has a way of asserting itself. Not nearly soon enough. But it will. It's already spilling all over the place. Crow will be on the menu.

 

New Zealand Medical Journal:
https://www.s4me.info/threads/the-m...nce-denial-2019-mclintic-cfs-mentioned.11891/