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Might be good to get a question about PEM in there? Just found the info about who is surveyed and how on the site where the data is accessible - as I was unsure who fills the Surveys out, thought it might be the doctors. Turns out that people were interviewed in their homes...

for everyone's info, I was alerted to this survey from an email sent by https://www.healthychristchurch.org.nz/ They cover off MOH surveys, give advice on submissions, etc. Probably useful not just for people in Canterbury, NZ.

Just came across the NZ Health Survey. https://www.health.govt.nz/nz-health-statistics/national-collections-and-surveys/surveys/new-zealand-health-survey It looks like it could be a vehicle for getting prevalence figures of ME and CFS in NZ. Would have to advocate for a question to be included...

Copied from the News from New Zealand and the Pacific Islands Just came across the NZ Health Survey. https://www.health.govt.nz/nz-health-statistics/national-collections-and-surveys/surveys/new-zealand-health-survey It looks like it could be a vehicle for getting prevalence figures of ME and...

I don't think Julie Marshall's video interview for the NZ Herald has been shared here yet? It was published on 4th July. This is a really good short 2 min 41 sec interview with Julie talking about the experience of having ME / #MyalgicEncephalomyelitis. Note: The date under the title on the...

that was what I have been thinking. We have some great public lawyers here... e.g. https://www.chenpalmer.com/expertise/public-law-litigation/

Hi, We (M.E. Awareness NZ) shared the opportunity to participate in this study, because we understood that the previous work by the Lynette Hodges had a good reputation and was enlightening about PEM. There seem to be about four threads about past, current and future studies at Massey...

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

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. :thumbup: File attached. A shame that the energy and intention from that time, did not continue.

Hi @Marylib, Thanks for joining us here. A positive way forward for ANZMES would be to share any press releases, letters, strategic plans, handouts, etc here for peer review. (Or we could start another more focused thread?) The committee would then quickly (within hours & days) get some high...

Just sharing the list of posts made on facebook for the MillionsMissing campaign just run by ME Awareness NZ. This includes stories from people with ME in NZ, and a few lessons about what me is, the history of the name, difficulties obtaining health support, etc. We had a different theme /slogan...

I understand that some letters to the editor, in response to this 'Ills thought out' article, were printed in this week's listener (my mum, who is in another city told me :) ). Anyone seen them yet? Do they help to balance back to truth?

Just sharing that M.E. awareness events have kicked off in NZ today, and can be followed /supported /shared on a variety of media. The M.E. Awareness NZ collective is running an online Millions Missing campaign... https://www.facebook.com/M.E.AwarenessNZ/ https://twitter.com/MEawareNZ...

Anyone heard of the Institute of Functional Medicine? Head Office in Washington, but practitioners around the world. There is a doctor in Gisborne that has completed their accreditation programme /is a practitioner. https://www.ifm.org/practitioners/leigh-willoughby-mbchb-frca-md/ The IFM...

An article of interest re Public Health leadership in NZ https://www.newsroom.co.nz/2019/04/16/531451/nzs-deadly-public-health-battle#

thanks everyone. I had skim read most of it, and missed these critical bits. So thanks for highlighting the obvious, much appreciated.

I see that Dr Corin Storkey updated his view of what CFS is, and the cause, in October 2018. He does mention PEM there (I don't think it was clear previously whether he was aware that was a symptom?), and links to some recent research...

For anyone in Christchurch or surrounds... Dr Bronwyn Graham was sponsored to attend the Emerge 2019 International Research Symposium in March, by the local group M.E./CFS Group Canterbury. She will be speaking about what she learnt at the next support meeting. Wed, Apr 24 at 1:30pm, Abberley...

Agreed @Ravn and @Daisybell - we do need to think if the current idea for this petition is the right target. I might park this thread and start another one, about how do we support & endorse the ANZMES MP letter template in a more targeted way? Especially as we would like to do that within...

Perhaps this is it? https://www.health.govt.nz/our-work/disability-services/contracting-and-working-disability-support-services/contracts-and-service-specifications#NASC and For Long Term support Also found National Expectations document 2017...