News from Aotearoa/New Zealand and the Pacific Islands

Great challenge & I have shared with some NZ friends & asks them to share too...

 

Thanks for highlighting. Apologies, I normally remember to check the link suffix! I have edited now.

 

Wow. That's pretty meaningful. We all painfully know how risky it is to publicly support ME research. Very courageous.

As usual, but I'll take it. It sucks that we have to depend on the right people contracting the disease in the right circumstances, but I'll take it.

I guess that we're that kind of deviation from the norm, in that progress for us won't happen one funeral at a time but rather one unfortunate sick child at a time, or something like it. And if the apparent trends continue, that may just be how we get out of being chained in the basement.

 

Agreed

 

I think my GP must have been to this. Today she asked me if I had heard of Mel Abbott. I said that I thought anything that placed the emphasis on the person being responsible if they didn’t improve was unethical and that most of these LP-style approaches were simply money-extraction with a hefty dose of guilt and shouldn’t be touched with a barge-pole. Then she took my blood pressure... Amazingly it was normal!!

 

Her BP, however, may well have been elevated after the telling off you gave her . Good on you for putting it so clearly.

 

Thanks for providing such a great response @Daisybell. We should share it widely for others to pull out when needed

 

She still thinks it ‘works for some people’ - but I hope that she will think about the ethics of recommending a ‘therapy’ to patients that tells them they haven’t tried hard enough if it doesn’t work....

 

Have you seen the draft strategy for Disability?
You may be aware that the Ministry of Health is touring thru the country in Sep and Oct to hold 'Disability Community Conversations' sessions. The committee of the Canterbury support group registered for the Christchurch sessions being held this Tuesday. (Morning session is for providers, and afternoon session is for pwDisability.)

Those registered have received the draft strategy, and a list of great questions including....

• Are we going in the right direction?
• What is missing?

The email introduces the session, with

It would be great to have any feedback from this group that we can feed into the conversation sessions. And if you haven't registered for your local event, it could be worth doing (if it's not too late - 10 days notice on rsvps)...
https://www.health.govt.nz/our-work...y-projects/disability-community-conversations

Obviously, part of the conversation is raising how difficult it is for pwME to access any support.

This is the draft strategy /direction document...

 

And have you seen this...
https://www.systemreview.health.govt.nz/interim-report

 

Possibly of interest

https://www.researchgate.net/profil...9-Refereed-Conference-Proceedings.pdf#page=17

 

As mentioned by @Daisybell above, Mel Abbot of the Switch programme, has had an enthusiastic reception at recent GP conferences.
She has shared some info abou this and an audio recording with her newletter subscribers - refer https://s4me.info/threads/the-light...into-the-switch-in-nz.6590/page-3#post-201454

 

I have started a thread to discuss ideas for presenters /sessions for the 2020 RNZCGP /WONCA conference in Auckland, NZ in April 2020.
Submissions close 31st October 2019.

 

M.E. Awareness NZ has received a request to share this information...
.
RESEARCH PARTICIPANTS REQUIRED - ONLINE STUDY

My name is Wendy Wrapson and I am a Senior Research Fellow at Auckland University of Technology (AUT). I am researching how people with a complex medical condition maintain their social connections and social networks. This research is being undertaken with Professor Richard Siegert and Associate Professor Alice Theadom, also of AUT.

If you have a complex medical condition, would you help us by taking part in an anonymous survey? It will take approximately 20-30 minutes to complete.

We are defining a ‘complex medical condition’ as one that is persistent and ongoing, substantially impacts your life, and requires treatments and services from a variety of healthcare specialists.

Criteria (due to funding purposes)
• Adults aged between 18 and 65 years old who are living in New Zealand.

The survey is here https://tinyurl.com/y3qyudks

Thank you! Wendy Wrapson, AUT

 

It’s a shame that probably most of us won’t be able to fill this survey in... it requires you to have seen at least two medical specialists in the last 12 months for your primary illness.

The email contact is wwrapson@aut.ac.nz in case anyone wants to write to her about this. I’m considering it - if energy allows....

 

Apologies for only doing a shallow dive into the research documents. When will I ever learn!?

I did give her some initial feedback last night. But haven't heard back.