News from Aotearoa/New Zealand and the Pacific Islands

 
RoseE said:
M.E. Awareness NZ has some other news to share...

Dr Richard Medlicott, currently the Medical Director of the Royal NZ College of GP’s, is partnering with M.E. Awareness NZ to raise funds for evidence-based M.E. education opportunities for GP’s. Richard has extended family members with ME, and this family is very active in advocacy for ME in NZ.

Richard's used his resignation email to announce this fundraising project, and this email reached every GP in New Zealand this week! He is using his participation in The Pioneer Mountain Bike event in December 2019 to challenge GP’s across the country to donate to this cause. The fundraising event has also been announced in the RNZCGP newsletter and the NZ Doctor online magazine.

fyi additional info
  • To check out the campaign (Richard is urging GP’s to get on board as the main contributors!) view https://givealittle.co.nz/cause/doc-pioneers-for-me
    Note: The page still shows as under moderation - as we get our act together and become a registered charity.
  • Our post on our public facebook page

Edited: to tidy up the external links.
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Wow. That's pretty meaningful. We all painfully know how risky it is to publicly support ME research. Very courageous.

Richard has extended family members with ME
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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.
 
Ravn said:
Going from bad to worse: big NZ GP conference happening in Rotorua this week. Speakers include the three we've been discussing here: Chris Kenedi, Kristy Bolter and Megan McEwen. As if that wasn't enough there's also Mel Abbott (Empower, a version of the Lightning process). http://www.gpcme.co.nz/speakers.php

Can someone please stop these people, with or without the help of paper circles, just STOP them!!!

According to the conference website (http://www.gpcme.co.nz) there'll be another event in Christchurch in August, this one without the first three but with Mel Abbot who has 3 sessions, one of them for nurses (http://www.gpcme.co.nz/south/programme.php).

[Posted this in both the "News from New Zealand and the Pacific Islands" and the "Video clip of a Australasian conference on MUS, mentions ME" threads.]
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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!!
 
Daisybell said:
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!!
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Her BP, however, may well have been elevated after the telling off you gave her ;). Good on you for putting it so clearly.
 
Trish said:
Gold star to Daisybell for having the presence of mind to make such a good response to your doctor. I hope it makes her realise she has been sold a pile of crap, and she won't recommend this to others.
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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
...we want to talk about our history and what you have told us, where we are today and where we are going.
We have attached a copy of our presentation to this email, so you will know what we will talk about and what we will ask you.
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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...
 
Possibly of interest

https://www.researchgate.net/profil...9-Refereed-Conference-Proceedings.pdf#page=17
Improving clients’ lives through an exercise prescription program
LYNETTE D. HODGES
ANDREW J. MARTIN
MALCOLM REES
Massey University, Palmerston North, New Zealand

The benefits of Work-integrated Learning (WIL) programs are well documented in terms of the tripartite outcomes for students, workplace organisations and the university. Maximising authentic WIL experiences for exercise science students and developing competencies in this context (Fleming, Martin, Hughes & Zinn, 2009) requires organizational, pedagogical and interpersonal support (Clarke, Litchfield & Drinkwater, 2010), as well as being responsive to student interests to meet the needs of industry and employing groups (Reddan & Harrison, 2010). Enhanced self-efficacy, career development, and employability outcomes have been highlighted for exercise science students through participation in WIL programs (Redden, 2015, 2016, 2017; Reddan & Rauchie, 2016). However, the benefits for the clients of such programs has not been documented. Sealey et al., (2015) reinforced the importance of enhancing and sustaining placement supervision in such clinical settings to ensure safe practice and competency based assessment focused on effective communication, clinical and procedural skills, and technical proficiency (Naumann et al., 2014).

BACKGROUND AND CONTEXT
This paper examines how a WIL program within a Bachelor of Sport and Exercise major in Exercise Prescription and Training has benefitted students and clients alike. Students exercise, test and train clients impacted by non-communicable diseases including cardiovascular, neurological and/or muscular skeletal problems which substantially limit their physical activity, for example chronic fatigue syndrome, multiple sclerosis (Hodges, Nielsen & Baken, 2018) and spinal cord injury, in a supervised clinic.
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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
 
Seems pretty open to bias - those who use forums and facebook are most likely to see the alert to the study.

Good idea @Daisybell. Those of us who have no specialist to go to or other medical services there to support us probably need social networks within our disease community more than those who do. I might try to send a few sentences too.
 
From the survey:

We define a complex medical condition as one that is persistent and ongoing, substantially impacts on your life, and requires treatments and services from a variety of healthcare specialists (excluding your GP).
To clarify, we give examples:
  • First example - You see (or have seen within the last 5 years) both a rheumatologist and a cardiologist in relation to an ongoing medical condition that has a substantial impact on your life. You can answer 'Yes' to this question. (Note: You can also answer yes to this question if you see more than one specialist because you have other medical conditions or health risks which are related to your primary medical condition. For example, an individual with diabetes may see an endocrinologist but may also see an eye specialist because of the possibility of eye problems from diabetes.)
  • Second example - You see (or have seen within the last 5 years) a rheumatologist and your GP in relation to an ongoing medical condition that has a substantial impact on your life. You would need to answer 'No' to this question as you only see/have seen one healthcare specialist.
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There's an assumption that if your medical condition requires treatments and services, you will receive those treatments and services. There's quite a lot wrong with the assumption, and not just for us.

For those of us within 5 years of our diagnostic process, we probably do qualify for the survey.
 
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.
we may get some replies [on our post] about how people with ME do require treatment and services from a variety of healthcare specialists, but they are unlikely to get this support. I trust you can bear with that sort of commentary. ME is a complex illness, that is not understood well yet, and specialists often don't know what to do with us. And the health system is not geared up to support us either.
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