Researcher Interactions Video: Science for ME Q&A with Dr Heidi Nicholl, Emerge Australia, Sept 2019

Andy

Andy

Retired committee member
In this video Q&A, Andy from our forum (https://www.s4me.info/) talks to Dr Heidi Nicholl, CEO of the patient organisation Emerge Australia (https://emerge.org.au/)

In this video, Dr Nicholl talks to us about:
The work of Emerge Australia at 06:22
The biobank and registry funding award at 14:50

Links:
Article on the biobank, https://emerge.org.au/australian-me...which-includes-emerge-australia/#.XYCoapNKjUI
Emerge Aus Media and Research Digest, https://emerge.org.au/category/the-emerge-media-and-research-digest/#.XYCoz5NKjUI

Copy and paste
Code: 
https://youtu.be/1Ns84DM_S4o
 
Thanks Andy. I'm impressed how eloquent you are, how you focus on asking questions with no hint of an opinion, and let the participant feel comfortable and answer fully. I feel like I get to know the people behind the papers, presentations, and websites, and their work a bit better.

Who is your next victim? ;)
 
wigglethemouse said:
Thanks Andy. I'm impressed how eloquent you are, how you focus on asking questions with no hint of an opinion, and let the participant feel comfortable and answer fully. I feel like I get to know the people behind the papers, presentations, and websites, and their work a bit better.
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Thanks for your kind words. :) I have to say I don't feel I'm very eloquent, I feel that I struggle to find the words to express what I want to say, but I get there in the end, and generally people seem to know what I'm asking about.

I do see these as a means for the patients to get to know the people behind the work, so my intention is for them to be quite relaxed and informal - currently I have no intention for them to be more of an interrogation... :)

wigglethemouse said:
Who is your next victim? ;)
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I'm working on a few new possibilities (Mike VanElzakker and the two UK exercise researchers who are working with Harvard, Philip Atherton and Paul Greenhaff, as two examples), and I'd like to think that there are good chances of follow-up Q&As with those who I've talked to already at some point in the future but nobody I can name right at the moment.
 
Excellent interview - again. Thanks Andy.
Heidi seems to have an astonishing amount of energy. Glad she's using it to get things moving in the ME field. Given how slow things usually happen it's impressive Emerge have managed to put together a GP education programme and a biobank on the way in a relatively short space of time.
 
Ravn said:
Excellent interview - again. Thanks Andy.
Heidi seems to have an astonishing amount of energy. Glad she's using it to get things moving in the ME field. Given how slow things usually happen it's impressive Emerge have managed to put together a GP education programme and a biobank on the way in a relatively short space of time.
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It does put UK charities in a relatively poor position comparatively?
 
Amw66 said:
It does put UK charities in a relatively poor position comparatively?
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Perhaps. In regard to the Australian biobank, the fact that they are getting support from the UK ME/CFS Biobank, something supported by a number of UK charities since its beginning, means that they are able to set-up that much more quickly.

And having a private philanthropist organisation willing to invest sums of money into ME/CFS research/biobanking is a big difference - I'm not aware of anybody willing to do that in the UK.

And with the GP education, perhaps the smaller population size, and therefore bureaucratic systems, in Australia made getting it in place that much easier? I'm obviously just speculating there, I don't know what is involved in setting it up in either country.
 

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MyalgicE said:
@Ravn

Emerge were given responsibility more than 7 years ago to update Australia’s CFS guidelines ago, according to Australian authorities, and they’ve let Australians down badly here.

https://meaustralia.net/2019/07/01/...see-people-with-me-denied-disability-support/
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So is it your impression that things are improving now that Heidi is CEO? I believe she's a fairly recent addition?

Reading between the lines, both on S4ME and elsewhere, I get a sense that there is some historical bad blood between some Australian ME patient organisations. I could be completely wrong; I know nothing about it, nor do I have the energy to take an active interest in it. But I think, whatever the mistakes of the past, that when there are new people in charge who appear to have good ideas and the drive to see them through they deserve to be given a chance. More than that, they should be actively supported to have the best chance of succeeding, for everyone's benefit.
 
I agree @Ravn. I don't know what opportunities past versions of Emerge may have let slip, but I do know that the knowledge and the political environment around ME/CFS in Australia in 2013, when my family became ill, was pretty dire. A lack of effort on the part of Emerge, if indeed that was so, was probably the least of the hurdles to progress.

Perhaps the work of Emerge in those years, and of course of everyone else who advocated in large and small ways in Australia and elsewhere, has resulted in an environment where this current version of Emerge can operate more effectively.
 
The historical bad blood between the states was before my time.

ME Australia has worked closely with Emerge and personally I’ve volunteered for them for years. Heidi asked ME Australia to formally join forces with Emerge (our members preferred to stay independent).

It was ME Australia who invited Emerge to the meeting with the Health Minister to secure $600,000 in funding. ME Australia also got the Health Minister to speak at the Emerge conference via video.

Changing of guidelines is urgently and desperately needed. It is one thing we can do now that will immediately improve the lives of newly diagnosed - preventing harmful treatments - and those living longer with the disease because it will remove hurdles (like being prescribed CBT/GET) before being able to access disability payments, support and NDIS.

It’s also resulting in many people being misdiagnosed. A 2016 Australian study found 25% didn’t have ME or CFS, their symptoms were explained by something else.

If they are doing GP education, will that work if it conflicts with the government and RACP guidelines?
 
Not my country but it does seem an odd way to approach it if the option to rewrite those guidelines is still on the table why wouldn’t getting that sorted be top priority. Although there is also a case for getting some quick wins to increase awareness. Maybe work is going on in the background to tackle the guidelines that hasn’t been publicised yet. Hopefully your connection with EMerge gives you the chance to press the case for getting this addressed @MyalgicE
 
When I lived in Australia and was still naive and unduly hopeful, I contacted whichever organisation it was that was in charge of the guideline (RACGP?), pointing out the problems with PACE and GET. The reply was along the lines of 'even if PACE was wrong, there are lots of other studies that found that GET is good. The gold-standard Cochrane report on this clearly shows that GET is helpful. End of story.'

So, maybe now that Cochrane have acknowledged that the current report is flawed and there needs to be a new one, that will finally allow for some movement on the Australian guideline.

Small edit for clarity.
 
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MyalgicE said:
Changing of guidelines is urgently and desperately needed.
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Guess we all agree on that!
In that recent big review Australia did on ME, can't recall the name right now, I submitted that as a short term stop-gap measure CCC or ICC should be adopted in Australia. My reasoning was that the current guidelines were too bad to remain in place until new, better ones could be developed. Not sure anybody listened to me though...
 
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