Australia’s Health Minister Greg Hunt announces $3m for medical research

So does this mean that the 3 million isn't fully guaranteed at present.... That this could change depending on election outcome... Sigh.. @BruceInOz @Simone

 

I really have no idea. But I think that this is a plausible speculation.

 

No, it’s real, not an election promise!

 

From Emerge, a reply on their Facebook page:
our understanding is that this research money has gone into the upcoming budget. This budget is 'just another' budget from the ruling coalition. Budgets get passed and then are inherited by the next government. In our view it is absolutely safe regardless of changes in next election.

 

Yep, it’s in the budget, so it’s money in our hands! Not just an election promise!

 

Health Minister announced funding earlier this year, then next, the advisory committee’s report on its way to the Research Council CEO. Now, here’s when funds will be distributed:
https://meaustralia.net/2019/05/19/research-council-expects-to-fund-me-and-cfs-projects-in-2020/

We are seeing one advisory committee member angling for more funding for biopsychosocial research for ‘chronic fatigue’ which he calls MECFS - all the more reason to avoid that nebulous term in Australia. Eeeek.
https://meaustralia.net/2019/05/16/...or-more-biopsychosocial-research-into-me-cfs/

There’s only been $1.6m spent over last 20 years and he’s received almost all of it.

 

Given the way this week's election turned out, sadly I think it's guaranteed that whatever portion of that money is actually spent will be mostly wasted on psychosocial fluff. It takes enormous courage to go against the current paradigm and, well, courage doesn't win votes lately, selfishness does.

Even whatever little money is spent is entirely aimless and has no coherent plan, strategy or leadership. NIH makes that case better than anyone. It's the best we ever had and it's still a near complete waste because there is simply no will.

Elections in the past few years have been extremely bad for us. Nobody thinks about the consequences of austerity on the sick when they vote. There was some momentum and it just keeps getting blown off. Windows of opportunity are short and it's passing us by once more, outside of private efforts anyway.

We're in this by ourselves. I think it's worth continuing to pester governments and medical authorities so they are fully on the record about not giving a damn but when it comes to funding, I think the efforts are simply wasted and would be better spent elsewhere. We tried. Time for a different approach. Political pressure only works with support and we don't have any.

Sorry if this sounds negative but it's impossible to deny at this point. The money will not come from governments, they couldn't care less and no one will make them as long as they have medical advisors telling them to ignore us entirely. I think efforts would be better spent trying to get private funding involved.

 

While i agree that we are nowhere near getting real money i don't think its a lost cause. If we stop trying we will certainly fail, if we keep pushing we will eventually succeed but that success will take time and have a huge cost.
One could have made the exact same argument over getting the PACE data, i can only imagine what it must have been like going to court against an adversary with very deep pockets and power and influence but we did win. Alem paid the price in his health unfortunately.
If the AIDS crowd accepted defeat they would not have the treatments they do today.

Its demoralizing, its painful, its time consuming, it health stealing, i will not deny any of these things.

 

I agree

But what we do with todays reality determines the future.

Someone once said whether you believe you can or you cannot your correct. This is not totally accurate, but if you give up then you guarantee failure, if you keep your eye on the prize and find a way to make it happen then you win.
You may not ultimately win or you may only partially win or you may win at great cost. Not to mention opportunity costs inherent in this. These are all things to keep in mind especially for people with this disease but if Alem had given up we would not have David Tuller's hard hitting articles proving PACE was a fraud. This has not undone decades of neglect and scorn but the tallest tower begins with a strong base.

 

Surely Lloyd won't get it all....jeez I'm so sick of this blasted Rollercoaster

 

I mean it strictly about funding. Pressure must be constant on every other area, but asking money from governments has been a failure so far, as without a coherent strategy and no leadership whatsoever, either it's mostly wasted, or completely wasted on pseudoscience. Every other area other than training is potentially useful.

Educational material is probably best with direct contacts as well, as governments are more likely to go with the usual self-proclaimed experts who are super enthusiastic about training others on their belief system. But there has been some success so at least it's not completely wasted, it's just likely to backfire but even that can be useful as it requires the misleading information to be spelled out more clearly, less implied, and thus more challengeable in the future as it shows how weak and unreliable the evidence they use to justify their opinion.

 

Any goal not yet accomplished will look exactly like this. We could get untold millions of dollars tomorrow yet today it looks like a total failure. At one point i'm sure HIV looked like this, money, no recognition and plenty of discrimination.
I have noticed OMF seems to be going this route, they seem to be putting a good deal of their resources on finding a diagnostic test and perhaps think they need to prove its real to get NIH funding. Just a theory.
MS probably got zero till it was proven physical and as someone posted in another thread there was a congressional writ related to funding it.

Backfiring is definitely a risk. But playing it safe has direct costs as well even if they require some wisdom to see.

 

There was money promised for endometriosis research over a year ago and yet there is still no plan on how that is going to be spent. https://www.theguardian.com/comment...endometriosis-research-were-yet-to-see-a-cent

We cannot assume anything.

 

+1

 

https://www.health.gov.au/ministers...open-for-research-on-chronic-fatigue-syndrome