Australian government extending age for "crackdown" on DSP recipients

[Lillybelle]

Lets hope they dont listen to the UK crap and listen to their own researchers at Griffith uni who have been partially funded by the state govt as well as a couple of philanthropists interested in solving this problem who have donated heavily into several projects that griffith have been involved in on cfs/me. Maybe there is someone in the state government that realises if they wont people off disability then they are going to have to improve research into many chronic conditions and find good treatments. Maybe the reason behind the federal govts initiatives to try and improve medical research.

Currently Griffith are presenting information on cfs/me at the International Cytokine and Interferon Society Conference in Melbourne. http://www.cytokines2014.com/
http://www.griffith.edu.au/health/national-centre-neuroimmunology-emerging-diseases article down the bottom of the second link talks about this conference.

@heapsreal the reality is Griffith is majorly funded by the Qld Govt Smart State scientific govt funding to the tune of 4million.
The private funding you discuss is $800,000 and is an ANZ trustees grant. So not individuals but a trustee investment from Mason Research Grant of $800,00.

We need more public funding of research so people who are disabled can afford it. Privately funded clinics 99% of us will never afford. ME/CFS needs greater public awareness via PR/Social Media and user generated content in Aus.
Similar to MS. MS affects only 25% of those who are affected by ME yet their public awareness and public funding is 1000% of ME.

We need a Phoenix rising style blog in Aus which is searchable and has research the public can read and understand.

 

[heapsreal]

@heapsreal the reality is Griffith is majorly funded by the Qld Govt Smart State scientific govt funding to the tune of 4million.
The private funding you discuss is $800,000 and is an ANZ trustees grant. So not individuals but a trustee investment from Mason Research Grant of $800,00.

We need more public funding of research so people who are disabled can afford it. Privately funded clinics 99% of us will never afford. ME/CFS needs greater public awareness via PR/Social Media and user generated content in Aus.
Similar to MS. MS affects only 25% of those who are affected by ME yet their public awareness and public funding is 1000% of ME.

We need a Phoenix rising style blog in Aus which is searchable and has research the public can read and understand.

Dont quote me on this but i think the initial studies done at bond uni on the nk function tesing on bright cells was mostly privately funded, probably the reason the study was small to start with also, this was also a private run university which is out of the reach of the majority of australians, but its where the ball started rolling. So the rich arent totally evil??

After the bond uni experience, to me it seems like the private sector started the ball rolling and with some good results proven with this research, the public sector starts to kick the $$ in. To me it seems harder to get govt funding for a fresh unproven theory/idea and it seemed to get a kick along after some wealthy families who have had personal experiences with family members and chose to donate money towards research. I just dont think the govt would have put anything towards funding without some other private backing first to prove some of the research??This seems to be benefiting many of us indirectly??

I also think $800 000 coming from a single family, percentage wise, is a much bigger deal than $4m from the govt, which isnt a great deal in reguards to research and the available $$ the govt have towards health, but we appreciate every cent.

I dont care where the money comes from as long as the research gets done but if we can have more money donated by the private sector then its going to be less money taken from the tax payers i guess, which is limited, until cfs/me is fully proven with a diagnostic test.

I think when cfs/me is completely accepted by the govt then we will hopefully see more govt money put into research for us. The govt have the biggest bank account for this thing at the end of the day but they have to be accountable i guess for spending tax payers money??

Could you imagine the uproar of the public(and or which ever govt is in opposition) if they found out the govt put Millions of $$ towards cfs research without any prior studies like Bond uni. There would be a big uproar about tax payers money being wasted on all the rich yuppies with yuppy flu, even though the great majority are busted and broke. Imagine if Tony Abotts daughter had cfs/me??

I totally agree that we need more awareness and more funding, but i think awareness of cfs/me is hard to achieve or taken seriously as its still unknown by many and seen as a form of depression, so we really need alot of these smaller studies to find more physiological abnormalities in cfs/me to back up our cause.

I hate seeing the cfs/me awareness things of showing pictures of cfs/me people sleeping in bed all the time, people just arent going to get it. I would like to see some awareness type of thing mentioning how we are sick and mention the different abnormalites found in research so far eg low nk function, the increase in inflammatory cytokines, some of the different treatments that have helped some and how certain tests have improved with these treatments. leave the fatigue symptom alot further down the list of symptoms.

I think awareness with just mentioning the severe fatigue is probably negative awareness as everyone will comment on how tired they are etc. But if you said your nk function was almost no existent and you get different infections etc then say one has fatigue with this illness, then they may be taken more seriously???

Im not sure an australian version of PR would work, but i would prefer a world wide PR that we have and direct the aussie cfsers here. Many google searchers on cfs/me are dominated by PR, so it has a good world wide following. I think an australian version would end up being cut to pieces and severely restricted in what can be posted like a few sites in the past.

Thats all my views and opinions on it. We are still at the beginning of this illness, even though its been around for decades and longer??

 

[Lillybelle]

Dont quote me on this but i think the initial studies done at bond uni on the nk function tesing on bright cells was mostly privately funded, probably the reason the study was small to start with also, this was also a private run university which is out of the reach of the majority of australians, but its where the ball started rolling. So the rich arent totally evil??

After the bond uni experience, to me it seems like the private sector started the ball rolling and with some good results proven with this research, the public sector starts to kick the $$ in. To me it seems harder to get govt funding for a fresh unproven theory/idea and it seemed to get a kick along after some wealthy families who have had personal experiences with family members and chose to donate money towards research. I just dont think the govt would have put anything towards funding without some other private backing first to prove some of the research??This seems to be benefiting many of us indirectly??

I also think $800 000 coming from a single family, percentage wise, is a much bigger deal than $4m from the govt, which isnt a great deal in reguards to research and the available $$ the govt have towards health, but we appreciate every cent.

I dont care where the money comes from as long as the research gets done but if we can have more money donated by the private sector then its going to be less money taken from the tax payers i guess, which is limited, until cfs/me is fully proven with a diagnostic test.

I think when cfs/me is completely accepted by the govt then we will hopefully see more govt money put into research for us. The govt have the biggest bank account for this thing at the end of the day but they have to be accountable i guess for spending tax payers money??

Could you imagine the uproar of the public(and or which ever govt is in opposition) if they found out the govt put Millions of $$ towards cfs research without any prior studies like Bond uni. There would be a big uproar about tax payers money being wasted on all the rich yuppies with yuppy flu, even though the great majority are busted and broke. Imagine if Tony Abotts daughter had cfs/me??

I totally agree that we need more awareness and more funding, but i think awareness of cfs/me is hard to achieve or taken seriously as its still unknown by many and seen as a form of depression, so we really need alot of these smaller studies to find more physiological abnormalities in cfs/me to back up our cause.

I hate seeing the cfs/me awareness things of showing pictures of cfs/me people sleeping in bed all the time, people just arent going to get it. I would like to see some awareness type of thing mentioning how we are sick and mention the different abnormalites found in research so far eg low nk function, the increase in inflammatory cytokines, some of the different treatments that have helped some and how certain tests have improved with these treatments. leave the fatigue symptom alot further down the list of symptoms.

I think awareness with just mentioning the severe fatigue is probably negative awareness as everyone will comment on how tired they are etc. But if you said your nk function was almost no existent and you get different infections etc then say one has fatigue with this illness, then they may be taken more seriously???

Im not sure an australian version of PR would work, but i would prefer a world wide PR that we have and direct the aussie cfsers here. Many google searchers on cfs/me are dominated by PR, so it has a good world wide following. I think an australian version would end up being cut to pieces and severely restricted in what can be posted like a few sites in the past.

Thats all my views and opinions on it. We are still at the beginning of this illness, even though its been around for decades and longer??

Let me explain again @Heaps Real the Mason Research Grant is NOT from an individual it is from a massive corporate Trustee the ANZ trustees. http://bulletin.research.unimelb.ed...rogram-alzheimers-disease-and-chronic-fatigue
The GRant name is Mason, Mason is a Foundation is not a person its the name of the corporate research grant.
Dont confuse this with individual funding.
Bond Uni research has "no link" to the current funding of NCNED National Centre of Neuroimmunology and Emerging Diseases at Griffith.

The NCNED patient clinic is "solely" funded by the Government and allows patients who could never afford the proper diagnostic tests the chance to have them. This is a real breakthrough for patients.

Professor Sonya Marshall Gradsnik is a world class Researcher and a leader in ME/CFS Research with over 200 research publications in the field. She works with International ME Society, was an author in developing the International Consensus Criteria and is considered a leader in the molecular genetics origin of ME.

I saw her speak in Melbourne recently and was awe inspired and thrilled to have someone of her stature collaborating with the likes of Klimas, Peterson and Lipkin. Ive spoken in detail with the ME/CFS Society in Vic and they agree their greatest challenge is lack of awareness of the numbers who have this disease, the disability and the cost. They also shared the comparison with MS. Lack of awareness is a huge issue that can be addressed with an appropriate Public Relations and Communications Campaign, including advocacy with public figures and an appropriate Social media campaign.

Without the awereness ME/CFS will continue to go nowhere in acquiring the level of public funding required in this country for both research and Patient treatment. I for one plan on doing something about this!

I think the fact Jennifer Brea created her film via kickstarter has done much already for international awareness. Something similar in combination with a national effort of health professionals, advocates and public figures is required in Aus.

 

[heapsreal]

Let me explain again @Heaps Real the Mason Research Grant is NOT from an individual it is from a massive corporate Trustee the ANZ trustees. http://bulletin.research.unimelb.ed...rogram-alzheimers-disease-and-chronic-fatigue
The GRant name is Mason, Mason is a Foundation is not a person its the name of the corporate research grant.
Dont confuse this with individual funding.
Bond Uni research has "no link" to the current funding of NCNED National Centre of Neuroimmunology and Emerging Diseases at Griffith.

The NCNED patient clinic is "solely" funded by the Government and allows patients who could never afford the proper diagnostic tests the chance to have them. This is a real breakthrough for patients.

Professor Sonya Marshall Gradsnik is a world class Researcher and a leader in ME/CFS Research with over 200 research publications in the field. She works with International ME Society, was an author in developing the International Consensus Criteria and is considered a leader in the molecular genetics origin of ME.

I saw her speak in Melbourne recently and was awe inspired and thrilled to have someone of her stature collaborating with the likes of Klimas, Peterson and Lipkin. Ive spoken in detail with the ME/CFS Society in Vic and they agree their greatest challenge is lack of awareness of the numbers who have this disease, the disability and the cost. They also shared the comparison with MS. Lack of awareness is a huge issue that can be addressed with an appropriate Public Relations and Communications Campaign, including advocacy with public figures and an appropriate Social media campaign.

Without the awereness ME/CFS will continue to go nowhere in acquiring the level of public funding required in this country for both research and Patient treatment. I for one plan on doing something about this!

I think the fact Jennifer Brea created her film via kickstarter has done much already for international awareness. Something similar in combination with a national effort of health professionals, advocates and public figures is required in Aus.

I agree with what your saying about awareness but they have to get it right i guess. I dont really know the answer.

I understand the mason group is a trust.

The group from griffith including Sonya Marshall, started the cfs research at Bond uni initially and after the initial research then moved to griffith where facilities were much better. The actually nk function study i was in which was done over 18months was through bond uni. Prior to this they did a very small study using only a handful of patients and this progressed to the study i was involved in which had a large group of cfsers vs healthy controls.

Finding answers in their research i think will do alot more for awareness.

I know at one stage they wanted to do a spinal fluid study but couldnt get govt approval i think, then i think peterson had his stock pile of cfs patients spinal fluid that i think they then did research on. At that stage i think they had moved from Bond to griffith? Its a couple of years ago now when all this happened. I havent had much to do with them of late other then recieve the odd email.

I just hope they can keep their research going and funding continues.

 

[heapsreal]

Background
The Judith Jane Mason & Harold Stannett Williams Memorial Foundation (The Mason
Foundation) was established as a result of a generous donation in 2003 from Judith Jane Mason
(nee Williams).
The Foundation is named in honour of the benefactor and her father, Harold Stannett Williams
who was born in the last years of the 19th Century. While he was attending university, he
studied Chinese/Japanese writing to divert his mind from the medical dissections involved in the
medical studies he was undertaking. A holiday to the “Far East” intrigued him. He eventually
became a silk merchant and never returned to medicine. He lived a long and fruitful life. His
daughter describes him as “a most intelligent, wonderful and charitable man”. The memory of
his personal generosity is enhanced through this Foundation, created by Judith Mason to benefit
others in perpetuity.
ANZ Trustees Limited is the sole trustee of The Judith Jane Mason and Harold Stannett Williams
Memorial Foundation. The Foundation is a Private Ancillary Fund.
Through astute financial management, Judith Mason has taken an inheritance received from her
father in the early 1990s and grown it into a considerable sum that is beyond her personal
needs. As she has been very ill with Chronic Fatigue Syndrome, her needs are small. With the
establishment of this Foundation, she wishes to make a significant social contribution to medical
research in her own lifetime.
Areas of Focus
Two areas of need in the community have been prioritised for the Foundation’s funding. The
first is Alzheimer’s disease. The second, which is perhaps dearer to her heart, is Chronic
Fatigue Syndrome. This is due to the fact that Chronic Fatigue Syndrome is such a damaging,
yet poorly understood, illness and causes immense suffering. In recent years, prior to
establishing this Foundation, Judith Mason donated generously and regularly to these two areas
of research. Should research into these fields no longer be needed or able to be funded in
Australia then the trust will provide funding for other areas of medical research; other diseases
that affect the human brain has been nominated as the first such area.
Goal of The Mason Foundation
The goal of The Mason Foundation is to achieve enduring, positive impact in the areas of
Chronic Fatigue Syndrome and Alzheimer’s disease through funding medical research
principally into the causes, prevention and/or management of these diseases.

http://www.anz.com.au/resources/2/f....pdf?CACHEID=2fce2b804a47773887c8cfac93b0266b

 

[heapsreal]

Im just searching more into the Mason foundation, wow i think Judith Mason is extremely generous as she still lives very frugally and the money she has inherited is in a trust to help medical research for cfs and alzheimers. WOW how many people would give away a large inheritance. Very grateful for her generosity.

“I don’t believe that many people understand how debilitating Chronic Fatigue Syndrome can be. And as far as Alzheimer’s is concerned I cannot think of anything worse. To be alive but not having your brain working, to me this is terrifying. These are the reasons I am supporting medical research into Chronic Fatigue Syndrome and Alzheimer’s and I hope that my Foundation helps to produce cures. I have given almost everything I own to this Foundation (including my home), for my dog and myself can live frugally, for I have been very poor for the most part of my life, so I know how to cope with it. I feel that it is more important that this Foundation may help many people.” said Judith Mason, benefactor of The Mason Foundation.


The Mason Foundation was established in 2003 to support research into Chronic Fatigue Syndrome and Alzheimer’s disease. “The perpetual foundation is named after myself (as my sister says, this may encourage other people to do the same) and also in memory of my father, Harold Stannett Williams, who was a most charitable man and also the most helpful to people in trouble. (In fact my mother never forgave him for helping to save people who were trapped in landslides whilst I was being born.)”


ANZ Trustees is the trustee of The Mason Foundation and is one of the leading managers of charitable funds under management in Australia. The Mason Foundation is one of over 235 charitable foundations managed by ANZ Trustees.

http://www.me-cfs.org.au/news/office-blog/mason-foundation-research-grants/

 

[Snow Leopard]

http://www.abc.net.au/news/2014-11-...ecall-poor-performing-mps-survey-says/5882440

Survey here:
http://powerof1voice.moadoph.gov.au/

 

[Sean]

Joe Hockey confirms bigger budget deficit and admits there are more cuts on the way, including tighter checks on disability pensions and other welfare payments.

http://www.theguardian.com/business...-announce-further-cuts-in-myefo-budget-review

 

[SilverbladeTE]

The rise and deliberate support and push of xenophobia, crackdowns on freedoms, torture, American police armed like military (and in the military they'd get court martialled for the insane gung-ho way those damn cops behave and use their weapons), push to make prisons privately funded and use convicts as workers for corporations is how you begin concentration camps, etc etc.
Our nations: UK, USA, Canada and Australia, are headed into extremism.

And continuing exposure of the monstrous evil by those in power while government denies it....bah

 

[alex3619]

These sorts of conditions are necessary for the rise of extemism, but not sufficient. My understanding, and this could be flawed, is that the kinds of extremism we should be worried about arise when these kinds of conditions coincide with national catastrophe, whether it be natural or economic or whatever. Then extremist politicians and factions offer simplistic solutions, promising to fix everything, often involving scapegoating. They then get swept into power or get given extreme license if actually in power. At that point its often a good idea to become a refugee or take up dual citizenship and move to the other country.

Given our likely economic future though, this could indeed happen.

However these extremist views tend to run in cycles. Something usually happens and then there is a massive swing away from these positions. When such a swing does not occur in time is where the real issues start, such as the dominance of extreme nationalism.

 

[SilverbladeTE]

London housing "bubble" is about to burst, and world's economy is due to hit the toilet again

 

[Sean]

Our nations: UK, USA, Canada and Australia, are headed into extremism.

Certainly at increasingly serious risk of it.

At that point its often a good idea to become a refugee or take up dual citizenship and move to the other country.

Not an option for most patients, I would think. Certainly not for me.

 

[Sean]

including tighter checks on disability pensions and other welfare payments.

Coz, you know, one of the most scrutinised and disempowered groups in our society just isn't subject to enough scrutiny and disempowerment already.

 

[alex3619]

London housing "bubble" is about to burst, and world's economy is due to hit the toilet again

Yes, and more. If one or more of these is longer and deeper economic crisis than the last one, then things could get really bad. The political crazies will offer pie in the sky. We bought it last time, but this time it will be pies with wings that fly into your mouth.

 

[alex3619]

Not an option for most patients, I would think. Certainly not for me.

Its not an option for nearly all patients with ME, and indeed for most of the disadvantaged. That is part of the problem. Its usually the rich and middle class who make it out of a country.

One issue though is if the US debt leads to a complete crash of the US economy then the whole world will be affected. Integrated economies mean that if a crisis is big enough there is nowhere to move to.

 

[alex3619]

Coz, you know, one of the most scrutinised and disempowered groups in our society just isn't subject to enough scrutiny and disempowerment already.

This is part of the pie in the sky mentality. They might wind up spending big to make small savings, and by destroying the lives of the disabled the costs will move out to other parts of society, one way or another. As long as the government can save a penny in one department, it doesn't matter if the total cost to the country is a gold doubloon. But wait, didn't the UK solve this crisis?! They said so! Surely it wouldn't be costing the UK government an arm and a leg and be leading to a social crisis that will take a generation to recover from?

When ideology wins over reality everyone suffers, and the easy blame game begins.

 

[MeSci]

Maybe if official bodies (e.g. welfare support, councils) employed a few skint people to advise on budgeting, they would find a lot of savings without cutting any services or benefits.

Example: I recently signed up to my local council's online system, hoping to avoid the crazy waste of paper and postage that happens every time I make a query by email. I found that all I can do there is view my council tax bills, council tax support info and letters from the council about these.

But I was pleased to see replies to my last query appear online in a downloadable form.

I was less pleased when yesterday FOUR SEPARATE envelopes arrived from the council containing the same information, plus a bit more, comprising a substantial wad of paper.

The same kind of thing happens with other government departments and agencies, and health bodies too. Doctors' surgeries/offices collate patients' written notes into digital records, but when a patient asks for copies they print them all out instead of, say, emailing them or sending them on digital media.

How much money must they be wasting - our money - doing this?

 

[gregf]

I am barely able to comment any more on Australian politics.

When Julia Gillard became PM and Liberal advisor Grahame Morris was asked what
would be the Lib strategy, he replied "Kick her to death". And that is what they did.

The "ditch the witch" rallies were deliberate. It increases the number of death threats
and that keeps the (Labour) government too busy to fight the Libs.
It is a tactic the Republicans in the US use against Obama. It is deliberate
and it is disgusting.

We made Julia Gillard change to having a Carbon Tax. Call it 1 lie if you must.
The Libs have lied about everything. They lie on a daily basis.

They get away with it because they have control of almost the entire media.
If you don't have a functional media, then it's not a democracy.
All we have left is the ABC and they are killing that. No more Lateline.
As Quentin said "They're doing what Murdoch wanted".
Welcome to Fascist Australia.

Recent study of top 58 industrialised countries found the one doing the least
on Global Warming mitigation is Australia. Australia leads the world in the
fight to do nothing on Global Warming.

I try to hope that things may change when Murdoch dies, but I am not counting on it.

 

[Valentijn]

Its not an option for nearly all patients with ME, and indeed for most of the disadvantaged. That is part of the problem. Its usually the rich and middle class who make it out of a country.

I think I've been living with my fiance in the Netherlands long enough now to qualify for citizenship The disability situation here certainly is a lot less scary than in the US, so that would provide a nice sense of security if treatment doesn't help sufficiently, or if I have a relapse some day.

 

[*GG*]

, and world's economy is due to hit the toilet again

I doubt it, i've heard our economy is rounding the bend and things are getting better! Should be, Obama has been in office for 6 years now, and another 2 to work his magic!

GG