Ember
Senior Member
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Monday 07 May 2012
Media release from NZPA
Media release from NZPA
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Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Chronic Pain and Fatigue Trust Launches in New Zealand
- Thread starter Ember
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August59
Daughters High School Graduation
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This certainly appears to be a great thing. Better be careful though the UK psych's and the CDC psych's might think everyone in New Zealand is crazy!!!
This should work against the the psych's hopefully. This could really work well for some of the smaller countries whose fundings may be limited, where as this would give them a chance to collaborate to fund studies and may give a chance for some of the better minds in the field to not be so isolated if they don't prefer to be.
This should work against the the psych's hopefully. This could really work well for some of the smaller countries whose fundings may be limited, where as this would give them a chance to collaborate to fund studies and may give a chance for some of the better minds in the field to not be so isolated if they don't prefer to be.
ixchelkali
Senior Member
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Way to go, Kiwis! I think NZ has the most enlightened attitude toward ME/CFS of any country in the world (although Norway is catching up).
August59
Daughters High School Graduation
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- Upstate SC, USA
I wonder if the interest is being peaked by the impact this and the very similar diseases are having on the economy throughout parts of the world. An it is certainly not going away on it's own
alex3619
Senior Member
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I really hope this not only works but can be shown to be highly successful and cost effective. It will be a great example to show a better approach than CBT/GET. One thing I am not aware of is what treatments they propose though. Reading some background after a search, they are interested in biomarkers and setting up a blood bank for research. It all looks interesting.
If this works and can be shown to work it may prove to be the starting point for similar initiatives elsewhere. No matter where you are you can point to New Zealand and say: they are doing it, and do it well, why aren't we? I can't wait until I can contact my government and ask why we are not doing as much. Thank you to everyone in New Zealand who has helped make this happen.
One thing that is important though, if they can they should do some economic modelling to see if they can show its more cost effective than alternatives.
The worst current alternative of course, from a public cost perspective (though insurance companies may benefit) is CBT/GET. Spend all that money and wind up with patients with decreased functional capacity? Thats negative effectiveness - the public purse is paying to make things worse.
Bye, Alex
If this works and can be shown to work it may prove to be the starting point for similar initiatives elsewhere. No matter where you are you can point to New Zealand and say: they are doing it, and do it well, why aren't we? I can't wait until I can contact my government and ask why we are not doing as much. Thank you to everyone in New Zealand who has helped make this happen.
One thing that is important though, if they can they should do some economic modelling to see if they can show its more cost effective than alternatives.
The worst current alternative of course, from a public cost perspective (though insurance companies may benefit) is CBT/GET. Spend all that money and wind up with patients with decreased functional capacity? Thats negative effectiveness - the public purse is paying to make things worse.
Bye, Alex
I think public perception of the disease is a big factor. New Zealand had an ME outbreak that resulted in it getting its own name there. And unlike in the US, UK, and the Netherlands, there don't seem to be any political or psychological factions fighting to suppress knowledge of its existence.
Even in the Netherlands, where the Nijmegen group is very active in trying to minimize ME, I think every ordinary (non-doctor) person that I've mentioned it to has already heard of it, has a vague idea of what it is, and knows it's a serious physical disease. If I mention how the Nijmegen group treats it, they're shocked!
And I think the difference in the attitude of ordinary people toward ME in the Netherlands versus the UK might be primarily due to Q-Fever outbreaks. There have been several years recently where a couple thousand people get Q-Fever, and a large percentage of them end up with ME/CFS symptoms. So people are more aware that it exists, and that it can be caused by serious (and real) illnesses.
Even in the Netherlands, where the Nijmegen group is very active in trying to minimize ME, I think every ordinary (non-doctor) person that I've mentioned it to has already heard of it, has a vague idea of what it is, and knows it's a serious physical disease. If I mention how the Nijmegen group treats it, they're shocked!
And I think the difference in the attitude of ordinary people toward ME in the Netherlands versus the UK might be primarily due to Q-Fever outbreaks. There have been several years recently where a couple thousand people get Q-Fever, and a large percentage of them end up with ME/CFS symptoms. So people are more aware that it exists, and that it can be caused by serious (and real) illnesses.