To the Aussies

[susan]

I have ordered my own saliva tests from Pathlab in Melbourne....they do heaps of stuff and I believe my adrenal hormone results were on target

 

[taniaaust1]

Tania that doctor who was fined was an Australian doctor, he treated not just mecfs but other serious conditions. Am not sure he would want any publicity about it so I wouldnt put it up on the wiki. just mho.

Pity as it sounds like he would of deserved the support of the CFS communities just like the other doctors who have been fined elsewhere.. are being supported by CFS patients just like Sarah Myhill is and those other Belgium doctors. Patients should be complaining about the bad treatment of these doctors who support us. Has his case been publically posted in like any like official news articles or whatever?? (if not.. maybe we could mention it but just use his name initial and just put what state it happened in, to not indentify him).

You buy the tubes and then post the saliva samples. I dont know how accurate it is given its in the post for a few days. I was told testosterone is less stable than the others. Does anyone know if this is worth the money if you cant get a gp to order the saliva tests. They didnt have thyroid hormones or aldosterone the last time i looked, has anyone heard of saliva tests for these?

i hadnt heard about those tests.. only saliva testing for cortisol.

 

[Melodie]

Heapsreal, i dont know much about testing. What you could do is copy the methodology from the bond study article "Assessment of Nk lymphocyte activity" as it is briefly described and email QML labs asking if the assay is performed exactly the same. I have asked labs on a few occassions technical questions and they were happy to answer even though they knew i was a patient. The bond study said that the samples were analysed within 6 hours of collection.

It will be interesting to get the results from your second bond test to compare with the others. (and if nk function is lower when feeling well as a pwme,).EditHeaps, my brain is on strike today and cant hold the variables in my head, about the famir affecting the nk brights etc.)

 

[taniaaust1]

Regarding what has happened to date, I did a bit of poking about on the net the other day and came up with the following:

1) Funding for CFS research from the National Health and Medical Research Council (NHMRC) from 2000 - 2009 and projections for 2010 -2012.
Download the spreadsheet from http://www.nhmrc.gov.au/grants/dataset/issues/chronic.php
I'm not sure, but I think that this group is pretty much it as far as federal government funding for CFS research goes. There may be other research funded by private organisations or other organisations that is not listed. The Bond University one doesn't seem to be there.

As you can see, the funding for CFS research is woeful at an average of $250,000 per annum. Most of this seems to be going to the work of Andrew Lloyd and someone else called Janet Taylor from the University of NSW. Cort has listed elewhere on this forum a comprehensive list of Lloyd's work. I think some of it has been good, but the problem for us is that he has taken a position against XMRV from early on. Here is a link to Janet Taylor http://www.neura.edu.au/research/themes/taylor-group!

megan.. i added this stuff you said onto the Advocacy page http://www.forums.aboutmecfs.org/sh...:Australian+Advocacy+Contact+List&redirect=no It probably could of been put far better then i worded it so if anyone wants to make what i said sound better (mostly copied megans words about it all from her post), go ahead.

 

[heapsreal]

im not real confident on saliva tests as some i did were very inaccurate even though i followed their instructions, i did a cortisol and testosterone, dhea test. cortisol came back normal but my testosterone levels came back higher then a russian weightlifting prior to the olympics, so no way could it have been that high. I then had a blood test of these hormones and they were all different, my testosterone blood test was within a normal range, so this experience with saliva testing hasnt been positive for me. These tests were done by a approved victorian recommended by my doc

 

[taniaaust1]

im not real confident on saliva tests as some i did were very inaccurate even though i followed their instructions, i did a cortisol and testosterone, dhea test. cortisol came back normal but my testosterone levels came back higher then a russian weightlifting prior to the olympics, so no way could it have been that high. I then had a blood test of these hormones and they were all different, my testosterone blood test was within a normal range, so this experience with saliva testing hasnt been positive for me. These tests were done by a approved victorian recommended by my doc

Im interested to know what lab it was who gave you the results.

 

[taniaaust1]

http://www.forums.aboutmecfs.org/sh...:Australian+Advocacy+Contact+List&redirect=no Ive put up an area of where Australian Advocacy is needed onto the page (very generalised not going into all the percise details).. i didnt specifically write about XMRV testing there as that is currently still under research and needed research.. the tests need researching along with everything else. there is so many different areas in CFS in with are needing medical research.

There is another Australia CFS area needing advocacy.. i cant thou remember all the details of it thou but it was to do with people with chronic illnesses in which there was heat intollerance getting umm it may of been a state government debate ?? or discount, so anyway, having the cost of electricity cheaper.
They are apparently doing something like this in one Aussie state but not all of them . I know the MS society (it could of been the SA one).. a couple of years back?? was trying to get that happening where i are (to get what other states were getting). if anyone knows the details of all this.. please provide, so i can get my head around it and put something about this area onto the Advocacy area

Are any of you getting this chronic illness (heat intollerance) electriticity discount? Ash.. if you are about, do you know about this or can give me any info on this?

is there any other areas on that list which anyone can think of which are needing Advocacy in Australia??

 

[Melodie]

Are any of you getting this chronic illness (heat intollerance) electriticity discount? Ash.. if you are about, do you know about this or can give me any info on this?
?[/QUOTE]

NSW medical energy rebate:

http://www.industry.nsw.gov.au/energy/customers/rebates/medical-energy-rebate-questions

 

[heapsreal]

hi tania, the lab i used for saliva was ARL pathology, i dont think there a bad organisation as such put i think saliva testing was inaccurate in my case. hope this helps.

 

[Melodie]

Victoria Medical Cooling Concession brochure:
http://www.dhs.vic.gov.au/__data/assets/pdf_file/0005/307391/medical-cooling-concession-brochure.pdf

Victoria Medical Cooling Concession Application Form:
http://www.dhs.vic.gov.au/__data/as...dical-cooling-concession-application-form.pdf

Note: Please phone them to see if this form is current.

 

[Megan]

megan.. i added this stuff you said onto the Advocacy page http://www.forums.aboutmecfs.org/sh...:Australian+Advocacy+Contact+List&redirect=no It probably could of been put far better then i worded it so if anyone wants to make what i said sound better (mostly copied megans words about it all from her post), go ahead.

Thanks taniaaust1, I am just getting the hang of this wiki business, I just added some more comparative statistics to that page, you will see how seriously our illness is taken when you look at what other illnesses get.

 

[taniaaust1]

Thanks taniaaust1, I am just getting the hang of this wiki business, I just added some more comparative statistics to that page, you will see how seriously our illness is taken when you look at what other illnesses get.

Cool ..glad you are working it out. Glad too to see the funding amounts, so people can see what is going on. My computer being so slow (dial up), I was unable to load the spreadsheets to see.

Im off to bed.. goodnight.

 

[Ash]

Are any of you getting this chronic illness (heat intollerance) electriticity discount? Ash.. if you are about, do you know about this or can give me any info on this?

Queensland Medical Cooling/Heating rebate

bummer about it is a GP can't sign off, you need a specialist & with no specailty looking after ME/CFS, especially in hicksville I can't get it

 

[taniaaust1]

Queensland Medical Cooling/Heating rebate

bummer about it is a GP can't sign off, you need a specialist & with no specailty looking after ME/CFS, especially in hicksville I can't get it

thanks.. i'll put this info some time onto our main CFS Australia page

 

[taniaaust1]

Australia wiki update

Megan has been busy fixing up links which werent going,on the Advocacy page.. we think they are all working now.

Ive been adding Aussie CFS doctors to the good doctor list (which at some point now will be changed to just Aussie CFS doctors),

also CFS researchers wiki page i set up will be at some point changed to an Aussie CFS researchers page http://www.forums.aboutmecfs.org/sh...+and+Treatment+Review+Project:CFS+Researchers

i had originally created that page to be a world wide one but on further thought, i think i'll change it to be just a Australian CFS researcher page as we probably have plenty of those who are in australia. Other researchers can have their own pages.

For those who dont know .. Melanie is going to link all these Aussie pages at some point into an Australian CFS book on the wiki.

Any others who wish to add to any of these Aussie pages please do. Lots of work to do there if you are bored.

 

[Megan]

For those who dont know .. Melanie is going to link all these Aussie pages at some point into an Australian CFS book on the wiki.

Good idea!

Only thing is now I'll have to start learning how to use a wiki book!

 

[taniaaust1]

crap i lost my post.

lol Megan.. if you work out how the book works, share it with Melonie and i, we havent worked out how to fix up Melonies attempt yet and im not even game to touch it! LOL. She was a very brave girl!
.....................
Ive started to put in Australias CFS definitions, I dont know what is going on thou with the other states.. if they took the same stance as SA did back in 2005 or even if things have stayed the same since then or been changed again since. If anyone knows what defination is being used in their state, or if everything is all the same now.. please share.

I've added as far as I know about the definitions here http://www.forums.aboutmecfs.org/sh...+Project:Australian+CFS+ME+History+and+Events
........
also while researching a CFS doctor today, i stumbled across the history of the SA society (what luck!) so will link that up to the page soon. They've been going a long time.. formed the society back in Feb 1986 by the looks of it. (the big Tahoe outbreak in America.. one Cheney is famous with.. was in 1984)

 

[gregf]

Well well, the gang's all here. Tania, Heapsreal, Ash, Tony...

Hello to all the other Aussies here. I'm Greg. I have had ME for 5 years and do online advocacy for ME.

In regard to the name, the best title to use whenever possible is ME (Myalgic Encephalomyelitis).
This was the original name in the 1950s and is the name used by patient advocate groups around the world.

The name Chronic Fatigue Syndrome was selected by the CDC in the 1980s to go along with their belief that our disease is psychiatric. It is pushed by Wessley and the pyschosocial model supporters. The other problem is that the medical community has been reading papers for 20 years that CFS is psychiatric, so if you use it to a medical professional, you are associating yourself with 20 years of psychiatric papers.

The only reason to use CFS is for legal reasons when confronting the CDC, so they can not avoid legal liability for the greatest medical abuse scandal of modern time.

When we need to cover both, we say ME/CFS. It looks like we have got the WPI to understand this. The psychiatric supporters are trying to get CFS/ME as the compromise term, so using that is helping them.

I understand Tania's reasons for liking CFS and sympathize with that. Hi Tania.

Greg.

 

[ukxmrv]

At some stage ANZMES stopped being a Australia New Zealand society and became just a NZ one?

Here's a comment to a branch one in Victoria

http://catalogue.nla.gov.au/Record/2804838

 

[taniaaust1]

ohhh LOL... CFS.. picking on me Greg. (i DO NOT like that term!)

Why arent you in bed.. its 2.00am in the morning you know!

Welcome here

Good night.. (gotta leave for the hospital in 6hrs, more useless non CFS oh crap non ME!! tests which i know will sure nothing).