Supporting the WPI from Australia

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What gets me is how people can even say those things when it isnt known what CFS is. The statements should say "CFS is not A KNOWN: muscular disorder, a psychiatric disorder etc
It's certainly not a well thought out statement from a careful researcher. However, it's possible his actual talk was more nuanced. The slides may be giving an unfair impression of the actual speech.
 
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I was able to obtain sickness benefits in Australia after being diagnosed with ME in the 1980s.

I have no idea what the situation is currently since I've been fortunate enough to be able to return to work.

It's certainly true that most GPs are able to offer little help here, but I haven't been treated with the callousness that seems to be prevalent in the UK.
 

Sean

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The only big name over here i see a Wessely or CDC issue with is Lloyd.
Prof Ian Hickie (a frequent co-author with Lloyd) is not exactly our best friend either. He is a major mover and shaker in the psych world here, with strong influence on public policy, and who seems rather obsessed with depression as the underlying cause of all sorts of things. He is a co-author on some of the CFS definitions, including Fukuda.

Pretty sure he was the main influence on the draft report of the Australian Clinical Guidelines (1997), the one that was so blatantly biased towards the psycho-social model and which caused so much justifiable outrage at the time, and left a bitter taste in a lot of people's mouths. The final version of the guidelines (2003, I think,) was seriously re-written, and while not perfect, it was a vast improvement on the appalling draft version, which read like it had been written by Wessely himself.

Australian patients (only just) dodged a serious bullet there. Big thanks to all those who objected to the original draft and worked hard, against some stiff resistance, to get it changed in the right direction.

Not saying Hickie hasn't done good work elsewhere, like on the Beyond Blue project, a national initiative on discussing and treating depression, a serious problem in Australia. But he is pretty hardcore psycho-social, and is not to be trusted to give a fair interpretation of ME/CFS, IMHO.
 
M

Melodie

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I edited the post on the Lloyd talk. Thanks for picking that up Jon.

I understand the support groups do good work and have possibly saved lives.

If they are going to put articles up by proponents of psycho-social theories then they could attach a disclaimer and at least state their position. I noticed a little while back that mecfs vic manages to expose psych lobby articles on their site for what they are. If family or friends are going to search for info on ME I would like to feel confident referring them to a support site.

I did notice something that I think should have its own thread but I can't find how to start a thread. It's a good brochure on MCS for hospital staff. Cheers to SA support group and whoever else produced it. Here is the link:
http://www.mecfs-vic.org.au/sites/w...iles/Resource-2010MCSHospitalGuidelinesSA.pdf

If someone can put it on its own thread for more visibility please feel free.

For people who are not familiar with the history of mecfs and definitions etc in Australia, I think it would be good to have a wiki or at least a thread with a timeline similar to what Mindy did. Maybe a couple - one for outbreaks, one for political history, one for changes in definitions (is ME still in there as a stand alone diagnosis) and guidlines for doctors. Some of you have a lot of knowledge about this, it would be good to have it written down and in one place. Even if it was just small parts of the whole that could be added to when people have the time, inclination and energy - isn't that what wikis can be used for?
 

taniaaust1

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I edited the post on the Lloyd talk. Thanks for picking that up Jon.

I understand the support groups do good work and have possibly saved lives.

If they are going to put articles up by proponents of psycho-social theories then they could attach a disclaimer and at least state their position. I noticed a little while back that mecfs vic manages to expose psych lobby articles on their site for what they are. If family or friends are going to search for info on ME I would like to feel confident referring them to a support site.

I did notice something that I think should have its own thread but I can't find how to start a thread. It's a good brochure on MCS for hospital staff. Cheers to SA support group and whoever else produced it. Here is the link:
http://www.mecfs-vic.org.au/sites/w...iles/Resource-2010MCSHospitalGuidelinesSA.pdf

If someone can put it on its own thread for more visibility please feel free.

For people who are not familiar with the history of mecfs and definitions etc in Australia, I think it would be good to have a wiki or at least a thread with a timeline similar to what Mindy did. Maybe a couple - one for outbreaks, one for political history, one for changes in definitions (is ME still in there as a stand alone diagnosis) and guidlines for doctors. Some of you have a lot of knowledge about this, it would be good to have it written down and in one place. Even if it was just small parts of the whole that could be added to when people have the time, inclination and energy - isn't that what wikis can be used for?
great idea Melodie. I do think we should do that for Australia on the wiki. Australian CFS/ME history (and if other countries set up their own wiki history pages that would be good).
It may of varied quite a bit with different states .. all the CFS state support groups used to be all completely independant.

Also the SA government sponsored a education booklet to distribute to doctors on CFS/ME .. and the SA CFS association followed straight up by pushing the canadian consenus defination and overview for medical practioners and distributing that. The booklet i got from them has a 2005 copyright on it. I really dont know much about all the history thou but could find out for this state.

Can a group of us Aussies get together to do a a page on the history of CFS in Australia?? Who here is willing to give a hand with it and would like to help with researching the info for it?
 

taniaaust1

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Jonc .. i just found out also other research you could support. We have some excellent studies taking place here in Australia right now, i suggest to check them out.

http://www.newcastle.edu.au/research/expertise/135166.html
I also researched the Mason Foundation and they are one you may want to support, they are are putting A LOT towards good CFS/ME research funding.

http://www.mecfs.org.au/australian-research-institutions Check out the study at Bond University. I also checked out what CFS/ME defination they are using to choose partipants and they are using a good one in which includes post exertional malaise or fatigue (so not one of the crappy CDC definations).

"Posted: 28th October 2009
Bond University and the community will team up for a revolutionary research project aiming to unearth a faster diagnosis method for the debilitating Chronic Fatigue Syndrome (CFS).
The University has put out the call for 150 locals aged 20 to 65-years-old to take part in the world-first study, made possible through a $533,000 grant from the Queensland Governments Smart State program the first Smart State Grant received by Bond - as well as a $90,000 National Grant from the Mason Foundation to further investigate immunological dysfunction in CFS patients.
Initial findings from this research can be accessed here: Brenu, E et al (2010) 'Immune and hemorheological changes in Chronic Fatigue Syndrome', Journal of Translational Medicine, vol. 8, no. 1." (you can access the actual study from that other link above)

About the actual Mason foundation and their funding of CFS studies http://www.me-cfs.org.au/node/451 (these appear certainly worthy of getting donations from us, quite impressive organisation). I personally believe even when the XMRV stuff is sorted out.. that we still have some kind of predisposition towards it.. and with all the immunological studies the Mason foundation is funding.. they may well be the ones to actually find out exactly what it is. (their studies are already finding new things in CFS).