Griffith Uni Australia new press artivle

[Allyson]

Good article one ME research in a major TV news cast

please click on link - the stations and papers cound tht clicks to guage interest in a topic

I always wonder where ethey get the figures from - tey say 250 000 affected with ME /cfs in austalia? How accurate is this I wonder.

http://news.ninemsn.com.au/health/2013/05/15/15/04/aust-bid-to-solve-chronic-fatigue-riddle

cheers,



Ally

 

[Sasha]

Good article one ME research in a major TV news cast

please click on link - the stations and papers cound tht clicks to guage interest in a topic

I always wonder where ethey get the figures from - tey say 250 000 affected with ME /cfs in austalia? How accurate is this I wonder.

http://news.ninemsn.com.au/health/2013/05/15/15/04/aust-bid-to-solve-chronic-fatigue-riddle

cheers,



Ally

Done - always good to click through and give a good story the traffic.

Interesting what they say about having access to severely affected patients.

 

[Simon]

She is delighted the university and the Gold Coast Hospital and Health Service have set up a world-leading National Centre for Neuroimmunology and Emerging Diseases, which facilitates efficient communication between researchers, doctors, nurses and and patients.

She says the close proximity of the centre to the hospital is the only model internationally where researchers have direct access to severely ill bedridden patients.

Now that it very interesting indeed, since this group has not been studied - while for many other conditions the most severely-affectected patients are of seen as of great value to researchers as potentially they have the 'strongest' signal.

However, there may also be confounding issues with a highly-deconditioned patient group as long-term bed-rest in healthy people does lead to many changes in the immune system (documented by NASA and others looking at long-term effects of bed-rest as a model of weightlessness in space).

 

[WillowJ]

However, there may also be confounding issues with a highly-deconditioned patient group as long-term bed-rest in healthy people does lead to many changes in the immune system (documented by NASA and others looking at long-term effects of bed-rest as a model of weightlessness in space).

do you know what changes specifically?

 

[Simon]

do you know what changes specifically?

A lot of things, as I remember, not just a couple of specifics, which complicates things:
Recovery After Prolonged Bed-Rest Deconditioning - NASA ...

 

[Allyson]

A lot of things, as I remember, not just a couple of specifics, which complicates things:
Recovery After Prolonged Bed-Rest Deconditioning - NASA ...

willow j and Simon

i DO know that when astornauts complete a mission and return to eart there is no heroic/triumphant march out of the space lab

why ? because they cannot stand up and have to be carried out bodily until they re-gain condition.

Not sure of all the details or how long it takes to re- condition.

also they are working on suits for them to wear that may help us

cooling compression clothing to help them maintain blood pressure and stay cool while wearing it. this would realy help us with OI issues.

if we got the right comfortable superman suits we migt be like superman all the time instead of reverting to Clark Kents after a breif episode up and about.

 

[Allyson]

Done - always good to click through and give a good story the traffic.

Interesting what they say about having access to severely affected patients.

yes that is great to see Sasha; they are a wonderful team doing great work so that s really heartening to see.
Here is the link to their fb page for those who want to stay updated.

https://www.facebook.com/#!/pages/N...erging-Diseases-NCNED/301252900007181?fref=ts

it strikes me thaat in Australia if youhave say a bad motor bike accident you will get weekks of intensive care hopital care and months of rehab sosting hundreds of thousands of dollars - all free.

Meanwhile we are as totally debilitated as that rider .... and we barely get the time ot recite our full list of symptoms before being shown the door often.....

(meanwhile the rider can then get back on the bike and do it all again)

sad really and hope this will change

 

[taniaaust1]

Umm 250, 000 affected with ME/CFS... I wonder if they are going by the Canadian Diagnostic criteria? Wikipedia says we have 23 Million people in Australia.

 

[August59]

We only have a million in the US conservatively