aussie study, diagnosis cfs/XMRV???

[heapsreal]

http://sacfs.asn.au/news/2009/10/10_21_new_australian_research.htm

Sounds good for us aussies!! Thought we would be left behind, even though we have some of the best scientists here, looks good.

 

[mikipe2]

Very cool.

It's interesting that the Bond press release doesn't actually mention XMRV.

 

[Alice Band]

Any chance one of the aussies here would give her a call and see that she will be testing for and which criteria of CFS she will use?

I'd do it myself but far away and too weak.

 

[susan]

Bond Uni gave us less than a day to inform our support group that they had this funding and wanted and wanted publicity. Myself and out facilitator wee not able to go so Bronwyn went instead.

They have been working with our group and BLOOD for about 2 yrs now, studying something like neuropeptides and came a year ago and gave us an update at our Gold Coast group. We have good contact with them and they ae coming in Novemeber. I will post a special thread to ask you the questions you want answered....sometimes they talk too technical and might be difficult relaying it back.

My doctor who has CFS gets concerned that some of these grants just buy jobs, so I would like to screw them down to telling them what we expect from them.....taking into consideration WPI s findings. I thing the findings now give us so much more clout.

 

[Alice Band]

Thank you Susan, neuropeptides is too general. If you can please nail them down on specifics and also what criteria they will use for the study.

I do hope that they take the new findings into consideration. Good luck!

 

[heapsreal]

hi

After emailing my doc, he assumes its more about diagnosis from symptoms. But its all abit vague. Maybe with all this new stuff on retroviruses the might start looking into that.

Is there a website for the cfs support group on the coast??

Ta

 

[starryeyes]

Aussie CFS Testing

I hope they do test for XMRV in the Land Down Under. The more we test the more we'll know.

I found this interesting: "After a couple of months of having acupuncture my acupuncturist said she thought I might have chronic fatigue syndrome (CFS) because she couldn't treat me.

My acupuncturist couldn't help me either and she really tried. I went to many different ones before her and none could. Later I read that we are resistant to treatment like this. We are tough to treat.

 

[zoe.a.m.]

I found this interesting: "After a couple of months of having acupuncture my acupuncturist said she thought I might have chronic fatigue syndrome (CFS) because she couldn't treat me.

My acupuncturist couldn't help me either and she really tried. I went to many different ones before her and none could. Later I read that we are resistant to treatment like this. We are tough to treat.

This is interesting. I personally doubt that it's a matter of CFS being resistant to treatment and more a matter of finding someone who really has the skills to treat it. I have found that, just as you can see 20 doctors who don't understand, you could see 20 acupuncturists who don't either. It's not for a lack of wanting to sometimes, but CFS is considered one of the most difficult conditions to treat in TCM.

 

[annunziata]

I was interested to see this mention of acupuncture. Back in 1993, I found an acupuncturist who got me through a life-threatening opportunistic illness (pneumonia and tonsillitis). I had lost 20 lbs. in a month, had fevers spiking to 103, could not get up off the floor, and everything had turned gray -- I couldn't see colors at all. Yet when someone took me to an emergency room, and I explained to the doctor I had CFS, he laughed and sent me home. Two people living nearby got me to an acupuncturist who, as I lay on the table the first time, did something to my ear that immediately caused the swollen tonsil to shrink and the fever to break. I was astounded. It took all summer, but he got me back to where I had been before...'merely' very ill with CFS/ME. He worked on me regularly for a couple of years. He could get me almost completely symptom-free, but it could never be sustained.

After he stopped practicing, I tried every other acupuncturist in the area. None of them could do what he had done, and they were all dreadfully ignorant about what CFS actually is.

Amy

 

[mgb]

I am on the list for the new research at Bond uni. I emailed sonya from the uni a couple of days ago, asking if they would be testing for XMRV in the study. Her reply was that they aren't currently testing but would be seriously considering it. I hope they do.