xrmv testing- australia

hi,

i tried doing a search but could not find any info.

is it available in australia?

has anyone from australia been tested? if so how did you do it? which dr. organised it?

does anyone know if dr lewis has tested people? (from the cfs centre in melbourne)

thanks!

 

Hi Dana

It is mentioned elsewhere on PR (http://aboutmecfs.org/Rsrch/XMRVStudies.aspx) that Dr Lloyd is testing in Dubbo. I'm sorry but I know nothing about it. Maybe you could phone Dr Lloyd's clinic/office. I think it is Professor Andrew Lloyd at the University of New South Wales (they have a "Fatigue Clinic"?)

All the best

Melodie

Important edit: This was a huge mistake mentioning Dr Lloyd, please see further posts by

Daffodil at post #11

" i dont think the Dubbo people are using the same methods as WPI for xmrv....",

and Francelle at post #14

"Also from what I have been reading about Dr Andrew Lloyd and his various Dubbo studies (and I do not want to misrepresent him here), he is in cohoots with the psych lobby and his studies reflect this. PLEEEEASE anyone I'd be more than glad to be corrected here if I am wrong on this!!!",

and Megan at post #28
"Dana,

I enquired last year with Dr Lloyd's group if they could test others outside their group and they said no they just wanted to stick to their original cohorts. I wouldn't be putting too much faith in getting tested with them anyway unles you knew that they were using the testing methodology known to find it.

He is cynical about XMRV/CFS and my guess is he will have done his part in hosing down the whole thing here within the medical/research world. Perhaps his attitude will change with news of the other positive studies. I think much of the medical profession here defer to him on CFS so I expect that would have slowed momentum here. But then we have had the blood ban here which shows someone is thinking about it.

I have heard that Lloyd is not proceeding with his study in any case, though I wonder if news of other positive studies will change his mind. As far as I'm concerned I'm happy for him to stay out of it until there is an agreed validated test and they know more about this virus. Otherwise I would expect that we would just see another negative study that suffers from the same issues that have occurred in the European studies and we would be worse off. "

and ukxmrv at post #37

"In the book Osler's Web, there was an interesting story about Dr Lloyd. Think it is the same one but have not double checked.

He was used as an expert witness by a company defending a CFS needlestick legal case. A nurse got CFS after accidentally pricking herself with a needle in a CFS clinic.

Dr Lloyd was used as a medical witness to say that CFS was not infectious. I wonder how many times he has done that and acted againts patients interests.

Dr Lloyd has a lot invested in CFS not being a retrovirus or any persistant or chronic infection."

and taniaaust1 at Post #38

"ohhhhh No.. everyone stay away from him ( Andrew Lloyd ).. BEWARE He's one of Wessleys cohorts. http://www.ncbi.nlm.nih.gov/pubmed/20466905 See link.. him and wessley work together.. He's against finding the XMRV and will use the wrong methods!! Note also P.White.. he's another buddy of Wessleys
..........

I recently (this week) asked my CFS specialist Dr John Graham about XMRV testing and he said he will get me tested as soon as it's available in Australia. (He didnt mention Lloyd doing the testing as i guess he knew he is in with Wessley). If it was being probably done in Australia.. im sure my specialist would of known.

BEWARE of anything with the term "Fatigue clinic" "

Thanks all for the clarification.

 

thank you! im in a different state but i will try and contact him. i hope he can test people 'outside' his study. thanks for that.

if anyone else has any info on xrmv testing in aus or about dr lloyd it would be much appreciated. thanks

 

Im getting some testing done through VIDRL-victorian infectious disease refereance lab, I emailed them about a few prices and also asked about XMRV testing and they said that they dont and arent looking into it in the near future. I think if any lab was going to do testing these guys would be the ones, but could be wrong, i hope. http://www.vidrl.org.au/

 

Hi, I'm in Western Australia. I actually emailed Judy Mikovits a couple of times to ask about XMRV testing in Oz. I while ago I heard back from her and they are setting up an Autralian study. I don't know any of the details, that's all I know. Best bet is to contact the WPI http://www.wpinstitute.org/about/about_contact.html
I hope it really does happen, I can't wait to get tested. Having said that, I will probably be really depressed if I am negative!

take care, ness

 

Im in a cfs study(well funded, biggest funded cfs study in southern hemisphere) from bond uni on the gold coast, they are testing natural killer cell function in cfs people. In the begining of the study december last year we asked if they would be testing for xmrv as it was all the rage then. They said they were looking into it but our last meeting with them a couple of months ago, they said this wasnt going to happen, hopefully things have changed. They did seem to be negative towards it because of the other studies that were coming out where they couldnt find xmrv in anyone, maybe they relise that these studies were designed to fail and are now going to run with the xmrv testing, I hope so.

cheers!!!!

 

thanks guys!

thanks ness, ill contact the wpi directly and ask about the study, i hope they do it soon!

heapsreal- what kind of tests are you doing through the VIDRL? do you have to do them through a dr?

 

Hi Dana
I emailed the WPI about this very thing ( Im in Australia too) just last week and they emailed me back and said whilst there was not a centre set up here just yet they would most certainly be doing so very soon.
So some hope a bit further down the track

 

vidrl do a number of infectious disease tests, im doing ebv cmv serology tests hopefully find out how antivirals are effecting them, but one problem i have found out is they wont give you a titre reading just positive or negative. I have tested positive to both several years ago which was igg antibodies. Before antivirals i had a few ebv tests which have shown positive and negative results, my understanding is that these serology tests are more indepth and actually test for the virus not just antibodies, i hope. Yes, got my dr to order these tests.

cheers!!!

 

Hi Heapsreal,
I am also in the Bond study. I somehow missed receiving the email to attend that meeting. I am dissapointed to read they weren't testing for XMRV, it was one of the reasons I decided to sign up for the test. I have an appointment for the next blood test this week. I will ask them about it then. Did you get your tests results at that meeting?
Tempo- Hope that information is correct about setting up tests here soon. That would be amazing. I have been following Theda's story (Western Australia) She sent her blood to Belgium, Redlabs I think. They are waiting to hear the results.
xxx

 

i dont think the Dubbo people are using the same methods as WPI for xmrv....

 

hi MGB, if u missed the meeting u will get your results at the next lot of blood testing. Besides your test results u didnt really miss too much other then most of the cfs people have poor nk cell function compared to normal. They do keep mentioning that they arent recommending any treatments but trying to find an effective test for cfs. But in saying that if u have poor natural killer cell function it helps validate our condition and also help us to hunt out treatments that help NK cell function, they also said that this makes us more prone to infections, so ebv might be causing some of us problems and another infection causing someone else grief, but our immune system is what is leting us down. And yes i was hoping for xmrv testing, it could still happen. Im thinking of emailing WPI about this study and suggest that they already have the cfs people just give them the gear to test us for xmrv.

cheers!!!

 

I know of an Aussie and a Kiwi (both tested through VIP dx) and both positive for the virus.

 

XMRV Testing in AUS!

Perhaps we need to bombard VIDRL with emails asking them for the XMRV serology test. This way it may make them aware that there will be market for the test here in Australia as soon as they get their act together.

Also from what I have been reading about Dr Andrew Lloyd and his various Dubbo studies (and I do not want to misrepresent him here), he is in cohoots with the psych lobby and his studies reflect this. PLEEEEASE anyone I'd be more than glad to be corrected here if I am wrong on this!!!

I'm sure Dr Don Lewis in Melbourne will be right onto any local or Australia wide testing, as he is truely in our camp and an advocate for M.E. - bless him!!! For the inter-staters, google him and call his office. I am away for three months at the moment and don't have my usual resources with me however contact details can be found at; http://www.cfsdiscovery.com.au/

 

Why not check to see if there is a courier from where-ever VIDRL is, that could get the blood to VIP dx within 24 hours? See what the shortest timeframe is and then check with VIPdx to see if they will accept that blood within that period.

 

Thanks Heapsreal. I will be happy to see some biological to help validate this illness. So I am looking forward to it. Are you getting tested on the Gold Coast or Brisbane?
Francelle - I think I heard the same thing about Dr LLoyd, can't be 100% sure though.
ukxmrv - That may be our only option for the moment, seriously considering it. I would very much like to know if i can disregard all this XMRV information. Right now I have no idea whether it applies to me or not and it is very frustrating. Are you XMRV +?

 

Good idea to bombared VIDRL with some emails, I suppose i have already sent my email off, they referred it to one of the scientists i think to answer my question on xmrv, here's his email, Rod.James@mh.org.au , or the generic email is vidrl@mh.org.au , also may i suggest to ask for natural killer function test which is what alot of the cfs guru's in the states use.

cheers!!!

 

Yes, MGB. I was tested through VIP dx from London.

http://www.xmrvtesting.co.uk/UNITED_KINGDOM_XMRV_TESTING.htm

 

You know what else would be good for aussie cfsers, medications covered by PBS for cfs, meds like neurontin and lyrica i have to pay off label prices for, neurontin costs me over $100 for 100tabs where if it was covered by PBS probably $30, also the antiviral famvir(good for ebv/glandular fever) is around $200 a month for off label prescription but if u have shingles or genital herpes it costs $30, 'Not fair Jan!'

cheers!!!

 

I called Dr Lewis yesterday and they said he isn't testing for XMRV at the present time.

And I also heard Dr Lloyd was using CBT in one of his studies.

Heapsreal said: They do keep mentioning that they arent recommending any treatments but trying to find an effective test for cfs. But in saying that if u have poor natural killer cell function it helps validate our condition and also help us to hunt out treatments that help NK cell function, they also said that this makes us more prone to infections, so ebv might be causing some of us problems and another infection causing someone else grief, but our immune system is what is leting us down.

A little off topic, but Heapsreal, with your test requests was there any discussion about avoiding having the NK cell function test when you are having a flare (dreaded PEM)? My doctor has finally ordered the NK function test (with a few other tests) and said to have it done when I am having a flare. I would have imagined NK would be more stimulated then.