xrmv testing- australia

[ZoeHines]

I did contact WPI - they just said the test isn't available in Australia, they didn't seem to understand what I was asking them! I haven't heard of Theda Myndt, but will look into it now. If I could send my blood to Redlabs I would, I need to look into this further.
I am thinking I want to wait until the serologic/antibody tests are available... hopefully soon!

 

[mgb]

I hope I have spelt Theda's surname right. If you have facebook, her family has a page for her 'help Theda'

 

[Tembo]

Dr LLoyd is also a complete and utter wanker. When I seen him he was more interested in big noting himself by telling me of his reputation in the medical community and wasnt interested in looking at any of my previous test results or running any of his own. I told him that I had an almost complete 'cure' within a week of being on a certain antibiotic and his answer was that he 'didnt see that as worthwhile of following up as only a small number of those with cfs can be cured with such treatments'. I responded that as Id been helped so much by the antibiotics and the fact that cfs was destroying my life, there was a good chance I might be one of that small number and it was worthwhile to me to follow it up. He responded that he 'has no interest in doing that, it is a waste of time and wont be doing it'.

He then told me that I have this for life and I just have to live with it. This upset my mother and he told her not to worry as those with cfs can still live full and happy lifes. He prescribed CBT and told me he wanted me back at work within 12 months.

There are so many things wrong with what he said that day I dont know where to begin. Does he not think that if I could work without destroying myself, that I would be?

This guy had no desire to try and help me and was either very unintelligent or a delibrate prick. I had to pay $300+ for his 'help'. People like this with these attitudes dont deserve to be practicing and enjoying the lifes that thier fees alloy them to have. But as they are fully aware, they are a law unto themselves and realise there is nothing we can do about it as we are in a position where we are dependable on them.

Knackers that is just AWFUL - I dont understand why these doctors get into this profession if they dont believe in the disesase for starters!!ARGH. Back to work in 12months?? im soo angry. Sorry you had to go through that - just what you need when your already feeling like crap hey.

Would you mind sharing what antibiotic make you so well? I had the same experience after taking Flagyl - I had full recovery ( after 19yrs) of complete remission although only for 3days it was WONDERFUL. My Aunty - serious CFS sufferer exp 6wks of complete remission from a different antiobiotic. Neither of us got the same reaction again by starting more antibiotics.

 

[knackers323]

hi Tembo, yep its annoying that they play god with our lifes and dont see them important enough to do theyre job and do everything they can to help (EVEN THOUGH WE ARE PAYING THEM) but yet they still get to enjoy a life we can only dream of. Id love to see how they would handle roles reversed.

It was klacid (clarithromycin). after a day on it I felt so much better and this continued for the rest of the week I was on it to the point I told my family I though it was all over. A day after finnishing the course I was back to where I started. I did this once more and another 2 times with azithromycin. But I have told that many Drs over the last 2 years that just refuse to look into it, that I have given up trying for the moment. Drs just seem to be arrogant pigs that wont be told anything and are driven solely by money. It is very sad.

 

[taniaaust1]

I think we give Dr. Wessely entirely too much credit and too easily lump people into the 'Wessely Group'. Its easy to do but I don't know if its accurate. Dr. LLoyd has a reputation of being a very independent researcher. His research history is nothing like Dr. Wessely's.

His Dubbo studies involved taking 4 groups of people who came down with different infections and tracking their immune response, pathogen status and gene expression results to see what happened in the group that came down with CFS. (the study, one of the most important in CFS, was funded by the CDC - which shows how hard it is to easily characterize many research groups on CFS). That's hardly anything Dr. Wessely or any other behaviorists would be interested in.

I know that some of his comments and writings have ticked off people but to simply lump him in with Wessely is too simplistic, I think. For one thing it ignores a good deal of past work - none of which looks Wesselyish at all.

"Science. 2010 May 14;328(5980):825; author reply 825.

Comment on "Detection of an infectious retrovirus, XMRV, in blood cells of patients with chronic fatigue syndrome".
Lloyd A, White P, Wessely S, Sharpe M, Buchwald D.

Centre for Infection and Inflammation Research, University of New South Wales, Sydney, Australia 2052. a.lloyd@unsw.edu.au

Comment on:

Science. 2009 Oct 23;326(5952):585-9.

Abstract
Lombardi et al. (Reports, 23 October 2009, p. 585) reported a significant association between the human retrovirus XMRV and chronic fatigue syndrome (CFS). However, the cases with CFS and the control subjects in their study are poorly described and unlikely to be representative. Independent replication is a critical first step before accepting the validity of this finding.

PMID: 20466905 [PubMed - indexed for MEDLINE]"

When Wessley and Lloyd do a JOINT REPLY like the one above.. I really dont know how one could think they arent working together.

Lloyds studies which were funded by the CDC.. now what defination did he use for CFS, what's the bet he didnt use the Canadian Consesus CFS defination (which most in Australia seem to be using), instead i bet he went for poorly defined CFS definations (which Wessely basically helped to create).... so yeah.. Lloyd doing serious CFS research ummm.. The CDC even has done what appeared to be so called serious CFS studies (eg the cortisol one) using stupid CFS definations... and we all know what the CDC thinks about CFS.

I do hope you see Knackers experience of seeing Lloyd
" He prescribed CBT and told me he wanted me back at work within 12 months" ... Ive heard many who have seen Lloyd say things like this... He IS with Wessley.. and of Wessley school of thought. The evidence of this is all out there. He is a guy who has made himself appear serious and developed a reputation for himself by his studies but not many of his patients (the canadian consensus CFS/ME ones) like him (of cause the idopathic fatigue patients probably get on good with him and his CBT). Lloyd is fooling people, just like Wessley tries to do, Lloyd thou seems to be better at it thou.

Thank you Knackers (i wasnt expecting to get backed up by someone about Lloyd so fast).

 

[Snow Leopard]

Do you know of anyone that has traveled to the USA or Belgium to get the XMRV test done? I am at the point where I would travel to either, but I need help as I don't know how to actually set it all up (in regards to doctors and testing)

I wouldn't suggest getting it done until the serology test is available and improved sensitivity is demonstrated by results of patients on this forum.

Anyway, The process is as follows:
A qualfied medical practitioner in Australia must request the tests using the VIPDx requisition form. This is so they have the authority to do the tests, send the results to Australia. My local clinic could not fax overseas, so I ended up emailing a scanned copy even though this is insecure - as I had my credit card info on the requisition form. (Credit card is the preferred method of payment - they bill you only after you get the results by the way..)

I had the test kits sent to a USA address (my sister lives in the USA). This contains pre-paid FedEx packages, the tubes and basic instructions.
You will have to call and find a walk-in pathology lab that draws blood themselves (don't bother with medical doctors). You just need to notify them that you have travel insurance, but you will be paying for their services to draw the blood. You will then need take the filled tubes/package to a FedEx outlet and have it sent overnight.
Call VIPDx the next day to make sure they got the package and then wait a few weeks for results. (or months in my case - they did the cell culture test twice and ended up discounting my bill by the cost of the XMRV test)

 

[mgb]

I emailed WPI and here is their response. No real news there just thought I would share. xx


You will need to contact VIP Dx to inquire about that. They can be reached at info@vipdx.com. All the tests need to be ordered by a doctor so you many need to find a physician in the U.S. Also, we are working on making the technology available outside of the US - you can also wait for that. There is no timeframe when that will be ready.

 

[jonc]

Did you need to have the XMRV test sent to Dr Cheney or did you just go and see him and he ordered what you needed? My in-laws live in North Carolina, so it wouldn't be too much hassle for me to get there. Was it just one visit with him?

Anyone have any ideas when serologic/antibody tests will become available?

There is nothing I can do if I get a positive result, I get that! I just want to know. I am so sick and tired of having friends and family telling me I am faking, rolling there eyes, I just want to know!

Hi Zoe, I think Andrew probably addressed a lot of your question - i.e. how to get the test ordered in the US if you can find an Australian doctor to request the test for you. If you want to see Dr Cheney, he will just draw the blood and mail the sample in from his office since he keeps the test kit and requisition forms in his clinic. I wouldn't advise seeing him just to get this one test done though since he his a very expensive consult (and he will want to do other tests as well as XMRV). Of course, you might want to see him anyway, but that's a different decision.

I understood that the serologic test should have been available by now (July). There seems to have been some delay but I can't imagine it will be too much longer. My understanding is that it won't be necessarily more accurate than the existing test but will complement it (i.e. if you get a false negative on one you may not on the other).

 

[Melodie]

Great comeback Tania!

I don't know why Cort picked on you to quote

If we have a problem in Oz with Dr Lloyd having a psychosocial model agenda it is in the interests of all people with mecfs that discussion is encouraged.

"Science. 2010 May 14;328(5980):825; author reply 825.

Comment on "Detection of an infectious retrovirus, XMRV, in blood cells of patients with chronic fatigue syndrome".
Lloyd A, White P, Wessely S, Sharpe M, Buchwald D.

Centre for Infection and Inflammation Research, University of New South Wales, Sydney, Australia 2052. a.lloyd@unsw.edu.au

Comment on:

Science. 2009 Oct 23;326(5952):585-9.

Abstract
Lombardi et al. (Reports, 23 October 2009, p. 585) reported a significant association between the human retrovirus XMRV and chronic fatigue syndrome (CFS). However, the cases with CFS and the control subjects in their study are poorly described and unlikely to be representative. Independent replication is a critical first step before accepting the validity of this finding.

PMID: 20466905 [PubMed - indexed for MEDLINE]"

When Wessley and Lloyd do a JOINT REPLY like the one above.. I really dont know how one could think they arent working together.

Lloyds studies which were funded by the CDC.. now what defination did he use for CFS, what's the bet he didnt use the Canadian Consesus CFS defination (which most in Australia seem to be using), instead i bet he went for poorly defined CFS definations (which Wessely basically helped to create).... so yeah.. Lloyd doing serious CFS research ummm.. The CDC even has done what appeared to be so called serious CFS studies (eg the cortisol one) using stupid CFS definations... and we all know what the CDC thinks about CFS.

I do hope you see Knackers experience of seeing Lloyd
" He prescribed CBT and told me he wanted me back at work within 12 months" ... Ive heard many who have seen Lloyd say things like this... He IS with Wessley.. and of Wessley school of thought. The evidence of this is all out there. He is a guy who has made himself appear serious and developed a reputation for himself by his studies but not many of his patients (the canadian consensus CFS/ME ones) like him (of cause the idopathic fatigue patients probably get on good with him and his CBT). Lloyd is fooling people, just like Wessley tries to do, Lloyd thou seems to be better at it thou.

Thank you Knackers (i wasnt expecting to get backed up by someone about Lloyd so fast).

 

[ZoeHines]

THANKS so much Andrew1 and jonc, your help/advice is greatly appreciated, couldn't be more grateful! THANKS AGAIN!!!

 

[green]

Does anyone have an indication of how many people in Australia have tested positive? I know of one for sure, but curious as to whether there are others yet? Although it sounds like many are still awaiting their results.

 

[ukxmrv]

I only know of one as well.

 

[green]

Ta!

Maybe that person is still the only one with results.

 

[cfssufferer]

XMRV testing in Australia

I know of several people from Australia who have tested positive to XMRV. They have all flown to the UK or USA for ulterior purposes and had an XMRV test.

I noticed on this thread that the VIDRL was mentioned as a place that people were emailing encouraging them to look into XMRV testing. Another place that Australians could encourage to test for XMRV is Bioscreen Medical. This lab has links to REDLabs USA and Brussels.

This is an article that they put on their website over a year ago highlighting their links to REDLabs (http://www.bioscreenmedical.com/whats_new/whatsnew.html)

Bioscreen and Professor De Meirleir are currently negotiating to make a panel of five or six basic biochemical tests that reflect the great complexity of ME/CFS available through our laboratory. It is hoped that initial specimen processing can take place at the Bioscreen laboratory before dispatch to Belgium or USA for analysis. Currently logistics regarding blood specimen transport to Bioscreen and then to RED Labs and test reporting back to doctors are being investigated. As the substances required for assay are very fragile the time window for analysis is very short and is confounded by transport logistics due to the sheer size of Australia. Further information regarding test availability will be posted, as available, on this website.
RED laboratory assays would assist in diagnosis, help in classifying the disease severity and monitoring therapy and include FasTest (the actin serum screening assay); RNase L Protein assay; PKR Activity Assay; Elastase Activity Assay and Natural Killer cell Cytotoxicity Assay.

If we email them, they may agree to send samples to REDLabs or they may look into XMRV testing themselves.

They focus on CFS and autism testing (both of which have been implicated in XMRV.) They may be a laboratory that we can email to encourage to look into XMRV testing. On their website (parts of which seems to be in disarray) an email address is listed as admin@bioscreenmedical.com

 

[cfssufferer]

A Medscape article was published today, titled Blood Products Advisory Committee Mulls XMRV Information. The article can be found here: http://www.medscape.com/viewarticle/725820

Stuart Le Grice, PhD, from the NCI Frederick Laboratory, Frederick, Maryland, described how he and his colleagues have been working to develop a single-copy assay for XMRV DNA, RNA, and serology, based on the assay that was developed for HIV.

"The HIV single copy that was developed at the NCI is regarded as the gold standard assay. We now believe that we have an equivalent assay for XMRV."

Dr. Le Grice and his team have also developed a cell line, dubbed the Derse cell line, which can detect XMRV in as little as 3 days.

He said that the XMRV assay that his lab has developed has been transferred to labs in Sweden, Australia, Vietnam, and South Africa to prove its utility. "Developing an assay is one thing, but transferring it to a laboratory where it can be reproduced is clearly important when we are talking about single copy assay. Contamination is a huge problem, and the ability to transfer these reagents is very important," he noted.

Dr. Le Grice added that the aim of the NCI is to make sure that the assays they have developed are as valid as possible. "Our goal is to develop a series of assays that we feel confident in and to test those head to head with other assays. I think that is really important at the moment. We should start with 6 assays in house, and if we have a problem, I think it is important to sit amongst ourselves and try to understand where those problems are before we disagree with anybody else's assay."

I am assuming that Dr. Le Grices XMRV assay has been transferred to research labs in Australia. The fact that this XMRV assay hasnt become commercially available in the US, leads me to assume that it is only in use in a research environment in Australia. I found this article interesting as it is the first time an assay capable of detecting XMRV has entered Australian shores.

Dr Le Grices presentation at the Blood Products Advisory Committee meeting mentioned that his assay was able to detect XMRV with 100% accuracy and single copy sensitivity. This was based on testing donor blood that was spiked with XMRV.

I wonder which Australian lab/s have this assay. I also wonder whether they will be conducting further research into XMRV.

 

[taniaaust1]

Dr Le Grice’s presentation at the Blood Products Advisory Committee meeting mentioned that his assay was able to detect XMRV with 100% accuracy and single copy sensitivity. This was based on testing donor blood that was spiked with XMRV.

Wasnt there something written on that somewhere? in which it said that assays should be tested on live patients with XMRV rather than on blood that is spiked with XMRV as sometimes they can pick up the positives with spiked XMRV blood but that dont mean it will be picking it up in the blood of real CFS patients. So possibly not a good test unless its tested properly on real CFS patients with it. (was meant to be one of the reasons why no XMRV could be found in a group of people with CFS)

 

[taniaaust1]

Also in relation to the comment regarding off-label prescriptions of meds like Lyrica - I have been intending to lobby the TGA regarding this but have had a lot happening this year. For the 300mg (56) capsules I pay $150 at Chemist Warehouse. At the moment I am in QLD and need to fill the script in the next few days so don't know what it will cost me here in Hervey Bay at a regular pharmacy. I have had a lot of success with Lyrica in that it has stabilised my sleep patterns and reduced my neuropathic pain at night, with the result that I have so much more get-up-and-go. Since starting Lyrica I now sleep thro' the night without three or four 'pitstops'! It has taken several months but I feel 'relatively' awesome in comparison to before.

No good really doing that until at least a study has been done to confirm that Lyrica helps CFS. maybe first step would be trying to encourage a pharmacutical company to do study on the use of Lyrica in CFS. (is it approved over here for fibro?? it is in America.. if you have fibro maybe it would be easier to lobby our government for that to be approved as a drug for it here.. as evidence of its use in America for this would back things up).

 

[Frankie Dene]

did you know that there is a conference planned for Queensland 2-4 Dec at Bond University - Nancy Klimas is attending. In Nz we are sending Dr Vallings and another expert to the conference.

 

[mgb]

Hi Franke, Thanks for sharing this. I knew Nancy was heading to Australia a I am involved with the Bond study but didn.t know when. How did you know the dates?

 

[Frankie Dene]

Because my Dr Ros Vallings is going then.