replication studies

[heapsreal]

hi, can someone give me the links to the actual replication studies. My reason is, Im involved in a cfs study in australia measuring nk function which is going well and they are finding cfsers do have nk dysfunction but these are being measured over 18months and hopefully they will have a test for cfs using this procedure.

But in our reviews we have with the docs and scientists running the study, it gets brought up about xmrv. Im suprised how little they know about the xmrv retro and say that the scientists who found xmrv are pursuing their own agenda and that, so far there are 4 studies xmrv hasnt been found. I did say it has been replicated and that they have also found mlv's as well and also about the different testing procedures that the other negative studies used. The reply was its just another virus. I think their agenda is trying to prove its an auto-immune disease, which is fair enough but i think with all this latest discovery and while they have all us cfs group together that it would be a good idea to test us all for xmrv/mlv here in australia.

So if i can get links to these studies i will forward them on. I think it would be a waste not to test us after going through all the questioning to find all us aussie cfsers. Plus another replication study from australia would give even further evidence to retro-viral cause.

 

[FancyMyBlood]

hi, can someone give me the links to the actual replication studies. My reason is, Im involved in a cfs study in australia measuring nk function which is going well and they are finding cfsers do have nk dysfunction but these are being measured over 18months and hopefully they will have a test for cfs using this procedure.

But in our reviews we have with the docs and scientists running the study, it gets brought up about xmrv. Im suprised how little they know about the xmrv retro and say that the scientists who found xmrv are pursuing their own agenda and that, so far there are 4 studies xmrv hasnt been found. I did say it has been replicated and that they have also found mlv's as well and also about the different testing procedures that the other negative studies used. The reply was its just another virus. I think their agenda is trying to prove its an auto-immune disease, which is fair enough but i think with all this latest discovery and while they have all us cfs group together that it would be a good idea to test us all for xmrv/mlv here in australia.

So if i can get links to these studies i will forward them on. I think it would be a waste not to test us after going through all the questioning to find all us aussie cfsers. Plus another replication study from australia would give even further evidence to retro-viral cause.

Thanks for letting us know about that Aussie study! It's really nice to see more and more studies showing physical dysfunctions rather than the old psychological stigma.
For the replication studies, unfortunately only one has been published yet. Here's the link of Alter's paper:
http://www.pnas.org/content/early/2010/08/16/1006901107.full.pdf
You can also let them see the commentaries on the new retrovirus connection:
http://www.pnas.org/content/early/2010/08/16/1007944107.full.pdf

On the XMRV convention a couple of weeks ago there have been poster presentations from yet unplublished positive studies. Miny Kitie made an awesome summary at here weblog:
http://www.cfscentral.com/

They'll probably say that there are still 4-5 negative studies and until the discrepancy between those studies is explained, it isn't worth testsing for the virus. Even if they acknowledge the virus I think they're going to say correlation =/= causation, especially if they're biased.
It indeed would be nice if they tested for the virus, but maybe it's better they don't. Chances are big it will be another zero/zero study because they don't know the proper testing methods.

 

[ukxmrv]

Heapsreal,

It may help to put them in touch with or at least make them aware that Otago Uni in New Zealand has something planned

Supervisor: Professor Warren Tate
University of Otago Division of Health Sciences.
Indicative projects for 2010:

Currently there is no diagnostic test for Chronic Fatigue Syndrome (CFS) although millions world wide are affected with the syndrome. A very recent Science paper (9.10.09) has linked CFS with a rodent retrovirus XMRV (rather like HIV-1) that can as well cause aggressive prostate cancer. About 70% of the affected group had evidence of the virus compared with only 4% of the control population. My lab has done developmental work on a rogue RNAse L cleavage fragment for a biomarker since it is claimed to be specific for CFS and indirectly to deplete affected cells of 50% of their ATP. We would like to examine the virus and its translational mechanisms as a potential drug target and establish the RNAse L fragment as a biomarker.

 

[omerbasket]

and say that the scientists who found xmrv are pursuing their own agenda and that [...] I did say it has been replicated and that they have also found mlv's as well and also about the different testing procedures that the other negative studies used. The reply was its just another virus. I think their agenda is trying to prove its an auto-immune disease, which is fair enough but i think with all this latest discovery and while they have all us cfs group together that it would be a good idea to test us all for xmrv/mlv here in australia.

In Hebrew we have a phrase that I believe is very much like the English phrase: "The pot calling the Kettle black". I believe it is THEIR PREJUDICE which is the problem here. They are pursuing what they thought to be right - Although we now have very strong evidence that XMRV and other MLV-related viruses are at least connected to ME/CFS.

Heapsreal, if you ask me, I think that we rather not let them run this study. I think that they are prejudiced against finding it and that therefore they won't find it - especially because it's pretty difficult to find it.

 

[heapsreal]

thanks for all the replies, yes im unsure if i should send on copies of replication study and just let them find out for them selves. They are doing good things for cfs in that they are finding good biomarkers, they are also studying cytokine profiles as well but not telling us much about them, all their info is going to go towards developing a test for cfs, maybe they might stumble across a test showing immune response of xmrv without actually testing us for xmrv. I think they are amazed at how poor our nk function is, im might be speaking out of line but i get the feeling that they(health department not scientists) thought we were all just nuts and finding immune abnormalities has got them thinking. I didnt know the saying, the pot calling the kettle black was hebrew. its used regularly in australia.

xmrvuk, i will keep my eyes out for the NZ Uni and there testing, mmm i wouldnt mind the kiwis showing us aussies up with this stuff. Just to let u know this study is being done by Bond Uni on the Gold Coast in conjunction with Queensland health. xmrvuk as u work in a lab with this sort of thing, are u able to flick them some info.


thanks alot guys,

cheers!!!

 

[ukxmrv]

Heapsreal, that blurb in my post is from Warren Tate and refers to his lab. I did send him an email to ask about this study but no answer.

Good luck.