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Dr. Bieger and XMRV

Jemal

Senior Member
Messages
1,031
A video of Dr. Bieger was just posted on YouTube. He talks about XMRV and ME/CFS. Unfortunately I am unable to listen to it now and my German is not fantastic. Can anyone summarize what he is talking about? Is he still interested in XMRV?

Link:
http://www.youtube.com/watch?v=4e6Rrlgg73I
 

Overstressed

Senior Member
Messages
406
Location
Belgium
Hi Jemal,

a short summary of what has been said...

He explains that he and a group of Heidelberg were working on XMRV since 2010, intensively, despite the fact XMRV is controversial in CFS. They indeed found XMRV with CFS, but absolutely not as much as found in the US. They found 5% of the people infected. No conclusions can be drawn from this. They can't dig deeper into the issue wether CFS/ME is caused by a retrovirus(es). They will now wait and see how things settle. He confirms that CFS/ME is caused by an infection, but wether that's from an agent not known yet, or from a known agent that causes an atypical disease, is to be answered.

Next, they will focus on other questions related to disease... He's not specific about this.

Best regards,
OS.
 

RRM

Messages
94
Basically what Overstressed said. One addition:

He regards the 5% as evidence that the virus is present, but he doesn't see it as evidence for a (strong) association with ME/CFS.

In his eyes the debate is not yet settled, but (as Overstressed already said) they will leave XMRV for what it is and focus on other questions.
 

Jemal

Senior Member
Messages
1,031
Thanks for the addition RRM. I guess like Hanson he is also waiting for others (Lipkin?) to do more research on this subject.
 

ukxmrv

Senior Member
Messages
4,413
Location
London
At least Heidelberg University are still looking at this and finding the virus (albiet in smaller numbers of patients than the WPI). Last time I spoke to someone in contact with them, he said that they were keeping their heads down and still testing but not intending to publish at least until the furore had died down. This was a patient who was tested by VIP dx and Heidelberg.
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
I swear there was something posted about this recently somewhere else. Will try and dig it out. May even have been from Tony Mach on this forum. Suggesting that they couldn't explain the results or something. Will get back to this but thanks for the translation(s) of this announcement.
 

Tony Mach

Show me the evidence.
Messages
146
Location
Upper Palatinate, Bavaria
I swear there was something posted about this recently somewhere else. Will try and dig it out. May even have been from Tony Mach on this forum. Suggesting that they couldn't explain the results or something. Will get back to this but thanks for the translation(s) of this announcement.

Sorry, the only thing I knew was that Dr. Bieger has used VIPdx and/or WPI for a small study he had done before, which turned out inconclusive (no details on the study design etc.). i know next to nothing about the Heidelberg group.

I find this bit of "information" (no even three minutes of YouTube? Seriously?) a bit lacking. How many patients? How many controls? Were the tests done blinded? What methods? Did you sequence the viruses? Integration sites? When he says at the minute mark that they have "indisputably" found the virus in 5% of ME/CFS cases (" in etwas 5% der Flle den Virus bei CFS Patienten haben eindeutig nachweisen knnen.") then I get a bit tingly without any evidence whatsoever and not even information what exactly they did.


BTW, while we are at it: There was a XMRV group (with someone from the 2006 prostate cancer study being the principal) at the UKE in Hamburg. When I asked several month ago them for information on the their status of research on XMRV and other groups in Germany, I didn't get an answer. Oh well, should have pressed on.

Oh, I remember now, I have written a mail to Dr. Bieger a couple of month ago regarding Enteroviruses, but did not receive a reply. Oh well.
 

currer

Senior Member
Messages
1,409
I remember that at the IiME conference Dr Bieger gave a presentation, and that he reported they had success in finding XMRV and that it was present in blood very low copy numbers.

His assays were calibrated to the VP62 variant, could not initially find it, but later succeeded after advice from Dr Mikovits on his methods.

Now, what interested me was this, at the IiME conference he clearly stated that he was looking for the VP62 sequence and, yes, they eventually found some.
I do not know whether his study ever tried to extend its scope and look for a wider range of polytropic retroviruses.
Perhaps they would have had more success and found a greater number of positives if they had done that.
The IiME conference dates back to the time before the problem with the VP62 clone emerged and all the researchers were misled into looking for this sequence.
At the IiMe conference (this would be last May)I think news was just beginning to break that there were in fact a much wider family of retroviruses being found and Dr Mikovits did discuss this at the conference.
By that time most of the other researchers (and Dr Bieger,) had already focussed on looking for VP62 because of the mistake in the Lombardi paper.

Because Dr Mikovits has had to face such opposition and has been unable to publish on her polytropic findings I do not know whether the German researchers understood the need/had the funding to search for more variants.

I have lent my DVD to a friend and cant refer to it now - blast - so I am relying on my memory.
It is a shame that the current situation makes it so difficult for positive studies to publish because one needs to know more...

So I do not know whether the research he is referring to in the video from January 2012 only did PCR for VP62, or whether they did try to look for further variants subsequent to the May 2011 IiME conference, when I heard him speak.

In other words, is the 5% positive, only for a sequence that can be found with VP62 assays?

Tony, you should be proud of german research - they have succeeded where others have failed!
 

currer

Senior Member
Messages
1,409
From the IiME journal, May 2011:

Dr Wilfried Bieger.

...so far, we tested about 80 patients fulfilling all Fukuda criteria for CFS, starting in November 2010 after about eight months work to set up a highly sensitive and uncontaminated assay protocol for virus detection in blood.

Blood was taken at my clinic and sent directly by mail to the laboratory. we used both heparin and EDTA-blood in the first time, but switched over to EDTA alone, which gave better, ie more positive results.
We could not find viral DNA or RNA in fresh samples except one, but had to cultivate the PBMC for up to six weeks under stimulating conditions and partly during coculture with virus permissive LnCap cells.

After two weeks of culture cells began to turn positive in some patients and continued to display virus for the next weeks.
the presence of XMRV was confirmed by sequencing XMRV specific DNA.

Recently we started with the antibody tests as well using freshly drawn or deep frozen serum.
So far we found XMRV specific reactions in only a minor proportion of our CFS patients, but improvement in the testing procedure is underway.

In conclusion we have no doubt that XMRV is present in German CFS patients although the prevalence may not be as high as reported in the USA.....

Now although I had a copy of this from my attending the conference, because Dr Bieger did not publish I could never refer to it publicly because for all I knew he may have repudiated the findings later on.
 

Mark

Senior Member
Messages
5,238
Location
Sofa, UK
I remember that at the IiME conference Dr Bieger gave a presentation, and that he reported they had success in finding XMRV and that it was present in blood very low copy numbers.

His assays were calibrated to the VP62 variant, could not initially find it, but later succeeded after advice from Dr Mikovits on his methods.

...

I have lent my DVD to a friend and cant refer to it now - blast - so I am relying on my memory.
It is a shame that the current situation makes it so difficult for positive studies to publish because one needs to know more...

So I do not know whether the research he is referring to in the video from January 2012 only did PCR for VP62, or whether they did try to look for further variants subsequent to the May 2011 IiME conference, when I heard him speak.

In other words, is the 5% positive, only for a sequence that can be found with VP62 assays?
Currer, your mention that you don't currently have access to your copy of the DVD prompted me to watch the presentation and take some notes. Since Dr Bieger seems to have now broken his silence in this Youtube clip, I hope it is now acceptable to post some quotes from that presentation. If the following information is not acceptable to post publicly (in which case it presumably never will be!), I'll take it down if asked, although I must say once again that this whole situation where only those 'in the know' are allowed access to certain bits of highly pertinent scientific information provides fertile ground for misunderstandings, conspiracy theories and an atmosphere of distrust - and this situation is of course due to the inadequacy of modern scientific publication practices, and not the fault of Dr Bieger or IiME.

I'll keep the quotes very brief, on points relevant to the issues we are wondering about on this thread.

"Right now we have about 100 patients under work, they are still under work and I can't tell you how many of them are positive; approximately 40% but I still think there's a lot of work to be done to improve the techniques and also to extend it to related virus species which we didn't do so far".

(So this roughly 40% positive rate seems to have descended to 5% in the last 7 months).

Slide is headed "XMRV sequences in PBMC DNA from CFS patients" and positive amplicons are labelled "22RV1 DNA" and (separately) "VP62".

Dr Bieger also refers to a western blot test they developed which found XMRV antibody-positive results for several ME/CFS patients.

He also focused on EBV:
"We focus on EBV too because I think among the best papers about treatment of CFS are the two reporting about antivirals used in long-term treatment of patients...actually in Germany, CMV we find not quite often, of course we have HHV6 which we also try to look at but it's not as prevalent as EBV"

Concluding remarks:
"We are certain...and we did a LOT of work in (?) contamination...we have a very good setup at the University of Heidelberg, at the Institute of Neurology, and we are sure that XMRV is present in Germany too...we don't know what that means, but of course it is very challenging...and we also see, at least in the example of EBV, that we have a lot of co-infection, co-activation, and as the literature shows, it might be reasonable, at least in a certain part of patients where we see the co-activation, that we do anti-viral treatment directed against that."

I do hope it's OK now to post this information publicly; if anyone has or knows of any objection to this, please contact me and I will take it down.
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
Hi Jemal,

a short summary of what has been said...

He explains that he and a group of Heidelberg were working on XMRV since 2010, intensively, despite the fact XMRV is controversial in CFS. They indeed found XMRV with CFS, but absolutely not as much as found in the US. They found 5% of the people infected. No conclusions can be drawn from this. They can't dig deeper into the issue wether CFS/ME is caused by a retrovirus(es). They will now wait and see how things settle. He confirms that CFS/ME is caused by an infection, but wether that's from an agent not known yet, or from a known agent that causes an atypical disease, is to be answered.

Next, they will focus on other questions related to disease... He's not specific about this.

Best regards,
OS.

Any idea why he says this:?:

They can't dig deeper into the issue wether CFS/ME is caused by a retrovirus(es).

GG
 

Overstressed

Senior Member
Messages
406
Location
Belgium
Hi ggingues,

I've listened to the stream a second time and this is what Dr.Bieger (I think) literally says(on that part): (...)The question has not been answered -on XMRV or retroviruses in releation with CFS/ME- , yet, it goes beyond our capabilities to go to the bottom of this. We now wait and see how things develop further(...).

Best regards,
OS.
 

currer

Senior Member
Messages
1,409
This is - whether the retrovirus is causing ME, the illness, - not, I think, whether the retrovirus exists.
It does look as if Dr Bieger stands by his findings.

Hi ggingues,

I've listened to the stream a second time and this is what Dr.Bieger (I think) literally says(on that part): (...)The question has not been answered -on XMRV or retroviruses in releation with CFS/ME- , yet, it goes beyond our capabilities to go to the bottom of this. We now wait and see how things develop further(...).

Best regards,
OS.

I have carefully read what Mark posted and I think what Dr Bieger said at the conference suggests that they did not go on to look for the polytropic variants.

......"to extend it to related species which we didnt do so far"

However we cannot be sure.
Without publication we are left so much in the dark.....