XMRV testing in Germany

[eric_s]

Hi

Just some days ago, i came across some information that Dr. Bieger in Munich (Mnchen), Germany is offering a test for XMRV.
I was surprised, because i thought that so far there is no such test available in Europe.

Here's the link to the website of his practice
http://dr-bieger.de/

Munich is not sooo far away from where i live (near Zurich, Switzerland) but i have no experience with Dr. Bieger and didn't know about him before i found this.

I have emailed him and asked some questions about this test.
He replied that the cost is around 200 Euros and it's done in cooperation with the University of Heidelberg, after some months of cooperation with them.
He also said that i (and so probably everyone else, i guess) would not have to come to Munich to take the test. The blood could be sent to him, but it would have to reach him in less than 1 day. This shouldn't be a problem.
I also asked about his thoughts about the reliability of this test and if he could provide an approximative percentage of positive results, but he didn't answer to that. I have to say though that he probably answered my email via his mobile phone because he is on holiday now and will be back on the 2nd of July. He said that he will be able to answer further questions then. So the reason he didn't answer all of my questions might be that it was too inconvenient to type a long answer on his mobile and that he just wanted to enjoy his holiday, which i can understand :tongue:

So what i would like to know (besides letting people know about this possibility) is this: Does anybody have experience with Dr. Bieger and/or this test?

Me, i think i will take the test, if my health insurance pays for it.
But to be honest, i'm not very, very confident about it's reliability. I have to be a little bit careful here (and i advise everybody to be the same), because in Germany the jurisdiction about posts on internet forums commenting on products, brands, persons etc. is very strict and i don't want to get mail by an attorney.
The reason for my opinion is that so far most studies have failed to find XMRV, especially in Europe. And this test (as the one offered by VIP Dx) is not approved yet. So even if i took it, i would not let a negative result impress me too much.
As far as i know the VIP Dx test should be available in Europe soon too, but if such a test is covered by my insurance, then i don't want to wait.

 

[Nina]

I wouldn't get tested there as long as he isn't forthcoming with the percentage of positives.

All I can go by is rumours but I would be surprised if they were able to find a lot of them.

My money is on Redlabs, Belgium, but I want to wait until they can offer the antibody testing as well and that will take some more time.

 

[eric_s]

Hi Awol and Nina

I will keep you posted Awol. It should not take long to find out wheter insurance pays for it. When Dr. Bieger is back to work, i will get in contact with him again (probably also via my doctor) and try to find out more about the reliability.
In the study about XMRV in the respiratory tract none of the authors were affiliated with the University of Heidelberg. The same is true for one german study about XMRV in prostate cancer (i justed checked). I don't know if there's more than one such study.

Nina, i agree with you about the expectation that they find XMRV. But if a test is available and i don't have to pay for it, i will take it. And as soon as the WPI's test is available through R.E.D. labs i will take that one too. Even if it's just the culture one. If it's covered by insurance. So far i have been sparing my insurance mostly, i never had any treatment, but now i will take any test, i think.

There's a Dr. Huber at the University of Heidelberg working on XMRV and i've heard about a Dr. Huber who has come up with a negative XMRV study in CFS patients and who has had some argument with Dr. Mikovits, so at first i thought this might be the same person. I'm still not sure, but i think they're not the same, i think one is male and one female. Does anybody know more about that? Who is the Dr. Huber who was the author of a negative study?

 

[Nina]

Hi eric, no, the 2 Hubers are not the same.

If your insurance covers the tests it might even make sense to take both to compare. In Germany I have to pay out of my own pocket so I will wait for the best test to be available. Also to save me from more questions on my list.

 

[eric_s]

Hi Nina

Thanks. If i take any test that has not been approved by the relevant authority, i will not take a negative result as fact. Even with the WPI test. And i will try to make sure that people around me see things that way, too.

 

[eric_s]

Thanks a lot Diesel. It's very interesting to hear from someone who knows Dr. Bieger and has taken the test. If there are more people who have taken it, please share your experience too.
I wouldn't worry too much about a negative test result neither, at this early stage. If someone who does not know about CFS reads this, he must think we are crazy, to wish for a positive result :tear:
I have now emailed my health insurance and asked them wheter they will cover the costs of an XMRV test in a foreign country.

 

[John Leslie]

You should not get tested anywhere unless it can promise that the test is clinically validated. Ask the WPI to send a set of samples to this lab and find out if they can locate the positives. If they can do this simple task, then they have test that works. This is just like Cooperative Diagnostics....they couldn't find it at all.

 

[jodu]

More Information (deutsch) about Bieger/Lab4more in this Newsletter:

http://www.lab4more-online.de/images/stories/lab4more/pdf/newsletter/2010_06.pdf

 

[Leitwolf]

Servus !

I was probably one of the first persons in europe to get tested for XMRV with the universities virology at the end of last year. I just called up the institute after the Science paper was released to ask them if and when they were going to have any tests available. They told that they already had one (PCR) and that they would interested in finding the virus at all, actually running a little research. So I could just come over (the institute is just a 5min walk away) and "donate" my blood. I did not have any expectations, but it was free of charge As I expected it turned out negative.

I am looking forward to learn if they had any positive results at all, but I dont think so. And that is exactly the point at this stage. Unless you know that a lab has a working procedure and actually detects the virus, if it is present, all you do is validating the test, not your infection. And I do not think it makes any sence to spend money on that..

 

[Deatheye]

Any new information avalaible in regards to this? I'm thinkin about testing but the VIP/dx labs I see a lot of problems cause I have no Idea whats most of the stuff they want you to fill out, or how I get the blood from europe to there.

 

[guest]

Any new information avalaible in regards to this? I'm thinkin about testing but the VIP/dx labs I see a lot of problems cause I have no Idea whats most of the stuff they want you to fill out, or how I get the blood from europe to there.

Did you think about Redlabs in Belgium? Their test is reliable.

 

[eric_s]

I think Redlabs/VIP Dx is the most reliable one available, but can we really say it's reliable? How do we know?

I don't think you can get tested at VIP Dx from Europe. That's why they licenced their test to Redlabs, so Europeans can get tested. As far as i know a doctor has to fill out the forms.

 

[Alexia]

I don't think you can get tested at VIP Dx from Europe. That's why they licenced their test to Redlabs, so Europeans can get tested. As far as i know a doctor has to fill out the forms.

What I understood from the Dutch forum is that you need to give a name of a doctor but it doesn't need to go via the doctor. You can just give the name of your GP. You can also ask to get the results directly, I know some people have done this.

 

[Jemal]

What I understood from the Dutch forum is that you need to give a name of a doctor but it doesn't need to go via the doctor. You can just give the name of your GP. You can also ask to get the results directly, I know some people have done this.

Yes, that's true. You can bypass the GP for the test in Belgium.

 

[eric_s]

Right, you only have to mention the name of your doctor on this form, when i wrote my previous post i was at an internet cafe and did not have time to check.
On the order form you need to fill in the fields "Name of requesting physician" and "Your patient ref."

So does this mean they will then send the kit to the patient and not the doctor?

But who will draw the blood? And then they will probably send the results to the doctor, so he will likely ask you what happened. And do you want to lie on the form? The doctor will probably not be happy.

Will it be a problem to find a doctor that will request this test for you? I think it should not, i mean you are not asking for ARVs, just for a test that makes sense if you have a ME/CFS diagnosis, since there were studies in Science and the PNAS finding an association. So i would let a doctor request the test.

 

[Sushi]

Right, you only have to mention the name of your doctor on this form. On the order form you need to fill in the fields "Name of requesting physician" and "Your patient ref."

So does this mean they will then send the kit to the patient and not the doctor?

But who will draw the blood? And then they will probably send the results to the doctor, so he will likely ask you what happened. And do you want to lie on the form? The doctor will probably not be happy.

Hi Eric,

I did another Redlabs test (VDR) sending blood from the States. You are right, you only have to give your doctor's name, and they fill in the patient ref.

The difficult part is that they don't send out kits! I think they are geared to doc's drawing blood in their clinics and sending it directly. I had a couple of unused kits from another lab and I put together the tubes etc. that I needed from those. But, in the US anyway, most hospitals will draw blood for other labs as a courtesy and they have all the tubes etc. You might have to get creative about packing materials though.

I'd call Redlabs and ask how to pack and label. I had to deal with international customs, but you shouldn't have to from Germany. Just send it the fastest way.

As far as results, if you put KDM as your doctor, they send the results to him and you probably can't get them directly as he works closely with Redlabs and wants to go over your results first. For me and others, the results were sent directly to me--after paying the bill. After I had paid, I emailed them and asked them to email my results. They send them in a PDF the same day.

Good luck! I'd say that the most important things are to pack it well and get it there fast! VIP wanted us to get an afternoon blood draw and get the tubes to them by 10 a.m. the next day--at room temperature. I hear that RedLabs aren't so strict on the timing, but maybe they should be. I'm sure they are using the same procedures as VIP.

Sushi