Discussion in 'XMRV Testing, Treatment and Transmission' started by Rivotril, Jul 6, 2010.
info is up ...
culture testing 340 euro's
Thanks for posting , you beat me to it,i was waiting for that.
Hello hello. Can we in Australia send on our blood to Belgium, or the States to get tested? Or do you think something will start up here soon enough? Travel to Europe or the US isn't out of the question either. If this is a test we trust... I'm in like Flinn... whatever it takes... wherever.
from the link:
Presently, the life cycle of XMRV is unknown. The virus is typically present at very low-copy numbers, viral titers may fluctuate and could be below the limit of detection at the time your sample is tested. The virus may be present in some body tissues but not detectable in the blood. Also, it may be present in a non-infectious state (in which case the co-culture procedure will yield a negative result).
Therefore, getting a negative result doesn’t definitely mean that you are not infected.
You may consider re-testing when the serology test will be available."
sounds like they themselves think there still are (a lot of) false negatives...
if you're gonna travel, maybe better wait for the serology?
Hi Wookie - the Whittemore Institute emailed me and said they will be setting up testing centres in Australia soon ( but they didnt give a date) I also emailed the VidX Lab ( is that the right spelling?) and they said they were not accepting international blood at this stage but to check back in 6months.
Thanks a lot Rivotril, i've been waiting to get that news, i've just emailed R.E.D.Labs a couple of days ago and asked when the test will be available.
strange thing for me personally is that Meirleir took blood for XMRV antibody test, not culture test.
The form I had to sign said XMRV AB test 120 euro
so i wonder why he didn't do the culture test, because thats the one thats available...
but: he told me that results of the test that was done (AB) could be expected in august
maybe he has reasons to do it this way..maybe the wants the culture test firstly with the really severe patients, i dunno, its only guessing
but hope to see some results from anybody tested at Redlabs Belgium soon
I asked De Meirleir for a antibody test myself, and also have blood in the freezer for 120 Euros for an AB-test.
Did you find any info about travelling to Belgium or USA to get tested? I too am desperate, and will travel to either. Just need info on how to set up doctors and the test, and I will be there!
I'd go to the States, if I were you... I live in the Netherlands, and it was quite difficult to get the tubes of blood I needed, they refused to draw my blood at the hospital. I finally managed it in Amersfoort Hospital (NL) finally, with the help of a friend. What you need to do is download and print the form from the site, fill it in (imagine a doctor if need be, they won't draw blood unless they have a doctors name) and go to a hospital and try to get them to accept it. But if you can get that part done, an XMRV test is quite simple, you only need to deliver those tubes at Redlabs, within 48 hours at ambient temperature.
The only doctor that does something with XMRV is Dr. De Meirleir (Himmunitas private clinic). But the waiting lists are quite long... You can try to set up one appointment to get the blood for the XMRV test, maybe he can squeeze you in for that.
T: +32 2 266 87 40
I am getting tested in ten days by Dr.Meirleir. Frank, what exactly is going on with the XMRV testing with Meirleir?
Wasbeer went to Redlabs
When I was in Zellik (next to Brussels) about a week ago, to deliver the blood samples of some friends and myself at RedLabs, I had quite a long conversation with Kristin Metzger, the researcher who is responsible for XMRV testing at RedLabs. She even showed me around the Lab, wich was quite amazing. The reason they're just offering the culture test now, is because it's the only test they can do 'validated by the WPI'. WPI (or VIPDX) sold/gave them a license, but under strict conditions for quality standards. It took REDlabs some time to 'learn' the protocol, and it was not before every sample provided to them by WPI gave the right result, that they were allowed to start commercial testing.
If you bring them your blood, patient-form (and money) they will run your test immediately. That might seem unfair, because they have a waiting list of about 500 people (a lot of whom already have frozen samples at RedLabs) but they are going to contact all of them to ask if they still want to be tested and if so, if they want to do the culture test (expensive, bigger chance for false negatives, but already available) or wait for the serology test (cheaper, smaller (but not zero) chance of false negatives, but not yet available). So everyone on that waiting list should be expecting a letter soon, if I understood them correctly. Metzgers estimation of when the serology test would be available at RedLabs was 'about 3 months, depending on the validation process'. In the end Redlabs wants to offer the complete XMRV-testing panel, including culture, serology and the third one I forgot but you might know what I mean. If you print out the test-orderform at the Redlabs website, the blood products that are demanded for an XMRV test are suitable to do all three of those tests. It's to prevent you ever have to (fysically) come back to RedLabs if you want additional XMRV testing done once you've done one of the three. Results will only be provided after payment, because they've had some bad experiences with that in the past.
Mrs. Metzger is on a two week holiday now (while my blood is in her little culture-chamber) but I think she'll be back at work this coming monday. I thought she was friendly and dedicated (also a little cute, but I guess that's OT :Retro tongue. The other people I met there were also really nice.
YES I AM VERY NERVOUS about the result I will have within one or two weeks. If it's positive, it will be a new era for me after 11 years, if it's negative, it might be a false one, so I still have to wait a couple of months to be sure. It was quite a dilemma, go for the culture or wait for serology, I hope I chose wisely.
PS: I found it very easy to ask questions on the phone to the people at Redlabs, it's a small company, but it might be useful to know that there are people working there that speak Dutch, French, German, English and Spanish.
For the report from Redlabs. I've also spoken to Ms Metzger and found her very helpful. Not the same as actually meeting her at their lab and seeing your own test started though and it's great to read your report.
VIP dx did tell me that when the Serology test is released they will need the blood centrifuged before it is sent to their lab but that may well have changed since I last discussed it with them. This is probably a standard proceedure run on one of the test tubs on their website and doctors may already understand this.
I found the wait for results really, really hard and I totally sympathise with the stress of the week/weeks ahead!
XMRV+ in the UK
Thank you SO MUCH Wasbeer. It's great to have some more information about the plans of Redlabs and wonderful to hear that they are good professionals and dedicated to their work.
Good luck with your results although it's hard to know if it's good to be positive or negative! the waiting must be really awful!! I'm planning to get tested but I will wait for the serology test, I don't thinking I could face uncertain results.
I understand completely what you mean, but I chose a leap of faith. There is no real risk for a false postive and this is the test that was used in the original Science paper, in wich 67% was found positive. I did a little math and concluded that 67 was more than 33. Maybe I'm oversimplifying things, but it works for me.
Two more things: I can't judge if they are 'good professionals', but the WPI seems to trust them. And personally I would prefer testing positive. It wouldn't change the illness I've had all these years, but it sure would change the prospects! And perceptions!
I understand your choice, sometimes I also think like that but other times I'm afraid the result will come negative and then I wouldn't know if it's a false result.
You are right being XMRV positive can give us some explanations and open up new possibilities in the future. Even if it's awful to have a retrovirus, like you say what we have we already have, it's there and better know about it.
I got ill when I was living in the Netherlands, sometimes I wonder if got the XMRV there because there are much less CFS/ME patients in Portugal. I don't understand why but here having CFS/ME it's extremely rare I have the impression.
If the serology test will take much longer I think I will do the same as you and just have the available test., we will see how it goes.
That's actually quite interesting! It has often been my impression that there are relatively less CFS/ME patients in the southern European countries than in the northern ones. Couldn't it be a case of less information and/or (cultural) acceptance, that makes that less people are diagnosed, or might there actually be LESS patients in the south? I have no figures to support these speculations, but would like to hear what you think.
It's difficult to be sure but my impression is that there are much less CFS/ME patients here in Portugal. I only know one other patient and she also got ill in another country. My friends or family don't know anybody else that has this illness. Also luckily in my family nobody seems to be ill with it. I have the impression that there are a bit more patients with Fibromyalgia but I've also seen people who were diagnosed having Fibromyalgia and I had the impression this was not the correct diagnostic.
Of course it's always hard to know if ME patients are "hiding" under depression diagnostics but also that I find that there is less depression in Portugal then in the north European countries. This are just my impressions so they are limited to the people I know or hear about.
have you any idea how you became ill ? If this question is too personal, you don't have to answer, of course. Personally, I don't think there will be much % differences between countries, and if there are, then the solution might lie in the foods they eat
In Spain (South Europe)there is a lot of CFS patients, mainly in Catalonia, Valencia, Pais Vasco, but also in Andalucia (South Spain)...There are not CFS patients in any country if there are not CFS doctors.I think CFS is related to EBV, mononucleosis and industrial sites with toxics that impair the inmune sistem.Dr De Meirleir now visits in Madrid, Spain, and in Barcelona are five CFS doctors.They have all a very long waiting list.
Health authorities dont accept the illness like a biological one, only like phsycosomatic and psyquiatric one.
They think also this illness dont deserve a dissability for the work.
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