Does De Meirleir have concerns about the xmrv serology test?

Berthe

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I just found out at the Belgium forum that a patint of dr. De Meirleir, who visited him last tuesday, asked for the new selologytest by the WPI - a test that is made available by Redlabs, Brussel sending the blood to Nevada - and he refused to.
He told his patint that he didn't want to corporate because the results of the test doesn' prove anything. A lot of people test positive and do not have the disease, he says.
Neither does the test show in what part of your body the disease is in.
I quote this patint who on her turn quote De Meirleir: "These Americans want to make big money fast. It is a waste of money".

I absolutely don't understand. Nor in the culture, nor in the PCR of the blood one can locate the virus in the body. Why would he be opposed to the test now Redlabs are 'advertising' the possibility?

Love,
Berthe
 

ukxmrv

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Maybe he doesn't aprove of the methodology used by Redlabs? Rather than do the Serology test themselves they are sending bloods to VIP dx in the USA. It isn't clear if they are centrifuging the blood or shipping on dry ice. VIP dx has been very specific on time delay problems and shipping problems when I have discussed with them before.

I'm only bringing this up as a possibility here and may well be wrong.
 

Berthe

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RED Laboratories has made an agreement with VIPdx, Reno, Nevada, to offer serology testing. Samples will be collected in our laboratory and sent to VIPdx for analysis.

To perform this test we ask 1x serum separator tube (yellow cap).

Cost of this test is 219€. This price includes first processing of samples (serum separation), storing, shipping to the USA and reporting of results.

I just copied this from their website.
 
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"He told his patint that he didn't want to corporate because the results of the test doesn' prove anything. A lot of people test positive and do not have the disease, he says."


Some HIV carriers do not develop AIDS or show any symptoms. I have read this in news articles!
 

ukxmrv

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I've seen that Berthe. What we don't know is how well this process is actually working. It's hard to ship Europe - Nevada in a small timeframe. We need to know the whole story.

Be interesting to see exactly what Dr DM is commenting on. Maybe he didn't feel good about this specific patient or something.
 

Berthe

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Tests currently offered at RED Laboratories (Brussels)

Co-culture
RED Laboratories has licensed the proprietary XMRV test from WP Biotechnologies, a wholly owned subsidiary of the Whittemore Peterson Institute. We use the co-culture procedure, where the sample to be tested is put in contact with an infection-sensitive cell line. XMRV is allowed to replicate in the cells for several days, resulting in significant amplification of viral titers. The amplified virus can then more easily be detected by PCR or Western Blot.

To perform this test we ask 3x 8 ml whole blood in Na-heparin tubes, 1x 2ml yellow cap tube and 2x 2ml whole blood in EDTA tubes. Specimens must be received within 48 hours at room temperature.

Cost of this test is 340€. This price includes the co-culture and a screen for other MLV-related viruses by direct PCR on whole blood.


Does anybody know what Dr. De Meirleir share is in Redlabs? I've heard he's also an entrepreneur and involved in Redlabs.
 

Berthe

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I've seen that Berthe. What we don't know is how well this process is actually working. It's hard to ship Europe - Nevada in a small timeframe. We need to know the whole story.

Be interesting to see exactly what Dr DM is commenting on. Maybe he didn't feel good about this specific patient or something.
I'm pretty sure it isn't related to this patint. At the Belgium conference last week he also mentioned the fact that the serologytest wouldn't prove anything. At that moment people in the audience asked if it would prove anything to the health inssurance-companies and he said no. At that moment I thought his saying no reffered to the insurrance matter.
 

ukxmrv

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Thanks Berthe,

You did such a great report and we were so lucky to have you there.

I do appreciate his point of view in that way. In the UK the test result is not being accepted as valid by some doctors (let alone insurance companies).

Hope that this new report is accurate and not just a patient misunderstanding. We have had disgruntled patients in the UK making damaging reports on doctors before. They find themselves bombarded with people asking over something that is a mis-report. Stops them from being able to do their work. Also stops them from talking freely. All very curious.
 

ukme

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I think they do the actual XMRV test in Brussels don't they? I also believe that KDM has a part ownership in Redlabs. From a personal point of view, I think the man is stretched to the limit with his many commitments, and I'm not sure posting second hand information about what he did or did not say to a third party is helpful. My daughter was offered the Redlabs XMRV test only last month by KDM, so perhaps this is an individual case that is different as ukxmrv suggests.
 

consuegra

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I agree with ukme. This report does not sound like the de Meirleir that I have seen talk in multiple settings and spoken to personally a number of times.

I spoke with de Meirleir in Reno in August 2010. Since my daughter's first two tests were negative, he said to do the serology test. He said that the serology test takes one drop of blood and can be done in a day. On another occasion he said that it might be necessary to do a stomach biopsy to find the virus.

It would be nice to hear more positive information about de Meirleir and his treatments ideas, as he is "all there, all the time". This random speculation about him (and others) is for the birds. The idea that he is in love with money is a fine joke. The guy makes very little money going to Australia and Norway, visiting people who are bedbound. He charged me 70 euros for a long office conversation, the best deal ever. This guy is just great, one of the top five.

Chris

http://cfspatientadvocate.blogspot.com
 

Mark

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Thanks to those who've clarified that this seems to be a case of "chinese whispers". My first guess is that whatever De Meirleir said probably got a bit mangled along the way. I can easily imagine that in any doctor-patient conversation about this subject, there are several points to be made, for and against getting tested. I often have this experience myself, of giving my opinion on a subject, talking for a while and presenting both sides of an argument, and then later hearing myself quoted back as if I hold the exact opposite opinion to what I actually believe. It always seems to indicate that the person I was talking to was somehow predisposed to only hear the half of what I had to say that confirmed whatever they already assumed about me. When one talks - or writes - a lot of people only hear or read a small fraction of the words you say. Communication between humans can be very inaccurate sometimes...

De Meirleir reported XMRV test results recently, and presented his poster at the XMRV conference too, with analysis of his XMRV+ patients' results, so the only way this rumour can make any sense to me would be if he's of the opinion that the test should be for research purposes only at this stage, and that there's little benefit to patients getting the test done, for certain individuals at least. To be honest, there's a reasonable case to be made there; the benefit of getting a confirmed positive test isn't always obvious, especially since one can assume that an improved test will become available through other routes by the time there are any treatments available with solid evidence behind them. However pro-WPI a physician might be, I think it would be irresponsible of them not to explain that angle to a patient asking about testing, so my guess is that he was just presenting a realistic appraisal, suitable to the patient, which has got lost in translation.

"Refused", for example, can often be putting things strongly; in my professional capacity I'm sometimes accused of "refusing" to do something when actually I've just put up an argument against it and the other person didn't then argue back, and the matter was dropped - whereas in fact I didn't "refuse" to do it; I would have been open to doing it if they convinced me it was a good idea, but what seemed to me to happen was that they were persuaded by my argument against it. Similarly the comments about making money could easily have been de Meirleir quoting somebody else's point of view - maybe the patient asked why some people are distrustful of the WPI.

I appreciate the sentiments about posting of second-hand information but I'm not one who says that people shouldn't do so. So long as you make it clear where the info comes from, it's up to the reader to put it in context, and we get so much good second-hand information on PR that I guess you have to just take the rough with the smooth. It would be really nice to have some open channels to some of these top researchers and physicians though, to consolidate our questions and get answers on key issues from them in a way that hopefully saves them time (from answering lots of emails asking the same questions) rather than taking up their time.
 

acer2000

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it might be that, like FeLV, some portion of the population is exposed to the virus and fights it off, but maintains antibody for life. Or maybe the virus could be dormant and not causing illness in some people, but they test positive for serology. So it could be that serology just not a good indicator of disease, and that he thinks the other tests are better to show how sick the person is.
 

SOC

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it might be that, like FeLV, some portion of the population is exposed to the virus and fights it off, but maintains antibody for life. Or maybe the virus could be dormant and not causing illness in some people, but they test positive for serology. So it could be that serology just not a good indicator of disease, and that he thinks the other tests are better to show how sick the person is.
This sounds like a likely explanation. KDM may have been pointing out that a positive serology test wouldn't prove any points to insurance companies, primary care physicians, and so on because we know there's a ~5% background "healthy" population testing positive for XMRV. In other words, any nay-sayer can argue that a positive test means nothing about whether you have the disease ME/CFS. He may have even said something to the effect that for a patient not involved in research the test is a waste of money because there's nothing the patient can do with the info.

It's easy to see how that kind of information can get confused going through several sets of ears and mouths.:Retro smile:
 

Sushi

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Here is another thought: I just got a positive by culture from VIPdx and serology pending. My friend who sent his blood at the same time got the same result. Earlier they were saying that the serology test had a much faster turnaround time than the culture.

Maybe they are refining it? Maybe looking for anti-bodies to other MLV's? Just speculation, but the results they seem to be sending out don't seem to match with their earlier time estimations.

Sushi
 

Berthe

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Dear everybody,

You are right. The information was not first hand and that's why I made this clear in my first post. I can only quote someone if I hear them say it directly to me. And of course then it has to stand the test of time and my Alzheimer light is not always helping. In the case of the conference I made notes, like at university, so I' pretty sure they are correct.
I don't want to speculate on something and I will be more carefully phrasing my words the next time. I think dr. De Meirleir is a fantastic physician, researcher and person. He is highly intelligent and a well-spoken guy. In Belgium everybody knows him and he is highly controversial. If you go to a medical doctor, your cardiologist, pharmasist or talk to a friend-scientist everybody is warning you. I think you don't get these reactios as much in other parts of the world.

In my search for an honest and objective picture of DML, I sometimes seem to get inflicting and inconsistent information. It's not a personall matter but these inconsistencies 1) with telling us that anti-retrovirals are not usefull and 2) the serologytest not being usefull, are absolutely raising questions in my highly critical mind. Therefor I asked you people what to make of it? I'm only getting more confused.
Mark is right. I will not speculate on anything in the future. I'm sorry!

Love,
Berthe
 

Alexia

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I think we need to be careful discussing things that one patient wrote in another forum. It's not first hand information and a lot of misunderstanding can happen. I speak Dutch and I also read the post of that patient in the Dutch/Belgium forum and to me it was not clear at all if what the patient said was what Dr. De Meileir meant.
To me Dr. de Meileir meant to say that having a positive serology test doesn't mean that you are ill so the PCR is more reliable as a marker for XMRV being a possible cause for the illness.
 

Alexia

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I think the title of this discussion should be changed because it's misleading... Dr. De Meirleir is NOT against the possible relation between XMRV and CFS/ME in the contrary. He's testing his patients and trying some therapies so I don't find correct to have this title here. he is not against the serology test as far as I understood, he just thinks that being positive by serology doesn't mean you are ill.