De Meirleir - XMRV Testing in Norway THIS THUR AND FRI

Otis

Otis

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De Meirleir - XMRV Testing in Norway THIS THUR AND FRI. To be followed by study treatment.

From Google Translate

Prof. De Meirleir as ours was approved as a specialist in internal medicine in Norway, invites old and new patients who wish to be tested for XMRV virus, as to the Source of Health in Oslo on Thursday the 5th (9:00 a.m. to 3:30 p.m.) or Friday the 6th August (9:00 to 12:00) to take a blood test. Price: 340 .

There must be an email to iraDS@ehmb.be no later than Wednesday 4 August before. 12:00 when you come! You do not need to fast or take other precautions before this test.

KDM is an international network of XMRV- physicians mutual exchange treatment results. They now have five possible treatment of XMRV that seems to work.

Patients who test positive and who want to wait for treatment, will be invited to participate in a treatment study that will start in October 2010.

There are doctors in the network behind this study. Prof. De Meirleir has some free hours of consultation on the above dates. Questions about this can be addressed to iraDS@ehmb.be. Health as the source is located in Nydalen and address: Gjerdrum Road 17A, 0484 Oslo
 
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hensue

Senior Member
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What are the five possible treatments of xmrv? It is great they are testing in Norway. Treatment study will start in Oct 2010? That is exciting and not that far off. Thanks for good news.
Susie
 
A

acer2000

Senior Member
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I am really interested to hear what treatments they are going to try in this trial. But even if they people feel better in the trial how will they know they are actually beating down the virus? They don't even have an accurate test to measure the viral load yet? Interesting development...
 
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aruschima

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Hi, i just came from Dr.Meirleier and he is testing three test for XMRV and also told me that he has personally tested some treatment with ten patients, all back to work by now. I am cautiously optimistic, but do know that Dr.Meirleier is working with several groups and especially is taking the issue of XMRV/ME/CFS to the European Parlament very soon.

Accurate test for coinfections are tested since a very long time by Dr. Meirleier and also immune abnormalities.

He did not want to go into specifics about which meds he used, he said it has to be officially tested and approved.
 
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acer2000

Senior Member
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821
Hi,

I am curious what KDM said about transmission of CFS, and of XMRV? Does he see that there are often people infecting/passing CFS to friends/families/spouses? There has been much speculation about this, but if he has tested enough people to go to a clinical trial, it seems he might have some actual data on this.

acer2000
 
W

WithHope

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aruschima said:
Hi, i just came from Dr.Meirleier and he is testing three test for XMRV and also told me that he has personally tested some treatment with ten patients, all back to work by now. I am cautiously optimistic, but do know that Dr.Meirleier is working with several groups and especially is taking the issue of XMRV/ME/CFS to the European Parlament very soon.

Accurate test for coinfections are tested since a very long time by Dr. Meirleier and also immune abnormalities.

He did not want to go into specifics about which meds he used, he said it has to be officially tested and approved.
Click to expand...

you know all my fingers and toes are crossed re the above,, but I must say sadly that KDM has made many promises before - usually directed straight to patients.. I have yet to see any of these grand promises come to anything substantial.. I hope more than anything I am wrong - and he is right on this one - if he has treated people for XMRV specifically and this in turn eliminated the illness - then this is wonderful news.. Again all fingers and toes crossed.
 
Tony

Tony

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I don't think that De Meirleir has said what THE cause of ME/CFS is for everyone. It's not that simple as far as we know. H2S metabolites are found in a significant group (about 80%) according to the test available. I think 15 Euros or whatever it is, is very reasonable. Aberrant prions were found in some very ill patients too, but again, I don't think he said that had to be the cause. It's just what they found.

Prof DeM has said that ME/CFS is a variety of infections both viral and bacterial, gut dysbiosis, food intolerances etc. Now that xmrv (another viral infection) is thought to play a part by reputable science he is interested in that too. I don't know what more you can ask of him? The money of course goes to the lab that does the testing, just like it does for any lab.
And yes, there will be another test very soon, serology for xmrv.
ME/CFS is a bit like the wild west, it's frontier science; who knows what we'll find in time? I'm just grateful that we have researchers and doctors willing to keep trying on behalf of us all.
 
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Rivotril

Senior Member
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aruschima said:
HI am cautiously optimistic, but do know that Dr.Meirleier is working with several groups and especially is taking the issue of XMRV/ME/CFS to the European Parlament very soon.
.
Click to expand...

From what I heard he indeed has put 10 patients on Gc-MAF, (and i believe at least some of them also nexavir and Artesunate).
"All back to work" sounds a bit too good to be true but let's hope the medication is really doing a good job.

But what exactly is he going to do with European parliament??

if the above is true, it would be better to also publish the results of this (although small) casy study, at least let him contact a newspaper or something like that, cause that would be huge news..
I hope for the best but just wait for whats coming...

I don't expect Alter Study to soon also, I would be glad if it will appear somewhere in september...don't think that things are coming faster then that...
 
Frank

Frank

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Kenny said a H2S study will come out. The test was only created to give the patints a stronger biological support. I don't know what he claimed and what not, but you know the press.

He's on our side, don't doubt it!
 
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Rita

Senior Member
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235
Prof de Meirleir confirms XMRV virus in European ME/CFS patients
A short interview with the prof and patient on the Belgian TV, VTM



You can see it at:

vtm.be/nieuws/binnenland/46847-virus-veroorzaakt-cvs


Anyone can translate a bit?
 
Tony

Tony

Still working on it all..
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Hi KFG,

As Frank mentioned, we know some journalists like to play things up for a 'better' story. The news report that you posted mentioned studies done here in Australia. This could mean unpublished data from Melbourne University which I've seen a little of. Or it could be published in studies I've not seen...

There is the small poll on this forum of reactions to the H2S test which agree with the 80% figure last I looked at it. Of course this is just a tiny non-scientific sample...:) But if I ever ask my doc who uses the test, I could find out if his findings agree with the figure.

My understanding is that the science of the test itself finding H2S metabolites isn't in doubt.

We're still waiting for the H2S paper which I thought would be out already...

I don't know where KDM has said he cures people? He certainly didn't say it to me!...:) I've heard some are back to work, some get functional improvement and the severely ill can be very difficult to treat...sounds like what happens to most, not just his patients.

I'm happy to have KDM and the other docs who are working at the pointy end share their ideas with us asap rather than wait another year (or never in some cases) before a paper comes out. It's the same to me as Dr Lerner's data about using Valtrex in a subset of patients and having some excellent results. There is no peer reviewed paper, but the data from his practice seems good to me.

Maybe I'm just an irrepressible glass half full kinda bloke!

Cheers...:)
 
I

Indica

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Great news.
smileynormal.ico
 
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