CDC replication study delayed in order to prepare a press release?!

[Adam]

is telling me they found some association between xmrv and cfs. I'm thinking they put the german positive study on there web site as a kind of preparation to there results.
I bet they will be taking the angle of yes we found xmrv at a higher rate than in controls but this could mean that people with CFS have something wrong with there immune system that allows them to have xmrv. They will use the German study finding XMRV at a higher percentage in immunocompromised patients to make there point and prevent a panic of sorts.
Then they will say much more study is needed to determine if it is causal for some patients or a select subset of patients.

Me too Frickly. It sounds about right. And at this juncture, is perhaps, all they will have to admit to, which is the point I guess - admit what you can't deny. Full Stop. End of press release.

 

[Knackered]

Do any of you know what criteria they used to select patients? Or even what samples they used and where they came from?

I'm hoping someone provided them with CCC samples rather than them selecting their own.

 

[VillageLife]

its a worry that this CDC study was done with an older test....Dr Holmberg said they have only just about got the test right now, so maybe they should of waited to do a study.

It does worry me also that all these 'new' tests are coming out, I hope that doesn't mean the test used for the first 50 in the UK WPI study is now outdated!? will the WPI be using the same 'older' test for the next few hundred they test for the UK study, or will they be using these new tests? If anyone can find this out, it would be interesting.

 

[Robyn]

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[VillageLife]

It was said that this study was being conducted prior to the WPI science article coming out.

when did the Germans study begin that found XMRV in the respiratory tract? was that pre WPI science ?

 

[Robyn]

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[JT1024]

It appears there ARE tests..... but the ability to test high volumes (for the blood supply) is needed. That is where Abbott Laboratories comes in. See below:

Emory and Abbott both are on record.

Emory info is here: http://insciences.org/article.php?article_id=8676

Abbott's John Hackett, Jr, presented at the February CROI 2010 conference in San Francisco. Abbott makes the PRISM. From their website: "ABBOTT PRISM which is a fully automated, high-volume blood screening instrument designed to enhance the safety of the blood supply. Before a blood donation can enter the blood supply, it is tested for evidence of exposure to viruses that might cause disease. The ABBOTT PRISM system is used in more than 30 countries. Nearly half of these countries rely on ABBOTT PRISM to screen 100 percent of their blood donations."

 

[Robyn]

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[JT1024]

Robyn,

I read the study from work and the specimens were respiratory (?sputum, tracheal aspirates, broncheal lavage, etc). As you stated, the samples were collected between 2006 and 2009. They reported close to 10% positive for XMRV in the transplant group. They were not able to prove the ability to transmit the virus but they suspected it was due to the age and storage of the samples. I may have the study on my flash drive.... If I find it, I'll see if it can be added to the library.

~ JT

There is already a link for the German study here: http://www.forums.aboutmecfs.org/showthread.php?5031-German-study-finds-xmrv

 

[usedtobeperkytina]

ok, the thought I had has come and gone a few times. I think I can hold on to it long enough to post.

If the CDC has an XMRV study and is expected to publish soon (positive or negative), then that perfectly fits with the obvious failure for Unger or committee members to mention it.

All of them know that it would be wrong to discuss a study approved for publication. And, it appears, Klimas knew of it. And, so likely at least 1/4 of the people in the room knew about it. So it would be highly improper to ask Unger about it and Unger isn't going to mention it since that would only lead to questions she couldn't answer.

You have to realize, on not only this, but other sensitive matters, they have to be careful when in front of the "audience" and especially the camera.

Now, who knows what kind of discussions were held in subcommittee, dinner afterward or in telephone calls.

Tina

 

[Bob]

ok, the thought I had has come and gone a few times. I think I can hold on to it long enough to post.

If the CDC has an XMRV study and is expected to publish soon (positive or negative), then that perfectly fits with the obvious failure for Unger or committee members to mention it.

All of them know that it would be wrong to discuss a study approved for publication. And, it appears, Klimas knew of it. And, so likely at least 1/4 of the people in the room knew about it. So it would be highly improper to ask Unger about it and Unger isn't going to mention it since that would only lead to questions she couldn't answer.

You have to realize, on not only this, but other sensitive matters, they have to be careful when in front of the "audience" and especially the camera.

Now, who knows what kind of discussions were held in subcommittee, dinner afterward or in telephone calls.

Tina

Ah yes, of course... that makes so much more sense now! We were wondering why she wasn't being interviewed more comprehensively, weren't we. I think this is more reason to be optimistic.

 

[V99]

So why would Unger say the Science paper was contamination?

 

[Bob]

It does worry me also that all these 'new' tests are coming out, I hope that doesn't mean the test used for the first 50 in the UK WPI study is now outdated!? will the WPI be using the same 'older' test for the next few hundred they test for the UK study, or will they be using these new tests? If anyone can find this out, it would be interesting.

I don't think we need to worry about that, villagelife... Judy has consistently said that she will always re-test previously tested blood samples using the most up-to-date testing.
Also, for a research project (as opposed to commercial or clinical testing), they don't have to wait for a new test to be standardised, or approved, or agreed upon... they can just get on and use the most up-to-date tests available to them.

 

[Bob]

So why would Unger say the Science paper was contamination?

Are you are confusing Unger with Huber? I think you must be (easily done)... Huber recently said something about contamination at the conference, whereas Unger is part of the CDC and the CDC has not accused the WPI of a contamination.

 

[V99]

Yep, sorry Huber. Ignore the last comment.

 

[Bob]

Yep, sorry Huber. Ignore the last comment.

lol, easily done! especially with our brains!

:Retro smile:

 

[Robyn]

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[VillageLife]

I've been thinking.......

What ever the results of this weeks CDC studies or any future studies, we shouldn't let any of this worry us or get us down.

Because.....8 months ago one October day WPI gave us something special back, they gave us hope - something we had lost years ago. And I feel with this hope comes confidence that whether XMRV is the answer or not, we will one day find out what is wrong with us and eventually get well.

Since October I began to listen to music again, something I had stopped doing for pleasure but the last 8 months music has become part of my life again.

What ever happens WPI have woken me up, given me back a piece of my self which I lost, I have stopped blaming my self for being ill, been easier on my self and looked after my health more, they have given me back hope and that is something so precious.

So what ever happens we are stronger now.

 

[V99]

Very well said Villagelife.

Can I add, that no one should blame themselves. To live one day with this shows how much strength you have.

 

[VillageLife]

You to hun!!