FDA and NIH confirm WPI XMRV findings (report of leaked presentation)

[judderwocky]

right ... the germans already went through this with PC ... they said it was geographic infection... then that study on respiratory secretions came out and DID FIND IT in at least 2-3 % of healthy controls.

Things are starting to turn around for us...
Its like that scene in the lord of the rings...

http://www.youtube.com/watch?v=UD1xLI1RhTs

 

[julius]

and we don't know the cohort of the NIH/FDA work. Maybe there's brits in there. That would be cool!!

Plus, VIPDX have been finding it....so it would be a very tenuous argument for press to make.

 

[bullybeef]

The divergence between 4-7% in one country seems odd to me. I wouldn't be surprised if they have tested other countries, eg Canada, South American(?).

 

[Greggory Blundell]

My understanding is UK folk have already tested positive, and I derive that from posts I've read here. Unless I misinterpreted.

 

[Sasha]

Sasha,

A link was posted earlier to Hillary Johnson's blog that provided independent confirmation of the study and an emphasis that the CFS positive rate may be "significantly higher" in this study than the Science paper (67%). This pretty well iced it for me.

Here you go: http://oslersweb.com/

Otis

Thanks, Otis! That looks definitive! Here's a link to that specific post.

Interesting that he's saying the CFS XMRV+ rate is higher than in the original Science study, given that that is what Judy Mikovits has also been saying about the original study (reported as 67% using the methods reported in Science but 98% using additional methods done later). Also interesting that the XMRV+ prevalence in the population is coming up a bit higher, as would be expected (given that in the original Science study it was 4% using the same less sensitive methods so one would have expected the background population rate to come up higher in more comprehensive tests).

I still can't take this in!

 

[ukxmrv]

Some of the individual patients in the UK who are paying to be tested privately are XMRV+.

In addition the WPI has taken blood from some UK patients (about 70 so far) for a study. They may have the interim results from that as well.

 

[Martlet]

Some of the individual patients in the UK who are paying to be tested privately are XMRV+.

In addition the WPI has taken blood from some UK patients (about 70 so far) for a study. They may have the interim results from that as well.

Are they letting participating PWCs know their individual test results?

On another note, with this latest news, I'm ready to take the plunge and pay for the test.

 

[Daffodil]

there was supposed to be one positive study and one negative coming up....so is the negative one going to be from the CDC?

 

[ukxmrv]

Marlet,

The people in the study will eventually get their results. Either when the paper is published or when it is accepted for publication. Sometime around then.

That was the last I heard. Don't know if it is still the same. The WPI may have the interim results (not individual patients as yet)

 

[SeaShel]

I just started a thread in the Action! Alerts and Advocacy section about tee shirt fundraising ideas for anyone that's interested.

And now, back to our regularly scheduled programming.....

Shelley

 

[Martlet]

The people in the study will eventually get their results. Either when the paper is published or when it is accepted for publication. Sometime around then.

That's good to hear!

 

[serenity]

i'm with ya' Martlet, once the news is official i am ready to go to the doc & get the test, well once they have one standardized i guess.

 

[camas]

I'm with Marlet and serenity on getting tested now. Assuming I test positive, I'm wondering how long it would be before insurance would cover the meds? The drug cocktail Dr. Deckoff-Jones is taking runs around $1,800 a month. Although AZT alone is fairly affordable at $170 a month, but would it be wise to go with just one drug? Any thoughts?

 

[LaurelW]

My insurance won't cover off-label drugs. Am looking around for Medicare supplement that does for next year. Any ideas?

 

[Rrrr]

My insurance won't cover off-label drugs. Am looking around for Medicare supplement that does for next year. Any ideas?

ditto. i need to do this too. what are the meds we are talking about

raltegravir
azt
tenofovir

right?

 

[camas]

Yes, raltegravir, azt, and tenofovir. You can get AZT in generic form now, so that's why it's so much less expensive than the other two.

 

[Esther12]

How is it wrong? We all saw the slide Alter presented at the conference.

I've just realised what's been bugging me.

Was it really water-tight that the WPI results which had been validated were the ones linking XMRV to CFS?

Seeing as this was related to blood safety, could they have just been refering to XMRV being present in blood, and potentially transmissable via transfusion? Or the result that 4% of the population have an XMRV infection?

From this "Although blood transmission to humans has not been proved, it is probable. The association with CFS is very strong, but causality not proved. XMRV and related MLVs are in the donor supply with an early prevalence estimate of 3%‐7%. We (FDA & NIH) have independently confirmed the Lombardi group findings" it's possible that they did not even look at CFS patients.

From the look of the slides, I'd say he was talking about CFS - but we can't hear what he was saying while these slides were up - and the slide isn't as clear as I'd like. Hopefully I'm being over cautious here, but it's possible we've really mis-read this.

 

[alex3619]

Hi Esther12

This has been bugging me too. I don't think its likely, but that could be just wishful thinking on my behalf. However, surely someone who knows the facts would have set us straight - or is that just more wishful thinking? The tone of some of the statements made by people who should know indicate that they confirmed the CFS connection, but I would really like to see that in the paper or an official announcement.

Bye
Alex

From this "Although blood transmission to humans has not been proved, it is probable. The association with CFS is very strong, but causality not proved. XMRV and related MLVs are in the donor supply with an early prevalence estimate of 3%‐7%. We (FDA & NIH) have independently confirmed the Lombardi group findings" it's possible that they did not even look at CFS patients.

 

[Martlet]

My insurance won't cover off-label drugs. Am looking around for Medicare supplement that does for next year. Any ideas?

If all this is proven, then hopefully some of these drugs won't be considered off-label?

 

[Esther12]

surely someone who knows the facts would have set us straight

I feel the same.

But I really don't know. Things move so quickly on the internet, the fact that they've not issued a denial within 48 hours can seem significant. Maybe they're stil on old time, and feel happy to leave it two weeks until the paper comes out (for example).