• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

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

julius

Watchoo lookin' at?
Messages
785
Location
Canada
To eliminate all doubts: today ORTHO got the confirmation from dr. Harvey Alter and from dr. Judy Mikovits, both by telephone. Publication of the paper is just a matter of time.


Thanks,

Not sure if you can go into more detail, but, what exactly did they confirm? Any quotes possible?
 

kurt

Senior Member
Messages
1,186
Location
USA
I was just about to fall asleep when i did a last scoop for news, so the brain isn't the best. I just looked at the PDF of the conference, did I not see it in print? 'we at NIH have confirmed the WPI findings'. Why then is it not 100%?

In print at a closed conference is NOT the same as published. That information was not intended for public announcement. Therefore this is preliminary, and until a paper or public announcement appears, announced by proper channels, this is still a rumor.

You are arguing semantics. You and Cort together started that rumor here on this website. That is not the same thing as a news story published by a wire service. I don't get why you are using the rumor you helped to start as evidence that the wire service story might be untrustworthy.

Semantics? Both were leaks. I did not say they were identical situations. Things with the CDC announcement rumor happened exactly as I explained. It was an accidental leak, picked up by Cort because I forgot to say it was confidential (which it was).
 
Messages
18
Location
USA
I'm not feeling very good today, so if this comment is redundant or just super obvious pardon me, but did anyone else notice on slide 27 (the 1st un-numbered slide towards the end of the presentation) that it lists XMRV as a prioritized EID threat as of August 2009 and also says "The only barriers to rapid development and implementation of such diagnostic testing capabilities are regulatory, not technical." Regulatory, not technical??!!
 

bullybeef

Senior Member
Messages
488
Location
North West, England, UK
Hi bullybeef,

This confirms my suspicions, but don't be surprised if it goes to 10% - that would fit with the Dubbo study. However, it is also possible that prevalence varies by geography, so in some aread it could be 4% for example, and in others 12%. We will know in time.

I have been working on an approximate world prevalence of nearly half a billion since October last year. I am both happy and sad that it looks like I was right. Now we have information that can shake the world, although it will be better once the results are official. Dont be surprsed if the NIH and FDA make a formal announcement in a few days.

Bye
Alex

I make you right Alex, if you look at probable prevalence in other conditions that have been linked, such as autism, and GWS etc, etc that would push up the percentages. Half a billion XMRV carriers is a very scary, but real proposition, and it may take that many carriers to get the governments to act now.

However, that kind of figure would make sense of trying to keep XMRV under wraps. The global blood supply is without question infected, and it’s also an awful lot sick mouths to feed.
 

Sing

Senior Member
Messages
1,782
Location
New England
I wonder if part of the hold up on the official release of this information is connected with the need to have an accepted test for XMRV both for individuals and for the blood supply. Any ideas?
 

Doogle

Senior Member
Messages
200
In print at a closed conference is NOT the same as published. That information was not intended for public announcement. Therefore this is preliminary, and until a paper or public announcement appears, announced by proper channels, this is still a rumor.

Sorry, but I don't believe a copy of a conference presentation by Dr. Harvey Alter of the NIH could be in any way considered a rumor.
 

CBS

Senior Member
Messages
1,522
I'm not feeling very good today, so if this comment is redundant or just super obvious pardon me, but did anyone else notice on slide 27 (the 1st un-numbered slide towards the end of the presentation) that it lists XMRV as a prioritized EID threat as of August 2009 and also says "The only barriers to rapid development and implementation of such diagnostic testing capabilities are regulatory, not technical." Regulatory, not technical??!!

I was wondering if this has been an AABB priority since then ("AABB Prioritized EID Threats (August 2009)") or if it had been added later. If I'm not mistaken, there was a meeting of retrovirologists (in SF?) the summer before the Science article.

The title of the slide is also quite interesting "Proposed RPM-EID Chip by TessArray"
 

dannybex

Senior Member
Messages
3,561
Location
Seattle
Amazing but...

TRUE...?

""The data in the Lombardi, et al Science manuscript are extremely strong and likely true, despite the controversy", was one comment on the XMRV findings reported by Alter in Zagreb. "Although blood transmission to humans has not been proved, it is probable. The association with CFS is very strong, but causality not proved."

Even if XMRV turns out not to be the sole cause, or even causal -- or perhaps a retrovirus that takes advantage of a dysfunctional immune system -- the fact that the #@** FDA and NIH may actually be confirming this is GREAT NEWS FOR ALL CFS/ME/CFIDS (etc., etc.,) research.

I guess we'll know for certain when the paper is published.

:Retro smile:
 

Sing

Senior Member
Messages
1,782
Location
New England
The last two staff writers at the New York Times who covered Chronic Fatigue Syndrome and XMRV whom I found are Denise Grady and David Tuller, but I don't know how to contact them. Their policy would probably not be to write anything before this news becomes more official, but someone here might give them a heads up.
 

usedtobeperkytina

Senior Member
Messages
1,479
Location
Clay, Alabama
Yes, Doogle, he is a firsthand source on a study coming from the agency he works at and in the department that likely contributed to it. (In other words, he is not a secretary in the pediatric muscle wasting department.)

So what he said about their study confirming is not rumor. And his statement of study to be published can be true according to his knowledge at this time, although that can change, as Kurt said. A paper can be pulled any time before publication.

Tina
 

julius

Watchoo lookin' at?
Messages
785
Location
Canada
Damn, now I'm going to be checking in here every 30 seconds until the thing is published!!!

Just hurry up and publish the freakin' paper!
 

V99

Senior Member
Messages
1,471
Location
UK
Usually science papers are published on Thursdays and Fridays. Does Science report anything on a Wednesday. ( soon to be known as CFS is real Wednesday)