• 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, 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)

U

usedtobeperkytina

Senior Member
Messages
1,479
Location
Clay, Alabama
Sure wish it included the numbers they found. I didn't know if "confirming Lombardi's study" refers to the 4% of healthy controls or the 67% of CFSers. Surely, the numbers are not exact. Would love to know the details: what blood did they test, fresh or frozen, any WPI samples, what rate did they find in CFS, how many in study, what amount in healthy?

Well, although we don't know the exact info, his comment of association with CFSers as strong is real good news for us. And of course, it is in blood supply.

We will know soon. It will be published soon. I'm giddy. And I have so much hope for my fellow patients who have been sick for decades and my fellow comrades in the UK. Finally,

How ironic that it is a couple of Dutch reporters that got this info. No matter what you say about the reporting in the past in that country, got to hand it to them for doggedly following this story and getting leaked info. Hats off. Congrats you two. Thanks for not letting this go. Will you be getting comments from the scientists that had such derogatory comments against the WPI study?

"Oh, NIH, FDA, you can't trust their studies. I bet they have contamination."

LOL LOL LOL That would be classic. It's like being in a car on the train tracks and the train just keeps coming and coming and you can't make it stop.

And how embarrassing for the CDC. They didn't get it right in 1980s and didn't get it right this time either. And they are supposed to be experts in infectious disease. Don't you hate it when you put egg on your own face?http://www.youtube.com/watch?v=7kUnq8DDN7I

Hey, since so many of us (not me) got sick in the 1980s, I think the following song is appropriate. Let's Party. It's time to have the biggest party we'll every have. Who can dance like the man in purple?

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

Tina
 
julius

julius

Watchoo lookin' at?
Messages
785
Location
Canada
The Zagreb workshop was a month ago...the 26th 27th of MAY!

So when he said the paper would be published soon....that was a month ago now.
 
R

Rivotril

Senior Member
Messages
154
julius said:
The Zagreb workshop was a month ago...the 26th 27th of MAY!

So when he said the paper would be published soon....that was a month ago now.
Click to expand...

No, the press release says that Ortho just contacted Harvey Alter today and this was told them today...
they havent got this leaked information for all that time...
 
U

usedtobeperkytina

Senior Member
Messages
1,479
Location
Clay, Alabama
Yeah, Kurt, you are right. Although he confirmed a publication is coming soon, you could be right. Until it is published, it can be pulled, for whatever reason.

But, to me, this guy at NIH says their study confirmed it. And he would know.

So unofficial or official, published or not, a government official in the know says that FDA and NIH confirmed it with their own study.

Notice, this is no confusion of what was said. These are quotes from the lecture, either taped or written.

Tina
 
U

usedtobeperkytina

Senior Member
Messages
1,479
Location
Clay, Alabama
Confused, who released this press release? Ortho? A health journal releases a press release that their journalists have a story. Why don't they just do the story.

What am I missing here?

Tina
 
Elliot

Elliot

Messages
77
Location
Leicestershire, England.
Agreeing with Kurt, I got really excited but then saw that it has not been confirmed yet/papers have not been released. It's good to know they're in the reviewing process though finally. And if these leaks are true then it's great news for future potential treatments for us all! :)

Lets just hope this is confirmed and we can finally know the root cause of CFS/ME!
 
B

bullybeef

Senior Member
Messages
488
Location
North West, England, UK
Journalists certainly can’t quote the guy word for word, he could take them to court. And even if the FDA or NIH try to pull it now, the word, and quotes are out…we all know.

And the WPI wouldn’t post it on their FB page if it wasn’t true. Surely they would know if someone has used their methods…they would have had to show them first!!!
 
C

CBS

Senior Member
Messages
1,522
Link to Alter's presentation in Zagreb

Here's the link to a pdf of Alter's Powerpoint from the IPFA/PEI conference: http://www.sanquin.nl/ipfa/Upcoming_Events.nsf/0/cbfb86b6bbdcc818c125706600483652/$FILE/1%20-%20Alter.pdf


Slides 9 & 10
AlterZagreb9..jpgAlterZagreb10..jpg
 
rebecca1995

rebecca1995

Apple, anyone?
Messages
380
Location
Northeastern US
kurt said:
Just read the press release carefully, it is from a wire service. The reporter got a copy of a presentation that was not intended for public release, and leaked that.

I know from my past discussions with researchers that the NIH and FDA and CDC are not ready yet to release their papers, they are still in discussion...
Click to expand...

According to reporting by ORTHO magazine, a paper is ready to be released:

ORTHO contacted Dr. Harvey Alter today for a reaction. He did not want to comment, but confirmed that a paper is soon to be published.
Click to expand...
 
You must log in or register to reply here.
Back