• 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.

Katz webinar on XMRV Coming up on Thursday

leaves

Senior Member
Messages
1,193
oh well at least it implies that it WILL be it for some peope... Right ?? :))))
 

Robyn

Senior Member
Messages
180
why does he say that? How does he know?

He said because a large number of CFS patients had shown to be positive for XMRV as per the Science paper. That with that high of numbers causality would definately need to be looked at. He also felt that other pathenogens could be involved in other cases.
 

V99

Senior Member
Messages
1,471
Location
UK
Also there could be a subset with something else, like another virus?
 

LJS

Luke
Messages
213
Location
East Coast, USA
The interesting thing in the slides is the CDC has the most accurate test for XMRV, how did they find WPI samples negative then??
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
he says xmrv wont be it for everyone!

I wonder if he meant because diagnosis is so sloppy (no blood tests for specific immune markers, some criteria not using PEM etc.) or whether even in well-defined cases, there might be some other cause?
 

Otis

Señor Mumbler
Messages
1,117
Location
USA
V - thanks for the screen captures. That's the first time I've seen a legible version of the second thumbnail.
 

Robyn

Senior Member
Messages
180
oh well at least it implies that it WILL be it for some peope... Right ?? :))))

He said WPI is now finding it in 90 percent and has been using multiple tests. I think that's a high number of ME/CFS patients. And yes there is also the broad definition of CFS. Thanks to the CDC. He also said the level of concern is very high. He said what caught the blood groups attention was the 3.7 XMRV DNA in healthy controls. I took notes.
 

V99

Senior Member
Messages
1,471
Location
UK
He may have been referring to the patients from the science study.
 

leaves

Senior Member
Messages
1,193
WoW that sounds very good indeed!! could false positives be an issue at all. or not?? And what percentage do they find in healthy controls? Any news on that?
 

hensue

Senior Member
Messages
269
I missed it too!!!! I am so mad at myself, was signed up and had an email. Ok everyone keep it coming!

Take care
Susie
 

V99

Senior Member
Messages
1,471
Location
UK
He mentioned what a good scenario and a doomsday scenario would be. Right now we have no idea.

He said they are taking it seriously, but not as much as they did West Nile virus, but that's because they don't know if it causes disease yet.

Probably a test in next 12 months.
 

V99

Senior Member
Messages
1,471
Location
UK
He said that he would have thought that they would have noticed if people were getting sick from the blood supply by now. But he seemed unsure when he said this.

I would add that the prejudices and ignorance around this disease is so severe that it is also likely they missed it.
 

Robyn

Senior Member
Messages
180
He mentioned what a good scenario and a doomsday scenario would be. Right now we have no idea.

He said they are taking it seriously, but not as much as they did West Nile virus, but that's because they don't know if it causes disease yet.

Probably a test in next 12 months.

I think maybe too that west nile has an incubation period and people could donate before showing symptoms. That and most ME/CFS patients are too ill to donate so not a big risk.
 

V99

Senior Member
Messages
1,471
Location
UK
He put up a picture of a set of scales. All the negative studies on the right, the 'Science' study on the left. The scales were even.

Then he alluded to the elephant in the room, the NIH/FDA study, and stuck an elephant onto the left hand scale and said that it was expected to be positive, but he did not know.
 

V99

Senior Member
Messages
1,471
Location
UK
I'm not quiet remembering it all, and not completely accurately, but it's pretty much as I have mentioned