Katz webinar on XMRV Coming up on Thursday

[VillageLife]

was just his feeling that it wouldnt be it for everyone. cant remember exactly what he said.

 

[leaves]

oh well at least it implies that it WILL be it for some peope... Right ?? )))

 

[V99]

Because the CDC uses a crap definition of CFS

 

[Robyn]

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.

 

[leaves]

@ V99 fair enough
@ Robyn ok so it is more like a tentative yes?

 

[V99]

Also there could be a subset with something else, like another virus?

 

[LJS]

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]

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]

V - thanks for the screen captures. That's the first time I've seen a legible version of the second thumbnail.

 

[Robyn]

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.

 

[Sasha]

He said WPI is now finding it in 90 percent. I think that's a high number.

Wow! So do I. Last I heard, it was around 50% (of PWC just mailing their blood in, self-selecting).

 

[V99]

He may have been referring to the patients from the science study.

 

[leaves]

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]

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]

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]

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.

 

[leaves]

hmm sounds very interesting, hope they tube it.

 

[Robyn]

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]

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]

I'm not quiet remembering it all, and not completely accurately, but it's pretty much as I have mentioned