Katz webinar on XMRV Coming up on Thursday

[dannybex]

But if I'm not mistaken, the majority of patients will still need to wait for an FDA-approved, government-validated test, before we get any financial coverage for this - or wider acceptance by less-informed physicians, of the test as "legit". Which underscores the importance of advocacy to educate the blood folks and other stakeholders on WHY this is urgent - from a scientific perspective.

And of course we have to wait for causality research. And the media response to XMRV - when embargos are finally lifted - may change the way things unfold.

That should definitely help...but yes, I would think nothing will be covered until both causality can be proven, and an FDA approved test is available.

 

[dannybex]

V99 -- do you have a link to that Devanur and Kerr study from 2006 that you mentioned in post #90?

 

[urbantravels]

Heads up cats and kittens, the video is now up:

http://www.youtube.com/solvecfs#p/a/u/0/ex6iS_2RqiY

 

[VillageLife]

I really like dr Katz !

 

[Sam Carter]

V99 -- do you have a link to that Devanur and Kerr study from 2006 that you mentioned in post #90?

Is this the paper you were looking for, Dan?

Chronic fatigue syndrome - L.D. Devanur, J.R. Kerr - Journal of Clinical Virology (2006)

 

[LJS]

I found these two slides very interesting, it looks like the CDC has the most sensitive test. This raises the question; why did the CDC find all of the 20 positive control samples sent from the WPI negative? We know why they did not find any positives in their study due to poor patient selection.

 

[George]

I found these two slides very interesting, it looks like the CDC has the most sensitive test. This raises the question; why did not they find any of the 20 sampled sent from the WPI positive? We know why did didn't find any positives in there study due to poor patient selection.

My guess is diffrent people working in diffrent labs with diffrent agendas. But that's just a guess.

 

[dannybex]

Is this the paper you were looking for, Dan?

Chronic fatigue syndrome - L.D. Devanur, J.R. Kerr - Journal of Clinical Virology (2006)

Thanks Sam...I think that's it.

Just now listening to the video...thanks for the link Urbantravels...very thorough presentation by Katz.

 

[Cort]

I just put up my take on it. I liked him - its nice to like these people that have never been involved with ME/CFS research before. Gives us a broader look at the research community - there are some sympathetic and interested people out there.

http://www.forums.aboutmecfs.org/content.php?206-Dr-Katz-at-the-Mic-the-CAA-Webinar-on-XMRV-and-Blood-Safety

 

[Cort]

Yes me too, spoiled we are

Spoiled you are and written up I did. I couldnt help myself.....

How did you get the slides so quickly?

 

[Cort]

At least a year until a CLINICAL assay is ready for XMRV diagnostics?
Dr Katz gave a preliminary answer to one of my earlier questions about the process to translate analytical assays to clinical assays. As I recall, he initially said one year, then he gave more info on West Nile, said it took THEM a year, and that because XMRV was currently perceived with less urgency, it could take longer for us.

Can anyone answer any of the following questions I asked in the Amy Dockser Marcus thread: http://www.forums.aboutmecfs.org/sh...XMRV-Working-Group-Report&p=105519#post105519


Fostering a sense of urgency for availability of clinical tests for XMRV
Which raises my final question: What can we do to impress on the blood folks and other key stakeholders, the urgency for patients with ME/CFS to have diagnostics and clinical trials asap (in the event XMRV is found to be causal)? Which agencies/key contacts should we be directing educational/advocacy letters to?

I hope he's wrong about that 12 months! I can't imagine that is right. The WPI, I believe, has a patent on antibody tests and we've heard that Dr. Singh and other labs are working on one. Coffin thought we'd know about XMRV in about six months give or take and we're about there. Kim said 20 data presentation on XMRV in Sept - that's alot of new work! Things are happening. I think we'll at least have some pretty important answers over the next couple of months.

 

[Cort]

My guess is diffrent people working in diffrent labs with diffrent agendas. But that's just a guess.

My guess is that they were dropping a known sample of XMRV into blood and plasma and seeing how good they were at finding it. Finding it in a patients blood may be different....