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Annette Whittemore on Nevada Newsmakers

Jemal

Senior Member
Messages
1,031
So we have been really encouraged by what we have seen and we believe that those positive studies will be coming out very soon. So, in addition to that I think everyone needs to know how encouraged we are by our own studies [in the laboratoria?].

This is a great talk! She's talking about human antibodies now.

We still have collaborators at the NCI who continue to do work on this virus and this illness as well.

We knew that, but good to hear her say that.

Talking about politics:

I have had some comments, like: how in the world did a small lab in Nevada that just begun, a small institute that had just begun, you know, how were they capabable of making this kind of discovery?

About the CDC:

I think it has taken them a very long time to get aboard. Right now they are involved in the Blood Working Group to determine the best detection methods. I believe that ultimately we will come to a consensus. And we are very, very hopeful that at some point one of their researchers will come out to the WPI and be able to work with us and come to... eh, at least take a look at the discrepancies and come up with the best test.
 

Sing

Senior Member
Messages
1,782
Location
New England
Thanks! Just listened and feel encouraged by Annette Whittemore's overview and perspective. She emphasized that they are looking forward to having the chance to speak with Ian Lipkin PRIVATELY on June 24 and to show him their lab. Makes me feel good too.
 

eric_s

Senior Member
Messages
1,925
Location
Switzerland/Spain (Valencia)
And we are very, very hopeful that at some point one of their researchers will come out to the WPI and be able to work with us and come to... eh, at least take a look at the discrepancies and come up with the best test.
It's crazy that this has not happened yet... This should happen within one week or so after a serious study that reports an association of a new virus with a disease that affects a million citizens, shouldn't it?! A plane ticket is not so expensive after all.
 

Jemal

Senior Member
Messages
1,031
It's crazy that this has not happened yet... This should happen within one week or so after a serious study that reports an association of a new virus with a disease that affects a million citizens, shouldn't it?! A plane ticket is not so expensive after all.

Just guessing here: the CDC and ME/CFS don't have a happy history. Then comes along this small laboratory that just started and they throw the field wide open. The CDC is an enormous organisation, with enormous funds and potential. They probably thought they should be able to find this virus themselves. Like many of the researchers who have done negative studies. This is part arrogance, but also the scientific thing to do I guess: they should be able to replicate the results (but obviously they haven't been able to, although now that the HIV department is getting involved, the CDC is at least getting some results).

I agree though with your statement that with something this serious, the CDC should have been all over the WPI, copying their methods (and then decide if it's contamination).
 

Enid

Senior Member
Messages
3,309
Location
UK
From this distance it is quite clear the WPI despite all the current infighting in ME/CFS - they and their colleagues stand only to unravel. Lesser people could not.
 

Sing

Senior Member
Messages
1,782
Location
New England
Imagine a big police dept or govt dept like the CIA or FBI, charged with protecting public safety, and some unknown small fry comes along and says, "I think I found a mass murderer/terrorist." They will brush this off while they are following their own thinking and leads, because what does that small fry know anyway? Only certain people are credited with being able to identify and find the bad guy, while the others are ignored or discredited.
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
It's crazy that this has not happened yet... This should happen within one week or so after a serious study that reports an association of a new virus with a disease that affects a million citizens, shouldn't it?! A plane ticket is not so expensive after all.

With the DeFreitas retrovirus, CDC had trouble, of course, finding that virus. DeFreitas invited them to come to Philly to work in their lab with them and CDC asked her to pay their airfare because there was not enough money in CDC's CFS budget (only because it was all being misappropriated to other diseases). If I remember right she eventually relented and offered to either pay their airfare or come to CDC's labs on her own dime and she was then refused. CDC also claimed they didn't have enough money to pay for samples to come again from Miami after they destroyed the first ones by not following DeFreitas' explicit warnings. Ed Taylor, an ME patient's husband had to give $15K to CDC out of his own pocket to ship them again! So, this is SOP for CDC re ME.
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
It's crazy that this has not happened yet... This should happen within one week or so after a serious study that reports an association of a new virus with a disease that affects a million citizens, shouldn't it?! A plane ticket is not so expensive after all.

Our gov't at "work"!

GG
 

Sing

Senior Member
Messages
1,782
Location
New England
Justin, What a shocking story! Was it from that book she wrote--I never read it because I didn't want to read the bad news.
 

Sing

Senior Member
Messages
1,782
Location
New England
Those are more details about DeFrietas than I remember from Osler's Web.

Also good news that WPI is working on diagnostic tests derived from biomarkers of XMRV.

Yes, and looking for those aspects of XMRV infection which can't be the result of any contamination--such as antibodies to XMRV. There are other such signs, but the technicalities can quickly overwhelm my comprehension.
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
Justin, What a shocking story! Was it from that book she wrote--I never read it because I didn't want to read the bad news.

Yes, from Osler's Web. I highly recommend it; my favorite book of all time. I felt much better after reading it just knowing how all of this happened, ie why people and doctors think we are nuts- ie because CDC and NIH has been consistently lying about us for the last 25+ years. But, yes it is a long book and makes one angry.

The interview of Annette makes me happy! Good news!
 

floydguy

Senior Member
Messages
650
With the DeFreitas retrovirus, CDC had trouble, of course, finding that virus. DeFreitas invited them to come to Philly to work in their lab with them and CDC asked her to pay their airfare because there was not enough money in CDC's CFS budget (only because it was all being misappropriated to other diseases). If I remember right she eventually relented and offered to either pay their airfare or come to CDC's labs on her own dime and she was then refused. CDC also claimed they didn't have enough money to pay for samples to come again from Miami after they destroyed the first ones by not following DeFreitas' explicit warnings. Ed Taylor, an ME patient's husband had to give $15K to CDC out of his own pocket to ship them again! So, this is SOP for CDC re ME.

Yet NIH/CDC is probably flying Stoye in from London - most likely first/business class - on our dime. I guess the slush fund isn't available for making scientific progress only for deception.