From the 1st annual XMRV conference

[taniaaust1]

Yes, and what I am wondering, remembering Osler's Web, if those guys that met with Rivvka (sp?) and Bob before the conference, the meeting Collins set up with cfs folks, well they said people could send in greivances etc Should we send in that concern about Fauci, because weren't they saying at that meeting that Straus and Fauci had worked on behalf of CFS? I imagine those guys don't know the history, the govmt guys at the meeting yesterday. I want to make sure Collins knows.....what I can't figure out is if its better for us to highlight the past to them or let it slide.....one thought is how sometimes its good to give people an out if you want things to change. I imagine Mikovitz knows it all and I wonder what sort of things she has told Alter etc about the past if that opp has come up or seemed pertinent, useful.

I personally do think it is a good idea to let government people etc know that we dont want the CFS/ME stuff in Fauci's hands... now's our chance to be outting those old ones who did us wrong.. and calling for new people to be dealing with us. We should be doing it now (as after all the XMRV may turn out not to be caustive and we may need some open minded ones high up on our side then). The CFS/ME community shouldnt be having to deal with closed minded ones who have ignored our desperate cries for past 10-25 years.

Guess with Lipkin.. we just will have to sit back and hope he's serious about wanting to find it and help us.

 

[George]

From Dr. Huber

# Huber: "When we sequenced this sample, it was a false positive. In this one cohort, we cannot see XMRV." less than a minute ago via HootSuite

# Huber: "Out of 111 patients (selected based on CDC criteria), one of the samples was positive for XMRV." 1 minute ago via HootSuite

# Huber: When we tested our samples, we found a shocking correlation: no CFS samples were XMRV positive &also negative for the 2 mouse probes.

# Huber: "We felt compelled to test for mouse contamination. We used a mitochondrial assay to detect mouse DNA." less than 5 seconds ago via HootSuite

# This time, 2/3 CFS patients were positive, healthy controls had 17/36 positive. Most samples contained multiple viruses. #XMRV #MECFS 2 minutes ago via HootSuite

# Huber: All samples were processed in our lab with a new isolation protocol. #XMRV #MECFS 3 minutes ago via HootSuite

# Last fall, she started to collect new samples, taken in 2009. It’s very few samples (3 CFS and 36 healthy controls). #XMRV #MECFS 3 minutes ago via HootSuite

# Her first cohort, all samples were negative. Her second test found 1 out of 111 samples were positive, using different assays. #XMRV #MECFS 4 minutes ago via HootSuite

# Brigitte Huber of Tufts – her patient samples were taken in 2005 and selected based on the Fukuda/CDC criteria. #XMRV #MECFS 5 minutes ago via HootSuite

I think Frank Ruscetti must have talked about something unpublished cause there was a really long pause, like 30 minutes, between him and the next time CC started tweeting again. (shrug) course maybe they just had to go to the potty.

 

[George]

from the audience

Audience members commenting that the samples in this study involved heperinized blocks; it would impact the ability to detect.

 

[Sunshine]

# Brigitte Huber of Tufts – her patient samples were taken in 2005 and selected based on the Fukuda/CDC criteria. #XMRV #MECFS 5 minutes ago via HootSuite

As may the fact yet again old blood is used. (5 years old), only 3 patients had new blood taken in a test that doesn't work.

No one has ever replicated the WPI's methods and NOT detected XMRV. It's that's simple to understand.
FOLLOW THE WPI METHODS Brigitte, and then show us you can't detect XMRV.

 

[Otis]

Collection and storage may be the key. Lo/Alter used old blood for their CFS patients. Of course her methods may be questionable too. Very hard to pit this all together via tweets, although I very much appreciate the effort.

 

[Sunshine]

Brigitte Huber is on a DVD (InvestinME Conference video 2010).

She simply refused to listen to Dr Judy Mikovits explaining on a 'round table session', why contamination has been ruled out using WPI technology.
After Judy M had been talking for about 10 mins non stop at 100mph, Brigitte just continued in a brief riposte. 'It's contamination'. Somewhat infuriating for the viewer I can tell you.

Lets see in the next few hours at this conference what the ME Research UK/Blomberg people found, De Meirleir, Cheney, & Mikovits.

Even after hearing this if they are all positive, Brigitte will say the same thing. Maybe the US military can use Brigitte as a humane WMD? She could infuriate the enemy to death, with no collateral damage.

 

[Martlet]

Maybe the US military can use Brigitte as a humane WMD? She could infuriate the enemy to death, with no collateral damage.

Thanks for the smile. I was getting more and more depressed reading the posts above.

 

[FancyMyBlood]

CC twitter skipped from Huber's to Lo's presentation. Anybody knows more about the Hanson study?

 

[Kate_UK]

Now Judy is on - ClevelandClinic: Judy Mikovits of Whittemore Peterson Institute calling this HMRV (Human MLV-Related Viruses) to describe this class of viruses

 

[George]

I think there must be a lot of stuff that they can't talk about because of some really big gaps.

from CC

ClevelandClinic Mikovits: "We know this is a hormone-related virus, that's why we see it in younger patients [around puberty]." #XMRV #MECFS

# Judy Mikovits of Whittemore Peterson Institute calling this HMRV (Human MLV-Related Viruses) to describe this class of viruses #XMRV #MECFS less than 10 seconds ago via HootSuite

# Dr. Lo: “All I can say is that we detected it on the first PCR (polymerase chain reaction)." #XMRV #MECFS 6 minutes ago via HootSuite

# Dr. Shyh-Ching Lo from FDA: “Several conditions make the difference in being able to detect the virus in samples.” #XMRV #MECFS

 

[Bob]

Now Judy is on - ClevelandClinic: Judy Mikovits of Whittemore Peterson Institute calling this HMRV (Human MLV-Related Viruses) to describe this class of viruses

So we have a new name we can now use for all the MLV-related viruses?

HMRV

This makes our lives on the forum a bit easier!

 

[VillageLife]

dr mikovits is on!

 

[Cort]

CFS/ME stuff in Fauci's hands... now's our chance to be outting those old ones who did us wrong.. and calling for new people to be dealing with us. We should be doing it now (as after all the XMRV may turn out not to be caustive and we may need some open minded ones high up on our side then). The CFS/ME community shouldnt be having to deal with closed minded ones who have ignored our desperate cries for past 10-25 years.

Guess with Lipkin.. we just will have to sit back and hope he's serious about wanting to find it and help us.

Yes, Fauci is scary but he is just a figurehead - he really means nothing. What he is there for is to demonstrate to the rest of the world (not us) that the NIH is serious about XMRV. He is, after the Director of the NIAID - one of the top medical officials in the world....its amazing that they would feel the need to have him oversee it.

Lipkin is the key and you could not have asked for better - he is an recognized ace at discovering new pathogens and developing new techniques to discover pathogens. He is at the cutting edge of pathogen discovery. He broke West Nile, was a major figure in SARS and now they're asking him to do the same with XMRV.

FORGET Fauci, he is not leading the study - Focus on the man leading the study. Lipkin is a major figure and his appointment indicates the NIH is now serious about XMRV. You couldn't ask for better.

 

[pictureofhealth]

We already knew that Huber's samples were 'negative' - no surprises there. What is new (I think) is the audience's assessment that using the 'heparinised blocks' during the sample storage/processing may have led to the negative findings.

I wonder whether this might translate to a real problem in ME/CFS patients who happen to be taking heparin (blood thinner) and would test negative for XMRV in a study and later on a clinical setting? - although that is a bit simplified I'll admit. Warfarin is more likely to be used as a longterm anti coagulant in a patient who needs it (eg heart condition) - heparin is more short term - unless practices have changed?

Still its good to bear in mind for the future that there are potentially some medications that patients are taking out there in the real world, which may lead to a false negative XMRV test result in an otherwise XMRV positive patient.

 

[VillageLife]

From FACEBOOK:
The CFIDS Association of America
Dr. Francis Collins, NIH Director, is on the front row for the CFS session at the 1st International XMRV Workshop currently taking place at NIH.

:victory::victory::victory::victory::victory::victory::victory::victory:

HES ON THE FRONT ROW!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

 

[taniaaust1]

.Dr. Lo: “All I can say is that we detected it on the first PCR (polymerase chain reaction)." #XMRV #MECFS
12 minutes ago via HootSuite .Dr. Shyh-Ching Lo from FDA: “Several conditions make the difference in being able to detect the virus in samples.” #XMRV #MECFS
13 minutes ago via HootSuite

Judy Mikovits is now talking

Mikovits: "We know this is a hormone-related virus, that's why we see it in younger patients [around puberty]." #XMRV #MECFS
6 minutes ago via HootSuite .Judy Mikovits of Whittemore Peterson Institute calling this HMRV (Human MLV-Related Viruses) to describe this class of viruses #XMRV #MECFS
7 minutes ago via HootSuite

 

[Sunshine]

I think there must be a lot of stuff that they can't talk about because of some really big gaps.

from CC

More than likely, unless someone's accidently 'tweeting' us private conversations from a dental clinic.

 

[Bob]

I think there must be a lot of stuff that they can't talk about because of some really big gaps.

from CC

Yes, we aren't hearing a lot about many of the presentations... We haven't heard much about Ruscetti's presentation, but Andrea Whittemore implied it was going to be a significant presentation...

I'm holding my breath now for Mikovit's UK study results, but I don't know if we're be allowed to know them today.

 

[pictureofhealth]

Now Judy is on - ClevelandClinic: Judy Mikovits of Whittemore Peterson Institute calling this HMRV (Human MLV-Related Viruses) to describe this class of viruses

So the main change is the 'H' - I like it.

 

[George]

More than likely, unless someone's accidently 'tweeting' us private conversations from a dental clinic.

Yeah, this is about as much fun as a dental appointment and about as exciting as watching paint dry. (grins)
I hope tomorrow, Thursdays are the days a lot of journals publish, we get some f*%&*$#@ actual studies we can tear apart. I want ta see some science! Growl. (grins) I'll be a good dog now.