CDC replication study delayed in order to prepare a press release?!

Messages
417
Likes
0
If I understood Cort's latest entry on his XMRV buzz page correctly, the release of the results of the CDC study has been delayed for a week so that they can prepare a press release.

Is this good or bad?

Press release needed to control widespread panic over positive results, or needed to control patient anger over negative results? This whole process is killing me!
 

Esther12

Senior Member
Messages
13,774
Likes
28,348
I'm tending to be insitinctively negative about a lot of XMRV stuff, but if the CDC had found a strong correlation, wouldn't we expect urgent moves related to blood supply? If they don't feel a need to get the information out quickly, I'd assume it's more likely to be another negative.

I really have no idea how these things work though, and the above is probably more a reflection of my prejudices than anything else. I've not been paying attention to the XMRV Buzz page though, so thanks for mention that.
 

Bob

Senior Member
Messages
16,455
Likes
34,041
Location
England (south coast)
If I understood Cort's latest entry on his XMRV buzz page correctly, the release of the results of the CDC study has been delayed for a week so that they can prepare a press release.

Is this good or bad?

Press release needed to control widespread panic over positive results, or needed to control patient anger over negative results? This whole process is killing me!
This seems like good news to me... They wouldn't worry about constructing a sensitive press release if it was negative result... Since when did they worry about ME patients' feelings?! More likely, they are worried about the controversy because they have got some positive results... This would be BIG international news, so they'd need to get the press release right... and from what i understand, they have actually been cooperating closely with JM on this project... and remember how positive she is about the whole XMRV situation... she's knows more than we do about what's been going on behind the scenes, and she is always optimistic and positive!
 
D

DysautonomiaXMRV

Guest
I'm tending to be insitinctively negative about a lot of XMRV stuff
I'm the reverse myself.

One study (SCIENCE), never replicated (so not disproved) runs at 98% infection rate of well defined neuro immune disease. Shows virus budding, confirmed not to be contamination by 3 sources, one a government agency (CDC). Dr John Coffin (world expert on retrovirus in mice for decades ) also has stated it is not contamination.

Days ago, we had verbal report at the invest in ME conference in UK from a world renown American neuro immune disease specialist, Dr Paul Cheney - reporting that using same detection method as WPI (WPI licensed test to VIPdx and Cheney used VIpdx) that his patients are 80% infected. As his patients are simply guessing they have ME CFS, (there is no test), this is an absurdly high number statistically when the healthy population are infected at around 2-4% with XMRV - now demonstrated in three seperate countries thousands of miles away from each other. (USA, Germany, Japan).

No other reports of negative studies using same method as WPI & Cheney have come out. I'm very excited as all 'failed' methods did not use a proven method to detect XMRV that was so good, it was published in SCIENCE - the best medical journal in the world.

XMRV has also been dectected in respiratory tract, in multiple organs of monkeys after infecting them with XMRV (Dr Ila Singh), and in patients with Autism.

Quite an incredible amount of findings in such a short amount of time, and on next to no research funding. Also, for me personally I tested positive for XMRV and I have never been to the USA, but I did receive a blood transfusion before I was born - courtesy of my mom who was very sick. She also has ME CFS. We heard from Dr Dan Peterson back in October 2009 during a conference that he mentioned there was a case of a blood donor receiving blood from an ME CFS patient, who later tested positive for XMRV - and this blood recipient now also has ME CFS.

For HIV/AIDS it only took 1 proven blood donor contamination report, and one proven replication study - to confirm HIV/AIDS to what it is today. 1 replication study (using identical methods to WPI) that proves positive, and the game is up for the government who allowed this new human retrovirus to reach pandemic proportions in the population without informing them, and allowing infected people to unwittingly infect their children - with terrible consequences.

Not long ago, the CDC stole millions $ of US tax payers money from CFS research and this money was re-directed to other conditions without the public's consent. It all makes perfect sense now, especially as only POST XMRV finding by the WPI, in the 2010 May CFSAC meeting a CDC representative (Dr Elizabeth Unger - Acting chief of Chronic viral disease branch) stated they are 'moving' CFS to chronic viral disease branch laboratory. Why would they study CFS in a viral disease lab, when currently they are telling people to exercise and brain wash themselves back into health? They're preparing for the XMRV future rather than the psychiatrically obsessed past.
 

Bob

Senior Member
Messages
16,455
Likes
34,041
Location
England (south coast)
I totally agree with Dysautonomia! (Wish I could write that clearly and intelligently about the subject!)

I'm the reverse myself.

One study (SCIENCE), never replicated (so not disproved) runs at 98% infection rate of well defined neuro immune disease. Shows virus budding, confirmed not to be contamination by 3 sources, one a government agency (CDC). Dr John Coffin (world expert on retrovirus in mice for decades ) also has stated it is not contamination.

Days ago, we had verbal report at the invest in ME conference in UK from a world renown American neuro immune disease specialist, Dr Paul Cheney - reporting that using same detection method as WPI (WPI licensed test to VIPdx and Cheney used VIpdx) that his patients are 80% infected.

No other reports of negative studies using same method as WPI & Cheney have come out. I'm very excited as all 'failed' methods did not use a proven method to detect XMRV that was so good, it was published in SCIENCE - the best medical journal in the world.

XMRV has also been dectected in respiratory tract, in multiple organs of monkeys after infecting them with XMRV (Dr Ila Singh), and in patients with Autism.

Quite an incredible amount of findings in such a short amount of time, and on next to no research funding.
 

Rivotril

Senior Member
Messages
154
Likes
0
hopefully this is the upcoming positive study (one negative, the huber one, and one positive) which Klimas mentioned a week or so ago
thought that Klimas also said on the recent conference that it would be just a matter of time and then they could start with antiretroviral trials.
so I dunno what Klimas knows, but she must have had some good reason to say these things
 
B

bluebell

Guest
I have been thinking that the delay is due to governmental freak out over positive results. It has to be good news. I agree that we aren't scary enough to make the government pay lawyers to write something special;-). Hold on to your seats! It's probably not only a press release - they have to deal with the blood supply issues, all sorts of stuff.

I think they could save some money by having the press release state, simply, "DOH!"
 

bullybeef

Senior Member
Messages
488
Likes
138
Location
North West, England, UK
I doubt the CDC would be worried about the wrath of ME sufferers, they've done it before. The only issue now is, there are many people that can see through a dodgy study, and they must be aware of this.

I would like to think they maybe preparing to officially announce XMRV to the world; fingers crossed.
 

Esther12

Senior Member
Messages
13,774
Likes
28,348
I'm not so sure about this positivity.

Maybe it is negative and they're working on a water-tight press release because of the way the WPI and some CFS patients have responded to the other negative studies?

I would be surprised if they had found a strong link, but were taking no action with blood supplies just so they can work on a good press release. (But then - I was surprised more blood agenices didn't take precautionary action following the Science paper - I really don't know enough about the way blood agencies work to make meaningful predictions).

This is all rather empty speculation, but my empty guesswork still leads me to think that the delay is a bad sign (there are other good signs - as was mentioned, Mikovits seems positive and is meant to have been working with the CDC... who knows?).
 
Messages
417
Likes
0
I'm not so sure about this positivity.

Maybe it is negative and they're working on a water-tight press release because of the way the WPI and some CFS patients have responded to the other negative studies?

I would be surprised if they had found a strong link, but were taking no action with blood supplies just so they can work on a good press release. (But then - I was surprised more blood agenices didn't take precautionary action following the Science paper - I really don't know enough about the way blood agencies work to make meaningful predictions).

This is all rather empty speculation, but my empty guesswork still leads me to think that the delay is a bad sign (there are other good signs - as was mentioned, Mikovits seems positive and is meant to have been working with the CDC... who knows?).
It could well be that they thought it was important to announce the blood ban and the results at the same time. A blood ban with no solid reason has its own complications.
 

Mark

Former CEO
Messages
5,238
Likes
6,198
Location
Sofa, UK
I'm not so sure about this negativity... ;)

No news eh? Is that good news or bad news? Hard to say...

Note the possibilities on the first, basic question of what they found in their XMRV testing on their samples etc:
(a) They couldn't find any XMRV at all
(b) They found a little bit but no more in CFS patients than others
(c) They found significantly more in at least some sets of CFS samples
(d) They found loads of XMRV all over the place especially in many/most CFS samples

I guess there are loads of other cases but lets keep it simple...

Because of the problems with their sample banks, their CFS criteria etc, I have assumed that the biggest potential embarrassment the CDC would face would be if they found XMRV in CFS, just not in most of their CFS samples, confirming their failure to characterise the patient group as well is the WPI has (via CCC++).

I expect their overall detection rate to be low and their position to be very conservative, but I'm going for (c) or possibly (d), with some interesting new detail, and hopefully some early info about estimates of levels of XMRV in multiple neuro-immune conditions. (b) or even (a) are fairly pessimistic, so have one of them if you're a worrier...:Retro smile:

I'm taking the optimistic option here (I think)...
 

Mark

Former CEO
Messages
5,238
Likes
6,198
Location
Sofa, UK
And sorry, but can't resist speculating that an extra week is quite a long time to spend writing a press release if you haven't got anything much to say...
 

julius

Watchoo lookin' at?
Messages
785
Likes
5
Location
Canada
When you do a study like this, do the results slowly reveal themselves over the duration of the study? Or, are you completely unaware of what the results might be right up until the end.

I ask because, as far as I understand, the former is more likely. It seems to me they would have had some idea of the results unfolding as time went by. If that is the case, I can't see why they would need a sudden 'emergency' press release extension.

I think it's possible that the delay is for some completely other reason, and they are just saying the press release thing for whatever wacky-cdc-logic reason.
 
B

bluebell

Guest
WPI is a smart organization. Why the Intercept thingy - forget if it's a business relationship or what - if there isn't going to be a big need for it. I don't get the negativity (though I totally respect it); I'm usually pretty pessimistic, but in this case my sensors are picking up good things. Even if the CDC study is inconclusive, or worse, the other study might be strong and they are working on the release to batten the hatches. But I don't think the hatches are battenable at this point.