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

Abraxas

Senior Member
Messages
129
We do believe that some of the more comprehensive studies will be coming out soon. That CDC paper has not come out this week as expected - now we hear that a Press Release is being written and it will come out next week.

As this whole thread seems to be based on the above couple of sentences from the buzz page, I'm also curious to know who you mean by 'We' Cort? If you are able to tell us :Retro smile: thanks.

I'm not able to keep up very well, but did we know the CDC study was supposed to be due out this week? Anyone?
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
As reporter, if the news only affected researchers and CFs community, no press release, I would think. Press release is because you expect lots of phone calls from reporters and you put your answers out to keep from having to repeat yourself again and again. Also is sometimes done when you have news positive about your own organization and you hope a press release will prompt a news story.

If, and we still don't know it is for sure, a press release is coming, then it has news of matter of public concern. Given it is public health agency, would likely be news of public health concern.

I can't imagine CDC would do study that says they can't find it if Germans, Japanese, Cleveland Clinic and WPI can find it at 1-6% of healthy controls. Coming out with completely negative would be too embarrassing.

Might show in population at large, but not in CFS patients at higher rate. I can't see this because NCI and CC also helped in study finding it in higher rate of CFS patients, and they have no great concern for CFS patients. They are cancer folks.

As for statement that they would realize the results along the way, not so as far as finding it in higher rate in CFS patients. Likely, like the WPI / CC / NCI study, the samples were blinded. Meaning the rate in CFS patients would not be determined until they were unblinded in the end.

Now, another possibility, they didn't test CFS patients at all, but instead tested healthy people and prostate cancer patients. And if they found it higher in prostate cancer patients, that would also calll for public statement.

Still all of this confuses me, since as I said above, I can't see them releasing positive study results connecting to disabling illness until there is a commercial test.

At the same time, I guess, if it is found out they had the results and held them for four months, then that would be unethical and against a Hippocratic oath. (Do researchers take that oath?)

I just hope Cort's buzz statement is true and we aren't all getting anxious when there isn't a press release.

Tina

Tina, that all makes a lot of sense...

Still all of this confuses me, since as I said above, I can't see them releasing positive study results connecting to disabling illness until there is a commercial test.

Well, maybe they have now got a standardised test ready... the WPI have been saying for ages that they are working on a standardized test, and they've been saying that it will be ready 'soon' for months now... So maybe they will release this test alongside the CDC study results...
This is all just pure speculation of course...
But I reckon that the WPI must have been collaborating with the CDC, even though they haven't said much... I know that they've been working together, at least a little, with XMRV, and I think that the CDC would want to be involved in establishing a standardized blood test, alongside the WPI.
 

Sing

Senior Member
Messages
1,782
Location
New England
Thank you, DisautonomiaXMRV for your excellent post! You not only make very plausible points, but you reviewed the relevant facts in the whole situation.

Sing
 

flex

Senior Member
Messages
304
Location
London area
somebody check on flex, we need that bag back!!!!!

Oh no, I just read this after a nights sleep!! Have I had the bag all this time? GULP!!! Are you all still alive, I would hate to have blood on my hands.

May I propose a simple solution, another bag, then we could have a two bag state and peace and prosperity could be road mapped for the future of all. We will need a chairperson and a committee and of course some researchers and probably a bag response team. OH its getting complicated now...breath ...breath....wheres the damn bag
 

subtr4ct

Senior Member
Messages
112
re: the possibility of a new test being available very soon -- I notice that the vipdx website has been gone for couple of days now. There is an (automatically generated?) link farm/domain sales type page there currently. Easily could be just a coincidece
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Oh no, I just read this after a nights sleep!! Have I had the bag all this time? GULP!!! Are you all still alive, I would hate to have blood on my hands.

lol

well, it's ok for you flex... you just passed out and got a good night's sleep... But you had the bag! ... the rest of us couldn't get any sleep, at all, with all the worrying and the fretting and the anticipating and the hyper-ventilating!
:Retro wink:

May I propose a simple solution, another bag, then we could have a two bag state and peace and prosperity could be road mapped for the future of all. We will need a chairperson and a committee and of course some researchers and probably a bag response team. OH its getting complicated now...breath ...breath....wheres the damn bag

Oh no, here we go again... breath, breath... pass me the bag!........... :eek:
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
re: the possibility of a new test being available very soon -- I notice that the vipdx website has been gone for couple of days now. There is an (automatically generated?) link farm/domain sales type page there currently. Easily could be just a coincidece

curiouser and curiouser...
 

Lesley

Senior Member
Messages
188
Location
Southeastern US
re: the possibility of a new test being available very soon -- I notice that the vipdx website has been gone for couple of days now. There is an (automatically generated?) link farm/domain sales type page there currently. Easily could be just a coincidece

I believe the same thing happened when they changed their testing last time -- from PCR and culture, to just culture. Interesting!
 

Rivotril

Senior Member
Messages
154
I believe the same thing happened when they changed their testing last time -- from PCR and culture, to just culture. Interesting!
meirleir told that a reliable test would be out in a few week
maybe this is the antibody test thats coming via Vipdx
But to take a site down just to update your test sheet and just some new info?
 
Messages
44
To those who asked if HIV was known prior to a blood test, the answer is yes. I remember that I thought my baby would need a transfusion and was very scared because they could not test for HIV yet. This was Dec 1983. The panic was scary so perhaps they are looking for a reliable test first. But, I thought I saw on this forum something about Dr. Judy/Whittemore recommending the US adopt the same procedure that EU uses clean blood because it was found effective for XMRV (or am I incorrect on the implications)?
 

anciendaze

Senior Member
Messages
1,841
standard bureaucratic behavior

While I've only skimmed this topic before this post, I've seen enough bureaucracies to know how they handle announcements and press releases. Everyone here seems to accept that the statement about preparing a press release is correct. From past experience, I can say there is a high probability the real reason for delay is to run the news up the chain of command before it goes public. (Making management look ignorant or incompetent is a very bad career move.) The length of delay in such cases is a good measure of how high the warning goes and how much negotiation is required before release. This means the implications go beyond earlier expectations.

"Insanity in individuals is something rare - but in groups, parties, nations and epochs, it is the rule."
Friedrich Nietzsche
 

bakercape

Senior Member
Messages
210
Location
Cape Cod. Mass
My gut feeling

is telling me they found some association between xmrv and cfs. I'm thinking they put the german positive study on there web site as a kind of preparation to there results.
I bet they will be taking the angle of yes we found xmrv at a higher rate than in controls but this could mean that people with CFS have something wrong with there immune system that allows them to have xmrv. They will use the German study finding XMRV at a higher percentage in immunocompromised patients to make there point and prevent a panic of sorts.
Then they will say much more study is needed to determine if it is causal for some patients or a select subset of patients.
 

jeffrez

Senior Member
Messages
1,112
Location
NY
I'm going with nothing until the report is actually out. Speculation is fruitless, although I will say that I find it *extremely* difficult to believe they will say anything to validate CFS as a legitimate disease regardless of what they actually find. Is that a speculation? I guess just a cynical belief. I think the delay is likely due to their attempts to cover their butts in advance and make sure they aren't saying anything either to cause a panic or to validate CFS. Oops, I guess that part is speculation. :p
 

Ecoclimber

Senior Member
Messages
1,011
Very Strange Way of Changing content on a Web Site

It's rather somewhat odd for a business with a web presence to take their entire domain down. You can keep at least the main page online and subsequent lower level pages can be place under construction. You can rebuild your entire site off line and then port it over at once without any disruption on the domain site. Seems just a really strange way of doing it especially when there are links to other diagnostic labs on the main page....very strange.
:eek:
 

acer2000

Senior Member
Messages
818
It's rather somewhat odd for a business with a web presence to take their entire domain down. You can keep at least the main page online and subsequent lower level pages can be place under construction. You can rebuild your entire site off line and then port it over at once without any disruption on the domain site. Seems just a really strange way of doing it especially when there are links to other diagnostic labs on the main page....very strange.
:eek:

I was just going to say this. Typically you only see this when someone relinquishes their domain name. If they were to stop offering the current testing package (but not have info about the new test), all they have to do is remove the section about the test and say "check back soon" or something like that. And what about the other tests that VIPdx (nee RedLabsUSA) used to offer like NK cells, cytokines, etc..?

Could it be that those other "indirect" tests aren't necessary anymore because they found the cause? And they closed up shop because they licensed the XMRV tests to a national lab? Eh... I wonder, or is this just an amateur web hosting mistake?