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

[gu3vara]

I agree, we shouldn't consider ourselves like weak people, we are pretty damn resilient and strong to live with this everyday and keep a good positive attitude on top of it.

 

[kurt]

I've been thinking.......
What ever the results of this weeks CDC studies or any future studies, we shouldn't let any of this worry us or get us down.
Because.....8 months ago one October day WPI gave us something special back, they gave us hope - something we had lost years ago. And I feel with this hope comes confidence that whether XMRV is the answer or not, we will one day find out what is wrong with us and eventually get well.
Since October I began to listen to music again, something I had stopped doing for pleasure but the last 8 months music has become part of my life again.
What ever happens WPI have woken me up, given me back a piece of my self which I lost, I have stopped blaming my self for being ill, been easier on my self and looked after my health more, they have given me back hope and that is something so precious.
So what ever happens we are stronger now.

Hope is like that. But I did not feel that way after the Science article because as a researcher I know how early-stage that is, and how many steps there are between initial discovery and proven treatment.

But your description is exactly how I felt after reading the Learner study. Seeing that 74% of the patients in the study are in some level of recovery gave me the most hope I have had in years. But took awhile to realize what that study was really saying, and its importance.

I am starting to wonder if the CDC press release rumor was actually about the news conference on June 11th. Regardless, we are going to know soon, the CDC will finally weigh in on XMRV.

 

[Bob]

I've been thinking.......

What ever the results of this weeks CDC studies or any future studies, we shouldn't let any of this worry us or get us down.

Because.....8 months ago one October day WPI gave us something special back, they gave us hope - something we had lost years ago. And I feel with this hope comes confidence that whether XMRV is the answer or not, we will one day find out what is wrong with us and eventually get well.

Since October I began to listen to music again, something I had stopped doing for pleasure but the last 8 months music has become part of my life again.

What ever happens WPI have woken me up, given me back a piece of my self which I lost, I have stopped blaming my self for being ill, been easier on my self and looked after my health more, they have given me back hope and that is something so precious.

So what ever happens we are stronger now.

That's a very nice message villagelife... thank you for that... I think it's made a big difference to my life too... but I'd forgotten what having ME was like before the Science paper... So thanks for reminding me... I get often so caught up in 'stuff' that i forget to take a step back and look at my life from a wider perspective... and you've given me a reminder to do that... I think we've all come a long way together of the last 6 months or so... in terms of hope etc...

I also agree with Kurt that some of the other research now emerging is also hopeful, and very interesting.

 

[julius]

I am starting to wonder if the CDC press release rumor was actually about the news conference on June 11th. Regardless, we are going to know soon, the CDC will finally weigh in on XMRV.

Are you still sure that they will be reporting findings next week, and just not sure of why the delay? Or do you mean that there may not even be a report at all next week?

 

[spindrift]

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

Subtr4ct, I think their website is under construction. Their new voice mail refers to the URL. So it still belongs to them.

 

[rebecca1995]

I agree that Huber's work and Lerner's treatments show promise. But let's not forget that other researchers need to replicate Huber's findings before they'll be taken seriously, and that Learner's treatments need to be tested in good clinical trials against placebos before we'll know how beneficial they really are.

I'm not trying to steal anyone's hope, only pointing out that it's important to hold every researcher and every hypothesis to the same high standard that we're asking the WPI and XMRV to meet. Why would we do otherwise?

 

[Knackered]

I am starting to wonder if the CDC press release rumor was actually about the news conference on June 11th. Regardless, we are going to know soon, the CDC will finally weigh in on XMRV.

Are you still sure that they will be reporting findings next week, and just not sure of why the delay? Or do you mean that there may not even be a report at all next week?

I'm confused about that too, where did the rumour come from? And what's the news conference on June 11th?
It might have been better not mentioning it if it wasn't concrete.

 

[bullybeef]

In any sense, we should be expecting some news soon. It is now nearly eight months since the Science study broke, and we were all expecting news around this time (the Swedish study was expected in Spring, and we know the unfortunate reason why that is still delayed).

This CDC study maybe it, but I still doubt it is make or break. If it is negative, we will just remain vigilant until more studies are released. But if it is positive, then the game has definitely changed forever.

 

[Rivotril]

I'm confused about that too, where did the rumour come from? And what's the news conference on June 11th?
It might have been better not mentioning it if it wasn't concrete.

same thoughts here...

now the study release and the delay for a week because of the press release were presented as facts.
People who read it went nervous/ stressed and so on....and were sure this week the study+release were coming.
so I still hope anything good is coming but please only write these kind of announcements if you are lets say 95-100% sure about it.

 

[Knackered]

same thoughts here...

now the study release and the delay for a week because of the press release were presented at facts.
People who read it went nervous/ stressed and so on....and were sure this week the study+release were coming.
so I still hope anything good is coming but please only write these kind of announcements if you are lets say 95-100% sure about it.

I think it's a case of Kurt telling Cort the release was delayed until this week, Cort wrote about it in the XMRV buzz page and now Kurt's not sure whether what he's heard was anything to do with the CDC XMRV study at all.

Almost 200 posts of discussion for nothing. I hope the rumour was right though, I'm sick of waiting.

Anyone know what Kurt was referring to when he mentioned the news conference on June 11th?

 

[Adam]

I think it's a case of Kurt telling Cort the release was delayed until this week, Cort wrote about it in the XMRV buzz page and now Kurt's not sure whether what he's heard was anything to do with the CDC XMRV study at all.

Almost 200 posts of discussion for nothing. I hope the rumour was right though, I'm sick of waiting.

Anyone know what Kurt was referring to when he mentioned the news conference on June 11th?

I think I heard a rumour that Girls Aloud are splitting up, so it could be that.

Oh no, I remember now, it was the Spice Girls are reforming...I think?

 

[V99]

:sofa:Adam that's truly scary

 

[Adam]

:sofa:adam that's truly scary

eeeeeeeeeeeeek!!



You like scary V?

Actually that's not a question. So delete the question mark.

And what bothers you most?

The Spice Girls reforming or Cheryl Tweedy post-Ashley Cole?

:innocent1:

 

[DysautonomiaXMRV]

I'm confused about that too, where did the rumour come from?.

Cort's 'Buzz' page wasn't it?

 

[V99]

The Spice Girls reforming or Cheryl Tweedy post-Ashley Cole?

Don't even want to think which one. Oh I'm going to cry. eeeeeeeeeeeeeeeeeeeeeeeeeeeeeek

But I do like tv V, new & old.

 

[awol]

I think it's a case of Kurt telling Cort the release was delayed until this week, Cort wrote about it in the XMRV buzz page and now Kurt's not sure whether what he's heard was anything to do with the CDC XMRV study at all.

Almost 200 posts of discussion for nothing. I hope the rumour was right though, I'm sick of waiting.

Anyone know what Kurt was referring to when he mentioned the news conference on June 11th?

Ok well random speculation or not, at least this thread kept us busy for a couple of days right? :innocent1:

 

[DysautonomiaXMRV]

It doesn't matter really, other than desperately sick people putting false hope into something for no reason.

 

[awol]

Remind me to ask more questions of news on Cort's buzz page.

 

[Bob]

Almost 200 posts of discussion for nothing. I hope the rumour was right though, I'm sick of waiting.

Ok well random speculation or not, at least this thread kept us busy for a couple of days right? :innocent1:

Sorry, I couldn't resist making it 200 posts... of pure speculation... but at least we've had a bit of light hearted fun along the way...

I'm still optimistic that the CDC have been searching for this virus seriously... everything that I have read and heard about what the CDC are doing, with regards to researching XMRV, leads me to that conclusion... maybe I am being naive, but at least Reeves is out of the equation now.

 

[JillBohr]

Well, I told my WHOLE family and some friends about a press release coming out of the CDC on their replication study. Please pass the bag please, I need to put it on my head.