jimbob
ME/CFS84-XMRV+
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- myrtle beach, s.c.
With the vipdx announcement and the canadiens starting a study, there just has to be something good from the CDC, wouldn't you think????????
CDC replication study delayed in order to prepare a press release?!
- Thread starter awol
- Start date
jimbob
ME/CFS84-XMRV+
- Messages
- 321
- Location
- myrtle beach, s.c.
I'm about a 6 hour drive from there, if I can convince my wife to take a little ride, maybe I'll go and bang on some doors!!!!
leaves
Senior Member
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- 1,193
yeah this waiting is driving me nuts too. Oh well I guess we will have plenty of time in the future to give the CDC a hard time. Let's be gracious and allow them these few days with their head in the sand.
leaves
Senior Member
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- 1,193
You can pm me if you want to know how I got the info, but I won't post my sources online. I thought I did people a favor by giving the info, but I see that maybe it would be better to say nothing to avoid anxiety?
HopingSince88
Senior Member
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- 335
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- Maine
I think Starry hit the nail on the head. I place my bet on a Friday pm announcement. So I am going to let go of this thread until that time.
I've been looking forward with anxiety for days now for the information that was supposed to be released by the CDC Jun 11, only to find out tonight that the CDC denies there will be any "press conference" after all.
Posting unverified, speculative "information" is not only pointless, it's also highly irresponsible. Starting unverified and unsubstantiated rumors helps no one. I said it before and I'll just repeat it once more: I think it's better to wait until we actually have information to discuss rather than speculating on what has not occurred and may not ever occur. God knows there's enough to discuss about this illness already without simply making things up.
leaves
Senior Member
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- 1,193
Yeah well I do see that this is a very uncomfortable situation. Sometimes ignorance is bliss ( amazes me that I actually say this, I guess the overdose of uncertainty is taking it's toll on me)
I'm pretty confident about the story but have no idea why it is canceled, could be any reason.
Ok folks hang in there, I'm tryin to get myself do something useful ...
I'm pretty confident about the story but have no idea why it is canceled, could be any reason.
Ok folks hang in there, I'm tryin to get myself do something useful ...
leaves
Senior Member
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- 1,193
I don't like your post. I'm not making things up. You can pm me if you want to know my source. As I said before.
If the majority of the people prefers me to keep quiet in the future, I will certainly comply. I have no interest in making people miserable. However there are nicer ways to ask this.
Ii
If the majority of the people prefers me to keep quiet in the future, I will certainly comply. I have no interest in making people miserable. However there are nicer ways to ask this.
Ii
Esther12
Senior Member
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- 13,774
I think we all need to accept that anything that hasn't been published in several sources or officially released should be treated as a rumour.
The discussions here are full of rumours and speculation. For member who don't want to read that, I think you'll have to avoid the XMRV discussions here and just stick to more offical sources. I understand that all of the ups and downs of this can be distressing, but I don't think it's fair to blame those members who are sharing rumors they've heard for your responses. We're all in a difficult situation here.
The discussions here are full of rumours and speculation. For member who don't want to read that, I think you'll have to avoid the XMRV discussions here and just stick to more offical sources. I understand that all of the ups and downs of this can be distressing, but I don't think it's fair to blame those members who are sharing rumors they've heard for your responses. We're all in a difficult situation here.
I don't like yours, either. People have been making things up for 25 pages, "this is going to happen, that is going to happen, I think this will happen because, I think that will happen because." All just wasted time, energy, and perpetuating anxiety. Either you have real information to give, or you don't. Which is it? Anything else is just idle speculation and rumor mongering that create false impressions, false ideas, and false hopes. "PM for a source" is ridiculous. I don't play games like that. I don't like the self-important nature behind it, either.
ixchelkali
Senior Member
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- Long Beach, CA
I hope you'll keep posting the things you hear. We can read it or not, believe it or not, get excited or not, it's up to each of us. You aren't responsible for how individuals react. And you certainly aren't responsible if the CDC changes its collective mind. Personally, I prefer getting tidbits of information (and rumor and speculation) to hearing nothing at all for weeks. At least it gives me something to think about. And I enjoy reading different people's perspectives on what it might mean, if it means anything, etc etc, because at least it tells me I'm not alone in caring about what happens in the ME/CFS world.
Mr. Kite, your tone is harsh and I beleive uncalled for. I think most people understood that leaves post was rumor. All information from an unverified source is "rumor". We speculate alot on this forum, sometimes that is all we can do. I have alot of respect for Leaves and am always interested in her/his thoughts, including, what she heard through the grapevine.
leaves
Senior Member
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- 1,193
@ mrkite: I totally agree that stress is not good for us. In that sense you are right that this discussion is not very productive; it does not 'help us'.
As I said, we might think about this more; let's do a poll and see what kind of information people would like members not to post.
I do take issue with you questioning my intentions. I am pretty confident about my info and thought I did a good thing sharing. The reason that I do not post my source online is that I don't want to cause problems for the source.
Hope you feel better soon, I am sorry for your stress.
@others; thanks guys and girls :-*
As I said, we might think about this more; let's do a poll and see what kind of information people would like members not to post.
I do take issue with you questioning my intentions. I am pretty confident about my info and thought I did a good thing sharing. The reason that I do not post my source online is that I don't want to cause problems for the source.
Hope you feel better soon, I am sorry for your stress.
@others; thanks guys and girls :-*
Are people no longer even responsible for the truth? The title of the thread is, "CDC replication study delayed in order to prepare a press release?" Where there is no evidence that I can see of a CDC replication study being delayed, and there is no evidence of there being any press release, either. In fact, CDC denies knowledge or planning of any such "press release." So the entire thread is basically just a complete fabrication, a fiction.
If that's how you people want to spend your time, discussing press releases that don't exist, go right ahead. I have better things to do than speculate for 25 pages about things that don't even appear to be true. I'm trying to unsubcribe from this thread and still keep getting notifications, but I don't even know how I got sucked into it this far. freaking brain fog is trashing my critical thinking abilities.
bakercape
Senior Member
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- 210
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- Cape Cod. Mass
Take what you want and leave the rest.
That's a saying my mom taught me growing up. I guess if you don't want to read 25 pages of speculation then don't read 25 pages of speculation and then complain about reading it.:Retro smile:
I take this forum as a place for discussion not a news agency. I appreciate bits of info from fellow sufferers even if they cannot disclose there source. Even Nancy Klimas said we would be getting a positive study soon. She did not give a source. Can we not speculate on this study? For some speculation is not a waste of time but a way to pass the time and deal with the anxiety of not knowing. For some speculation causes more anxiety. For those that it causes more anxiety then why pay attention?
That's a saying my mom taught me growing up. I guess if you don't want to read 25 pages of speculation then don't read 25 pages of speculation and then complain about reading it.:Retro smile:
I take this forum as a place for discussion not a news agency. I appreciate bits of info from fellow sufferers even if they cannot disclose there source. Even Nancy Klimas said we would be getting a positive study soon. She did not give a source. Can we not speculate on this study? For some speculation is not a waste of time but a way to pass the time and deal with the anxiety of not knowing. For some speculation causes more anxiety. For those that it causes more anxiety then why pay attention?
It wasn't always presented as speculation. The impetus behind many posts presumed a press release to begin with, and then just merely speculated on the contents. The brainfog is bad enough with everything else to keep track of, let alone 25 pages of this kind of stuff. I was led to believe going through this thread that there would be a press release regarding XMRV, and now it turns out there will not be. So that indicates to me that the basic thread premise is irresponsible. Even here you present the study as being synonymous with the release. So there is a great deal of lack of clarity here.
And just to add again - no, I don't care if you want to spend all your time speculating on something you know nothing about, with no facts about it whatsoever. Which basically amounts to what? It really amounts to just making things up. The point is that can get confusing for many people, and rumors and speculation like that is what ends up confounding many issues, not just this one. As a general principle, in other words, spreading rumors and speculating on hypothetical outcomes is an irresponsible behavior.