Suspense. Any news on WHEN the NIH/FDA study might come out?
- Thread starter FernRhizome
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And here I was starting to think I was seeing some cognitive improvement with Valcyte. *sigh*
SOC
Senior Member
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I'm completely with George on this, but I'm not sitting next to him this time. He drools on my kitties. They are cute George, but definitely not delicious. [scowl]
See?
Yeah, they may stretch it a bit, bu I am SO waiting for the fit to hit the shan!
George
waitin' fer rabbits
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UUUmmmmm (lick chops, drool, lick chops, drool) Kitty's, ickel, bitty, itty kittys. (slurps)
SOC
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No George! Leave it!
Humph! One little nibble and I'm sending the chinchilla after you!
George
waitin' fer rabbits
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Chinchilla (looking around suspiciously) No! No! not the Chinchilla! Anything but the Chinchilla! Please, please, I'm beggin' ya!
Levi
Had this for over 25 years, been through just about everything there is to with it, including nearly being sectioned, and lost as much as most patients, so you ain't telling me anything new about the appalling medical, political & personal realities of our situation. I really understand why some don't want to get burned again. But...
1. This is not the same as Defreitas, that is not a fair direct comparison. There are some serious big guns on our side this time, and the science of XMRV generally is a lot more solid. Not saying Defreitas didn't do good work or wasn't onto something (we may never know). But the quality of the Mikovits and Alter papers, and the standing of the journals they are published in, plus all the other work on XMRV outside our immediate area (CFS), all counts big time in our favour. We also have the internet now, and that is a very powerful weapon against abuses of power (when used properly).
Things have changed since Defreitas.
2. I do not agree at all that the Alter paper is being suppressed or manipulated. There is almost no possibility of that happening now, far too many people know about it. Like I said before, if that really looked like happening then it would be leaked within days. The US government can't even keep its military secrets properly under wraps anymore. Hardly likely to be able to keep this under wraps. And they are hardly likely to be able to stop all XMRV-CFS research the world over.
Sorry, but I just do not buy the conspiracy theory of big evil government over this. We have no serious evidence of that, and until we do then that kind of thinking is not helping any of us.
By far the most likely explanation is the one that several here have put forward several times, that the government realises this is very big and controversial, and are quite justifiably trying to get as much of it sorted before they go public with it. In particular, getting a proper test organised. In that context the minor delays and political machinations we are seeing are trivial issues that will not affect the final outcome.
If XMRV is as big and serious as it looks like it might be, then I would much rather they took a bit of extra time to get it right, then did a rush job on it.
Plus, if XMRV is true, they would also not want to miss out on the credit for the US finding it and grabbing as many awards and patents as they can over it. Don't underestimate that incentive. Might not be so noble a motive, but if that is what it takes then fine by me. As long as it gets done.
3. In science the main credit rightly goes to the first paper. But in some ways the really important paper is the first proper independent replication study confirming the basic results of the first paper. If the Alter paper says what we think it does, then the game is going to change pretty seriously. There is usually a snowball effect that happens in situations like this, everybody wants to get on the bandwagon, nobody wants to be left behind and made to look like an incompetent fool (though it is too late for some now).
4. There will always be some doctors who will be hard to convince, for a bunch of reasons, mainly ego. But, once the science firms up on it, there is also a powerful professional and moral incentive for most of them to not be seen as too out-of-date or incompetent or malicious.
5. I am not one of those who gets all excited at every new possible explanation and treatment. Quite the contrary, I am as sceptical as anybody, just ask my family and friends. But I am properly sceptical, not conspiracy theory sceptical.
I have seen nothing in the entire time I have been sick that gave me any real hope at all. Until now. This is different. How it ultimately pans out remains to be seen. But it is the most promising stuff so far, by a long shot. I can assure you if they really do try to bury Alter & XMRV, I will be on the front line bitching loudly about. But until and unless that happens, let's not sink into the self-defeating quagmire of unjustified conspiracy theories.
Had this for over 25 years, been through just about everything there is to with it, including nearly being sectioned, and lost as much as most patients, so you ain't telling me anything new about the appalling medical, political & personal realities of our situation. I really understand why some don't want to get burned again. But...
1. This is not the same as Defreitas, that is not a fair direct comparison. There are some serious big guns on our side this time, and the science of XMRV generally is a lot more solid. Not saying Defreitas didn't do good work or wasn't onto something (we may never know). But the quality of the Mikovits and Alter papers, and the standing of the journals they are published in, plus all the other work on XMRV outside our immediate area (CFS), all counts big time in our favour. We also have the internet now, and that is a very powerful weapon against abuses of power (when used properly).
Things have changed since Defreitas.
2. I do not agree at all that the Alter paper is being suppressed or manipulated. There is almost no possibility of that happening now, far too many people know about it. Like I said before, if that really looked like happening then it would be leaked within days. The US government can't even keep its military secrets properly under wraps anymore. Hardly likely to be able to keep this under wraps. And they are hardly likely to be able to stop all XMRV-CFS research the world over.
Sorry, but I just do not buy the conspiracy theory of big evil government over this. We have no serious evidence of that, and until we do then that kind of thinking is not helping any of us.
By far the most likely explanation is the one that several here have put forward several times, that the government realises this is very big and controversial, and are quite justifiably trying to get as much of it sorted before they go public with it. In particular, getting a proper test organised. In that context the minor delays and political machinations we are seeing are trivial issues that will not affect the final outcome.
If XMRV is as big and serious as it looks like it might be, then I would much rather they took a bit of extra time to get it right, then did a rush job on it.
Plus, if XMRV is true, they would also not want to miss out on the credit for the US finding it and grabbing as many awards and patents as they can over it. Don't underestimate that incentive. Might not be so noble a motive, but if that is what it takes then fine by me. As long as it gets done.
3. In science the main credit rightly goes to the first paper. But in some ways the really important paper is the first proper independent replication study confirming the basic results of the first paper. If the Alter paper says what we think it does, then the game is going to change pretty seriously. There is usually a snowball effect that happens in situations like this, everybody wants to get on the bandwagon, nobody wants to be left behind and made to look like an incompetent fool (though it is too late for some now).
4. There will always be some doctors who will be hard to convince, for a bunch of reasons, mainly ego. But, once the science firms up on it, there is also a powerful professional and moral incentive for most of them to not be seen as too out-of-date or incompetent or malicious.
5. I am not one of those who gets all excited at every new possible explanation and treatment. Quite the contrary, I am as sceptical as anybody, just ask my family and friends. But I am properly sceptical, not conspiracy theory sceptical.
I have seen nothing in the entire time I have been sick that gave me any real hope at all. Until now. This is different. How it ultimately pans out remains to be seen. But it is the most promising stuff so far, by a long shot. I can assure you if they really do try to bury Alter & XMRV, I will be on the front line bitching loudly about. But until and unless that happens, let's not sink into the self-defeating quagmire of unjustified conspiracy theories.
RustyJ
Contaminated Cell Line 'RustyJ'
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Just pulled this CAA comment off their wall. Might go towards explaining why Alter has kept his head down.
sensing progress
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Nice find, Rusty!
George
waitin' fer rabbits
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Hey rustyJ great find. Could you post a link to it. I can't find it. Pretty please. (batty doggie eyelashes)
RustyJ
Contaminated Cell Line 'RustyJ'
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NIIICE DOGGY. How could I refuse?
About 6th thread down which starts:
http://www.facebook.com/CFIDSAssn?filter=1
Click on 'CFIDS+ Others' page. Can't seem to get unique link for this.
About 6th thread down which starts:
http://www.facebook.com/CFIDSAssn?filter=1
Click on 'CFIDS+ Others' page. Can't seem to get unique link for this.
Eric Johnson from I&I
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Thanks a lot. I was totally stymied as well.
Even better, click "just others." After doing that, it's in the third thread.
Even better, click "just others." After doing that, it's in the third thread.
judderwocky
Senior Member
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Then they should simply state publicly they are going to produce the paper. That would stop all this.
To date, all they make are comments through other individuals. We keep hearing that "so and so heard it through a friend who saw it at the meeting"... all I want is a statement directly from them that it is actually going to be produced....
a press release on their webpage.
a memo.
a pleasant note, perhaps with a fun filled description of all the zany stuff going on in the lab.
I DONT REALLY CARE AS LONG AS IT SAYS: "we are releasing the study on xx date"
judderwocky
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LOL.... unwelcome. You think?!?
LOL
DUH.
So what the CAA is telling us is that they (some nebulous government agencies apparently too scared of their own tale to go on the record) don't like criticism. WOW. I'm glad they stretched their powers of association and used their top of the line "inside" information to inform us that government agencies don't like scrutiny. WELL THANKS. I would have guessed that much myself.
To think! people that won't even allow their names to be listed next to their comments, don't like scrutiny. An anonymous source afraid of attention...That DESERVES AN AWARD!
I love the implication that the science wouldn't speak for itself if it were simply left to publication. Had that been the case it would have been burried, instead they try to frame the situation as though its the patients that are disrupting the peer review process....
Did anybody stop the presses except the DHHS / CDC/ NIH?
I guess i missed the part where transparency was so fundamentally opposed to the scientific process.
LOL
DUH.
So what the CAA is telling us is that they (some nebulous government agencies apparently too scared of their own tale to go on the record) don't like criticism. WOW. I'm glad they stretched their powers of association and used their top of the line "inside" information to inform us that government agencies don't like scrutiny. WELL THANKS. I would have guessed that much myself.
To think! people that won't even allow their names to be listed next to their comments, don't like scrutiny. An anonymous source afraid of attention...That DESERVES AN AWARD!
I love the implication that the science wouldn't speak for itself if it were simply left to publication. Had that been the case it would have been burried, instead they try to frame the situation as though its the patients that are disrupting the peer review process....
Did anybody stop the presses except the DHHS / CDC/ NIH?
I guess i missed the part where transparency was so fundamentally opposed to the scientific process.
Thank you Sean for your post. You spoke a lot of sense.
It is also good to hear more 'information' re release of the paper. Though I have to agree with judderwocky at this point.
It is all a bit weird with tiny snippets of information being released via web pages, blogs or texts from unidentified sources. Whats wrong with a simple straightforward statement from PNAS and NIH public relations office stating when it will be published? All the stuff about the timing of release being up to the journal is also meaningless unless we have a statement from PNAS saying they will publish. Too much spin going on here. We all know the journal editors were leant on the first time around, as well as the authors.
As Sean said its hard to believe the paper won't be published, but when? And will it have it's wings clipped?
It is also good to hear more 'information' re release of the paper. Though I have to agree with judderwocky at this point.
It is all a bit weird with tiny snippets of information being released via web pages, blogs or texts from unidentified sources. Whats wrong with a simple straightforward statement from PNAS and NIH public relations office stating when it will be published? All the stuff about the timing of release being up to the journal is also meaningless unless we have a statement from PNAS saying they will publish. Too much spin going on here. We all know the journal editors were leant on the first time around, as well as the authors.
As Sean said its hard to believe the paper won't be published, but when? And will it have it's wings clipped?
RustyJ
Contaminated Cell Line 'RustyJ'
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I agree in general. However the second-hand Facebook comments may have come from Alter himself. In fact this is intimated in the thread. He probably had no control over what happened and was hauled over the coals over the leaking of the slides. If this is the case, he's probably feeling like a truck hit him at the moment and genuinely wants people to leave him alone.
Eric Johnson from I&I
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PNAS has not officially re-accepted the paper, that's what Prof. Schekman told Mindy Kitei. But in context it seemed like the matter of re-acceptance was, if not quite perfunctory, at least expected to go smoothly.
knackers323
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why dont they quit stuffing around with PNAS and take it to another journal. this is getting beyond a joke.
If the PNAS is serious about re-accepting the article, I doubt that taking it to another journal would speed things up.
Someone in a relatively recent post (about a discussion over dinner with their colleagues - I looked everywhere I could think of for the thread - my apologies) made an excellent point about the pressure on the PNAS to move forward. PNAS doesn't have forever. Other research groups are doing this work and it is just a matter of time before someone else steps forward to claim the first confirmation of the Science paper. If that were to happen, it would be a huge loss for PNAS. The next best thing to being first (perhaps even better in many ways) is being the first to confirm.