FDA/NIH Paper will be published

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free at last said:
If they know there time is up here (CDC again ) it would have made more sense for them to delay that negative paper, then work with the NIH at discovering why the two research teams results were so different. either convincing Alter that he was wrong, or jumping on the bandwagon with them, and saying see we do tell the truth we are on your side.
Hi freeatlast I disagree with the point you make here - i think the negative paper covers the CDC's back for not acting sooner in the interim period since the Lombardi paper in Science in terms of them trying to protect the public. Lets face it the CDC study cant have taken very long to complete and i expect it has been held back from being published until such time as the first positive replication study was due to be published. Im convinced the CDC's was just a gap filler study, aimed at insuring themselves against a public backlash. This short delay followed up by positive paper having a big impact and some swift public warnings would make it appear to the masses that as soon as they realised there was a confirmation study supporting a serious viral threat to the public they have acted swiftly to protect the people (when in reality they probably agreed many months ago xmrv was gonna be big yet they have stalled for as much time as possible before caving in under the growing concensus of the biomedical research community.)

hope im right on this one! *crosses fingers that paper is solid and unadjusted*

CM
 

Mark

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I'm afraid I still don't really have time to post, chaos rules my personal life right now, water supply cut off for past 24 hours+ for example, so anyway that sort of thing is why I'm not around, as I'd love to be at this crucial time.

But I'll allow myself a few minutes...

This whole experience, since October 2009, has of course been a rollercoaster ride and at times a hair-raising one. I only joined this whole ride in October 2009; unlike many others, I had never heard of Defreitas or Osler's or any of that until then - and I hadn't joined a roller-coaster simply because I'd never seen one that looked worth joining. So I don't have the legacy of ups and downs that others have had with the history of ME and CFS science - a history that will one day be a shameful lesson that humanity will seek to learn from.

So perhaps that's why I'm not quite as pessimistic as free at last, but nearer to omerbasket's cautious optimism.

I agree with the reality of everything free at last says about the potential tools of pressure, the levers of power exercised by the vested interests. Indeed I would go much, much further than this, on this subject, if it were relevant. But I just don't think these strategies can work from where we are at now. They are just far too high-risk. Things have gone too far for that.

The sort of conspiracies you're talking about, free at last - never has such a thing happened in plain view in such an open way as would be necessary here. If Alter's conclusions were to be altered and he were to suddenly appear saying "I was wrong about XMRV and CFS" then he might as well have "I have been silenced by the dark side" tattoed on his forehead. I mean: the entire worldwide online CFS community, surely, would then know this is a conspiracy for sure, if that were to happen. Even a lot of BSers who've got dragged in would start to wonder - I seem to recall seeing one of them effectively admit that recently. The wolves that would be unleashed if such a retraction were to happen now, would make the "angry CFS community" they know and love seem like a church picnic. Nobody can risk that kind of exposure. Conspiracies like that don't happen in quite such plain view.

The future's unwritten, but it seems to me far more likely that omerbasket's version of events is roughly accurate (I thought that was a great post btw).

A lot of people have described this as a 'rollercoaster' experience, so I would like to offer a different metaphor.

What I have seen is a serious of conversions. People who have lived without hope, without belief in the possibility of change or relief; people who have resigned themselves to their fate...like me...have one by one come to look at the detail of what's going on, followed the progress, and at a series of milestones, each time a whole new bunch of people are converted and become "believers" in the WPI and their findings.

These conversions, it seems to me, are conversions from despair to hope, and mine had a hugely positive effect on my life in general, and so I really do hope you'll have one yourself, free at last, in "a few weeks" time...

But finally, it's perhaps time for us to start thinking one step ahead. It's easy to do: our enemies have a very simple strategy really - deny absolutely everything. So we really shouldn't be surprised when the CDC, Wessely (sorry: "scientists who have seen the paper"), and other interests react by saying these could be different patients, these results could be based on a geographic cluster, the testing method is flawed somehow, etc etc etc. Those people will try anything, as they have recently and graphically proved. We shouldn't be surprised or upset when they carry on doing it. Somebody made the very good point that this latest delaying tactic, slowing down the research process, will have to be investigated one day and brought to justice - but those same delay tactics are now only about one thing: postponing that day, and that battle will happen at every step of the way. Maybe one day they will lay down and resign themselves to the inevitable, but I'm not holding my breath. They show no sign of giving up.

So brace yourselves for the arguments to come. There is no proof it is in CDC's CFS patients; they are a different disease. There is no proof it is in the UK. There is no proof it is causal. OK, so it's causal...but there's no treatments so the best plan is to stick with CBT for now. OK, there are now some treatments, but they aren't robustly proved yet. OK, so they're proved, but they're too expensive right now. What's that? Where did it come from? There is absolutely no evidence that it was ever in any vaccine - that is pure speculation. Anyway, there is no point trying to investigate the origins or causes, we should focus on treatments (that's how they play cancer, and very successfully for many years, so here we will probably stall I'm afraid).

So yes, yet more shameful, unethical, dirty fighting against the truth is only to be expected from these psychowarriors. It will be a matter of years before we can really post "Game Over" with any confidence. But we can already say "The Game's Up" :D

remain calm, speak the truth, and the truth will set us free. :D

:sofa:
 

RustyJ

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At the risk of joining the long ranks of the CAA bashers, (I have been less than enthused with the CAA's blustering) it seems to me that the CAA has recently and in a major way climbed on board the XMRV bandwagon. Their last 2 articles have been deliberately and carefully weighted in support of XMRV. It seems they are going out of their way to placate us. Something has triggered this change of heart. Do they know more than they are letting on? Perhaps they know the study is very good for us. I am more optimistic as a result of this change of tact.
 

muffin

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Good news but...WE MUST KEEP BANGING THE DRUM UNTIL THOSE STUDIES ARE OUT

Thank you Mindy for great insider reporting. Job well done.

I agree with Hope123 and wise insights.


Have to keep an eye on these people and continue to make sure they know that we are all watching. By now even those with insane amounts of hubris (Reeves, et al) should know that the Internet is super powerful and we all have our Google Alerts, etc. and hit the blogs as fast as possible. News on this stuff travels super fast and we all react super fast.

I know that I and many others make it a point to spend what energy we/I have on emailing the heads, media, etc. and updating them on what is going on. I made sure to send off Hillary Johnson's blog so that everyone could see what is being printed out there. Hillary is top notch and dangerous to those that have destroyed research/funding and CFIDS sick for three decades. She is the "corporate memory" on CFIDS, so I use her stuff and send all my emails to the Feds with her links to Oslersweb.com. This gives great background quickly so that people can see just why we are so damn mad. I used her WHY speech in my first email to Freiden at CDC after he was first appointed so he could understand just why a tiny little $4Million contract could create so many problems for him and so much anger from millions of people. Ditto for Sebelius but I doubt she reads her emails. God knows I have sent her enough of them (always gracious but not playing games).

QUESTION: I know Hillary does not want people reprinting her blogs, etc. but does that mean we can not copy/paste her stuff into emails?????? I should ask her directly if this is a no-no.
 

anciendaze

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... QUESTION: I know Hillary does not want people reprinting her blogs, etc. but does that mean we can not copy/paste her stuff into emails?????? I should ask her directly if this is a no-no.
muffin, I would say that you should always include a link, so recipients can see the original on her website. Quoting a phrase or sentence is not out of line, but copying articles and distributing them by email hurts authors by denying them hits on their site which show how many are reading. There is also the problem that even if you are careful about how you treat quoted material, your recipients may do anything with it.
 

Levi

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Let me see if if got this straight. . .

Yesterday we were wringing our hands an gnashing our teeth over the Independent article reporting that Alters study was "seriously flawed" and not likely to ever see print, but today we are cheering and fist pumping because Mindy in saying the report is comong out soon and that original conclusion will not change, merely be better supported.

Sorta like one day saying both papers are on hold in the WSJ, only to see the CDC paper released that very next day. We need to work out some sort of 24 hour time delay news embargo on posts so this offsetting news reportage cancels each other out, and minimizes the drama.
 

jewel

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I don't know, Levi, don't you just love the play-by-play descriptions? And the emotional ups and downs? LOL ... Honestly, though, I do think there is value in the details as they happen, though I do try to impose forum/web vacations on myself for my emotional well-being. It is hard as info trickles in to maintain detachment and refrain from reaching ever-changing conclusions... Take care, J.
 

Trooper

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Thanks for the heads up Mindy. That will give me something to look forward to in the next few weeks, although I wish it was out sooner of course.

Part of me was concerned that this paper would never see the light of day :S

I hope this is the paper that finally validates the October paper and moves us into phase 2 - which will no doubt have just as many twists and turns.

*waits* : )
 

garcia

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At the risk of joining the long ranks of the CAA bashers, (I have been less than enthused with the CAA's blustering) it seems to me that the CAA has recently and in a major way climbed on board the XMRV bandwagon. Their last 2 articles have been deliberately and carefully weighted in support of XMRV. It seems they are going out of their way to placate us. Something has triggered this change of heart. Do they know more than they are letting on? Perhaps they know the study is very good for us. I am more optimistic as a result of this change of tact.
Lets hope it is a genuine change of heart on their part, and not just some short-term PR to placate the rebellious masses.
 

Sean

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I understand those who are deeply cynical about this. But for the first time in more than 25 years with this disease, I am optimistic that we are seeing the beginning of the (long overdue) power shift. ME/CFS can't be swept under the psycho-social carpet any longer.
 

taniaaust1

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The CFS Central blog post says the Alter PNAS paper has the same (original) conclusion after whatever extra experiments were requested

One would assume then that it made the evidence in the paper even stronger, here's hoping
I second Ash's post.

Hopefully it's almost time we can all celebrate (thou im still not sure about how i feel about probably having XMRV)
 

taniaaust1

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I think it's been suggested by others, but the CDC could just be in elaborate CYA mode. Cynically, use the wrong sample, and claim that X related pathologies are an entirely different disease from what they've been studying all along. Plausible deniability. Not very credible, but perhaps enough to shelter them from congressional investigation. (Though I hope inneffectively. I would love to see them all appear before committee, under the lights of C-Span, grilled till they are blue in the face.) But also, using methods that other respectable retrovirologists have used and that have found no XMRV in prostate samples. Again, plausible deniability. I.e. "we did our best with the methods we had." They don't come off as looking particularly bright, but they avoid criminal charges.
or they may just say "we used methods we believed at the time would work." No one can prove they did it on purpose. Only they themselves know
 

Jerry S

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Originally Posted by taniaaust1:

or they may just say "we used methods we believed at the time would work." No one can prove they did it on purpose. Only they themselves know
I think the fact that the CDC, not only sought to obscure the use of Reeves' empirical definition in the Switzer paper, but claimed they used 1994 Fukuda on its XMRV website, points to quite purposeful intent.

The paper says they used the "revised 1994 International Case Definition of CFS." (How grandiose they are.) The CDC XMRV webpage drops the "revised."

Revised 1994 International definition = the Reeves empirical definition.

1994 International definition = the Fukuda definition.

I don't think any reasonable person, who understood the vast difference between these two case definitions and the CDC's history of attempting to hide the real disease, would consider this an innocent mistake.

If the CDC really believes the Reeves empirical definition is the same thing as the 1994 Fukuda definition, why did they try to hide the fact that they used the Reeves definition in the paper on their website?

Several of us have written emails to the CDC and HHS pointing out this sleight of hand. We have not received any response.
 

paddygirl

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I just had a read of the script of Dr Komaroffs lecture for masscfids.org. I hadn't seen this before but at the end he addresses the xmrv debate. He said that the Milovits team had been asked to support their claims and redo results many times for the reviewers. So maybe not so strange for the Nih to do it. As we say where I come from, to be sure, to be sure....
 

Sasha

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I just had a read of the script of Dr Komaroffs lecture for masscfids.org. I hadn't seen this before but at the end he addresses the xmrv debate. He said that the Milovits team had been asked to support their claims and redo results many times for the reviewers. So maybe not so strange for the Nih to do it. As we say where I come from, to be sure, to be sure....
Hi Paddygirl - what was strange for extra tests to be requested after the reviewers had already passed the paper for publication and the editor had accepted their recommendation. Reports are that the authors had even received the galley proofs (i.e. their paper had been typeset ready to be printed in the journal). That's what wasn't normal.
 

Jerry S

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I just had a read of the script of Dr Komaroffs lecture for masscfids.org. I hadn't seen this before but at the end he addresses the xmrv debate. He said that the Milovits team had been asked to support their claims and redo results many times for the reviewers. So maybe not so strange for the Nih to do it. As we say where I come from, to be sure, to be sure....
I think there was an undue burden placed on the WPI paper (It's good now that they met it.) and the Alter paper. The CDC's flawed piece of junk sailed through.
 

muffin

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I think there was an undue burden placed on the WPI paper (It's good now that they met it.) and the Alter paper. The CDC's flawed piece of junk sailed through.
This was well beyond an "undue burden" placed on the WPI and NIH/FDA studies. WHY NOT the CDC's piece of garbage study being reviewed again? Someone tell me why???