Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Jun 30, 2010.
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But notice that they let the dutch negative study be published even though possitive samples had been found in it - but they are not letting a possitive study be published
good job Cort, as always
""At the end it's astonishing - at least to this layman - how little resolution there is to the XMRV question 8 months after the publication of the initial paper. The problem was reportedly not simply that the papers disagreed; it was that they disagreed in a manner which didn't lend any clarity to the XMRV question; ie even after looking at them it is impossible to tell who was right and why.... ""
I think this is hitting on a very crucial point.
Great stuff but I'm compelled to add that in the end the long-suffering patient population loses.
We all feel that XMRV needs to be nailed down once and for all. It may not the cause, or a major contributor (it seems increasingly less likely these days) but the science needs to be published, debated and settled. It's possible the CDC study, despite rumors of it not finding XMRV at all, may hold a key piece of evidence or methodological deviation that helps to prove the case for causality of XMRV in CFS. Science if full of serendipitous discovery and apparent contradictions that turn out to be mutually-consistent pieces of information. Who knows? Not the government "officials" to be sure.
In the end the science had better carry the day, not the politicking and until that time comes patients continue to lose as we have for decades.
I urge our government officials to let our papers go and the science will take care of itself. We the taxpayers footed the bill for this work. The longer you hold back information the more suspicions of impropriety will be raised.
I'm glad someone is covering this, but for the love of decency, could someone please ask the author to cease using the term "chronic fatigue", as it is offensive. It's just as offensive as calling AIDS 'gay cancer'. I tried to post a comment but it wasn't put up. Maybe if someone else tried or enough people speak up they will (again) correct this gross oversight. Would someone please attempt this?
Nice write up Cort:Retro smile:
I agree - as usual.
Who are 'they'? The CDC? NIH? HHS?
And how did they have any control over publication of the Dutch study?
I agree. I think the research community loses but not being able to see what these researchers are doing it and how its working out for them. These are supposedly some of the top labs in the world - labs that other researchers would use to inform their efforts - and now it's all under wraps. God knows how long it will take to get issues sorted out; meanwhile researchers will continue on without the benefit of that knowledge.
Again what strikes me is how tricky this bug is! I guess these are some of the 'best and the brightest' and its got them tied up in knots. I would love to hear what Coffin and Goff and Racaniello are saying about this turn of events in private. (I can guess what Mikovits and Ruscetti are )
My fear is that only the CDC paper gets published. And that the CDC once again finds a way to suppress etiological evidence in this illness.
What if they know how people with CFS got it - and it somehow implicated their public health policies (i.e., vaccines)?
If the cause is so heavy that it could sway HHS to pressure NIH not to publish...argh.
I guess that is my biggest concern with all this - not believing their delay is for concensus or fair mindedness - but the opposite - the suppression of information that may be critical to the illumination of cause and the CDC's role and knowledge all these years.
Thanks for continuing to track and summarize this story, Cort! My only question is about your statements here:
"At the end it's astonishing - at least to this layman - how little resolution there is to the XMRV question 8 months after the publication of the initial paper. The problem was reportedly not simply that the papers disagreed; it was that they disagreed in a manner which didn't lend any clarity to the XMRV question; ie even after looking at them it is impossible to tell who was right and why....
To me, this seems like your guess only. When top scientists assess these papers, however, it may well to possible to tell who was right and why. That to me seems more likely.
My guess is that the hold may be both a function of temporarily saving face, re-framing the study or studies which were unsuccessful, and in preparing for the consequences of the news which they will be releasing...
Well...I think now we know why the FDA and NIH findings were "leaked". I guess they knew this was coming. It is ridiculous that the DHHS is allowed to withhold this information.
I'm afraid that you might be right.
XMRV Petition Link: Let My Papers Go
Cort , Here is a great Petition I found on the WPI Facebook Page. We need all we can to sign it. HHS halting the process is WRONG. Can you imagine this happening to Gallo with HIV in the 80's??? No way. Here is the Link: http://healthcare.change.org/petitions/view/xmrv_allow_science_to_progress I will also email it to you. Thanks Bob M
I got that from this quote from the article
Maybe I read too much into it......your guess about the reasons for the hold mirrors mine.....what an up and down road this has been...
Tracking the full costs of delaying publication
I'd like to throw this out to the community with the hope of getting the attention of some people with the skills to make a project like this happen. Earlier today, someone suggested a clock on the PR Home page to track the time that the delayed publications are costing us.
I want to suggest a clock with a few additions. I want a tally, beginning at zero for an estimated day / time of when the FDA paper would have been released (say Thursday - 7/1/201 at 9 am est). Then, using that time as a base, we use CDC figures to estimate the number of sick days that were lost because of the delay. We estimate economic impacts such as lost wages/missed work hours, lost taxes, etc. Estimated medical expenses,and perhaps even the number of premature deaths (using data such as the study showing that the average age of death from a heart attack vitim with CFS is 58 and the average in the population is in the mid-70s) that occurred during the delay, and the WE"LL NEVER GET BACK.
Given that we're talking about 1-4 million people in the US alone, I strongly suspect that the numbers will become staggering quite quickly.
I'm looking for anyone with ideas/experience that wants to help. We need to make the costs of this delay tangible to the public as well as the DHHS. The human and economic costs of their delay as a tactic to manage the "situation" politically would may on its own cover a significant portion of our future medical expenses.
Let me know.
A voice of reason among the cacophony . . . thanks, Cort.
Thanks Cort for the good work.
I understand that the negative paper from the CDC has been released now. No word on when the NIH/FDA paper will be released or if it's being re-written to conform to the CDC's position. This disease could have been solved long ago, before I became ill in 1999, if it weren't for personal agendas and corrupt politics - and yeah, I'm angry about that!!
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