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A Little Poisoning Along the Road to ME/CFS
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FDA/NIH Paper will be published

Discussion in 'XMRV Research and Replication Studies' started by Mindy Kitei, Jul 9, 2010.

  1. free at last

    free at last Senior Member

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    No im saying the additional studies will find problems wth the earlier conclusions, why do you think additional experiments were asked for, if the earlier concluisons couldnt possibly be cast in doubt, or being wrong or inconclusive in light of these new experiments and what they will find ?

    if problems are found ( they will find a way i assure you ) then it will all tie in nicely with the CDC result, get both the NIH the CDC off the hook, after that leak was never meant to happen.

    I know i wont be believed untill the big day of publication. then my words wont seem so silly. Place your bets everyone, the clock is ticking.

    you dont think i want to be Wrong, ive wanted to see the truth for 15 years, i might actually cry if the truth is told. but sorry i dont belive it, there has been a coverup for far to long. to many will lose face if the truth comes out, wessley, reeves ect.

    The CDC can not afford to be seen as incompitent, there whole reputation relies on this, get real. you really think they would publish a piss poor negative study, knowing full well another goverment agency was about to make them lose all credabillity for ever, damaging the dept probably permanently. yeah of course pigs will fly.
    sorry but i dont have faith, not even 1%. lets see if im right. BUT I PRAY IM NOT
     
  2. Hope123

    Hope123 Senior Member

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    I think we're on a spectrum of beliefs here about what is going on and unfortunately, I have to agree with free at last though I might be a bit less pessimistic. It's not over until the fat lady sings. The only way to really know what it going on is have the "original" AND "revised" Alter papers to look at and even then, we'd only see words and not what happened in the labs and government backrooms.

    KUDOS to the patients, family members/ friends, media, researchers, clinicians, and government officials (many of whom we may have not heard about) that advocated that the FDA/NIH paper be published openly! I suggest we keep the pressure on until we ride out of the woods.
     
  3. omerbasket

    omerbasket Senior Member

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    "free at last", I don't think that your "words seem silly". what you're suggesting might happen.
    But please, we're not profits... there are many aspects to this thing. For exapmle, it's possible the the CDC have published their study knowing that there will be another well-performed study be the NIH and FDA (or researchers from there, because from what I've read it's possible that Alter et al would state that this study does not represent the NIH and FDA) to would find contradictory evidence, but the publishing the CDC's study was their only way to try and stop the truth from being accepted? I mean, perhaps the CDC still wanted to fight it, even at a greater risk, than to come out and say: "Yes, we have been absolutely wrong and misleading for 25 years"?

    Don't foget that Harvey Alter and the other researchers in this study didn't perform it in order to distract people from the truth - and the evidence for that is that they DID find a strong connection between ME/CFS and XMRV. I think it's likely that they won't allow their study to be disputed.

    From what I've read lately, the process was as following: The two papers were accepted for publication. Then the journals were asked to hold the publication. When they were asked to do so, the editor of PNAS sent the Alter's study for further review, which came back with requirement for additional studies. Meanwhile, the embargo was lifted and the CDC's study was published, but the NIH/FDA one wasn't, because they still haven't completed the studies they were asked to complete BY THE JOURNAL. Now, apparently, they have finished them, and the study is about the be published with the same conclusion.

    Now, it's also, as I said, entirely possible that what you're saying is right. We can state many reasons why it might be right, and you've stated some of them. As I did here, we can also state many reasons as to why it might be wrong. I think it's better not to make predictions, but to keep being suspicious and to wait for the study to come out.
     
  4. firefly

    firefly

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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.
     
  5. dsdmom

    dsdmom Senior Member

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    My first reaction was excitement. Then as it sunk in I realized I don't believe anything until it is out and published and is a positive paper! However, even if their conclusion is that 80% of CFS patients have XMRV, I don't suspect this will be the end of it. I wholly expect the CDC to fight it and there to remain much controversy. I just hope this is a big step in the right direction and I have to think that Alter is too well respected to be told that his studies are severely flawed.
     
  6. Otis

    Otis SeƱor Mumbler

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    The way this Shakespearian tragedy has unfolded means seeing will be believing for me, but if the paper comes out in a few weeks (did someone say August - yes that was George, I believe - woof) I can't see a reversal but change is indeed still possible. That said, the skuttlebut makes me feel cautiously optimistic. Emotionally I can't handle anything more this time around.

    Ignoring the bit about the CDC not finding ANY XMRV, they've left themselves an out. They weren't studying people with physical illness. The dilution of the CFS definition, especially in this study, will let them claim this is another illness. XMRV is something else, something new(?), something really hard to find - especially when you toss out the WPI positives and methods out with the dregs from the coffee pot.

    They have a new poker hand to play. Now that makes a mess of the research, and we do need to continue to look beyond XMRV and for synergies, fitting the pieces together.

    Before we get to that stage I expect we'll hear more nonsense about cohorts, contamination, etc.

    If the paper comes out shortly and is positive, the science will move forward which is what we need at this point. And we need to help the press see the forest for the trees.

    So SHOW ME THE PAPER! :)

    ETA: I type far too slowly on this wee little cell phone, firefly and dsdmom said many of the same things. In the short-term I'd settle for an inquiry as to why the CDC can't find XMRV, at all. Talk about a major story, and easy for the press to understand.
     
  7. Eric Johnson from I&I

    Eric Johnson from I&I Senior Member

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    free,
    Surely if the government were to imprison the study again, even the journalists who were content to see them suppress it the first time (and the hell with all of us) would say "hey come on, you can't *really* be serious!?!?" So I doubt the study will disappear again.

    That doesn't mean the entire debate is completely over. But it sure is looking fairly good.

    I really doubt there is any reality to the claim that something is "wrong" with the paper in any remotely obvious way. This whole affair may have been a ruse to stall for time, in order to check out civil liabilities, or prepare to start screening the blood supply. Perhaps most likely, Fauci or the like just hoped against hope that it wasn't true, because they found it slightly embarrassing to themselves personally -- they must have hoped rather fervently, else they wouldn't have embarrassed themselves by revoking the paper... so they wanted to send it to someone they trusted, for more review... but did not at any point intend to actually suppress it (ie, lie like dogs and go straight to hell upon their decease) in the event that their personally-trusted retrovirology experts found it to be legitimate work. Heck, it's even possible that part of their motivation might not have been embarrassment, but actual concern about the public being rightly informed.

    So I don't think you should consider the paper "faulty" in any obvious way (which is not to say that it could not possibly be faulty). Whoever blathered about it being unpublishable in The Independent -- well, that could very well have been Simon Wessely, who has supplied sound bites to that particular reporter more than once in the past. And heaven knows what kind of mental health crisis poor Wessely is experiencing at this particular juncture. Remember, the paper was totally accepted by both PNAS and its reviewers before any of this whole BS extravaganza went down. And, though he's no spring chicken at this late date, Harvey Alter is a flipping monster on wheels. There's always *some* component of luck involved in every big discovery, so being involved in two big discoveries the way he was is truly stunning -- it shows that the component of luck was probably pretty small in his case! This guy seems to have the abilities that most research professors, even most highly-accomplished research professors could only dream of. I'm sure he's been wrong a time or two in his life, but apparently it's not his specialty.
     
  8. firefly

    firefly

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    One more thought. I think putting pressure on Collins could be a good way to go at this point. As far as I know (and please feel free to correct this if I am way off the mark) he is relatively new to all of this. He was only recently appointed to the NIH. He has a distinguished research career, but I suspect he knows little or nothing about the sordid history of CFS at the CDC. CFS is likely new to him. He's the one with power now. He's the one to convince. Fauci has a 25 plus year history of negligence to defend. Collins on the other hand may be the one who can turn the apple-cart upside down. It's just a matter of making sure he is aware of the history here. That may be easier said than done.
     
  9. Sasha

    Sasha Fine, thank you

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    Thanks for posting this news, Mindy, it's a huge relief to see Alter's study back in the pipeline. Reassuring also to know via the CAA's sources that the conclusions remain unchanged.
     
  10. Eric Johnson from I&I

    Eric Johnson from I&I Senior Member

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    Collins is very new. So if you were to write to him (which I don't personally see as being necessary) to say "hey we are still keeping an eye on this thing!" -- I think you should be really nice. He hasn't really ever done anything to us. Fauci is not our biggest pal, but even he should receive all possible courteousy at this point. After all, he has just done the right thing, which may take at least a modicum of guts. Better late than never... men never were fitted out to be angels, after all.

    And more importantly, we will need the good will of these guys in order to maximize the extent of our upcoming massive expansion in research funding!
     
  11. julius

    julius Watchoo lookin' at?

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    Eric,

    I couldn't agree more with your last two posts.
    Once again, very good things to think about.
     
  12. firefly

    firefly

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    Eric,
    I agree entirely. If anything, a barrage of emails to Collins right now might well be counterproductive.
    Yes, to evertying you said above.
    Best,
    Firefly
     
  13. natasa778

    natasa778 Senior Member

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    :D:D:D

    I expect that all this stress will trigger off some sleeping retrovirus in him ;) - come to think of it he must have picked up a bug or two during all these years being in close contact with ME patients. Here is to hoping!
     
  14. akrasia

    akrasia Senior Member

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  15. anciendaze

    anciendaze Senior Member

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    On the question of "why can't the CDC find XMRV?", I've just been through an exercise concerning XMRV in prostate cancer. There have been a number of studies showing a flat zero percent. Prior to 2006 you could say every researcher in the world produced that result.

    Since XMRV was originally tracked down through connection with a rare familial prostate cancer involving an identified genetic defect, it would be hard to claim absolutely no PC patients with XMRV. Some groups which originally found zero percent talked to the discoverers and revised their techniques. Over time the percentages climbed. The group monitoring Japan's blood supply started at zero and now finds 2% of their general population infected. It took time to get there.

    Dr. Hohn, who supplied samples used in the CDC paper, had previously been involved in studies showing zero percent XMRV in German PC patients. After some changes in technique, he was involved with finding XMRV in secretions from lung tissues of patients with impaired immune systems.

    William Switzer and W. Heneine actually presented a paper in which they did find XMRV in February. It turned up in 2 out of 165 tissue samples from prostate tumors. If I assume they were taken by surprise last October, it looks like they have now come to a point Silverman had reached several years ago. This is actually fairly good progress.

    They could even come up to speed with another six months work. At that point, one might ask why they rushed out the negative study on CFS with such fanfare. That, and the attempt to prevent publication of conflicting results, will need to be explained.
     
  16. free at last

    free at last Senior Member

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    I always feel one way, then you guys make perfect sense, and i end up feeling like a parenoid fool, that is untill the big day, then i dont feel so parenoid and just realize it really is as bad and corrupt, as i always seem to see.

    you know my views are too extreme i accept that, i truely belive people can be threatend, or payed handsomely or told its for the good of the nation to play along, that includes journals and scientists alike.

    yes im suggesting pressure or reason can be put on people you wouldnt think can be corrupted. I have no evidence of this of course so its really in the realms of the x files, that is, as i say, untill the big day.

    with our eyes and hearts open wide, filled with hope for a new beggining and future, like others here excited to think that its really going to happen this time. Well when it does ill throw away my parenoid thoughts and embrace this new truthfull begining we all want to see. instead of the smack in the face i feel we all are going to get when that paper is released,

    Rumour that the conclusions of the NIH paper have not changed since additional studies have been completed, mean nothing to me, i want the positive paper, rumours are often so unreliable as to be pointless mentioning them.

    The CDC fighting back with that poor negative study, when a much better, more conclusive one is about to be released, seems way off to me. They (CDC ) are not that stupid, they are fighting for there life here, and doing that would just damage them beyond belief.

    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.

    in the excitment of it all, a lot might forgive them, or at least think maybe they just needed evidence that they now have.

    They would certainly come up smelling of roses a lot more than fighting back with a poor study, Knowing a much better one was coming making them look for all the world like idiots.

    But thats my problem i know they are not idiots at all, and feel strongly they know exactly what they are doing.

    Indeed they seem to know something we do not, something that will get them out of this mess. I belive that something is, problems will be found with the original conclusions of the Alter paper.

    They will find problems, they will make problems whatever, the CDC and NIH studies will unite, but im afraid its under the carpet time again.

    Yes i really dont trust goverments or depts at all, sorry Mr clinton went on national tv, and lied to the nation about Monica, to save hes bacon. Are the CDC Powerful enough to do the same and more, I think they could be, especially if they convinced those in higher places, that this has to be the way they deal with this issue.

    Since wpi released there study there has been a systematic effort to discredit there findings worldwide, some may argue no this is just poor science, rubbish, they know what they are doing

    if there own familys lifes depended on it, how many would have replicated the wpi science by now ? to date not 1 single study lol.

    Im glad some have faith, i hope i am wrong. i will laugh with you all when our world changes, and the NIH paper changes everything for us for ever. And will laugh how parenoid i became back then for a while, with you all.

    Tick tock, we will know soon enough. Good luck everybody, a part of me is hoping with you all, the part that wasnt destroyed by some doctors handling of my illness, and those who teach them, that we are all illness belief mentally disturbed, Long live the WPI, and mr Hooper, and so many who fight these wicked corrupt people who have judged us, and left us for dead, in some cases leading to that, shame on the CDC, Simon wessley, Bill Reeves, and others, you know who you are, even if we do not.
     
  17. George

    George waitin' fer rabbits

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    Here's a total rad possibility. (big grins) The new head of CDC Dr. Frieden decided he didn't like Dr. Reeves et al, they are all old school power munchers, who might give him problems or at least attitude. So he let them do their study, even though he moved Dr. Reeves over to the Mental Health area. Knowing that Reeves and company would skew results to the negative, Dr. Frieden (an infectious disease guy) let the paper get written up and then, while in a meeting with the head guys over at the DHHS having a pow wow he finds out that NIH and FDA are going to publish a big positive study. So he Doc Frieden, rubs his hands in glee, gives Reeves et al every opportunity to take the paper back and then says "bam" publish it and now you guys will drowned in your own ego driven idiocy and he won't have to worry about them while he's in charge. Cause those boyo's will be hiding in the shadows. (grins)

    There ya go that's my conspiracy theory. If yer gonna have one it might as well be a fun one. Woof!
     
  18. serenity

    serenity Senior Member

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    i love your attitude George, you always cheer me up :)
     
  19. free at last

    free at last Senior Member

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    I Dont Think Bill thats gullable but you never know it is all in the air isnt it, and i agree yours is certainly more fun, Bill got hes lol
     
  20. George

    George waitin' fer rabbits

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    It Could Happen !!!!!!! (big grins)

    :D:D:D:D:D:D:D:D

    You may now return to your regularly scheduled seriousness. (grins)
     

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