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Concern over government cohorts

Discussion in 'XMRV Research and Replication Studies' started by usedtobeperkytina, Nov 23, 2009.

  1. usedtobeperkytina

    usedtobeperkytina Senior Member

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    I have seen many say they are concerned over the government (CDC and UK) using patients that meet the Canadian definition.

    This, of course, would be ideal. But don't bank on it. But I don't really think this matters that much. The key is all the other labs that are trying to verify this, using the same type of people. And I think they will.

    The government has their bias and formed a definition based on that. But retrovirologists have not. They don't care who the patients are and what the label is, they are interested in the virus and what it does. I think most of the other private labs looking into this will follow the WPI standard, and likely some of their samples.

    And, I think I heard WPI was also sending samples to CDC. Or was that said but not confirmed by WPI? Anyway, the labs that do include samples from WPI will likely differentiate them from the others they test.

    I think WPI is likely making it very clear to those who want to validate the study (non government as well as government) that the patient choice must be strict.

    And think of this, the WPI study was immediately under scrutiny by others. Questions of demographics of patients not being included in Science article and whether lymphoma patients were included came up. WPI answered those questions. And WPI was smart to get respected laboratories to do a check on their work, National Cancer Institute and Cleveland Clinic. And they kept it quite until publication. They played this right at every move.

    I think maybe this time the government will not be able to twist this.

    Too many people are interested in this. One of the main problems we had for so long is that any little abnormality found in us was also seen in some of population at large. And there weren't enough researchers interested in it, besides the government, to verify or follow that lead. The money and interest wasn't there to bring in more voices and more findings.

    But that has changed now. We got all sorts of institutions and a whole new group of researchers, virologists, interested in this. Lab companies are interested. Drug companies will surely be interested.

    If the government comes out with something totally different from the other private labs, then the preponderance of the evidence will be with the multiple private labs.

    The only concern I have is a race of time. If the government comes out with an announcement contradicting the WPI finding before the private labs do, then it will squash the interest. Let's hope the private labs get theirs done first. I do think they are all acting fast. Competition is good.

    Tina
     
  2. Samuel

    Samuel Bedbound with NO DOCTOR

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    You make good points, Tina.

    The CDC had a head start, probably.

    I think that we need to inoculate (preempt). How best to do that?
     
  3. Mark

    Mark Acting CEO

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    Concern over government capabilities

    I hope you're right Tina, I honestly do.

    Your analysis reflects my own thinking a few days ago, and is both more sober and more optimistic than mine at the moment, and the WPI do appear to be playing a blinder, but I'm still trying to answer a few questions that I'm really struggling to get my head round. I know the answer to such questions is usually best presumed to be "incompetence of the highest order", but it's the sheer height of the order of the incompetence required in this case that troubles me. I apologise in advance for raising these questions, and I assure you that they are as distressing to me as anyone (and perhaps my current tone is my own peculiar way of dealing with that), however I sense they will all need to be addressed at some point.

    - What exactly was the CDC's reason for not showing much interest in explaining Elaine DeFreitas' study that found a new (infectious?) retrovirus in humans (albeit only in CFS patients) in 1991? Were they just really confident DeFreitas had made it all up? Perhaps they simply assumed she had made a mistake of some sort? Or perhaps they didn't think an infectious retrovirus was important enough to justify the cost of a flight? Maybe they were just really, really busy?

    - Was it 2 or 3 studies that were "unable to replicate" DeFreitas in 1991, I forget? Do I remember right that at least one of those studies took place outside the US? How and why did those studies fail?

    - If 2 or 3 studies can fail in 1991, what is the maximum number of studies that can fail in a similar way in 2009?

    I can only think of two scenarios (other than an act of almost unthinkable negligence with a devastating human cost) that have been advanced to answer the above questions, but both scenarios are extremely upsetting.

    One has been discussed already on this forum and concerns the capability of a non-infectious biosafety level 2 murine retrovirus to escape from a laboratory and somehow become infectious. This scenario is quite impossible, but unfortunately it was recently established that it has been known to happen.

    The other, even more disturbing scenario, which I have seen proposed on YouTube and elsewhere, appears to quite rightly fall outside the usage guidelines of this forum, although I hope I can safely say that this scenario would bring Gulf War Syndrome very much into the picture.

    Here, then, are the only 3 scenarios I can think of (including the scenario of a series of very, very embarrassing mistakes), and what disturbs me most of all is that all 3 would provide considerable incentives for everyone involved to attempt to draw a discreet veil over the whole episode if at all possible, since any one of the 3 would constitute a pretty major news story.

    In the scenario of incompetence, one can reasonably hope that the individuals involved lack the capability to draw the necessary veils, and in the scenario of escaping retroviruses it's to be hoped that the details of this theoretical event are not known now (and were not known in 1991) to anybody with considerable power and the desire to keep the matter secret. But the third scenario might present us with a significant challenge.

    All of which, I'm afraid, leads me to reluctantly conclude that we can't take anything for granted yet, and that there may yet be some really hard work ahead of us.
     
  4. Mark

    Mark Acting CEO

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    Very nicely put.:D

    Indeed we do: this forum is a pretty darn good cure for those intelligent enough to follow the discussion and with a few days to spare to explore it, but an innoculation would be much preferable if you believe in vaccines. As a headline feature, we could feasibly have a poll and predict some numbers together? But I'm assuming you're thinking in terms of innoculating as much of the wider population as possible, ahead of the unknown date when the CDC reveal the results of their...er...study.
     
  5. caledonia

    caledonia

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    Maybe it's not as bad as all that. You already have William Reeves saying to the New York Times, he doesn't think the CDC is going to replicate the study. Then you have the CDC taking the replication project away from the CFS office and William Reeves and giving it to the retrovirus lab.

    There are starting to be articles appearing about people losing confidence in the CDC and implications of manipulations of data. And according to CDCchatter.net, people are leaving the CDC in droves.
     
  6. hvs

    hvs Senior Member

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    My guess is that, since the CDC put all their chips on the "finding" that CFS had no viral etiology in the mid 1980s, the bureaucracy offered a natural reaction to a fundamental threat to their prestige/jobs/etc. It naturally took every opportunity to allow a replication study to fail. I'm not offering a conspiracy theory; I'm not charging anyone with evil-doing. I'm suggesting that what is a typical pattern with contemporary bureaucracies was probably repeated here. I thing, in so doing, that I am observing Occam's Razor. (And I think there's some good evidence that important figures in the CDC and in the CFS office in particular are not the sharpest tools in the shed and have, again quite naturally, developed some belligerence towards patients who blame them for a lot.)

    ...

    Alas, those newspaper headlines announcing that the CDC/NIH have undermined the WPI discovery seem imminent. While legitimate labs using authentic CFS patients should eventually replicate it, tremendous damage will be done by the mere headlines about the CDC/NIH. It will be a staggering blow, even though momentum will recover. If only we had a national advocacy association working right now to soften its impact by shouting from the rooftops about the inherent flaws of the CDC/NIH replication attempt.....
     
  7. George

    George Guest

    ???

    Why would the NIH not want the study to be confirmed? They awarded WPI and Dr. Kerr $1.6 million dollars to continue the research. And as you pointed out the CDC is being extra careful by making sure Dr. Reeves name is not attached in any way to the replication study.

    Sorry not picking on you hsv, I just used your quote because it was the most succinctly put.

    I think it maybe more of a case of humans being, humans. Dr. DeFreites had not even completed isolating a virus when the announcement was made at the Japan convention. She didn't know for a fact that her reagent was correct in the first place. It's not surprising that one study was all positive but no one was sure for what and one was negative. The CDC was dealing with the HIV/AIDs problems and a lot of backlash from the community at the time. It could be that the powers that be at the time felt like there just couldn't be two new retrovirus. That would have be a horrible thought at the time. Sometimes humans can't handle things and so they don't choose to see them. We've all be guilty of that, every human is guilty of that in their lives.

    Regarding the XMRV study's they will start trickling in around January at the earliest. There's no need for the researchers to rush if you think about it. The Holidays are coming up and, it's going to take time for the first round of news to make it into the nooks and crannies of the medical profession as well as society. Next year, there will be one study after another, after another, after another until by this time in 2010 everyone you know will be nodding their head as if they knew all along that it was a retrovirus. Their past behavior forgotten. Because that's what we do as humans, we change slowly and we incorporate that change into ourselves forgetting all of the pain we caused others before. If we didn't we couldn't live with ourselves very long.

    _________________________________________

    Hey Mark still working on that question but so far nothing:(

    ___________________________________________________

    Speaking of Holidays, here's wishing all us Americans a Happy Turkey day, and for everyone else take care and take it easy this week.
     
  8. oerganix

    oerganix Senior Member

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    Reeves' dedication to a psychological cause

    I have another possibility in mind for his push for a psychological cause. Could he be receiving income from Big Pharma?

    Somebody else at the national level is or was:

    http://www.ahrp.org/cms/content/view/632/150/
    Another example of hypocrisy and the awards bestowed on stealth marketers:

    {Psychiatrist Dr. Frederic Goodwin, the former director of the National Institute of Mental Health, who is a Research Professor of Psychiatry at The George Washington University and Director of the University's Psychopharmacology Research Center, was the host of an influential, National Public Broadcasting program, The Infinite Mind, an hour long, national weekly public radio program "dedicated to issues relating to the mind, the brain, and mental illness."

    Dr. Goodwin postured as an independent, objective, authoritative scientist, while concealing his extensive financial pharmaceutical ties. Between 2000 and 2007, it was revealed that he earned at least $1.3 million giving marketing lectures for drugmakers, income not mentioned on the program.

    Indeed, he used his considerable influence and publicly funded forum to issue seemingly authoritative statements designed to increase use of psychoactive drugs. His biography posted on his website (2002) states:
    The Infinite Mind is an award winning program "now carried in more than 170 markets. It's estimated 500,000 + listeners make it the most popular health show in public radio." }

    And here is another link to Alliance For Human Research Protection, with a number of stories on fake research and the ghostwriters who profit from it:

    http://www.ahrp.org/cms/index.php?searchword=faked research&option=com_search&Itemid=5
     
  9. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Don't

    I am only now educating myself on the events related to DeFreitas' discovery. After years of people suggesting it, I am just now reading Osler's Web.

    I did notice though that she said the virus she saw, whatever it was, disappeared after six days. I haven't gotten to the part about the other studies that tried to replicate. But I have seen on message boards that they did not do it right (I don't know if it was the cohort choice or not following the testing procedure.)

    Either way, there was a meeting of 75 researchers a couple of weeks ago to discuss collaborations. Dr. Mikovitz is the star now. Don't you know that the WPI folks stressed to all of them that they will not get the same results unless they do the same testing procedure on the patients of the same defined illness.

    And there is motivation for these others (private labs) to get it right. With at least five entities working on it, you don't want yours to be the one that comes up with something different than the others. That reflects a problem on your part. Let's not forget, if someone comes up with something different, they are not only saying WPI was wrong. They are saying NCI and Cleveland Clinic was wrong. The number of clinics involved are working for us this time.

    Thankfully, they put this in another area of CDC.

    I do think for the CDC folks that have been involved with CFS, it is all about damage control. For doctors, researchers, reputation is EVERYTHING. And they are losing theirs. How can they keep it? Right now, if I were them, I would keep my mouth shut and go to work every day and don't do anything on CFS. Hopefully the world will forget how bad I messed up.

    That's why we need to get an investigative reporter in there to tell the story.

    I think we need to remember. The first reported outbreaks, before it appeared in the lay press, was in affluent areas. The only place CDC investigated as a possible outbreak of a new disease was Incline Village. This was an area of mostly 30-50 year olds who has retired early because they were rich. They were ambitious.

    Now, throw in that most of the patients are women.

    The conclusion is that women were being neurotic and psychosomatic. As for the others, well, they were misdiagnosed and had something else wrong with them.

    Then it got into the press, and no one could trust whether the patients after that were really sick or just jumping on the band wagon.

    The only ones that could see what was really happening were those seeing the patients.

    It is like in an army. The men in Washington may hear reports of what is happening in a war, but they are far removed. They may even be told by those on the front lines of incidents. And the generals say, "That's not possible." or "That's highly improbable, I don't think that is the case." And they dismiss what they are told. The generals will draw their own conclusions based on their own paradigms and the evidence they are given. But not being there on the front lines, the evidence they are given will not be given as much weight as their own experience. Where as a commander on the front lines will have much more evidence, daily, to change his preconceived beliefs.

    Tina
     
  10. Samuel

    Samuel Bedbound with NO DOCTOR

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    Can we get the information out there ourselves? A petition? Letters to the editor of every major newspaper?
     
  11. starryeyes

    starryeyes Senior Member

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    Yeah. If only the CAA would do it. :cool:

    I do hope you're right Tina. I like what you have to say and it sounds good.
     
  12. hvs

    hvs Senior Member

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    I don't think you're picking on me, George. I take it for granted that all of your posts are smart and made in good faith.

    I don't think that the NIH is too invested in the outcome of the replication study, but they are using Reeves' worthless definition of CFS and it still remains to be seen if they are using any legitimate XAND sufferers' sample from the WPI, despite the claims of CDC officer at the CFSAC meeting. It's natural that they use their sibling federal agency's definition of CFS. (And, yes, meanwhile they give a nice grant to WPI and Kerr--rationality runs as rampant among large government agencies as it does on Wall Street.)

    I love this statement. It's exactly right. :)
     
  13. Mark

    Mark Acting CEO

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    Benefits of The Doubt

    Well done everyone, brilliant posts even by your high standards, you've all posted such eloquent reassurances that I'm now convinced it's possible it was nothing more than one of the most catastrophic examples of 'contemporary bureaucratic incompetence' of all time. You have convinced me - for now - that the human error theory is credible. You've informed me of a number of confounding factors I either wasn't aware of or hadn't considered, and you've also effectively sketched much of the reasoning that will go into the final report of the eventual investigation, pointing out some valuable lessons along the way that I pray will be learnt.

    So at this point in time I feel much more relaxed that this will indeed be the version of history that will be written - whether it's true or not - because it looks like it can be written that way and the alternatives are so much worse. And all that in turn gives me much more confidence that there will be no need for anyone to whitewash anything. I could easily choose to believe the perfectly plausible theory that while the biomedical researchers were bravely trying to revolutionise human healthcare, military minds were borrowing their tools with incomplete understanding to engineer weaponised mycoplasma, and experimentally spraying it over their fellow countrymen in preparation for its use in their next glorious victory. I've never met such people, and for all I know that's just the sort of thing they would do. But these beliefs are all a matter of personal choice, and for the sake of my own well-being, today I choose to believe in the most human explanation. I still think razors can be dangerous, even if they come with a guarantee from Occam's or Hanlon's, but they are as good a rule of thumb as we have I suppose.

    The explanation still stretched my imagination, only because of the sheer magnitude of the risk that Elaine DeFreitas was trying to alert them to: the retrovirologists who worked on the study knew by now how devastating a retrovirus could be in humans, so surely, surely, surely they should have treated the enormity of the potential threat to humanity with the utmost seriousness, right up until the point where they had fully explained DeFreitas' supposed error. But - thanks only to the help of brilliant friends - I can now see how even the best risk analysis can still fail to save you when the greatest threats of all are multiplied by the most infinitesimally small perceived likelihoods.

    OK: I'll buy the story: they were struggling to deal with the consequences of AIDS, they were an organisation under enormous stress, all their retrovirologists were busy, they figured our little hysteric disease was much less serious because we weren't actually dying and that made it look different to AIDS, they'd already decided we were all nuts anyway, they hated us for hating them for thinking we were all mad, their least experienced people were assigned to CFS because it was so unimportant, they subconsciously feared the loss of their reputations given the path they had committed themselves to, DeFreitas seemed less than certain because she'd been rushed into publication (had her strength already been weakened enough to tip the balance, as XAND began to take hold?), they preferred the more palatable theory that she was jumping on the retroviral bandwagon to the extraordinary 'coincidence' that two new retrovirus could appear from nowhere at practically the same time (explainable, we now know, if both XMRV and AIDS originated from bio-engineered theoretically-non-infectious retrovirus-borne experiments - at the same time and place even, maybe? :eek:), and then, to cap it all, further independent study failed as well (what sick twist of fate explains that final nail in the coffin?) - and as if that weren't enough, President Bush was fully occupied sending troops to the other side of the world to take the infection into overdrive in a traumatic chemical hell.

    I do love long sentences, but maybe, just maybe, in this case none are appropriate, if only because the remorse that will consume those poor people - whose seemingly tiny mistakes 18 years ago were magnified by the gargantuan forces we now toy with (in an age where we are poised to switch on the search for the God Particle secure in the knowledge that whatever and wherever it may be our brightest minds have proved beyond any doubt that the chance that proceeding will fold the multiverse into a singularity is incalculably small) into a monstrosity the scale of which will never be calculable - may be beyond even the greatest psychologists to resolve. Their suicides would doubtless serve only to fuel natural conspiracy theorists like myself and drag us further into the abyss of mutual mistrust, but I shall strive to put such thoughts aside and remember that whoever and wherever we are, however heartless and twisted we may appear, we are after all cut from the same cloth, and we all deserve the benefit of the doubt that despite all appearances to the contrary, we may be sincere, and we may even be right.

    It's a catalogue of disaster beyond words, and it will happen again and worse, because (unless we manage to use this hellish episode to transform ourselves) the lessons won't be learned and we will eventually, somehow, manage to shrug our shoulders, rewrite our individual and shared histories to absolve us of the guilt we can't survive, and carry on as usual, with the same old human weaknesses of complacency, illogicality, and - most culpably - disrespect for those whose plight seems unimportant to us.

    No-one can say whether the next example will be a mutated repeat of the mistakes of the last, in which the power of the techniques of the psychologists grants them victory in their battle to cleanse the XAND from their sophisticated definitions of a separate and subtly different condition (which may even, conceivably, exist much as they describe - and not merely in order to grant them livelihoods at the expense of the sufferers of all ideopathic conditions - in which case they may be no more worthy of condemnation than our own friends and families for their human failure to let our human reality overcome their pre-conceptions), confounding and rendering irrelevant even the forensic dedication of the retrovirologists, re-instating the wall of disbelief that surrounds the XAND, and re-defining the cancerous line that runs through the heart of humanity and separates us from ourselves and each other - no-one can say, because the future is another country, and like the past we can only hope it's true that they do things differently there.
     
  14. fresh_eyes

    fresh_eyes happy to be here

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    Mark x! This is incredible! Publish, publish!
     
  15. Mark

    Mark Acting CEO

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    Thanks fresh_eyes, but I can't take much credit for it, I don't know where it came from really so I think it was a bit of a one-off! But I do know I couldn't have written it without a heck of a lot of help and inspiration from my friends on this forum. I think what I did was synthesise everything everybody said on this thread with Koan's philosophy and my own, and I ended up bringing everyone else's POV in too...wasn't as quick a post as I planned! :)
     
  16. fresh_eyes

    fresh_eyes happy to be here

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    Mark, it's wonderful to have someone on here with your ability to synthesize, articulate, and sum up a discussion in such a heartfelt way. You really add a lot to the conversation. :)
     
  17. hvs

    hvs Senior Member

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    This sounds about right, Mark.

    Remember, legitimate historians protected by tenure and academic freedom can and will write this history. If any evidence comes to light of something more sinister than foolishness, narcissism, stubbornness, anger, etc. etc. at the heart of this disaster, they will publish it.
     
  18. annunziata

    annunziata Senior Member

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    I would just like to add something which, sorry, is anecdotal but does come from impeccably truthful me. It speaks to the matter of whether or not researchers might conceal damning evidence knowing full well how significant it is.

    In the early 90s, a major hospital in NY (not sure if I should name them) did a study of Natural Killer cell activity in CFS patients. I was in this study, and my result was zero, no natural killer cell function at all. I spoke to at least one other patient (one that I remember clearly) who said his test result was also zero. (He and I were both mostly bedridden in those years.) At the time, I was hit by one major infection after another -- pneumonia and tonsillitis nearly killed me. My doctor gave me the original test result and didn't keep a copy. Not long after, my medical records were destroyed in a house fire. When I asked my doctor for another copy of the NK cell test, she gave me a profoundly wry look and said, "The hospital says they've misplaced all the results from that study."
     
  19. usedtobeperkytina

    usedtobeperkytina Senior Member

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    annu

    annu, was this the same place that had Marilyn Monroe's autopsy?

    tina
     
  20. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Mark

    Ok, Mark, that was enjoyable reading, almost poetry.

    But I am a straight talker. At first, I thought you were being sarcastic. But I then saw the sincerity.

    So, basically, are you leaning toward the whole mess being human flaws (ego, competition, unable to understand what you don't see, etc.) instead of sinister intent (corruption because of financial interests or mislead to cover up that the government caused the virus to be in humans)?

    Tina
     

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