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CDC XMRV Retrovirology Study on CFS Published

Discussion in 'XMRV Research and Replication Studies' started by KFG, Jul 1, 2010.

  1. Bob

    Bob

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    In 'Nature' regarding the delayed CDC paper:

    And regarding the NIH/FDA paper:


    http://www.nature.com/news/2010/100702/full/news.2010.332.html?s=news_rss

    http://www.forums.aboutmecfs.org/sh...r-reviewers-want-quot-additional-studies-quot
  2. Francelle

    Francelle Senior Member

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    There are others!

    I preface this with saying that I have not read all the messages in this thread. However, my reaction to this topic is to say that, all well and good the discussion so far, but how do we get the factual information out to the general public regarding the CDC's ineptitude or deception at worst or unwillingness to acknowledge a possible physiological basis for M.E. at best, in an informed & logical way? No good presenting inaccurate and illogical information. In my thinking, a flurry of fuzzily thought-out emails can be dismissed too easily as being engendered by a bunch of whackos (which is precisely how they view us).

    Who would be best targeted for maximum effect with this factual information?

    In the whole scheme of things remember too that there may be several virologists across the globe who would love to be the second in line to produce an honest replication study (assuming no one has so far) of the Reno study. This would be almost as notorious historically, as the original study. Don't underestimate Sweden, Belguim, Canada, Australia, New Zealand and others. Many medical discoveries are made by scientists world wide and these become 'best practice' models globally.

    I know the CDC may feel that they have the trump card to hold the truth from revealing itself for another 20 years but this is a new age where less can be concealed from the 'mindless public' and so in time I believe the truth will be revealed - sooner rather than later, so take heart one and all!
  3. Angela Kennedy

    Angela Kennedy *****

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    For those with optimism that good science will prevail, that the evidence for XMRV in CFS will win out, I'm very sorry to have to say you should go and look at the thread on XMRV and the WPI at Bad Science.
  4. VillageLife

    VillageLife Senior Member

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    Lucinda Batemans webinar Is Thursday the 15th of July. She's ment to be giving an update about xmrv.
    To be honest I think there maybe information about something positive before she does her talk. Otherwise hearing her talk about 5 negative studies is going to be up setting and boring- so I think there maybe something out before dr batemans talk.
  5. judderwocky

    judderwocky Senior Member

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    please sign the petition

    the petition has been carefully worded... while it does imply the DHHS is at fault... all it actually assumes is that regardless of which branch instituted the new "procedures" it assumes, that the DHHS can supersede them. it hints at tampering, but is not actually explicit. it also targets all agencies involved and asks for our elected officials to intervene.

    it is appropriately measured in my opinion.

    I used to be a community organizer. I organized and wrote campaigns for the HRC and Planned Parenthood. They too have to be very "careful" about the way they word things.

    WE NEED A COLLECTIVE SHOW OF FORCE RIGHT NOW. WE NEED CAREFULLY WORDED STATEMENTS TO BAIT POLITICIANS INTO GETTING INVOLVED.

    if we cannot show we are organized, we make ourselves vulnerable to getting pushed around.
    If you have not done so. Please sign the petition.


    Petition Text:

    I am writing today to request your action on a public health concern. Recently a link has been found to the debilitating disease Chronic Fatigue Syndrome (CFS), and a retrovirus, X-MRV. X-MRV has also been implicated by recent research in the development of aggressive prostate cancer. Since the original findings published in the prestigious journal Science, several groups have produced conflicting results. The Wall Street Journal has reported however, that the NIH and FDA were able to confirm the findings (underneath the direction of the NIH scientist who discovered the Hepatitis C virus, Harvey Alter). The Wall Street Journal has also reported the studies are being WITHHELD and subjected to additional tests due to the failure of the CDC to come to similar conclusions. No statement has been made as to the extent or nature of these additional procedures and tests.

    Tell the DHHS to allow the NIH and FDA to publish their papers without undue procedures and hurdles. Preventing these papers from being published diminishes the trust of CFS Patient groups in the CDC and its willingness to deal honestly with this disease. To allow CFS patients and those with Prostate Cancer the best hope of fighting their illness, we must have the best scientific information that our government is capable of producing. Allow the findings to be released with all speed and tell the DHHS to stop playing politics with science.

    Thank You,
  6. Bob

    Bob

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    Hi Angela,
    Have you got a link for that?
  7. Sam Carter

    Sam Carter Guest

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  8. Bob

    Bob

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    Thanks Sam.

    Angela, I just had a look at the website and, unless I've missed something, it just seems to be discussion between lay people... some of it is very cynical... I don't think that's a reason to be pessimistic, in itself. Not everyone is as eager for, or interested in, the XMRV research as we are. I'm going to continue to be cautiously optimistic... for my own peace of mind... But that doesn't mean that I'm not going to have a lot of cynicism about the establishment, and question their methods and politics.
  9. liverock

    liverock Senior Member

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    http://www.meassociation.org.uk/ind...-school-10-june-2010&catid=30:news&Itemid=161

    One worrying aspect even if XMRV is validated, is whether the present anti-retroviral drugs would be effective against XMRV.

    The Newcastle Medical School Conference revealed that AZT whilst stopping the HIV replication, did not lessen fatigue in AIDS patients and in fact anti-retroviral drugs destroyed mitochondria.:worried:

    It would be a real bummer if XMRV was validated and we had to wait for a completely new group of anti-retroviral or immune modulating drugs to be researched and developed because the present drugs were useless.:(



    I just hope those who have opted to 'jump the gun' and try AZT are aware of the possible consequences.
  10. floydguy

    floydguy Senior Member

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    It just looks like the UK equivalent of Quack Watch. Nothing to see there.
  11. judderwocky

    judderwocky Senior Member

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    I find it shocking that this article uses the word "strategic"... i worked in a bunch of labs...

    in high school i was selected for a science program that paired students with scientists and I disected rat brains and conducted experiments on their auditory system - that was at UF Brain Institute. in college i worked for the Blakely lab at Vandy... they worked parkinson's research... i eventually moved on to physics and worked in a lab used lasers for surgery (The worlds strongest Free Electron Laser was turned in a giant scalpel) and then eventually to the PHENIX collaboration... a worldwide consortium of scientists thats investigating new states of matter in high energy collisions. i ended up staying in physics and plan on going back (if my health ever improves).

    its funny... i can NEVER remember the words "strategic" being used to describe the publishing procedures for any of the studies i was a part of. one of the articles the PHENIX lab went through was published in science... the review process lasted months and literally involved hundreds of phone calls in a number of different languages (translators committees... blah blah blah.) I sat in on a lot of this... NEVER heard the word "strategic" used about the findings.

    Where did the CDC learn this dirty word?
  12. Mithriel

    Mithriel Senior Member

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    For decades, every time we seem to be getting somewhere, an "expert" is brought in who pulls everything back to the view that CFS is somatisation. The psyches have also managed to accumulate lots of "evidence" backing their point of view by the careful use of themselves as "peer reviewers" so that very dodgy studies are published in places that should know better.

    This latest debacle smacks of more of the same.

    My worry is that the peer reviewer who demanded extra work was someone like Jones of the CDC - independent? what are you trying to say - or even our old friend PDW.

    Exactly what extra work needs to be done? Sequence the virus? Use an extra method of detection? The most likely would be to include samples from people diagnosed by the CDC since "use of the CCC is only giving a result from a subset of CFS".

    The outcome of that will be more negative cases of CFS. People with the revised definition of CFS are only likely to have XMRV at the control levels.

    When included within the numbers it will dilute the association of XMRV and CFS. The closer the numbers get to the control level the easier it is to dismiss XMRV as a passenger virus not a disease causing one. Panic over.

    I hope to be found wrong.

    Mithriel
  13. judderwocky

    judderwocky Senior Member

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    Lol... well... without sounding offensive... a HUGE number of scientists that i worked with have made comments that psychology is not a real science.... its like theology... theologians sit around and review eachother's work all the time... doesn't make it science. The problem is that psychology is qualitative and not quantitative. They simply cannot get around that impass. ... Oh they exert a huge amount of energy and mental gymnastics convincing themselves that their procedures remove this ... but it doesn't.
  14. judderwocky

    judderwocky Senior Member

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    The issue here is a lot of what Foucault talks about in his bio power books... psychology has been influenced strongly in the last few years by waning power in this scientific community... they gained an enormous amount of power previously through their "medicalization of sexuality" .... he traces the modern psychological counselling practice to the monastic confessional system. he argues that as religious power began to trail off in teh modern era, psychology began to fill a sort of power vacuum... as sexuality became increasingly "medicalized" and turned in a medical phenomenon ... he argues that they needed this developing field in order to stay relevant.. unable to produce the kind of results other developing scientific fields were able to, they began to rely on a sort of conditioned mysticism and grey area that had accumulated between the realm of science , the body, and the mind... the work of freud for instance is focused largely on what he saw as sexual developmental issues in the development of those with mental disorders... people with OCD were said to have all sorts of repressed feelings.... they relied on these vague areas to assert themselves as a legitimate field... but then slowly a lot of this was dis proven... modern psychology has attempted to fill in these gaps but increasingly the gaps are filled in with biological information... schizophrenia is a chemical condition... people are depressed because they lack serotonin ...etc... psychoanalysis, and soon i believe CBT will be found to be increasingly irrelevant.
    OCD mice are now being treated ... and cured... with bone marrow transplants.... one nail in the coffin at at time.
    unfortunately real science has dealt a pretty harsh blow to modern psychology.
    the problem is that they have begun to lose power ... many disorders have been turned into biological conditions and NOT issues of somatization... increasingly
    they have had to find new areas that they can assert themselves as real scientists... psychosomatic disorders are just the next phase...

    For the last 30 years or so, they were able to pass off CFS as an exotic psychological disorder. They are kicking and screaming because this will be a death knell for their field.

    over the last 30 years they have nearly doubled the number of registered psychological disorders... they have had to rely on invention ... of the mind.

    (btw... yes... this is abridged Foucault and i did butcher it... but the main points are still pretty close... excuse the brain fog)

    furthermore look at a psychological study and note the way they confirm that various "forms" of cbt are distinct... notice the way they "confirm" that the treatment was delivered was effective... it inevitably relies on qualitative measurements of "how many distinctly new techniques were relayed to the subject"... these are INHERENTLY relative terms. ... subjective... qualitative....

    conflicting studies... have shown that CBT is only as good as the relationship the psychologist builds with patient... suggesting it has nothing to do with the actual CBT and more about providing a diluted form of companionship.
  15. Angela Kennedy

    Angela Kennedy *****

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    The issue is how this 'cynicism' is one sided- mostly about the WPI, and Judy Mikovits. Also about how patients are being portrayed. Also about all the 'negatives' with very little concern for the huge problems in the 'science' of those studies. And about how 'CFS' is merely a side issue (an unimportant one) in the subject of XMRV. This is a snapshot of how people claiming to be 'scientific' are nevertheless engaging in trivialisation and misrepresentation of CFS sufferers and the likes of Mikovits.

    I'm not saying we should engage with the BSers: far from it. But we need to be aware of how the common trend of trivialisation of the concerns of 'CFS'ers, and the acceptance of travesties of science can happen easily, in people not even 'interested' (!) . i don't think people can afford to be 'optimistic' yet, if at all. We need to be thinking how are we going to counter all this? Not 'everything will be fine': while the repeated misrepresentations of the 'science', and attacks on CFS advocates and their concerns, and ignoring of the highly relevant rational analysis of the 'science' which tends to only happen on informal patient forums, but will be ignored in the popular press and never published in academic journals, is relentless.

    Bob, as a relatively recent? PR forum member, you may not be aware of the BSers treatment of people on this forum in the recent past, or of Bad Sciencers' blind spots of 'skepticism' when it comes to the mystical power of the mind over the body (woooooo)... the comments on that forum are relevant to previous behaviour and attitudes towards CFSers.
  16. VillageLife

    VillageLife Senior Member

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  17. judderwocky

    judderwocky Senior Member

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    ... maybe they should start using the word "strategery" instead of "strategy"
  18. VillageLife

    VillageLife Senior Member

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    I think Science & Nature journals are appalled by these events and the governments shouldnt ever be aloud to step in on science again!!
  19. Levi

    Levi Senior Member

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    Strategic is as Stategic does . . .

    I am consistently amazed at how the general CFS/ME communities have allowed the Wesseley/Reeves/CDC cabal paint them into a corner on CFS/ME XMRV research. We seem to think its all about us. Its not.

    Instead of firing off emotional letters to researchers and bureaucrats, we should be organizing and reaching out to our natural allies in this mess; the prostate cancer community. They are big and they are strong and well organized. There is no issue that prostate cancer is all in your head. They are being spit on by all of these Zero/Zero studies too. It is curtailing funding into much needed research for them. They understand the public health consequences of shoddy research intended to supress the CFS/ME contingent:
    http://www.medindia.net/news/Correlation-Between-XMRV-and-Prostate-Cancer-Confirmed-67372-1.htm

    Why is there no designated liason in the CFIDS/CFS/ME organizations to prostate cancer organizations? XMRV causes cancer in mice, that is established. It might also cause cancer in humans. Thats a big deal to the public, much more important than a small group of disorganised but vocal "tired people".

    And publicly threatening to donate blood is about to most counter-productive plan you could imagine:

    http://www.microbeworld.org/index.php?option=com_jlibrary&view=article&id=3925

    Please don't go there.
  20. Simple, they're not real scientists.

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