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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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NIH/FDA XMRV Paper by Dr. Alter Out!

Discussion in 'XMRV Research and Replication Studies' started by Esther12, Aug 23, 2010.

  1. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    Am I the only one who thinks the FDA have made a number of digs at the CDC, which possibly infers some rankling over interference. Just to highlight a few of the blatant incidents:

    In the paper
    naming CFS1, CFS2 etc,

    In the teleconference
    several time the moderator appeared to deliberately embarrass the CDC's Dr Monroe
  2. Andrew

    Andrew Senior Member

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  3. John Leslie

    John Leslie

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    I am finished for awhile. The work of the WPI is confirmed (Alter said as much in the press conference) and the press doesn't or won't get it right. I am so disappointed.
  4. Recovery Soon

    Recovery Soon Senior Member

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    I think the scientific community gets it loud and clear. Don't get discouraged. This is a great day.
  5. urbantravels

    urbantravels disjecta membra

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    Don't forget that the scientific community was *already* charging ahead with multiple new studies before today. They weren't waiting for these results to see whether this subject was worth their attention.

    We'll be hearing so much more very soon - Mikovits on XMRV in the UK, Ila Singh's work, the NIH study of the Lyndonville patients. The NIH workshop is going to be chock full of interesting discussions - arguments, too. And that's just two weeks away!

    The press will get it eventually, because the interest is out there. And the scientific community is NOT taking their cues from the popular press.
  6. alex3619

    alex3619 Senior Member

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    Hi sunshine, just to be clear, this was asleeps link, I just emphasised that it is the full paper. Asleep deserves the credit. Bye, Alex
  7. Snow Leopard

    Snow Leopard Senior Member

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    I am a bit shocked or disappointed that they didn't explicitly find "XMRV". This paper doesn't settle the debate unfortunately.

    Also note the new wording on the VIPDx site regarding the serology test. ;)
  8. alex3619

    alex3619 Senior Member

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    limerick with apologies to tradition

    Hi,

    I have been thinking that nursery rhymes have dark edges and were used to spread propaganda - you can hardly complain about a kids rhyme, can you? With that in mind, here is a recognisable limerick, with some hard-edged political commentary added:

    The other day up in our lair,
    We sought a germ, it wasn't there,
    It wasn't there again today,
    Sweet Reeves why wont it go away?

    Bye
    Alex
  9. Sean

    Sean Senior Member

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    Agree. He knows what he is doing.
  10. LJS

    LJS Insert Witty Comment Here

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  11. alex3619

    alex3619 Senior Member

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    Hi Mark,

    Or to put it another way: if it quacks like a duck, it looks like a duck, and it acts like a duck it probably is a duck. Just beware of caveats: it is only possible it is a duck and maybe we just want to think its a duck - some people will still want to push that line. Bye, Alex
  12. alex3619

    alex3619 Senior Member

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    Hi anciedaze

    I came to this conclusion some time ago - it is information warfare. The lines are drawn, and now it comes down to not just pitch battles but a slow attrition of the position of the enemy until they are forced to give in or reach a compromise. Beware of compromises, the CDC may want to give us this battle and still claim CFS as their own.

    Bye, Alex
  13. Sean

    Sean Senior Member

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    Yes, it was always unrealistic to think that would happen.

    Agree. We have waited a long, long time for this day. Try to find least a little pleasure in what is possibly the most important day so far in the history of this disorder, and don't spoil it for the rest of us. Just for one day. Please?
  14. Sean

    Sean Senior Member

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    Doggy Dude, it has been less than 24 hours since the paper was published. It will take a while for the media (and everybody else, including us) to grapple with the subtleties and implications of this very complicated and profound development. :cool:
  15. alex3619

    alex3619 Senior Member

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    Hi

    It is looking more and more that CFS is one disease with mutiple causes - different or variant MLVs. It is even possible that most of the patients diagnosed with even dodgy CFS (Oxford, Empiric) just have less virulent virus versions. Don't forget that the evidence for efficacy of CBT/GET are that they make patients worse. Even under dodgy definitions, if you count drop outs as failures (sometimes over half the patients), most of these studies have a failure rate in patients approaching 100%. Not a ringing endorsement of CBT/GET, and it just might have something to do with exercise causing retrovirus replication and a worsening of infection. Just maybe....

    Bye
    Alex
  16. Rrrr

    Rrrr Senior Member

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    this seems like the key question. why would the PNAS editor ask for this otherwise?
  17. alex3619

    alex3619 Senior Member

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    Hi

    Proving integration cannot prove causation. It can only prove retroviral infection to near 100% certainty, with zero chance of contamination issues. If, however, integration is in critical locations, then it could prove physiological interference by the virus and we would be one step close to proving cancer links and other issues. Bye, Alex
  18. Doogle

    Doogle Senior Member

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    It seems incredibly improbable to me that finding the virus in about 85% of patients and in only 7% of healthy controls at this stage that the virus wouldn't be pathogenic in the illness. I don't believe they had that strong a linkage for HIV when they declared that they had found the cause of AIDS.
  19. Cort

    Cort Phoenix Rising Founder

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    As I remember the WPI sequenced the full genome of the virus twice. I think the Lo/Alter group amplified the gag sequence of 21 samples. So the WPI did more complete work but on fewer samples. That is my recollection.
  20. Cort

    Cort Phoenix Rising Founder

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    I think she must be right and the Alter study goes along way to proving the existence of retroviruses in ME/CFS but the initial WPI paper used gag sequences from XMRV from prostate cancer tissues - just as everyone else did. I looked at almost all the papers, positive and negative, and they all looked for the same gag sequences. Basically, my take is that its not their fault - there was no indication in the original paper that that was necessary.

    Somewhere along the line the WPI became focused on culturing; on taking cells from patients and culturing them. THey did that in the original paper but that was not the central finding - the central finding was that they found gag (and env) sequences synonymous iwth MLVs. THey then did the phylogenetic analysis and discovered they had found XMRV.

    For whatever reason when Alter and Lo looked for those gag sequences they finally found them where others had failed. I' don't think anybody knows why yet.

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