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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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CDC XMRV Retrovirology Study on CFS Published

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

  1. glenp

    glenp "and this too shall pass"

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    here is a link to it

    http://www.cdc.gov/ncidod/dhqp/bp_xmrv_overview.html#

    The abstract has been posted if you want i can find it or if someone has it handy pleez post -- i had the list for cohurts too
  2. muffin

    muffin Senior Member

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    Kelly: So we are back at Reeves again? I thought that when the study was being done Reeves was supposed to stay far away from it so as not to create the issues that we are now seeing with his name on any Replication study. HE picked the patient samples? Why did they let him do that? Also, did I make this up or wasn't a WPI person supposed to be there at the CDC while the Rep study was being done to ensure that the methodology, etc was done according to WPI's methodology?

    Why would the CDC be so stupid as to let Reeves anywhere near this Replication study?? Your insights are invaluable. Miss you Kelly!! Hugs - Muffin
    ------------------------------------------------------------------------------------------------------------------------------------------------------------------
    Reeves not the whole CDC team


    Originally Posted by muffin
    "This has nothing to do whether the CDC had the correct cohort/mythology...they didn't want to find it....Bill Reeves name at the top of the page should emphasize that."

    ME: "Disregard anything from the CDC on CFIDS, XMRV and everything else!

    Kelly Said: While I would never argue with Muffin, this seems like a good time to make the following point. Dr. Reeves, not the retrovirology team at the CDC, chose the patient samples that were tested.

    As noted by Dr. Vernon, the labs that did the testing were top labs just as the labs were in Lombardi et al. And they used standard testing, but not the exact same testing as done in Lombardi et al. So direct the anger appropriately."
  3. Sean

    Sean Senior Member

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    glenp

    You originally said

    (My highlighting)

    In the link you posted I can find nothing that says the +ve study (presumably you mean the Alter study) is being counted as a -ve study. In fact the Alter study is not mentioned at all, as far as I can see.

    Maybe I missed something (I do have increasing trouble with reading).

    Furthermore, the CDC clearly acknowledge that their paper is not the final word on XMRV in CFS:

    Which suggests to me that they are getting nervous about their own position, and starting to hedge their bets.
  4. judderwocky

    judderwocky Senior Member

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    Think of it this way... if Reeves had been moved out of sight we would not have this opportunity to expose him.

    They know whats coming. They know the scientific community is upset and finds this unethical. He is right in the middle of it.

    please help me link the petition on other blogs...each signature now goes to all the heads of these organizations
  5. glenp

    glenp "and this too shall pass"

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    Sean in the link I posted above

    On July 1, 2010, CDC researchers and colleagues from two institutions reported results of a study in which they found no evidence of infection with xenotropic murine leukemia virus-related virus (XMRV) among patients with chronic fatigue syndrome (CFS),
  6. julius

    julius Watchoo lookin' at?

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    Glen, there were three labs involved in the CDC study. Kind of like the WPI study. That's all. There's nothing to do with the FDA/NIH study.
  7. Sean

    Sean Senior Member

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    Agree strongly with that.

    If you want to piss off the general public and lose whatever support we currently have from them, split the patient community, alienate many sympathetic clinicians and researchers, and play right into the hands of the psych lobby... Then that tactic is a very good way of going about it.

    Rightly or wrongly, you will also probably be classed as 'terrorists'. And we all know what that means these days.

    On the other hand, it is a good tactic to ask pointed public questions of the CDC (and HHS, etc) about whether they are prepared to say if donating blood is okay. Pin them down and force them to give a clear answer. If they say it is okay, then they are taking a huge risk for public health, and have to explain why they are dismissing the +ve papers, and not exercising due caution. If they say it is not okay, then they have to explain why they are dismissing the -ve papers, including their own, and will also have to explain their history of psychologising ME/CFS, and will have to seriously change the direction of the CDC research effort.
  8. Sean

    Sean Senior Member

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    You are reading something into those words that is just not there. They have not buried or misrepresented the Alter paper. They have not even mentioned it.

    There are plenty of real and important issues on which to legitimately criticise and oppose the CDC. This is not one of them.
  9. srmny

    srmny

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    "revised" Fudaka?

    I looked at the CDC abstract quickly and I am pretty certain that it says the study is using "revised" 1994 Fudaka. Isn't that just the Reeve's definition? That makes sense since the paper is saying that by virtue of having physical symptoms we do not have CFS.

    But on the CDC website they are only saying 1994 Fudaka criteria. As I see it, that is dishonest. A quick read of the CDC website left me with the impression that they think they have settled the issue. I think they are trying to bury any connection between CFS and XMRV. I also remember reading that this CDC study would have no association with the Reeves branch of the CDC. Of course Reeves is all over it although I believe the submission date was after he "left" the CDC. I imagine submission dates can be long after the study is finished but I am convinced he is still calling the shots at the CDC.

    I think I am going to write a letter tomorrow to HHS and lay out the history of CFS, CDC, Reeves, Osler's Web etc. It seems like from observing every branch of our government the right hand does not know what the left hand is doing. I also think we are seeing a scenario similar to the lobbyists protecting the banks and screwing the tax payer. We now see insurance interests doing the same thing with us. I just never thought they would be this brazen! It is hard to believe I am still this naive...
  10. glenp

    glenp "and this too shall pass"

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    ty srmmy---its beyond me. I can only write short blurbs. Tg my brain is working well enough to see what they are trying to do or shall I say hide

    glen
  11. floydguy

    floydguy Senior Member

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    Perhaps. But remember this is a public board and people with other interests/beliefs can easily take a "joke" out of context and report it elsewhere as if it was a serious statement. It may be beating a dead horse but it only takes one comment out of thousand to be displayed prominently elsewhere to destroy credibility and/or support. Out of college I worked in the public policy arena and we were constantly reminded not to put in writing something that you didn't want to read the next day in the New York Times. Something to keep in mind...
  12. Esther12

    Esther12 Senior Member

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    I don't think you should feel bad.

    It's a difficult time for all of us, so sometimes we'll say silly things to let off steam. We're only human.
  13. Bob

    Bob

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    I can vouch for 'sickofcfs' and confirm that she totally apologised, explained her mistake and where she was coming from, and deleted her original message very quickly... and felt bad about it... and was very apologetic about it... She couldn't have done more... And to be clear about it, her original comment wasn't serious... it was satirical, or ironic... using irony to make sense of the situation.

    Don't worry about it, sickofcfs, people don't always read all of the posts, and people come late to the threads...
    You don't need to defend yourself anymore... all is forgiven!

    Take care,
    Bob :Retro smile:
  14. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Kelly,

    Muffin is 100% correct. Heneine is in the retrovirology lab and he's the one who screwed up the DeFreitas rv 'replication effort'. These people are relentless in their war on us and the science. they have 0% credibility.
  15. Daffodil

    Daffodil Senior Member

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    instead of working on treatments for the sick, they are wasting precious time some of us don't have. they are lucky we dont have the energy to be violent.
  16. Megan

    Megan Senior Member

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    CDC press release

    I think Sean picked the most important point in the CDC press release. They are certainnly hedging there bets here...."much remains to be learned about this and related viruses"...."new findings might emerge that differ from those reported in the Retrovirology". Perhaps most interestingly they have referred to "related viruses" and "similar viruses". This is intriguing and almost certainly a 'nod' to the Alter paper (and perhaps other research behind the scenes). Alter clearly referred to other MLV related viruses in his Zagreb presentation. Who knows, they may all declare themselves winners in the end with there being a different XMRV strain or MLV related virus that is not exactly XMRV.
  17. alex3619

    alex3619 Senior Member

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    Hi Megan,

    This raises an interesting possibility. Maybe the issue with the Alter paper was the different strains. Maybe the CDC cohort is being checked to see if they aren't infected with a standard XMRV but some MLV. This is a bit of a reach, but we don't know the full details of what strains of virus were found - the only problem is that I think this should have delayed the CDC paper not the Alter paper. If Alter is checking for XRMV in the CDC cohort, and also can't find any, then we can be fairly sure the blood samples have something wrong with them.

    Bye
    Alex
  18. Megan

    Megan Senior Member

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    Alex, that is a very iteresting idea. But I am wondering where this idea came from that Alter would be testing CDC cohort samples? If anyone has a reliable reference to this can they post it?

    For precisely the reason you have suggested, I would have thought this would have held up the CDC paper not the NIH one. Surely 'further experiments' on the NIH paper means further experiments on the Alter cohort? Logically I would have thought that other tests, maybe by other people, are occurring on the Alter samples.
  19. alex3619

    alex3619 Senior Member

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    Hi Megan

    Everyone is still guessing about most of this, including what Dr. Alter is actually testing. Bye, Alex

  20. Bob

    Bob

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    I have a theory... or a proposition... and this is me being optimistic again... so please bear with me...

    I think that this CDC study is a juncture, or a turning point, for ME/CFS... i think it marks a parting of the ways...
    The CDC study is so exceptionally cynical... Getting their patients through a telephone survey to find almost normally functioning people who happen to be a bit tired and who fit into the CDC's CFS definition of choice... It's as cynical as you can hope to find in CFS research...

    I think that this is a desperate attempt of the old school CDC to save face... and it might work for that purpose... but only that purpose, as far as i can see... And in the long run, I think that even this will back fire on them because they clearly are unable to detect XMRV. Period.

    So what they have done is to recruit some tired people who clearly don't have ME, otherwise they would have been diagnosed with CFS by their family doctors...
    Now the CDC can declare that the 'CFS' that they've always defined, and worked with, is different and separate to the 'cohorts' that the WPI is working with, which is normal CFS/ME, as we know it...
    This allows them to save face by saying that there are different types of ME/CFS... different cohorts, or subsets, and that is why they never discovered XMRV in their cohorts.

    So I believe that this might be the start of the journey where we all wave goodbye to the CFS label... which the old-school CDC employees can keep for themselves... and it's where we get a new illness called something like XAND, and we all get taken seriously.

    Obviously this is a bit simplistic because not all of us are going to get tested XMRV +ve, but my own expectation is that a vast majority of us will turn out to be XMRV +ve... but i'm just guessing here.

    I'm usually a massive cynic and a skeptic...
    and I know that certain elements within the CDC would like to bury this XMRV research... And history tells us that the CDC is our enemy...
    But this is bigger than the CDC now... in my opinion it's unstoppable... How can they bury a retro-virus in this day and age?! It would be like trying to cover up HIV. I think it would be impossible, especially in these times when we have the internet... news doesn't easily get buried.

    Just my thoughts... I know not everyone shares my optimism.


    UPDATE:
    I've just read through another thread on this subject and I see that another poster expressed similar thoughts before I posted this message, so I'm giving a link to the other post:
    http://www.forums.aboutmecfs.org/sh...Not-to-Find-XMRV&p=98840&viewfull=1#post98840

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