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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. Lesley

    Lesley Senior Member

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    CBS,

    The portion you have quoted may be the big news in this study. For all practical purposes, they have acknowledged that none of the CDC research applies to those of us with CCC-defined CFS. And I would argue that that applies to all the past research as well. Wow!
  2. eric_s

    eric_s Senior Member

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    Now we will have to wait for Dr. Alter's study. I would like to see it as quickly as possible, but of course quality is more important than speed.
    If it turns into a negative study, then i want to see a very good explanation. Else, i will have a hard time understanding what's going on.
    I couldn't believe that anyone involved wants to suppress the truth. And even if some wanted to, they would know that it is impossible.
    It all just does not make sense.
    I can't wait for those other positive studies.

    But either way, the situation is still the same, we will know sooner or later. As soon as there is a reliable test for XMRV we can just go and take it. Even in the worst case, if from now on there would not be any validation of the Science study. And that XMRV test is very likely to come, because of the possible connection with prostate cancer.
    And even if that possible connection would be "proven" to not exist and the interest would fade away, we are at least 1 to 2 million. We can easily raise the necessary money to have the research done. 1 million * 100 USD. That should be enough, shouldn't it? Then it will just be a question of how well we can organize.

    I also don't think it's helpful to bombard Dr. Alter with individual emails. It might just anger him. I think it must be bundled in some way. Where are organizations like the CAA now? It's their job to talk to scientists, governments etc. I hope they will demand answers and not stop before they know what's up.
  3. CBS

    CBS Senior Member

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    A. They aren't interested
    B. It's not in their interest to be more interested.
  4. anne

    anne Guest

    Seriously.....WTF?????
  5. Bob

    Bob

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    Yes, a firm acknowledgement of subsets of ME/CFS by the CDC would indeed be some progress... even if it's only because they were backed into a corner by the amassing evidence.
  6. Esther12

    Esther12 Senior Member

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    Maybe they have found an explanaiot for the positive studies which means they were wrong? Strange this happened on the NIH site when they're meant to have done a positive study.
  7. pollycbr125

    pollycbr125 Senior Member

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    I dont know about anyone else but im just getting more and more confused by the second :confused: this is not helping patients in any way whatsoever . We need official statements from all agencies / scientists involved ASAP :Retro mad:
  8. bullybeef

    bullybeef Senior Member

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    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.

    If Alter's rewrite is contrary to what he said previously, then we are in trouble. It means, he has now decided not to find the virus. They are using science to not prove something, rather than the other way round. Although we knew the CDC paper would be negative, I certainly didn't believe a scientist would pull his own paper, and decide to rewrite it. If he then submits a negative paper, the journal should tell him to shove it!!! This is mass genocide!!
  9. muffin

    muffin Senior Member

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    Esther12: I hope you did not read my mistake post that I just deleted on the NIH XMRV study. The website http://www.nih.gov/researchmatters/october2009/10192009cfs.htm on XMRV is still there. I messed up.
    NIH has not removed the XMRV findings by WPI. Sorry about this...

    October 19, 2009

    Virus Linked to Chronic Fatigue Syndrome
    Scientists have detected the DNA of a retrovirus in the blood of patients with chronic fatigue syndrome. The discovery raises the possibility that the virus may be a contributing factor in chronic fatigue syndrome.


    XMRV virus particles seen by transmission electron microscopy. Image courtesy of University of Utah Health Sciences Public Affairs.Chronic fatigue syndrome, or CFS, is a debilitating disease that affects millions of people in the United States. It's characterized by profound fatigue that doesn't improve with bed rest and can be exacerbated or re-kindled by physical or mental activity. A number of other symptoms are also associated with CFS, including cognitive deficits, impaired sleep, myalgia, arthralgia, headache, gastrointestinal symptoms and tender lymph nodes.

    No specific cause for CFS has yet been identified. However, patients with CFS are known to have some abnormalities in their immune system. Recently, scientists found evidence of a virus called xenotropic murine leukemia virus-related virus, or XMRV, in the tumors of patients with prostate cancer. Some patients with XMRV-positive prostate cancer were reported to have a specific immune system defect that was also seen in CFS patients. Suspecting a link between the virus and CFS, a team of scientists from the Whittemore Peterson Institute at the University of Nevada, NIH's National Cancer Institute (NCI) and the Cleveland Clinic set out to look for the virus in blood samples.

    The scientists identified DNA from XMRV in the blood cells of 68 of 101 (67%) CFS patients, as reported in the online edition of Science on October 8, 2009. In contrast, the blood of only 8 out of 218 healthy people (3.7%) contained XMRV. Blood cells not only contained XMRV DNA, but also expressed XMRV proteins and produced infectious viral particles.

    The researchers also found that XMRV stimulates immune responses in people with CFS. Plasma from 9 out of 18 CFS patients infected with XMRV reacted with a viral protein, whereas none of the plasma from 7 healthy donors showed a reaction.

    "These compelling data allow the development of a hypothesis concerning a cause of this complex and misunderstood disease, since retroviruses are a known cause of neurodegenerative diseases and cancer in man," says Dr. Francis Ruscetti of NCI, who worked on the project.

    Retroviruses like XMRV have also been shown to activate a number of other latent viruses. This could explain why so many different viruses, such as Epstein-Barr virus, have been associated with CFS.

    The researchers cautioned, however, that while this study found an association between XMRV and CFS, further work will be needed to determine whether XMRV truly contributes to the development of CFS.

    "The discovery of XMRV in 2 major diseases, prostate cancer and now chronic fatigue syndrome, is very exciting," says Dr. Robert H. Silverman, a co-author at the Cleveland Clinic. If a role for XMRV is established, there could be new opportunities for prevention and treatment of these diseases.

    Related Links:
    Chronic fatigue syndrome:
    http://orwh.od.nih.gov/cfs/aboutcfs.html
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  10. taniaaust1

    taniaaust1 Senior Member

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    Well then... what on earth do they call the illness people in America have who fit the Canadian defination?? Have they even then got a name for that illness, or does it mean that no one in America has the same illness those in Canada have? lol . If scientific communities are going to use this kind of excuse, it may be a good time for people to push in getting CFS recognised by the Canadian defination (or both types recognised in America.. the subgroups need to be broken down more).

    How can it even be counted as a replica study if ones with completely different illnesses are being used :p .
  11. Esther12

    Esther12 Senior Member

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    That would be really helpful.

    Trying to do things behind closed doors does not work when you've got interested parites chasing down every scrap of information. There are always going to be leaks, and with the internet these leaks get circulated far more easily than ever before. The old ways of doing things no longer work in the way they did.
  12. jspotila

    jspotila Senior Member

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    From CAA Facebook page

    These quotes were posted to the Association's FB page this morning:

  13. muffin

    muffin Senior Member

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    Bullybeef is correct: WILLIAM REEVES NAME IS ON THE STUDY.

    "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."

    When I saw Reeves name on the study I figured they just went back to the first stupid paper they pushed out the door and re-printed that one. If you see REEVES name on any CFIDS study, disregard.

    Very stupid of the CDC to have even put Reeves name on this document. Everyone knows what he thinks about CFS and XMRV -- he already told the world that he thought the WPI XMRV did not exist. So there's his name. That just solidifies what we already know about the CDC study. They were NOT going to find XMRV even if it jumped up into their faces and planted a big, wet kiss on them.

    Disregard anything from the CDC on CFIDS, XMRV and everything else!
  14. Esther12

    Esther12 Senior Member

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    There are some funny bits in that paper.

    'The WPI seemed to be studying seriously ill people, and this has unfortunately skewed their results.'
  15. hvs

    hvs Senior Member

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    Will media uncritically report this?

    Gotta guess the media will simply report (at the very least in headlines) that "the CDC dismisses XMRV-cfs connection."

    Will the best-case scenario occur and NIH/FDA study come out today, too?
  16. anciendaze

    anciendaze Senior Member

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    This is a good question. If you exclude people -- not simply with evidence of infection, but with any physical condition -- you automatically define the illness as purely psychological. (Incidentally, what does that mean? Schizophrenics show physical signs of neurological problems. Brain mapping of active schizophenia looks distinctively different. Should we exclude these from psychiatrists' care? Should we suspect schizophrenia is transmissible?)
  17. taniaaust1

    taniaaust1 Senior Member

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    lol.. good comment.
  18. thegodofpleasure

    thegodofpleasure Player in a Greek Tragedy

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    CBS is right on the money here.
    It is testament to the CDC's apparently desperate desire to bury any notion of a link between CFS/ME and XMRV that they :
    1. Conduct a study with the objective of studying XMRV in a certain cohort v's healthy controls
    2. Find no evidence of XMRV at all
    3. Leap to the conclusion that there is no association between XMRV and CFS/ME
    4. Don't examine the alternative explanations for their findings.

    This strikes me as amateurish and close minded - in other words, not good science.

    Presumably, all that now remains for the CDC to do now, is for Dr Alter to be pressured into a retraction of his findings and their work is done !

    QED

    TGOP
  19. muffin

    muffin Senior Member

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    For What It's Worth: From One Click Group and "beforeitsnews.com"

    CDC Malfeasance Exposed As US Government Agencies Find XMRV Virus In Blood Of ME/CFS Patients

    http://beforeitsnews.com/news/90/67...d_XMRV_Virus_In_Blood_Of_ME_CFS_Patients.html

    Powered by TranslateContributed by The One Click Group (Reporter)
    Thursday, July 01, 2010 7:57

    View: Reporter's biography | More storiesThis story has been viewed 20 times
    (20 times in the past 24 hours, 7 times in the past hour)
    April 15, 2010, a government source told CFS Central that a soon-to-be-published CDC study hadn�t found the retrovirus XMRV in Chronic Fatigue Sydrome (ME/CFS) patients but that another government agency had. The agency that found XMRV in CFS patients�and up to 7 percent of the blood supply�turned out to be two agencies: the National Institutes of Health (NIH) and the FDA, as was leaked last week. Today the Wall Street Journal is reporting that the CDC paper which was accepted at the journal Retrovirology has been put on hold, as has the FDA/NIH paper, which was accepted at the Proceedings of the National Academy of Sciences. The reason? According to the Wall Street Journal, it�s because �senior public-health officials wanted to see consensus�or at least an explanation of how and why the papers reached different conclusions.� The CDC has had a problematic year where CFS is concerned. The long-time CDC principal investigator for CFS research Dr. William Reeves was reassigned on February 14, which many critics believe was because the scientist was embarrassing the agency. Privately, insiders have told CFS Central that they did not expect the CDC to find the retrovirus because the agency�s CFS definition has been watered down from one neuroimmune disease to five different combinations of depression, insomnia, obesity and �metabolic strain,� as Reeves himself explained in a 2009 paper. If the CDC had found the retrovirus, it would have negated its 20-year affair with CFS as a psychological problem. Now that two other government agencies have found XMRV and other studies due out this summer have also found the retrovirus, critics point out that the CDC is in a no-win situation and beginning to look like the odd man out.<br <b>Information Release, CFS Central </b>

    Read the original story at The One Click Group

    --------------------------------------------------------------------------------
    CDC Incompetence Exposed As US Government Agencies Find XMRV Virus In Blood Of ME/CFS Patients


    June 30, 2010
    CDC and FDA/NIH STUDIES ON HOLD
    On April 15, 2010, a government source told CFS Central that a soon-to-be-published CDC study hadnt found the retrovirus XMRV in CFS patients but that another government agency had. The agency that found XMRV in CFS patientsand up to 7 percent of the blood supplyturned out to be two agencies: the National Institutes of Health (NIH) and the FDA, as was leaked last week.

    Today the Wall Street Journal is reporting that the CDC paper, which was accepted at the journal Retrovirology, has been put on hold, as has the FDA/NIH paper, which was accepted at the Proceedings of the National Academy of Sciences. The reason? According to the Wall Street Journal,its because senior public-health officials wanted to see consensusor at least an explanation of how and why the papers reached different conclusions.

    In addition, the Wall Street Journal also reported that a spokesman for the Department of Health and Human Services said the research was being reviewed to ensure accuracy and relevancy of the scientific information.

    Some insiders say that this is a face-saving move to come up with a plausible explanation for the disparate XMRV findings and to present a united front so as not to confuse the public about blood safety.

    The CDC has had a problematic year where CFS is concerned. The long-time CDC principal investigator for CFS research Dr. William Reeves was reassigned on February 14, which many critics believe was because the scientist was embarrassing the agency. After Dr. Judy Mikovits's paper linking XMRV to Chronic Fatigue Syndrome was published in Sciencein October, Reeves told the New York Times: We and others are looking at our own specimens and trying to confirm it. If we validate it, great. My expectation is that we will not. Reeves also told the Times that the culprits behind CFS were more likely sexual and emotional abuse and an inability to handle stress.

    Privately, insiders have told CFS Central that they did not expect the CDC to find the retrovirus because the agencys CFS definition has been watered down from one neuroimmune disease to five different combinations of depression, insomnia, obesity and metabolic strain, as Reeves himself explained in a 2009 paper. In a 2008 CDC paper, An extended concept of altered self, Dr. Jim Jones argued that illnesses such as CFS are illness states rather than true diseases. A CDC paper from 2006 on coping styles found CFS patients guilty of maladaptive coping and escape-avoiding behavior.

    If the CDC had found the retrovirus, it would have negated its 20-year affair with CFS as a psychological problem. Now that two other government agencies have found XMRV and other studies due out this summer have also found the retrovirus, critics point out that the CDC is in a no-win situation and beginning to look like the odd man out.

    **********
    Related Links:
    * FDA And NIH Confirm XMRV Findings In ME/CFS Patients
    Esme, Press Release from the Netherlands
    * Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome
    Judy A. Mikovits et al, 10.1126/science.1179052, Science Express
    **********



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  20. hvs

    hvs Senior Member

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    And these data do not support the absence of XMRV in the population since the SOLE thing they've shown is that they are incapable of finding XMRV or that it does not exist.
    Why would the editors allow the half-truth "do not support the existence" statement when my statement above is equally true?

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