New research rattles hopes for many patients with CFS

Discussion in 'Fibromyalgia Main Forum' started by TigerLilea, Mar 17, 2011.

  1. TigerLilea

    TigerLilea Active Member

    Chicago Tribune
    March 17, 2011

    New research rattles hopes for many patients with chronic fatigue syndrome
    (Retroviral link to debilitating illness looking shaky, but critics still bank on anti-HIV drugs)

    A high-profile scientific paper that gave enormous hope to patients diagnosed with chronic fatigue syndrome, and even prompted some to begin taking potent anti-HIV drugs, has been largely discredited by subsequent research.

    Evidence is mounting that a retrovirus called XMRV is not a new human pathogen infecting millions, as was feared, but a laboratory contaminant.

    * * *

    This month, 4,000 scientists and clinicians gathered in Boston for a retroviral conference that included 10 presentations offering evidence that XMRV is a lab contaminant. Mikovits did not attend.

    Retrovirologist Jonathan Stoye, who co-wrote a supportive commentary that accompanied Mikovits' original study linking chronic fatigue syndrome and XMRV, said he has since changed his mind.

    "I think there are serious problems," said Stoye, who works at MRC National Institute for Medical Research in London.

    His co-author, John Coffin, a retrovirologist at Tufts University, agreed the evidence for a link between XMRV and human disease had been seriously weakened.

    "I think most people are reasonably convinced that there is not much left anymore," Coffin said. But, he said, "I don't think everything has been nailed down."

    Coffin began harboring doubts about Mikovits' study as negative evidence piled up and after he, researcher Vinay Pathak at the National Cancer Institute and their colleagues found what they believe to be the parent viruses of XMRV.

    * * *

    To read the complete story go to:
  2. quanked

    quanked Member

    "His co-author, John Coffin, a retrovirologist at Tufts University, agreed the evidence for a link between XMRV and human disease had been seriously weakened."

    I suppose I should read the entire article before I pose this question but I have to wonder what weakened the evidence. Surely they are not referring to the UK studies?

    I will go read the article.

  3. quanked

    quanked Member

    Well, I read the entire article. Lots of quotes. And I have questions that I cannot yet really articulate.

    "Coffin began harboring doubts about Mikovits' study as negative evidence piled up and after he, researcher Vinay Pathak at the National Cancer Institute and their colleagues found what they believe to be the parent viruses of XMRV.

    The viruses, according to research Pathak presented at the Boston conference, recombined in a cell line called 22RV1 to create a new retrovirus — XMRV — sometime in the 1990s. The work is in the publication process."

    ...and who has duplicated their findings?

    Anyone know of if Mikovits was invited?

    "A European research team this week reported being unable to find any evidence of XMRV in the blood of people diagnosed with chronic fatigue syndrome and their healthy peers, the latest in a stream of studies in which researchers looking for the retrovirus in the blood of both sick and healthy people have come up empty. Others have reported no evidence of the retrovirus in the blood of patients who were previously found to be XMRV-positive."

    So they are saying that their tests are more accurate than the tests being done in Nevada?

    Is it just me or is the article very critical of Mikovits?

  4. Mikie

    Mikie Moderator

    While I believe it's important to address any chronic infectiions we may have, I think looking at exterior factors for the "cause" of our illnesses is futile. They may trigger what is basically an immune/neurological condition in us, but I do not believe they cause our illnesses. We appear to have some kind of genetic predisposition to CFIDS/ME which can be triggered by many factors. At this point, though, no one knows for sure.

    Love, Mikie
  5. quanked

    quanked Member

    Dr. Mikovits: "This latest study concerns the potential origin of XMRV. It is interesting that infectious XMRV is still found only in human cells and not in mouse cells or mice. In addition, these data have little to say about XMRV infection in humans."

    The study:

    Not sure what to think--if one takes what is said in the tribune then basically these scientists are saying that testing done to find xmrv is perhaps pointless. Or I could be reading it wrong.

    I hope our more scientifically minded members will respond here.

  6. gapsych

    gapsych New Member

    Sadly, I think it is looking more and more, like XMRV will not pan out. I think research will continue looking into how this happened. I was really hopeful for a while. But it just seemed too good to be true once the negative studies started coming in. I don't think the WPI handled things as well as they could as far as jumping on the bandwagon prematurely and now we find out why Peterson left and some of the games Dr. Mikovits was playing that were highly unethical.

    If the above is true then I hope the focus on CFS studies will remain high. IMHO, it is most likely some kind of virus/genetic predisposition that changes the immune and neurological systems.

    I don't understand all of the intricacies, however I have been reading a lot about this issue. I will come back and list some of the sources that helped me understand this better.

    I do know a lot about science, but retrovirology is over my head. Add FM fog with that and it's harder to absorb information.

    Like BDTMU516 said, at least this condition is getting more attention, especially the fact that CFS is NOT a mental disorder!!!!!

    Science is self correcting. Unfortunately, the results are not always what we want to hear.

    Take care.

    [This Message was Edited on 03/18/2011]
  7. quanked

    quanked Member

    Clearly I am missing some information..."now we find out why Peterson left and some of the games Dr. Mikovits was playing that were highly unethical."

    Why did Peterson leave? I had heard that he left but never heard why. And I was not aware of the issues with Mikovits. Boy, I feel clueless.

    I was going to have blood drawn in a couple of weeks to be tested for XMRV--now it seems pointless.

    So do you think it means that the testing for XMRV is bogus? When I read the tribune article it seemed like one of the interviewees was hinting at this.

    Wow, and then there is the institute that was just built.

    I do not think I am taking this very well. I am sure I am not the only one.

    I get what you are saying about the fog. There was a time when I could grasp the complex about so many things on a certain level. Those days ended some time ago.
  8. heapsreal

    heapsreal New Member

    Theres a couple of things i dont understand, one is that if its a lab contaminent wouldnt the healthy controls have the same level of xmrv as the cfs group in the original sudy. Plus they say there is a low percentage of the healthy population have xmrv, so if all these other studies know how to test for xmrv then they should find atleast a few cases of xmrv, not none. The other thing is that WPI also have done other tests on xmrv positive patients like cytokine profiles etc that are different to xmrv negative people. Lastly, there are some out there that have been greatly helped with antiretro drugs, i know some havent, but some have, so they need to explain all this until im convinced xmrv has nothing to do with cfs.

  9. roge

    roge Member

    so they are saying xmrv was born in a lab in he mid 90's now and as me/cfs occurred before this, then presumably xmrv cant be the cause. Im not sure I buy this nor I am convinced that xmrx does not have some role to play in me/cfs and possibly other neuroendocrine immune diseases. there was a huge gap between controls and me/cfs patients that tested positive for xmrv. if the samples were contaminated , then that gap would not exist as hepsreal pointed out. also, it would seem to me that contamination cannot explain why WPI can reproduce its results both in the lab in Reno and at Ruscetti's at the NCI. if so and both those labs were contaminated, then how come other labs in usa (ie. cdc) are not contaminated? Also, there are many other labs that had + xmrv samples, there is Singh's study, German, Japanese, De-Meileir study, clinical samples checked by VIP Dx and RED Labs, samples checked at the IrisCaixa in spain etc, most of these did not work with the 22RV1 cell line ever. So something is just not adding up here. Also, WPI proved xmrv to be infectious in humans. Also, the lab contaminent people say xmrv cant cause disease presumably because it was born in a lab, whether it is lab born or not , Im not sure how this is releavnt to causing or not causing disease in humans. I am not scientist and to be honest dont much about retroviruses, but my intuition says lab born or non lab born, a virus is still a virus which can still do damage if it is deemed infectious and can replicate which WPI and even others have shown. This saga is truly unbelievable, I mean the politics of it all are quite simply appalling. Hopefully one day soon, the truth will be revealed.
    [This Message was Edited on 03/19/2011]
    [This Message was Edited on 03/19/2011]
    [This Message was Edited on 03/19/2011]
  10. donnaba

    donnaba New Member

    I saw Dr. Mikovitz speak Jan of this year. She mentioned other studies being negative because they weren't following the stringent testing she used. I think she also mentioned she would attend this conference if invited, looks like maybe she wasn't.

    My dr.'s office has the video of her speaking:

    She appears quite intelligent and a real force to be reckoned with. Watch the video, it may give you more belief in her results.

  11. gapsych

    gapsych New Member

    I think she is intelligent but misguided.

    The above is a good start about the Peterson debacle.

    I will post more when up to it. Maybe others can add to this.

    Take care.

  12. quanked

    quanked Member

    I found a thread on PR on this study—20 pages long yesterday—not sure how others wade through such a lengthy thread.

    There is too much/many mental masturbation, mild disagreements, digressions and other stuff to sort through for me to get to the more factual info. It is not that I have not participated in this kind of behavior myself because I have in other areas of my life--it just gets in the way now. I do not have the mental acuity I once had or the endless energy.

    What I did gather was that Mikovits was not invited to the conference. There was some scientific discussion but I was unable to understand their points.

    Once again, I was reminded how PR does not work for me—I mean in terms of gathering information. I think it is a useful place for those who are able to mentally process at a higher level. Certainly there are all kinds of options for communicating on PR that do not exist on Prohealth.

    I may go back and try to sift through it again.
  13. quanked

    quanked Member

    "When Judy Mikovits found links between chronic fatigue syndrome and a virus, the world took notice. Now, she's caught between the patients who believe her work and the researchers who don't."


    "Mikovits says that she’s analysed all the papers critical of her work and found flaws in each of them. Nevertheless, she’s quick to endorse findings that support her work. She claims that Coffin and Pathak’s study, for example, “says nothing about human infection”. Yet new work presented at a different meeting that found XMRV using next-generation DNA sequencing offers “no doubt it’s not contamination — that the whole story’s real”, she says.
    Despite the growing choir of sceptics, Mikovits says that she has simply seen too many data implicating XMRV and other related viruses in chronic fatigue to change her mind. For her supporters, that steadfastness offers legitimacy and hope. “The scientists are moving forward,” she announced at her talk in Santa Rosa, “and I think the politics will go away shortly.” The crowd responded with vigorous applause." ? SEE EDITORIAL P. 266
  14. quanked

    quanked Member

    I think your source may be right on--

    Important Dates and Deadlines

    Call for Abstracts Posted Online

    Online Abstract Submission Site Opens

    Preferred Registration and Housing Opens for:
    Program Committee
    Invited Faculty
    Ad Hoc Reviewers
    Abstract Authors
    Young Investigator Awardees

    (not sure who is PREFERRED)

    ****General Registration and Housing Opens for:
    International Scholarship Recipients
    Community Educator Program Participants
    Accredited Media
    Researchers and Clinicians
    who are actively participating as investigators in basic science, clinical, or epidemiologic studies of retroviral diseases and their complications**

    Registration and Housing Closes
    *or until the limit of 3,800 registrations has been reached, whichever occurs sooner (so if Mikovits wanted to attend it looks like she could have--I wonder why she did not attend)

    The dates did not copy and paste but are not important at this point.

    In looking over this page it was not clear how presenters were chosen or not.

    Thanks for the heads up--puts a different slant on the issue.

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