International ME/CFS and FM Awareness Day is May 12: The World Will Know
Did you know that May 12 belongs to us? Lots of us are aware of this. We share the buzz on it amongst ourselves. We add blue ribbons to profile pictures. We raise our voices, join our hands, mount the few podiums available to us and tug at the sleeve of the rest of the world.
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UPDATE: BLOOD WORKING GROUP

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Mindy Kitei, Aug 4, 2011.

  1. ixchelkali

    ixchelkali Senior Member

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    Interesting that the BBC is reporting on the partial retraction of a paper they didn't publish a whisper about when it was published two years ago. If they initial study wasn't newsworthy, why is a partial retraction newsworthy? :rolleyes:
     
    WillowJ likes this.
  2. Andrew

    Andrew Senior Member

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    Even if everyone (including WPI) decides it's not XMRV, I still support WPI. I'm not going to give up on them because of one setback.
     
    Nina, WillowJ and SOC like this.
  3. Ecoclimber

    Ecoclimber No Longer On PR

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    Well it gets worse. LA Times Link between virus and chronic fatigue syndrome gets even weaker....By Karen Kaplan, Los Angeles Times September 22, 2011, 2:28 p.m.

    At first, it looked like a breakthrough in the fight against chronic fatigue syndrome. Researchers said they found a mouse retrovirus called XMRV in the 68% of blood samples collected from 101 patients with chronic fatigue syndrome, while only 4% of blood samples from 218 healthy controls had evidence of the same virus. The research team said it was strong evidence that XMRV had something to do with causing chronic fatigue syndrome (CFS). The report had added credibility because it was published in the prestigious journal Science.....

    There is also the possibility, it could be another retrovirus just not xmrv. As evidence by Jamie Deckoff-Jones MD treatingxmrv blogspot, ARV treatment is a mixed bag with anecdotal results.

    What is so damaging are comments made by Judy Mikovits as reported in this article. "She accused one particular naysayer of trying to play God and offered a conspiracy theory in which the U.S. government is trying to undermine her research because it fears an outbreak of XMRV." These statements alone will destroy any of her credibility within the scientific research community concerning any future research projects that she may conduct at WPI. It is incredible and inconceivable that she would make such statements as a scientist. Where is WPI's PR department....just unbelievable. WPI shouldn't expect any NIH grants for research given these statements. I also am making the assumption that the reporter did her due diligence in verifying her comments since it is the LA Times. Otherwise, they would be required to issue a retraction if untrue.

    It refutes in part the Oct. 2009 study by Mikovits. The BWG found was not just a failure to replicate, it was a failure to repeat. Mikovits and the WPI repeated their same experiment as reported in Science in October 2009 but came up with a different result. Mikovits and the WPI had every opportunity to validate their results but failed. They were in control.
     
  4. FancyMyBlood

    FancyMyBlood Senior Member

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    This is like adding oil on the fire for the denialists on the other forum. It's very irresponsible to say something like that and while I'm very thankful for the awareness Mikovits' research brought to ME/CFS I don't know how much longer her position is tenable. Very, very sad.
     
    wdb likes this.
  5. free at last

    free at last Senior Member

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    I think if she actually said that, then it speaks of a scientist who is so sure of her results, that she can only find one explanation left. Its seems more than a bit unlikely at this point, that theres any truth in what she has said, if she said it ? But i suppose if i could say something to her, it would be ok prove it. prove that you belive that. And replicate results that the BWG and others havent managed to do. The problem is, and im in shock reading that she said this. If she really belives this. she must belive the samples have been tampered with. This couldnt get more messed up could it really. a sad day. why is she so sure she is right, is the question here ? enough to say what effectively could be the end of her career. I hope the reporting is accurate here, it certainly sounds suspect to me ?
     
  6. Bob

    Bob

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    The article suggests that Judy hasn't changed her position...

     
  7. Daffodil

    Daffodil Senior Member

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    every decision i have made in the last 2 years - inlcuding deciding to stay alive - has been based on xmrv. what do i do now?
     
  8. allyann

    allyann Senior Member

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    Hang in there Daffodil.

    Please have faith that this does not mean the end. In my opinion researchers are now more interested in findng out what retroviruses cause/trigger ME/CFS and how the body is reacting to these viruses - overacting immune system. I see more research as a result of these papers. The fact that they have not retracted the whole study also indicates to me that they also gained a lot of valid knowledge and data around XMRV and its association with ME/CFS .
     
  9. eric_s

    eric_s Senior Member

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    Unfortunately that doesn't seem to make sense if you find ~50% of the negative controls positve.

    If she believes something went wrong with the BWG study, fine, let them have another chance, they could even use part of the 100'000$ they got from Vivint to finance it. Let them do another panel of blinded samples handled by a party that is friendly to the WPI but that also can be trusted to not tell them the codes...

    If they can't get it right then i suggest they give the rest of the money to the National ME/FM Action Network or the IACFS/ME...

    I'm curious to hear some statements from Lo and Ruscetti. I still can't believe they have not done some sort of test run of the BWG study in their own labs. If they have and there they were able to tell the samples apart then there are serious questions. If they haven't done it then that's just irresponsible and negligent in my opinion. I don't trust people who work like that to solve this disease.
     
  10. ixchelkali

    ixchelkali Senior Member

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    I expect the L.A. Times reporter just read today's article in Science which said
    The general tenor of the Science article was to discredit Judy Mikovits, I thought.
     
  11. eric_s

    eric_s Senior Member

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    Not everything depends on XMRV, Daffodil! The disease is there and so it can be understood and treated. If they were wrong then we need better people on the job and they exist. It can be done.
     
  12. Ecoclimber

    Ecoclimber No Longer On PR

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    Daffodil never lose hope. All the decisions and treatment protocols that you engaged over the years provided invaluable information as to what doesn't work with someone with your illness and in your condition and should never be considered wasted efforts. You provided invaluable information and contribution to the ME/CFS community.

    Even as I speak, there is a tremendous amount of ongoing research in many research labs across the country that will hopefully demystify ME/CFS and which will provide a cause and cure for this illness. I remain hopeful that a solution will be found in the not too distant future. Always live with hope!

    If you read the live chat log conducted today on xmrv on Science, you can gather some invaluable insight into the scientific research community thoughts on ME/CFS. Posted on this forum here:

    http://forums.phoenixrising.me/showthread.php?13800-Live-chat-about-xmrv-tomorrow&p=206767#post206767
     
  13. Ecoclimber

    Ecoclimber No Longer On PR

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    It's interesting in the live chat on Science that Dr. Michael Busch admonishes or rebukes Judy to some extent. Do other people feel the same way?

    [Comment From Guest Guest : ]
    If you were sick for 20 years and tested postive for hhv-6a, mycoplasma, EBV, CMV, aspergillis, Subclass IgG deficiency, low t3 and are always ill- progressed to having severe neuro systems where you could not even walk- and were saved by Immuogloblin- why would Immunoglobin help if the immune system is over active since it boosts the immune system. I am very upset how bad patients are treated. I almost died many times already and if not for a few doctors and my husband being a doctor from another country I would not be here. Yet- doctors do not take this illness serious, I do not care what you call it- Lyme, CFS, ME, Fibro- gulf war. Many scientists have linked to our illness to vaccines and that these are stealth pathogens- when if the US Gov going to stop the cover up? We are a tuskegee experiment- nothing else makes sense. So far Dr., Judy Mikovits is the only doctor willing to speak out about how ill patients are. When will other doctors speak out and care about patients and not the AMA, FDA, pharm, and insurance companies? Do you not care that people are dying? I lost 4 friends - I know I do not have long and without treatments I would die. Sometimes I want to die - for the suffering is so intense. What would you do if you lost your life and lived in bed and homebound- after making 300k a year and having a successful career and had a wonderful life... WE NEED TREATMENTS NOW- NOT IN 10 years- those ill 20+ years will not make it another 20. I am tired of the lies-
    Thursday September 22, 2011 3:57 Guest
    3:59


    Jay Levy:
    That is why we need more funding for research on CFS and education in our medical institutions on this disease so that it is seriously considered.
    Thursday September 22, 2011 3:59 Jay Levy
    4:00


    Dr. Michael Busch:
    I have worked closely with Judy for the past 2 years, and secured funding to support her lab in the previous and future studies. But Judy needs to acknowledge that the current data fail to confirm her previous findings. I am eager and willing to continue to work with her, but only if we can objectively design experiments and interpret results with scientific rigor and without emotion or influence from her institute sponsors or patient groups.
    Thursday September 22, 2011 4:00 Dr. Michael Busch
    4:00
     
  14. ixchelkali

    ixchelkali Senior Member

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    It's disappointing to find out that we don't have "the" answer to ME/CFS. And XMRV was appealing in the sense that a virus is a cause-and-effect that people, including doctors, understand. It would be a clearcut answer to those who think ME/CFS is psychosomatic or malingering. It would probably lead quickly to treatments. On the other hand, I can't be completely disappointed that I don't have a retrovirus. If it's not something contagious spreading through the population, I'm glad. If I haven't inadvertently passed it to loved ones, I'm glad.

    I don't think it's a cause for anger, though. It's a shame this has gotten so politicized and ugly, but basically the science worked the way it's supposed to. A team of researchers looked for something and found it, and reported their findings. Discounting those who rushed to discredit those findings like a cat covering dirt, other serious scientists tried to find the same thing. They tested the theory. It didn't work. Other scientists tried to figure out what was going on and presented counter-theories that the original finding was contamination. (Discounting the part where the scientists started slinging insults and innuendos at one another.) The original scientists check their results in a blinded study and don't get the same results. Others of the original scientists test the counter-theories of contamination, and find them true. The knowledge creeps forward, and eventually, one hopes, reaches a consensus of scientific opinion. This is how it is supposed to work, and it is working.

    Nothing about this implies the WPI did sloppy work to begin with. Illia Singh took extraordinary precautions against contamination in her study, and still managed to get some. It's very, very difficult work, and it's breaking new ground. They are working with such very low copy numbers.

    And it's not all over yet. The preponderance of evidence is mounting against XMRV, but I wouldn't close the door until the Ian Lipkin study results are in.

    In the meantime, a number of people who didn't realize that ME/CFS is serious are taking it seriously. We have new research going on. Ian Lipkin is going to be looking for other pathogens, Jose Montoya is looking at HHV-6, John Chia is looking at enteroviruses. We've got people looking at the immune system and the energy physiology. The new ICC criteria should lead to much better studies. We've got several candidates for biomarkers that can be tested with the new criteria. The Lights are hoping to market a test. Things are happening. It's not a time to lose hope.
     
  15. Daffodil

    Daffodil Senior Member

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    can someone contact ian lipkin? werent the results supposed to be out this fall? will he even release them now? if they are positive, maybe he will want to go back and re-work them. since he knows many patients are now despondent, he needs to comment NOW.

    i didnt know montoya was still looking at hhv6..i thought he was trying to find another pathogen. isnt peterson trying to find another pathogen or is he still on hhv6a?

    maybe we should just pour money into people looking for other pathogens.

    isnt ian lipkin also looking for other pathogens as well as mlv's?

    ugh. this is a nightmare.
     
  16. Ecoclimber

    Ecoclimber No Longer On PR

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    Yes and Yes to both studies of multiple pathogen research by Lipkin and Montoya as well as other ongoing research studies.


    Dr. Montoya Stanford CFS Study: Update
    Detection of pathogens such as herpes viruses, the Lyme disease agent, xenotropic murine leukemia virus-related virus (XMRV), Toxoplasma gondii, or any unknown pathogen that may be a trigger for chronic diseases such as CFS, CLD or other diseases. We plan to look for such pathogens in a broad population of CFS patients at Stanford and compare the findings to age- and sex-matched controls.
     
  17. xrayspex

    xrayspex Senior Member

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    hah Judy tells the truth and this country can't handle it. what a dame. so far she is hanging in there better than de freitas was able to.......
     
  18. xrayspex

    xrayspex Senior Member

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    I still think Lipkin's associaiton with the film Contagion is very bizarre with the timing of all this, stranger than fiction.....this is going to be obfuscated
    to inifinity. anyway they wouldnt know what to do to help treat us even if they were honest with the research.....we still need to jerry rig treatment
    protocols together either way, with my mcs its not like I could tolerate antiretrovirals. If you havent found other stuff that helps try a low dose of pain medication, I think they have immune modulating properties like LDN and help with the pain. eat right, moderation all that stuff.
     
  19. VillageLife

    VillageLife Senior Member

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    From what I hear there will be lots of news at tomorrow's conference.



    Lipkin study has NOT even started. They have not even began to draw blood sample.


    This is going to take years.
     
  20. Jemal

    Jemal Senior Member

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    The Lipkin study has indeed not started to collect samples yet. Results are expected early 2012. I have no idea what he is going to look for, though... I hope they are doing a more broad sweep for (retro)viruses.
     

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