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From the 1st annual XMRV conference

Discussion in 'XMRV Research and Replication Studies' started by George, Sep 7, 2010.

  1. George

    George waitin' fer rabbits

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    I haven't even seen a follow up in the papers, anywhere. Am I missing it??? I have my alerts on but it's as quiet as a mouse.

    I don't understand why none of the papers that were presented have been published either. (head scratch) Even the negative ones. It's eerie the silence on this.
  2. VillageLife

    VillageLife Senior Member

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    I cannot wait to hear what Mindy says....she was there all day, even if she's not aloud to give us data. I really hope she can give us the mood of the conference and tell us whether she thinks yes it's all going well.
  3. Berthe

    Berthe Senior Member

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    I guess this is correct, Bob. My physician told me that he could see in my sons blood that he had 'Pfeiffer', or at least a response of the immune system to Pfeiffer, but my son never developed the disease.

    Berthe
  4. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

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    There were some pretty long gaps between Cleveland Clinic tweets from the Conference at one point yesterday. I think something serious went down and the press have been asked not to report it. Serious as in - lots of pre publication results where embargoes cannot be broken, or serious as in someone squeaked about the blood supply or said something they shouldn't have, or serious as in there is sooo much disagreement between everyone' position(s) that the press have been asked to give them a bit more time to sort it all out. That's my take anyway.
    Or maybe everyone is just flying home and there was sooo much info they are trying to remember who said what for their summaries. There won't have been too many smooth soundbites coming out of this Conference for the press!
  5. Recovery Soon

    Recovery Soon Senior Member

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    A lot of folks have said this. Here's my take on her demeanor-

    She is a firebrand, who was exercising every bit of restraint in her body not to let loose on the shoddy science and some of the scientists sitting in the room with her. By nature, she is brilliantly forceful- but her tone was clearly softer, and her body language reflected the struggle.

    My guess is that her demeanor was strategized beforehand by the WPI camp. This was primetime and she had to play nice.

    That's also why I believe Stoye was seated next to her, sharing one mic. I think they feared what she might say, and his fail safe was to pull it away.

    Have no fear, when the moment is right, she's coming with guns blazing.
  6. VillageLife

    VillageLife Senior Member

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    I got this email from Dr Holmberg this morning (He was on the Q&A team last night)
    I don't think he will mind me posting it.

    ---------
    You are very welcome. We have come far in less than a year. Although there is more work to be done, the legitimacy of our efforts are being established.
    --------
  7. urbantravels

    urbantravels disjecta membra

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    Can someone explain to me what was going on at the very end there, in the discussion of HTLV, where Dr Mikovits said something about "do you have therapies" and the mike was pulled away? I have looked at the transcript and it doesn't help that much. Obviously some heavy subtext there (or callback to something that had been discussed earlier)
  8. anciendaze

    anciendaze Senior Member

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    Any dog could tell you the secret: keep your eyes on the alphas in your pack. Don't trust me, ask your own dog.
  9. Sherby

    Sherby Sherby

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    Hi all, sorry to butt in and change the subject slightly, but have heard the name Stoye mentioned a couple of times. Was he the chap at end of the table next to JM. If so is he the same person as mentioned below, and how does he fit into the scheme of things. Found this on ME Association. Thanks

    None of these five research groups - which in the case of the UK included Professor John Gow, Dr Kate Bishop, Dr Jonathan Kerr and Dr Jonathan Stoye and used patient samples supplied by physicians and neurologists including Dr Abhijit Chaudhuri and Professor Peter Behan - have been able to find evidence of XMRV in blood samples from ME/CFS patients, or in the healthy controls.
  10. alex3619

    alex3619 Senior Member

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    Hi Bullybeef, the immune system doesn't care if something is pathogenic: it just tries to match anything. The body has oodles of different antibody making cells (B cells), but these dont switch on and replicate unless it finds a match for the antibody it carries. What antibodies you can make is partly random, and these cells can randomly shuffle their DNA to make a huge assortment of antibodies - although I think this is supposed to be switched off after a certain time, i dont recal when. This is why the body can attack itself: if one of these B cells has antibodies to your own body, and this type of B cell wasn't eliminated by the body, then you get an autoimmune disease.

    So when one of these cells finds a match to hmrv, it doesn't care what it finds, it just attacks.

    Bye
    Alex



  11. VillageLife

    VillageLife Senior Member

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    what seems to be the first official news from the conference.....

    Researchers Study Virus' Link to Chronic Fatigue Syndrome
    Does XMRV Occur in People With Chronic Fatigue Syndrome? Studies Yield Mixed Results

    http://www.webmd.com/chronic-fatigu...-study-virus-link-to-chronic-fatigue-syndrome

    Sept. 9, 2010 -- An international group of scientists met this week at the National Institutes of Health to discuss a retrovirus that has been linked to chronic fatigue syndrome and prostate cancer. XMRV (xenotropic murine leukemia virus-related virus) was first identified in humans in 2006.
    “We are at the very earliest stages” of understanding XMRV, said Cleveland Clinic urologist Eric Klein, MD, part of the team that discovered the virus in men with prostate cancer.
    Studies in Confusion
    Understanding the retrovirus was made more difficult over the past several months, as studies on the links between XMRV and chronic fatigue syndrome (CFS) were published with widely divergent results.
    In the first study, published in the journal Science in October 2009, 67% of patients with CFS were infected with XMRV, while less than 4% of the control group tested positive for the retrovirus. Last month, a joint FDA/NIH study published in Proceedings of the National Academy of Sciences reported a strong link between CFS and a virus very similar to XMRV.
    In the 10 months between the publication of those two studies, however, a report from the CDC and several other studies found no connection between CFS and XMRV.
    “We’re trying to hash out why the negative studies were negative,” Klein said during a morning break. “There’s debate about the robustness of the techniques used in the four *negative studies as well as how the researchers defined CFS [when selecting eligible participants].”
    More Questions Than Answers
    At this point, experts are unable to say whether XMRV causes disease or whether it is a benign infection. Klein estimates that it will be a few years before there is enough evidence to answer such a basic question.
    He compared what we know now about XMRV with what researchers understood about HIV at the beginning of the AIDS epidemic in the early 1980s.
    “There was a great deal of skepticism about what caused the disease, and it took time to fit all of the pieces together,” Klein said. “With XMRV, we’re just gathering the puzzle pieces now.”
  12. alex3619

    alex3619 Senior Member

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    Hi George, you might be surprised how many knew about Dr. Marshall, although that might be only in Australia. I knew about his research in the 90s, and he is a personal hero of mine - but I have never had a stomach ulcer. I was looking for medico researchers who thought outside the box as a model for how to go about treating CFS, and he fit the bill. Also, his work was covered in lectures at uni. Many know the story - most of my non-cfs friends know the story, and I never had to tell them. Then again, that may have been true only for Australia.

    Bye
    Alex

  13. August59

    August59 Daughters High School Graduation

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    Zoologist??

    I remember a lady that had her hair pulled back and speaking of animals and got the impression that she was with a zoo. However, I cannot remember where the zoo was and whar her name was.
  14. bullybeef

    bullybeef Senior Member

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    Thanks Alex, makes perfect sense, and something I should have known after being told I had colitis in 2006.

    It is annoying how they keep jumping on the contamination bandwagon even after Dr. M stated on the IiME DVD that she cannot help a patient create an antibody to a contamination.

    BB
  15. alex3619

    alex3619 Senior Member

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    Hi

    We've known for many months that XMRV didn't replicate much. It disappears from the blood after 40 days, and appears to have a limited number of replication cycles. It now appears that this is the primary concern that may make antiretrovirals not effectively treat CFS. However, they would slow or limit viral relapses/triggers. I think they should be used prophylactically, to prevent MLVs from replicating when we are injured, run down, or have a raging infection. In other words ARVs will help, but wont be a magic wand under these circumstances.

    There is also the issue of protein envelope. Even if the virus is not replicating, is it making neurotoxins?

    bye
    Alex

  16. Sunshine

    Sunshine Senior Member

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    Excellent question Bullybeef.

    CDC in it's history has classed CFS as an 'Emerging Class 1 infectious disease'.
    The World Health Organisation classifies ME, as a neurological disease. (ICD 10 - G93.3).

    Even if none of the above had happened, there are numerous studies showing the disablity levels in ME & CFS equal: COPD, Asthma, AIDS, Heart Failure, MS. (Importantly mental illness does not cause these levels of disability). Neither ME or CFS, has ever been categorized as a mental illness.

    So thankfully for patients with the label 'CFS' and 'ME' health agencies have told them they have diseases and illness and they are not healthy. Which would be expected if infected with an exogenous infectious retrovirus, XMRV (An MULV).

    I am interested that you say XMRV is 'not causing disease'.

    As no study has ever taken place and no data exists on people infected with XMRV to measure levels of health or disablity compared to controls without XMRV, one cannot plant any validity on the above statement quoted. One can assume this is the case, however, if one watches the 1st International Conference on XMRV broadcast from the NIH. If one is not aware that positive data exists, I too would assume this. That is fully understandable, especially if the chair of the conference (John Stoye) from the UK MRC pulls Dr Mikovits's microphone away when she is trying to answer a question on possible disease mechanisms of XMRV and suddenly called an end to the conference, 1 hr prematurely with no explanation.

    http://www.youtube.com/watch?v=VBHZGPIRzOU
    (See 6 mins 12 seconds elapsed onwards).

    There is some data on XMRV in people with chronic neuro immune disease running at percentages of 80% (Cheney) and 98.8% (WPI) via culture detection method in people with the labels ME and CFS. Healthy people have been detected at levels far lower at 4-7% using the same methods. This is considerable evidence of XMRV causing disease, and there needs to be more data collected. Naturally much more research needs to be done in people who have 'well pedigreed' CFS and neuro immune disease Vs CDC CFS and UK Psychiatric CFS (Oxford Criteria) which the UK Medical Research Council (MRC) use for their research into CFS/ME and who believe CFS/ME is best treated with mind control (CBT) and exercise.

    Interestingly, the chair of the conference, (John Stoye) co-authored a negative XMRV paper on CFS, and his employees (the MRC) are in ownership of data on ME covered under the official secrets act in the United Kingdom that cannot be released until the year 2070. The MRC also exclusively fund psychiatric medical research into CFS/ME in the UK, but will not allow biological research for reasons they refuse to explain, even in court. Their highest receiver of money from the MRC is Professor Simon Wessely, who says ME is a form of hysteria, and a reason to claim social welfare benefits. Even more interestingly the same man gave samples from his psychiatric clinic of fatigue (ME is not a psychiatric illness) to Myra McClure, who did not follow the methods of the WPI to detect XMRV, and like Stoye, also did not detect XMRV.

    Combined they both produced two negative studies, and just happened to feature in the recorded Q&A session at the NIH. By chance, Dr De Meirleir, and Dr Cheny were not featured, and who both have XMRV infected patients from around the world. One may ask why negative studies (that are pointless in presenting), take precedence over positive studies, that may help explain some cases of people with the label ME CFS who have an positive XMRV blood test result and live in poverty and misery.

    Thank you.
  17. George

    George waitin' fer rabbits

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    Hey Alex
    I am totally not surprised by that. (grins) I've seen the refrence to Dr. Marshall on the boards several times. Please, don't think I was being a weiny dog that I added it in there. I was just re-reading what I wrote and thought, oh my gosh, what if someone new has no clue what I'm talking about, better put it in just in case.

    I had just read this Villagelife and was coming to post, (you still got the fastest fingers, Grins) I bet fell off pillow when I saw that part. But you know I've been reading about HTLV often called the forgotten retrovirus, there are very few treatments for it and most care is pallative, keep the patient comfortable till they die, which can take years. AKKK I thought to myself, can I live with that, that fact that there may not be effective treatments????

    I think I could, heck I'd have to if that's the way it played out, but dang it I just want to "know" ya know????
  18. bullybeef

    bullybeef Senior Member

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    Thanks Sunshine for that comprehensive answer.

    And you have highlighted the specifics of my question.

    I understand that antibodies can form and attack almost anything foreign, and as with autoimmune disease can attack the body.

    But if we speak specifically of XMRV, antibodies wouldnt form and attack XMRV if it was benign, so wouldnt this show that XMRV is causing damage, and therefore disease?

    And on this point, if a person is infected with latent XMRV, would they show negative on a serology test? Again proving that the body specifically creates antibodies for XMRV when it is active, and causing disease.

    BB
  19. Navid

    Navid Senior Member

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    the gentleman from pittsburgh?

    hi all:

    great discussions.

    does anyone know the name and perhaps even email address of the gentleman from pittsburgh who had so much to say at the q and a session.

    i would like to learn more about him and then teach him a bit about the suffering and pain a cfid's/me patient endures on a daily basis. he seems to be a brilliant scientist...but not quite up to speed on our daily burden and the need for speed in research. his ideas if adopted could take years before we see any treatment.

    and the fact the myra monster mcclure would lke him to play a larger role in the research makes me worried....as she obviously DOES not want to see xmrv proven to be causal to cfids...man if i was judy i would have wanted b_tch slap that woman!!!!!!!

    Now that we have the GOVT's attention we need to ACT-UP and ask the tough questions/pull the old skeletons out of the closet like mindy tried to do at the meeting

    .....remember what fauci said abt medical treatment for hiv/Aids...there was before Larry and after Larry Aids treatment...Larry Kramer who raised a raucous rabble to get treatment to HIV/Aids patients more quickly than normal scientific timelines would....we need a larry kramer to lead a group of cfids/me rabble rousers.

    Rivka...maybe we need to have a strategy session w/Larry...maybe he wants to help out another group of under-served ill people.


    thanks
  20. leela

    leela Slow But Hopeful

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    Huh. I'd have to go back and look, but I remember PittsburgMan simply making the point that replication studies should be done where all parties use blood from the same patients, use the same methods of collection and strorage, and the same assay. Sounds like a really sound, logical idea to me, to end once and for all this stupid in-fighting, as well as the politicization of the definition of ME/CFIDS when it is really a medical science issue.

    Of course for us, that would mean the blood samples coming from Peterson, Cheney, Bell, Klimas, WPI, etc.....but wouldn't that be grand?

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