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From the 1st annual XMRV conference

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

  1. Navid

    Navid Senior Member

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    pittsburgh guy also responsible for this:

    " insisting on XMRV/prostate cancer connection be "divorced" from the XMRV/MLV/CFS issue. I took that to mean: "How dare you compare this serious male illness to the one that depressed/crazy women get"


    yes very sound ideas....that will take forever...before we ever see any treatments...that is what i worry about. i want him to understand the urgency ppl afflicted with the disease feel now and everyday.

    i think he's very wise and i want him on our side...but i want speedy action. i don't wnat to wait 5-10 yrs for treatment.

    your last scentence is right on....we have dr's who understand (and treat) this patient cohort inside out...use their knowledge and the patient base...we don't need to start from zero.

    clinical trials could be started w/cheney, bell, peterson, klimas, bateman, enlander, komaroff, levine, burrascano's xmrv+ base NOW!!!!

    thanks.
     
  2. leela

    leela Slow But Hopeful

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    right on shebacat!:victory:
     
  3. LJS

    LJS Insert Witty Comment Here

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    I was under the impression that is already underway according to this:
    http://www.forums.aboutmecfs.org/co...gen-Ace-Lipkin-to-Lead-Big-NIH-XMRV-CFS-Study

     
  4. OneWaySurvival

    OneWaySurvival

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    Loving the WPI optimism

    Andrea Whittemore left a very encouraging comment about 6 hours ago under the Q&A transcript from XMRV global action. http://www.facebook.com/notes/xmrv-...t-international-xmrv-workshop-qa/438284026796

    Andrea Whittemore: "I know it seemed discouraging but what people can say in public vs. Behind closed doors is very different . I trust Judy if she said Grand Slam she knows a lot more than we do;)"

    Now I like the sound of that!

    It's part of a larger comment where she also requests people write to Fauci and Collins for funding of WPI research and 5 centers of excellence. Does anyone know if there is an advocacy project doing this yet (coordinating letters to send to Fauci and Collins)? I get overwhelmed sometimes with following the various advocacy efforts and being unsure of where to best invest my limited energy to help out, but this seems like a big one, and it's coming as a suggestion from Andrea herself. I'll post this on the Advocacy section too so we can stay on topic here.

    Mainly I just wanted to share that gold nugget of enthusiasm from Judy about how well the conference apparently went. Leave it to the WPI to pick me up when I'm feeling discouraged about how far away help seems for our illness. Thank you WPI!
     
  5. August59

    August59 Daughters High School Graduation

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    "5 Centers 0f Excellence"

    The "5 centers of excellence" is going to be very big, as this is what is going to be needed to "validate" Dr. M's work to the "science" community. Funding for these "centers" has been virtually impossible until now. We all know what doctors and facilities have the "correct" cohorts in place to make this happen. These "coordinating letters" to Fauci and Collins (maybe Lipkin too?) are crucial and need to very convincing and to the point. My biggest fear is the "CDC" screwing this up in 2 ways. They don't know how to perform the test and if they supply cohort samples, with it being a blinded study, it's going to put a lot of negatives in the batch right from the start. They should test them "unblinded" first, which would kick CDC samples out from the start and show the scientific world that there cohort selection was the problem from the very beginning (Wishful thinking!).
     
  6. Otis

    Otis Señor Mumbler

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    His name is John Mellors and he's the Chief of Infectious Disease @ U of Pittsburgh. I'm pretty sure if you google his name and Universiity of Pittsburg you'll turn up an email address.
     
  7. Navid

    Navid Senior Member

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    thank you otis...hopefully my brain will create a forceful yet eloquent letter tonite while i sleep and i can send it out to him tomorrow.

    good night
     
  8. xrayspex

    xrayspex Senior Member

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    u.s.a.
    I have a raging toothache so in no mood for b.s. and still skipping around reading comments and news here, but sunshine says SToye from UK and involved with keeping m.e. stuff secret there and was he the dude pulling the mic from Judy? WTF!? is going on here. I don't want to jump the gun but reading what george wrote about the two camps emerging, govmt and wpi.....so it is turning out collins and alter not on our side or what? what is the bottom line here or hopefully its not that cut and dried, nuances?

    So anyone have the emails of who we should write organized somewhere and easy link? would be much appreciated. When I compose myself can send one from my work email and try to sound pro and calm etc

    I feel really done with the games, I mean they say you can't win against the government, perhaps not, but really really ready to go down over it
     
  9. Dr. Yes

    Dr. Yes Shame on You

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    Hey Spex,

    I see no evidence that Alter is on the wrong side.. if anything I would say he is probably the closest thing to an 'ally' the WPI has had in a government agency (outside the NCI).

    Don't know where Collins stands, but writing to him can't hurt...
     
  10. xrayspex

    xrayspex Senior Member

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    thanks dOc YeS

    sure hope yr right
     
  11. ixchelkali

    ixchelkali Senior Member

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    Personally, I can't help but think it's good news if future research into ME/CFS is held to a higher standard of science than those pschological studies have used. I personally don't want to take a drug that's proclaimed successful according to the Simon Wessely standard of success (i.e., a drug that works as well as CBT or GET). No, thanks.
     
  12. Forbin

    Forbin Forbin

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    It didn't just take down surgeons. Tagamet (cimetidine), a prescription ulcer drug, was the first "blockbuster drug" to reach $1 Billion dollars in sales annually.

    In 1994, the NIH published its Consensus Statement on the treating of peptic ulcers with antimicrobials.
    http://consensus.nih.gov/1994/1994HelicobacterPyloriUlcer094html.htm

    By a mysterious co-incidence, just one year later, in 1995, that the FDA cleared Tagamet for over the counter treatment of "heartburn." That same year, the FDA also cleared the prescription ulcer drug "famotidine" for OTC use for the same purpose, i.e. "heartburn."
    http://findarticles.com/p/articles/mi_m1370/is_n7_v29/ai_17434463/
     
  13. Berthe

    Berthe Senior Member

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    Hi everybody,

    I just want to thank everybody ons this forum who made and will make fantastic comment on this topic. I want to thank George (and Cort) in particular for making it possible. The information on this topic is high-quality and I praise myself lucky to be able to read and understand the bigger part of it. Because I'm Dutch this doesn't speak for itself.
    I'm not able to go into lenghty discussions with you because of the energy it requires to do this in another language. But I wanted to let you know that you all give me hope and make me warlike.
    Please know that I'm very grateful!

    Love,
    Berthe
     
  14. Bob

    Bob

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    Hi bullybeef,

    I'm no expert here, but that's not quite my understanding of how our immune systems work...

    I think we do have an immune response to many viruses and bacteria that do not cause disease.
    If you think about AIDS, then it gives an example of this...
    With AIDS, the body's immune system is severely compromised such that everyday, ubiquitous, viruses, that do not usually cause disease, become a serious risk to life for the AIDS patient.
    These usually benign viruses are only benign as long as we have an active immune response to them.

    As far as I'm aware, there's a few different types of benign bacteria/virus... One type of benign virus has no chance of infecting us in the first place because it simply hasn't evolved to infect us (i.e. it might be an animal virus) and so it doesn't have the cellular equipment to invade our cells. But this doesn't mean that there's no immune system response to them... Our bodies tend to attack and get rid of any foreign invader in our immune system. A virus that is unable to infect our cells still activates an immune response, so that it is completely destroyed.

    It could be that case that XMRV is a normally benign virus, which always has an immune system response in everyone it infects. But maybe it causes disease in a fraction of those who are infected with it because of a susceptibility due to genetic differences or environmental factors such as infection with other pathogens.

    Or it could be the case that XMRV is always benign, albeit with an immune response, and that it just happens to infect people with ME more than the normal population. (This might be due to a compromised immune system or genetic factors.)

    So there are many possibilities, but my understanding is that an immune response does not indicate disease or illness, but it can be purely a healthy immune response.

    It might also be the case that a person is no longer infected with any virus whatsoever, but that they still have anti-bodies to the virus which show that they were once infected with the virus. (This would be due a totally successful immune response that eliminated the virus.)

    So my understanding is that an antibody doesn't prove that there is a disease process, or that there is presently infection... It only proves that there was once an infection with that virus.

    My personal belief is that XMRV causes damage... And there do seem to be parallels with ME, AIDS and HTLV infection...

    Like I said, I'm no expert, but that's my understanding of how it works.
     
  15. bullybeef

    bullybeef Senior Member

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    Thanks Bob,

    My questioning was completely open to discussion, I’m not knowledgeable enough to give any opinions yet.

    What you say does obviously make complete sense. I was just throwing the antibody response out there, and whether it could give us a clue to what XMRV is doing.

    I do suspect that the likes of Mikovits, Klein and Silverman may actually know exactly what it is doing, but maybe it is difficult to prove at this time. Maybe it is out there awaiting publication. Here's hoping!

    BB
     
  16. Bob

    Bob

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    Hi bullybeef,
    Yes, I understood that you were just asking questions, trying to understand how this thing works, like we all are...
    Yep, I agree that Judy knows sooooo much more than we do right now...
    We don't even know exactly what she announced at the conference, but I believe that she's now doing research that she didn't even talk about at the conference...
    I believe that Judy has linked XMRV with immune irregularities in the paper she is publishing towards the end of the year, and this could be very significant.
    Then there's the blood working group... we don't know how much work they've done so far on their various projects.
    There's the other positive studies that we haven't seen the results of yet...
    We don't know exactly what the Rucetti's are doing, and what info they have regarding disease causation. Are they investigating other diseases like Autism? Have they found a link between XMRV and immune irregularities? Andrea implied that their work is really significant.
    We don't know what Alter is doing now... it's been months since he completed his initial research for the paper he published... and he has millions of dollars at his disposal for more research (I imagine), so he could now be undertaking an enormous project for all we know.
    How much work has Lipkin done already? How will he chose his cohorts? How will he decide on methodology of collection and storage and process?
    And I've probably forgotten other stuff that's in the pipeline?

    There's just sooo much going on right now, and we don't know anything about any of it!
    It's very frustrating! But at least it's happening!
     
  17. beaker

    beaker CFS/ME 1986

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    Dr. Candace Pert is the co-discoverer of the opiate receptors.
    This I have long known....... but here is some interesting tidbits:

    http://en.wikipedia.org/wiki/Candace_Pert

    she has published with Frank Russetti in the past.
    is co-discoverer of Peptide T.
    and has a patent on a treatment for cfs ( anyone know what that is? )
    -- to name a few interesting items on her very storied career list.
    another wonderful and well respected scientist working for us!
     
  18. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

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    Hi Beaker, just found a link to Candace Pert's own website.

    Its a bit pink & girly, but if you scroll down about 1/2 way there is more info on the Peptide patents, CFS and AIDS research work that she is involved in.

    http://www.candacepert.com/biography.html

    'Dr. Pert holds a number of patents for modified peptides in the treatment of psoriasis, Alzheimer's disease, chronic fatigue syndrome, stroke and head trauma.'

    One of these, peptide T, is currently undergoing research, in the United States, for the treatment of AIDS and neuroAIDS. More information about Peptide T can be found at TINM.org."

    Check out the Peptide T at TIMN.org

    ps maybe we need a new thread for this?
     
  19. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

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  20. VillageLife

    VillageLife Senior Member

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    Grand Slam
    :victory::victory::victory::victory::victory: Dr. Judys the best !
     

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