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New XMRV study to be undertaken.

Discussion in 'XMRV Research and Replication Studies' started by V99, Mar 31, 2010.

  1. Bob

    Bob

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    So how is your cat now Adam? lol
  2. Gerwyn

    Gerwyn Guest

    My cat showed her displeasure at my cartwheeling attempts in her own inimitable fashion.The stiches come out on Tuesday!
  3. Bob

    Bob

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    hvs, you've hit the nail on the head...
    that's exactly what those negative UK studies should have concluded: "We conclude that the UK has a magic anti-xmrv forcefield."
    Because it would have been more scientifically useful than the conclusions that they did come to!
    Maybe you should apply for funding? lol
  4. Cookie Monster

    Cookie Monster

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    I have a feeling that GSK have seen a bigger market than just us ME patients at stake in all this. Dr Mikovits has been gradually laying out the foundations for encouraging research into other possible fields of XMRV associated illness such as autism. Controvertial to say this here probably, given the arguments about cohorts and patients and selection criteria, but what if ultimately a whole category of teenage onset anxiety-related disorders (such as panic disorder or eating disorders for example) were also discovered to be caused by this retrovirus. Who knows where the boundaries will end? We ME patients are maybe just the linkpiece in a much bigger picture.

    Imagine if there is ultimately a big switch of anti-depressant usage over to anti-retroviral medication. GSK would have a huge market to mop up.

    As for the Wessley school...maybe, being funded by the Wellcome Trust (was GlaxoWellcome before GSK)means it is their duty to publicly baulk new research in order to put off the competition from other Big Pharma. Our government in the uk would also be pleased to see GSK make bumper profits out of this scenario.
  5. usedtobeperkytina

    usedtobeperkytina Senior Member

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  6. Bob

    Bob

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    lol

    Gerwyn, I thought you meant that you'd injured your cat by cartwheeling into him/her/it, but then I re-read your message...
    This is another unforeseen consequence of cartwheeling... we really shouldn't all be cartwheeling... the forum will have to close down while we're all getting patched up in hospital! lol
    (hope you make a quick recovery!)
  7. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Bob see my post above.

    tina
  8. PoetInSF

    PoetInSF Senior Member

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    GSK is not exactly an independent lab. Probably not the best player to confirm/refute WPI study as they have financial interest. Nonetheless, it'll be another data point and I'm sure it'll be evaluated by the scientific community with GSK's interest in mind.
  9. Bob

    Bob

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    It's very interesting that you say that Cookie Monster... I developed clinical depression as soon as I became a teenager... I've always believed that the depression was biologically based, but with environmental aggravating factors... During infancy I also had very unusual problems (for a child) with social anxiety... Since getting ME, my depression seems to have cleared up, completely... this maybe just a coincidence, but it's very strange because I'd have thought the depression would have increased while I'm coping with a severe chronic illness... so i can't help wondering if maybe I've always had XMRV, since birth, and that it has caused me to have neurological problems all my life... And maybe when I went down with full-blown ME, the inflamation (or immune response) moved away from my brain into my body... maybe my body now responds to the virus in a different way.

    This is just speculation because, like you say, it's far too early to jump to conclusions like this, but it will certainly a very interesting line of investigation, as they work out exactly what diseases XMRV causes.
    (And I don't even know if I have XMRV yet!)
  10. Bob

    Bob

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    The good news is that GSK will be totally motivated to get a positive result, so that they can sell more anti-viral medicines... This is their only motivation for getting involved so they will be purely focused on finding XMVR... They will use all of their resources to make this work for a positive result... And I think that they will consult with JM... She has already said that she has been working with the pharma industry.

    This is completely the opposite situation to the UK study by Wessely, who was totally motivated to get a negative result, and did just enough work to make sure that the result would be negative, and no more!
  11. gracenote

    gracenote All shall be well . . .

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    usedtobeperkytina,

    Because I've come to admire the reasonableness and carefulness in your posting skills, I clicked on ALL your YouTube selections.

    I still admire the reasonableness and carefulness in your posting skills. And I'm smiling, too.
  12. shrewsbury

    shrewsbury member

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    this just out on PH re Dr Lapp GSK XMRV Study and more

    Dr. Lapps News Re: New XMRV Study, ME/CFS Blood & Tissue Bank, Ampligen Study
    March 31, 2010

    Topics covered in Dr. Charles Lapps March 30 Hunter-Hopkins Center Newsletter include the following three activities important to the ME/CFS & FM community. (For the full text of the newsletter, go to www.drlapp.net/news.htm, where the March issue will be added soon.)

    1. Replication Study of Whittemore-Peterson XMRV Findings
    Glaxo Smith Kline, a pharmaceutical firm in Research Triangle Park, NC, has funded a new study that will evaluate CFS patients with characteristics similar to the Science paper. CFS patients known to have XMRV from the Science paper will be used as a positive control. This study is designed to estimate the prevalence of XMRV in CFS subjects (selected by the modified Fukuda criteria and the Canadian criteria) and healthy control subjects.

    Ethics board approval is pending, but we expect this study to begin shortly. GSK will obtain specimens for this study from Hunter-Hopkins Center(Charlotte, NC) as well as Drs. Klimas (Miami), Bateman (Salt Lake) and Gluckman (Philadelphia) in order to sample subjects from diverse geographic locations. Samples will be provided anonymously by the new SolveCFS BioBank, recently funded by the CFIDS Association

    2. Solve CFS BioBank Needs Blood & Tissue Samples
    The SolveCFS BioBank will collect and store a bank of biological samples (such as blood, tissue, cell, and DNA) and clinical information from individuals with CFS and healthy individuals (controls). Subjects must be aged 10 and older, from the U.S. and other countries. Specimens will be stored indefinitely at the Genetic Alliance BioBank laboratory in Washington DC. This ensures that individual privacy and confidentiality are protected and that samples are available to researchers whose research projects have been reviewed and approved by the CFIDS Association of America Medical Research Advisory Committee. Currently the SolveCFS BioBank is receiving specimens from only Hunter-Hopkins Center and three other sources (Drs. Klimas, Gluckman and Bateman) to insure that the proper diagnostic criteria have been applied, and thereby assure a heterogeneous study population.

    3. Ampligen Study Still Recruiting (Patients Cover Their Costs)
    Hunter-Hopkins Center is one of two sites in the USA currently participating in an open label study of Ampligen. Persons with CFS may qualify to receive Ampligen therapy. Details are available on the US government Clinical Trials website (ID NCT00215813). The Hunter-Hopkins program is described at www.drlapp.net/ampligen.htm. If you are interested in joining the Ampligen Study or you have more questions, contact Wendy Fallick (Research Coordinator) or Dr. Black at Hunter-Hopkins."

    To receive Dr. Lapps regular Hunter-Hopkins Center email newsletters, send an email with NEWSLETTER SUBSCRIPTION in the subject line to drlapp@drlapp.net
  13. julius

    julius Watchoo lookin' at?

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    This GSK study raises two questions in my mind, one optimistic, the other pessimistic

    First one (optimistic), does this give us any window into the state of the assays right now? Would they be undertaking this if the blood working group or someone else had not yet developed more accurate, sensitive tests? I notice that Dr Lapp mentions a similar cohort to WPI, but nothing about testing methods.

    Second question. Is it possible that they have been looking at their old vaccines and found XMRV in them, and now have a real motivation to try to squash this bug out of existence? If they could 'devise' a negative study (which they certainly could) using this cohort, that could possibly knock XMRV right off the map. They would certainly have the motivation given the sh:Dt storm that would ensue if they had been giving kids XMRV for the last half century. I dunno, is this just crazy talk.

    I think these guys will find whatever they want to find. If they want to find XMRV, then thats good for us. If they want to not find XMRV, then that's bad for us....very bad.
  14. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Is laughter good for me? I am watching the yes cartwheel man over and over again.

    Tina
  15. Dr. Yes

    Dr. Yes Shame on You

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    Mithriel:
    First we want a retrovirus, now we want to be exploited by pharmaceutical companies....
    We really have gone mad, haven't we?

    Marco

    I would personally be interested in seeing Aetna's.

    Though the idea of drug industry vs. health insurance industry is very sad. Like "Kramer vs. Kramer". Or "Alien vs. Predator".

    Bob:
    :D:D:D
  16. Hope123

    Hope123 Senior Member

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    I'm glad big pharma is involved as we need their interest in us right now. I don't think it signals much about whether they think XMRV is or is not a cause in CFS. Although drug companies are careful, they also spend a lot of money each year on drugs, studies, etc. that don't work out. We don't hear as much about these studies and in fact, drug companies are not obligated to publish the results. (See the recent drug scandals where adverse effects came to light years after the studies were done.)

    However, I hope that since the CAA Biobank is involved, CAA has a contract with GSK stating that results, negative or positive, must be published. I am glad that Dr. Lapp was clear in his newsletter about funding but the CAA should also have mentioned this in their press release about the Biobank to be transparent.
  17. fred

    fred The game is afoot

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    Yes, I am crying (in anticipation) for the insurance industry. Boo hoo.

    But I am more worried for XMRV +ve people who will not be able to get various/any type of insurance cover in the different countries of the world. Many terms and conditions exclude people with HIV. Will this be the same for XMRV? And will insurance companies apply any changes to terms and conditions retrospectively?

    Apologies if this is a digression.
  18. jspotila

    jspotila Senior Member

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    From The Association's web page:

    "Since we announced the SolveCFS BioBank on Monday, there has been tremendous enthusiasm about the opportunity to participate in this type of ground-breaking research . However, until all the required institutional approvals are obtained by all parties required to initiate BioBank-based studies, the CFIDS Association of America is not able to share information or comment on reports initiated by others about studies being planned. In the interim, please refer to our March 29, 2010 announcement about the SolveCFS BioBank and updated eligibility criteria. We hope that you agree that adhering to protocols established for confidentiality, privacy and the ethical conduct of research serve the interests of all of us dedicated to advancing understanding of CFS.

    We regret any confusion that may have been generated and we look forward to regularly sharing news about the SolveCFS BioBank and approved studies."

    I would also like to mention that researchers who use samples from the BioBank will be required to submit their findings to peer-reviewed publications.
  19. Bob

    Bob

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    lol, Dr Yes,
    when you put it like that... we really do seem to have lost the plot together, don't we! :D
    But hey, it's got to be better than being in the hands of Wessely & Co... ... hasn't it?!? :worried:
  20. serenity

    serenity Senior Member

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    i'm with ya' Fred, this worries me too.

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