Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Email - Dr Alter

Discussion in 'XMRV Research and Replication Studies' started by VillageLife, Jul 1, 2010.

  1. VillageLife

    VillageLife Senior Member

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    Statement from Dr. Harvey Alter, transmitted by the NIH Office of Communication and Public Liaison:

    "Our paper has not yet been accepted for publication. My colleagues and I are conducting additional experiments to ensure that the data are accurate and complete. Our goal is not speed, but scientific accuracy." Harvey A...lter, M.D


    Please consider emailing Dr Alter, explaining your concerns.
    This paper should of been published, because it hasn't we can argue that the CDC paper should be looked at again.

    A quote from virology blog,
    http://www.virology.ws/
    are they trying to publish only the result they believe is correct? but it ignores the very important fact that science is self correcting. Scientists are humans, and they make mistakes. But eventually the right answer will come to the surface. And that is why PNAS and Retrovirology should respect peer review, publish the XMRV papers, and let science correct itself.



    Dr Alters email address:
    harvey.alter@nih.gov
     
  2. taniaaust1

    taniaaust1

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    Esp. not right that the negative paper has been allowed now to go throu.. while the postive ones arent. The whole thing is making me feel ill.. is there going to be another big cover up like the 1980s.
     
  3. Esther12

    Esther12 Senior Member

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    I a mass of e-mail really going to be helpful here? If he gets 50 e-mails saying the smae thing he might just ignore them all. If one of hte people who has already -emailed gets a reply I'm sure they would share it.
     
  4. One has to assume this is happening against Dr. Alter's will. It might not hurt to hear from the very population his science is championing.
     
  5. Alexia

    Alexia Senior Member

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    I also don't think that sending Dr. Alter an email will solve anything. He must have a reason to do what he's doing.
    I just don't understand why the CDC and the NIH don't swap samples that would clarify a lot of the issues I would say..
     
  6. pollycbr125

    pollycbr125 Senior Member

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    I agree Esther mass mailing and telephong is just going to get folks backs up and could do more harm than good . Let those who have influence like the article by Vincent Racaniello do their work . All our emotions are running high at the moment and sometimes it is hard to take a step back in order to think clearly . I seriously err caution on this.It will only paint us in a bad light and fuel the 'oh we are all obsessive nutcases ' brigade .
     
  7. VillageLife

    VillageLife Senior Member

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    I dont see how it will paint us in a bad light, I wasn't saying be un kind to him, I just thought we should perhaps contact him telling him our concerns.
    Look our lives are being destroyed here, I'm not happy to sit back and do nothing.
     
  8. Esther12

    Esther12 Senior Member

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    Wow - that's a lot of typos.

    @villagelife - I know it's frustrating, but I'm not sure there is much useful stuff we can do at the moment. Maybe it would probably be better to write to politicians than scientists if you want to try to exert some pressure?
     
  9. jspotila

    jspotila Senior Member

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    Please don't email Dr. Alter. He knows the gravity of the situation, and obviously any research scientist wants his/her paper to be published in the best possible journal. Patients emailing Dr Alter accomplishes nothing positive, in my opinion.
     
  10. Mark

    Mark Acting CEO

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    Agreed, it's rather people like presidents you want to be asking about this sort of thing, Dr Alter is probably under considerable enough pressure already...(hmm)....thanks, support and encouragement to him though, perhaps if his 'extra experiments' find the explanation why the CDC couldn't find it (perhaps eg testing their samples) and he points out what's wrong with them next week, all this censorship of science could be forgotten in the excitement...
     
  11. jspotila

    jspotila Senior Member

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    Additional info on the Alter statement from the Association's FB page:

     
  12. VillageLife

    VillageLife Senior Member

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    email him with what ever you want to say, or dont email him. I just thought people should know his email address and they have the option to do with it what ever they want.
    :hug::hug:
     
  13. pollycbr125

    pollycbr125 Senior Member

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    Sorry jspotila but this is turning into a farce posting little dribs and drabs on facebook is not good enough. We need official statements of substantial length to explain the exact situation as it stands at the moment from all parties involved . This is becoming extremely frustrating for patients and my worry is that this will make some patients relapse badly . Everything is up in the air with nobody really knowing what the hell is going on .

    this is not aimed at you personally please do not take it that way , but I am in contact with several patients and there are patients in floods of tears at this moment in time , patients becoming severly depressed , I am seriously concerned that the lack of information it is putting patients at risk.
     
  14. hvs

    hvs Senior Member

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    Well, we always knew this day was coming (I suspect others within the DHHS saw it coming, too--hence the leaks). We always knew the CDC study would exclude diseased people. Doesn't make it any funner. And it was fun to hope, briefly, that the good-faith study from Alter would precede the CDC one.
     
  15. garcia

    garcia Aristocrat Extraordinaire

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    I agree with you. It's the job of our advocacy organizations to make sure that this paper gets published as soon as possible. We should be writing to them.
     
  16. Adam

    Adam

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    Good point.

    The CDC paper was always going to be a blank given they set off way back in October 2009 when scientists thought they could snag XMRV with a butterfly net. The likelihood is NIH started later and got their positive- negative samples sorted out before they kicked off their work.

    I hope everyone can take a chill pill and not get stressed. I hate to think of people getting distraught over this. XMRV is not going away. If you thought it was there yesterday it's still there today. No government can ignore it when there is the blood supply to consider and dedicated scientists like Judy M kicking up stir on our behalf.

    Please everyone take a step back for your own good. And yes, if you need to do something then badger the CAA and the MEA and get them to get the answers to what is going on.

    All the best to everyone of you.

    Adam
     
  17. VillageLife

    VillageLife Senior Member

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    I didnt mean any harm when I said lets email Dr Alter, I guess its wise to do whats right and keep calm.:rolleyes:
     
  18. Bob

    Bob

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    Polly, I sympathise with your contacts, I really do... I know how desperate we all are for answers...
    But there were never going to be any quick answers or quick fixes relating to XMRV and ME/CFS...

    When the original Science paper came out, I thought that it would probably take 5 years before we got any firm answers... Although, in my more optimistic moments, I thought that we might be lucky and it might take a couple of years to make some substantial progress and get some answers.

    Even if XMRV is confirmed to exist in CFS patients by other replication studies, which I'm hopeful for, then that is not the end of the story...

    First they will need to do wide-scale studies, on a large patient population base, to understand exactly how many of us are infected. This would probably take a couple of years to set up and complete.

    Then they will need to see if XMRV is the cause of CFS (which hasn't been proven yet - it might not be), and this might take a couple of years to set up a wide scale study like this... along with millions in funding... and no guaranteed answers.

    And then they will need to test various anti-viral drugs which can take 5 years for a medicine to get full approval, seeing as none of the existing anti-retrovirals will necessarily work on XMRV.

    Unfortunately, we are all caught up in the scientific process, which we don't usually see... usually it goes on in the background without us knowing about it... but this is exactly how science usually works...

    Unfortunately, even the CDC are acting just like scientists usually do... conservative scientists, or establishment scientists, or scientist who have a reputation, or income, to protect will put out papers to defend the status quo, and they will get away with it because the new science is the 'radical' position and is therefore easily challenged... it is far harder to challenge the existing science, like the WPI are doing.

    I'm saying this, not to be pessimistic, or to bring gloom or negativity to the forum, but I thought I should point out how this process works, because there's not going to be any quick and fast answers.

    If your contacts are getting really distressed by the developments, then maybe you could suggest that they think about taking some time out from the news feeds. Yes, I know, it's easy to say, and not so easy to do... I know that from experience! But it's a serious suggestion, if you are worried about people experiencing relapses. I find, personally, that if I get away from the forums for a few days at a time, then I can forget all about the chaotic developments, and distract myself with other stuff, and it is easy to catch up again by looking at the forum headlines. (Hope this doesn't sound patronising - it's just supposed to be some helpful feedback.)

    Even if this scientific process goes exactly as we would like it to, and XMRV is quickly proved to be the cause of ME/CFS, then I would think that it would still take at least a couple of years for there to be any treatments available to some of us... and very possibly nearer 5 years... We don't know if any existing drugs would work successfully to treat XMRV, and even if there were, they would still need to be fully tested which would take a couple of years. If brand new drugs were needed then they would take nearer 5 years to gain official acceptance.

    I remain cautiously optimistic, myself... But I have to keep reminding myself that XMRV might not be the answer we're all hoping for... but I really hope it is, and I would make a guess that it is at least responsible for a subset of ME/CFS patients.. But there's absolutely no evidence yet to show that it is a cause of ME/CFS.


    I agree with Adam... and he expresses it better than I do.
     
  19. pollycbr125

    pollycbr125 Senior Member

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    Bob I have been trying to help folk all day but this is getting serious now we need proper clarification of the exact situation at the moment . Like i said little dribs and drabs of info is doing more harm than good . An official statement covering all points and issues raised by this needs to be released . If not patients are getting confused and upset as the internet has been like chinese whispers today one minute one thing is said next minute something else I am sorry but it really is not good enough . Official statements from all parties involved are needed ASAP. After the releasing of the CDC negative paper I think it is imperative that we have some official word on this .
     
  20. Cort

    Cort Phoenix Rising Founder

    I think all we have are little drabs unfortunately.

    I think Dr. Alter has very good personal reasons to get out his study. His name is all over the Internet in a not very complimentary way. His peers are surely wondering what's going on. He's apparently withdrawn his paper for publication...for his own sake he needs to be able to verify his work and come up with a positive result. I'm sure that he's sweating bullets right now - no researcher wants to be put in the position where his work is publicly disavowed by his own funder....He has a lot of good reasons to make this right.
     

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