The Power and Pitfalls of Omics: George Davey Smith’s storming talk at ME/CFS conference
Read about the talk that stole the show at a recent ME/CFS conference in Simon McGrath's two-part blog.
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Prostate Cancer - Dr Eric Klein enters in the debate!

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by VillageLife, Dec 21, 2010.

  1. VillageLife

    VillageLife Senior Member

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    http://www.virology.ws/2010/12/21/is-xmrv-a-laboratory-contaminant/

    On the virology blog there is an article about the xmrv contamination papers.

    Dr Eric Kline, (co-discoverer of XMRV) has left a comment, infact he's posted the same comment twice, one hour apart, in response to comments by Dr Racaniello.

    ----------------------
    Eric Klein, Cleveland Clinic -1 hour ago
    We have reported XMRV integration in fresh frozen prostate tissue taken directly from patients at radical prostatectomy that has never been put in tissue culture and believe this is solid evidence of authentic human infection . See Dong et al PNAS 2007 and Kim et al. J Virol 2008

    -----------------------

    I also noticed the NHS are reporting the XMRV contamination on there news page,

    http://www.nhs.uk/news/2010/12Decem...drome-xmrv-virus-disputed.aspx?forumid=331851

    it mentions the fact Prostate cancer may also be down to contamination.

     
  2. Cort

    Cort Phoenix Rising Founder

    Everybody is in the act now...the prostate cancer people and the ME/CFS researchers....
     
  3. illsince1977

    illsince1977 A shadow of my former self

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    Good for Dr. Klein and the other researchers who offered rebuttles in the press (or on the internet) that are referred to in other posts on PR since Retrovirology came out with the recent papers. It must be uncharted territory for researchers to have to defend themselves in a public forum other than a scientific journal. It couldn't be an easy thing to do.
     
  4. Jemal

    Jemal Senior Member

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    I cannot agree more with this comment. Very glad to see other researchers defending their work, even if it is on the internet. Also glad that Prof. Racaniello is also updating his post.
     
  5. free at last

    free at last Senior Member

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    So their may be some good counter arguments happening, but will that reflect on the NHS statement for example ? will they update that, with these counter arguments, or will they do what suits them fine, and just leave those conclusions on that website for Doctors, graduates health proffesionals, members of the public. to be veiwing, now untill next year when somethin powerful may come along to knock it off, thats a long time to be shafted like this, they really done a number on us now.The damage is immense. My thanks goes out to the press, the journal, the researchers who blew ther trumpet harder than it was capable of being blown, and now the NHS for joining in this, lets stop all this sillyness about a retrovirus being in CFS/ME patients now. Its so sad to see how easy it is to do this to us, and keep it like that. Even though good counter arguments have come. No one is interested, they have there conclusions they prefer.

    merry bloody christmas to the oh so fair system and the NHS

    I just give up i really do, i wont feel cheerful again untill a strong counter attack comes from the otherside ( Prof Meileir says our side too now ) Yeah words like counter attack do apply, its not popular with the lets be level headed about this brigade, well maybe i just dont want to be level headed about it anymore, maybe ive got to the stage where i give up caring if they want to belive where crazy militants anymore.

    Maybe it is turning into a war, and maybe they can just act like that, but make it seem like they are not turning it into a war, when infact sorry thats exactly what they are doing, and doing it oh so well in disguise.

    Infact they have been doing it right from day one, just most seem blind to this fact and are more worried about making the situation worse. well i understand that, i even partially agree with it. But i cant go on pretending to be a level headed citizen anymore. im not level headed, im angry and hurt yet again, and no amount of appealing for calm is going to change that, just The science of the caring and the truth they can uncover will.

    but if the truth turns out to be contamination, then yes i will still be distraught, but at least i wont be blaming people for this sad character assasination against us and the science of lombardi Alter/lo and others.

    It will just be the truth, however hard that will be to accept, and even the damage that it is going to cause for us all in the long term. Looking foward to what Kenny Meileir may produce in 2011, as theyve really got him fired up. I hope Alter And Judy are also fired up for the fight of the century. Because thats what it is now, a fight, i make no apologies for feeling and beliving that, desperate feelings produce desperate words. Yes Cort your right Bad Karma indeed.
     
  6. Jemal

    Jemal Senior Member

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    I really hope Prof. Meirleir has something for us. Unfortunately I think he has a habit of making claims, but not having publications to back him up. So I really hope he has some good studies/publications, because claims alone are not enough.
     
  7. Jemal

    Jemal Senior Member

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    I still believe in a XMRV -> CFS connection. Several prominent figures have come forward, giving evidence against contamination. People like Prof. Racaniello have even adjusted their initial (negative) opinion, because of this evidence. There is still more than enough hope.

    I dislike all the fighting that's going on though. "Our side" is to blame as well. I don't think a person like Prof. Racaniello for example is "evil" or anything, unfortunately he is receiving quite some negative backlash from the CFS community on his blog. I am worried this is driving more people against us and will leave us only with a couple of hardliners. It's certainly not helping with the negative view some have of our community... I don't want doctors and journalists to think that we are all angry, hysterical fanatics.

    I do understand where this anger is coming from of course. I feel lots of anger as well. We all want to get rid of this disease, before we are completely ruined by it (and yes, many of us already have ruined lives).
     
  8. August59

    August59 Daughters High School Graduation

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    Same here! I just feel like the research behind XMRV has gotten so polarized that major progress will never happen. Sure, there will be a few really great doctors develop treatment, but I will never be able to go see them or be able to afford the treatment they have.

    This disease has cost me well over $50,000 in the last 5 years. I have nothing left to put towards treatment. I also feel sure I will not make it 2 more years and not sure I want it to if it continues like it is now.
     
  9. eric_s

    eric_s Senior Member

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    Come on, don't say these things... There's so much we can do, we have not even started yet. Like i said many times, when i made my little calculation, 2 million people with ME/CFS in Europe and North America, that means 200 million Dollars or Euros per year, if we could get everyone to make a small donation of 100 USD/EUR per year. Which most should be able to afford.

    We could get so much science done with that. Build a WPI in Europe. Hire pr people, lawyers, everything.
    I'm sure if we mobilized that potential there would be progress every year and before long we would be far better off. And that's for the unlikely worst case scenario that XMRV would turn out to be without any role in CFS.

    And in case XMRV plays a role it's more or less guaranteed that governments will wake up and come to our help. This can happen fast, all it takes is for the BWG or Lipkin to confirm XMRV.

    So this is really not the time to be discouraged, even if the waiting and the up and down is taking a toll on one's nerves. It's the same for me, but we have to be strong now. Payday is coming.
     
  10. lancelot

    lancelot Senior Member

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    How about a WPI in the UK?
     
  11. free at last

    free at last Senior Member

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    Your Right Eric i know that deep down, if a appeal starts ill try to give, but have barely enough money to get from week to week now, really can just about put food on the table, but ill try. Appreciate all your knowledge you give Eric, that applies to Cort and everyone, sometimes realize i dont i do anything but show anger and fear. Ill stop, but cant help myself when i see some just saying no there not all that bad, jeez are they not ? Looks like the recent revelation in disputeing these papers seems to suggest our american friends are starting to have enough of this too. Good, go Dusty miller and co
     
  12. anciendaze

    anciendaze Senior Member

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    The people who suggested the virus is merely a laboratory contaminant have not endeared themselves to Eric Klein. This has always been the problem for deniers, they would like to deny XMRV in ME/CFS, but can't avoid sideswiping prostate cancer. The papers showing viral integration into human cells quick frozen in the operating room are a very strong answer to claims of laboratory contamination. The virus definitely infects some people. It is a real entity.

    Association with other cancers is coming. The current reactions tell you a great deal about opinions, far less about facts. Prof. Racaniello's retraction is evidence of good faith. His comment about his difficulty interpreting the papers is telling. For myself, I avoided posting comments on Monday, because I had a definite feeling there was less there than meets the eye. What the five papers have in common is the name XMRV and the word contamination. Nowhere in that issue is there a coherent theory of contamination that fits together, nor is there evidence the primary researchers on the Lombardi/Mikovits and Lo/Alter work did in fact make the mistakes attributed to Huber, or fall victim to the pitfalls of those commercial primers. They tested supplies and reagents in advance, and made appropriate use of negative controls.

    They did not use water as a negative control, as in one of the "debunking" studies. They did run tests in laboratories which had never handled mouse samples, which Huber did not do. (What about the others?)

    The sum total is a collection of anecdotal evidence and hypothetical concerns. Sequence comparison is a weak reed in the current state of ignorance.

    If the virus is a cause of prostate cancer, or even simply associated with it, there is an obvious explanation for virus found in cultured cell lines: the genes were inserted by the retrovirus, and are transcribed when cells divide. Klein's demonstration of viral integration pretty well puts paid to laboratory-contamination-only theories.
     
  13. Riley

    Riley Senior Member

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    Thank you ancient, that is the best summary I have read so far about what is going on.
     
  14. lancelot

    lancelot Senior Member

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    If you build a WPI in England, it would be called the (W)easel(P)eter(I)nsane-asylum. :sleepy::sleepy::sleepy:
     
  15. eric_s

    eric_s Senior Member

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    Yes, a scary thought.

    But seriously now, i have thought about that a bit in the last couple of days. Where would you start something like that?
    The problem with Europe are the different languages and cultures. The UK would be ideal, language wise, because every scientist in Europe speaks English. But at the moment it is "ME/CFS hell". On the other hand it might be a bold move. Plant it right in their face. A good antidote. But also dangerous, a lot of bad intentions around.

    And then a French person might not like English culture, the other way round the same, for a Spaniard it's too cold in Sweden... difficult.

    Probably you would have to find the core team of researchers and medics first and then choose the location, depending on that. Level of bureaucracy, tax law, etc. might be important too. Plus it would have to be funded through donations mainly, i guess, so the country that donates most would probably want to see it on their territory.

    But i think we will need that. If XMRV is not "it", we will need to find the real cause. If XMRV is "it", it will still be some way to find a "perfect cure", so some work to be done.
     
  16. lancelot

    lancelot Senior Member

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    You already have a very nice place set up by the best european ME doctor, KDM, at brussels university at belgium. All europeans should support KDM into expanding it into a Center for Excellence. KDM is the man that can!!
     
  17. eric_s

    eric_s Senior Member

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    Yes, that might not be a bad plan. I personally don't have experience with DeMeirleir, so i can't judge his work, but certainly he has a lot of knowledge and connections, too.
     
  18. lancelot

    lancelot Senior Member

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    He won me over with all his great research published in the Journal of Chronic Fatigue Syndrome which he was the editor of. i bought his issues and he clearly did some tremendous work into uncovering many of our problems that can be explained scientifically and he has a decent treatment plan for what is known at the time. he is constantly evolving his treatment and into finding the cause still. he is open minded and will have no problems saying he is wrong(h2s) when something right comes along(xmrv). i don't know what he charges, but he is clearly the #1 ME physician and researcher in europe. he's truly a good guy in the ME/CFS community right up there with the best. KDM makes Teteilbaum look like a clown.
     
  19. eric_s

    eric_s Senior Member

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    My problem with what some of these CFS docs do is that they seem to charge a lot of money and prescribe a lot of drugs for a long time. If their treatments have success, then that's ok with me, at least the drugs, the money is another topic, but i fear that up to now, their rate of success has not been very high. But i don't have numbers, so i might be wrong. I don't like the idea of taking sick and sometimes poor people's money and hurting their health with the side effects of drugs, while not improving them.

    But then on the other hand, people are looking for treatments and if you don't try you will never find something that works. But i would prefer trying treatments in controlled clinical trials, if that's possible. So science can profit from the results as much as possible.

    Certainly his and others' work has produced a lot of knowledge about ME/CFS and i don't mean to bash him or anyone else. We have to be grateful there were some doctors really interested in us.
     
  20. justy

    justy Donate Advocate Demonstrate

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