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Graham McPhee spells out some of the cold, hard facts about the dismal state of ME research and politics, and has some suggestions as to what we can do about it ...
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Negative XMRV CFS study with Ila Singh's name on it (University of Utah)

Discussion in 'XMRV Research and Replication Studies' started by Jemal, May 4, 2011.

  1. Angela Kennedy

    Angela Kennedy *****

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    IVI, the fact you are using the word 'proof' now in parentheses indicates you understand that use of the word previously was problematic, so I'm pleased about that.

    Alex appears to have been using the Popperian context of falsifiability and disproving in the way I said, so I stand by that.

    What I think you have a problem understanding is that many people here are not latching onto the WPI as proven until otherwise disproven. What many people want to see is the science pan out until the WPI's claims are correctly disproven, or until enough evidence accrues to enable a reasonable prediction it is correct, and that XMRV is most likely to cause ME/CFS, in which case the possibility of treatment then becomes available.

    To take your CBT/GET example. IF there was plausible evidence that CBT/GET helps anybody with ME/CFS, people would be taking up that offer. They could not expect 'proof'. The incoherence and implausibility of the claims, followed by the poor empirical adequacy, that CBT/GET helps people with ME/CFS (actual ME/CFS now- not metaphorical fatigue!) is what makes people not want CBT/GET.

    Your use of the word proof is not correct because you've been misrepresenting (miscontruing, probably) what many - possibly most- people in this community know about science, the issue of CBT/GET and about the whole saga of XMRV. You think they're all emotionally supporting XMRV- which they are not. This may be because of the way the community is being misrepresented by her majesty ERV and the Bad Science mob. ERV believes its her job to educate the plebs that XMRV has nothing to do with ME/CFS - her attendance on the BS forum shows this- which makes her an idiot and unable to grasp the scientific process.

    The ME/CFS community is mostly waiting for the science to pan out- free from politics- and for good science to prevail. If they don't like psychogenic explanations, it's because they are implausible- products of badly done 'science'.

    But none of this can adequately be explained by claiming 'proof' is needed. Most people in this community have become only too aware of the problems of that word when applied to the scientific process.
     
  2. Navid

    Navid Senior Member

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    Also ppl have tried GET/CBT and either not been helped or had their conditions worsen under GET.....ppl are ready to try just about anything if there is even the slimmest chance it will help....CBT/GET has proven itself useless in fighting ME/CFS.....not the point of your discussion but the reality of treatment options....and what ppl will try.
     
  3. Bob

    Bob

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    I thougth this was very interesting in Cort's Buzz entry of 16th April...
    It would be interesting to understand it all better:


     
  4. Dan_USAAZ

    Dan_USAAZ

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    Wouldnt the type of contamination described by Dr. Singh cause the same risk of contamination for controls as well as patient samples?
     
  5. Bob

    Bob

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    One would have thought so... Singh considered this and commented that she thought it was likely due to the amount of handling that each sample received... That the patient samples would have been handled more than the control samples... But this seems like a rather weak argument to me, especially as the WPI say that have tested, retested, and retested again for contamination... I imagine that the WPI put negative control samples through their equipment and through the complete testing procedures, to see if the controls will pick up any XMRV contamination. That seems like an obvious basic thing to do.
     
  6. Cort

    Cort Phoenix Rising Founder

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    Replication Needed - Racaniello on The Singh Study

    Racaniello believes a 'broader replication study' is needed and thinks there's a limit to how much exact replication is needed.. (but where to draw the line????:confused::confused::confused:)

    http://www.sun-sentinel.com/health/ct-health-chat-viruses,0,3358676.htmlstory

     
  7. liquid sky

    liquid sky Senior Member

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    Racaniello uses a completely ridiculous argument saying, "you cannot replicate the physical location of the study." He knows what constitutes a true replication study and it does not involve using your own newly constructed tests that have not been proven to find xmrv in any person.

    These 0/0 studies are getting really old, a constant shell game. Do these people want to find it?
     
  8. Jemal

    Jemal Senior Member

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    I do think many of these scientists want to find it... but they want to use their own methods or old methods. And that's the problem. One thing I have learned is that many of these scientists have egos and they want to make discoveries for themselves, not always build on what others have already found.
     
  9. Bob

    Bob

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    I agree with Racaniello that an exact replication study is not practical.

    There are so many variables at play that it is impossible to replicate everything.

    For example, if a near-replication study was carried out, that had nearly everything identical to the WPI's preferred procedures, and we all agreed that it was a good study, but then it came up negative, then I'm sure that we'd all be looking for the one small thing that they didn't quite get exactly right.
    But all our hopes would have rested on that one replication study. I don't think it would be helpful.

    I think that, instead, it will be the evolving wider body of research that gives us a broader picture of the facts, and a better knowledge about XMRV. It's a very slow process, but we are slowly developing a picture about XMRV. It's just not happening as fast as we'd like it to.

    As an example of the evolving developments, the CDC now appear to accept that XMRV is a wild human virus, which they are now able to detect in some prostate cancer patients. They also acknowledge that they aren't able to detect XMRV in the blood of prostate cancer patients due to the low copy numbers. This came about because they did their own research, and not a replication study.

    But anyway, we also have the best possible replication studies approaching... The WPI and Lo are participating in the Lipkin study, which will effectively be two exact replication studies.
     
  10. liquid sky

    liquid sky Senior Member

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    I'm looking forward to those studies too, Bob. It is a shame that egos get in the way of science. Two years may not seem like a long time to a healthy person, but there are a lot of really sick people trying to hang on through this process.

    There are some good conferences coming up. I hope we will get more info from these. Some of the titles appear to show progress. I am interested in the one where they will release the results of the study on Rituxan in PwME.

    I do think looking for xmrv in ME needs to move into tissues also. The fact that they can find it in prostate tissue, but not blood shows that would be a logical progression.
     
  11. Sean

    Sean Senior Member

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    This is an important point.
     
  12. free at last

    free at last Senior Member

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    This observation is very important, and backs up the monkey studies lack of detection in blood. theres only one problem. JM found it in the blood rather easily compared to what we learned with the monkeys. and what the CDC are learning. If that anomaly could be explained well, then im sure the 0/0 studies really could be missing this virus. But how to explain that anamoly ? it seems a rather difficult stretch. Anyone have any ideas ? I know JM talked about testing certain times of the day. because sometimes the virus showed up, sometimes it didnt. But of course all the 0/0 studies would be unlikely to miss ALL THOSE TIMES surely ? It has to be something else doesnt it ?
     
  13. ikke2001be

    ikke2001be

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    Hi,

    I was with KDM yesterday, and he's coping with the same problem. All of his blood samples are sent to VIP in the US for XMRV testing, and still quite a few come back negative (serology and culture), although the cytokine, chemokine profiles give a pretty good indication of XMRV being present. That's why he has started taking stomach biopsy's, which then turn out to be positive for XMRV in 70% of all samples. So the step to tissue samples has been made, and turns out to be more reliable then blood.
    Just wanted to let you guy's know. Also he'll be making a statement about this tomorrow at the conference.

    Regards,
    K.
     
  14. Enid

    Enid Senior Member

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    Looking forward to that K - hoping the Conference will resolve the detection problems found all over.
     
  15. ukxmrv

    ukxmrv Senior Member

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    Free at last,

    One of the blood working group reports showed that it was the testing day after blood collection that seemed to be important. It was the 2nd day (I think) that showed the positive results. Yes, the 0/0 studies if they all started testing on day 1 then it could explain the difference.

    IKKE, I'm off to the conference tomorrow and looking forward to hearing the news. As I remember KDM was freezing his blood samples and sending them in batches to VIP dx?
     
  16. ikke2001be

    ikke2001be

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    That is correct.
    The nurse, Jan confirmed this yesterday.

    K
     
  17. Bob

    Bob

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    That's very interesting...
    By 'KDM', you mean Kenny De Meulier?
     
  18. acer2000

    acer2000 Senior Member

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    I actually have the exact opposite opinion. Its often easier to replicate someone else's work exactly than to come up with your own methods. Thats why its so annoying that it hasn't been done.

    If there weren't any discrepancies between the results, it would be one thing. But there are. Which makes reducing the number of variables changed from the original study to "none" - and then moving forward the only real way to figure out what is going on.
     
  19. Cort

    Cort Phoenix Rising Founder

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    ]

    If it comes down to you have to test for it at certain times of the day....actually it will never come down to that point...there's no virus that you have to come in at 8 am in morning or you won't find it type of thing. PCR tests are so sensitive they can find ANYTHING.....

    It was readily found in the blood in the Lombardi study and it needs to be found in the blood in the others before the scientific community really digs anywhere else I imagine.
     
  20. Cort

    Cort Phoenix Rising Founder

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    I think that's where we are and you're right they would have saved alot of time and money if they had tried to really replicate it from the beginning. I think that they thought they would validate it quickly using other means and the field would move on. So now they are finally replicating just about everything. Too bad it took so long....
     

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