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Speak out about the Reeves definition delaying XMRV/XAND research

Discussion in 'XMRV Research and Replication Studies' started by The Phantom, Oct 26, 2009.

  1. Dolphin

    Dolphin Senior Member

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    I understand (to some extent anyway) about research methodologies.

    But you appeared to be accusing us of not doing enough for the people who don't have XMRV.

    I personally, and I imagine most people reading this thread, won't be doing any "random forest prediction" models on data any time soon.

    One can be depressed under most definitions for CFS. Just most definitions exclude Major Depressive Disorders with melancholic features (possibly the severest form of depression). This is to try to help get consistent results in research so you are not comparing apples and oranges. The CDC empirical/Reeves definition allows people who just have depression to satisfy a CFS definition.

    I don't think mixing people with CFS with people with depression (but not CFS) is the way to go for studying non-XMRV cases. I think studying the non-XMRV CFS cases on their own would be more productive.
  2. PoetInSF

    PoetInSF Senior Member

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    I'd generally agree. However, it is all SPECULATION at this point. That's why we need CDC to do their own study first. If they don't, we may end up leaving up to 3 million people out of a possible treatment, or waste money on diagnosis/treatment for XMRV on them. And, if xmrv is indeed proven to cause a subset of CFS, then they will be split and given an official disease name whether it is XAND or something else. Then, the research will have to continue for the patients remaining in the CFS pool.

    That said, I'd be willing bet money that CDC study will also indicate high correlation between xmrv and CFS if WPI study is true. 67% or 95% is stupendously high number and there is no way CDC study will show insignificant correlation unless: A) CDC is trying to actively deny CFS or B) WPI study is false. Frankly, I think too many people hold grudge against CDC and paranoid that there is a conspiracy by CDC to deny CFS. Being vigilant is one thing, trying to stop CDC from doing their own study will only hamper the progress.
  3. _Kim_

    _Kim_ Guest

    Reeve's Disease - I'm peeing my pants:eek:
  4. Summer

    Summer Senior Member

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    Just priceless!!! :D
  5. Dolphin

    Dolphin Senior Member

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    Here is an extract from Leonard Jason's paper on the Reeves criteria.

    This is where the looked at people with CFS and also people with Major Depressive Disorder who were specifically chosen not to have CFS. But 38% came out as satisfying the Reeves' criteria for CFS:

    I can see the point that it might not be the end of the world if the empiric/Reeves' criteria is used for the XMRV research if the test is so good and perhaps it might help to bring down that definition.
  6. _Kim_

    _Kim_ Guest

    Watching as Wanda's nervous right thumb keeps moving faster as the CFS patient on the phone talks about her heartbreaking story.
  7. anne

    anne Guest

    Yes, the CDC is *NOT* going to find XMRV. Reeves already told us that. the sample they are working with does not actually have CFS. So waiting on their study will give us nothing. We can wait on the research of people with real CFS cohorts, yes. But the CDC is not going to help us, with the current leadership.

    But tomk's point is terrific. If we get other replications and the CDC can't reproduce it with the sample, then there's something wrong with the sample.
  8. anne

    anne Guest

    Well, Annette said it was the first she'd heard of it, so they may not be. I hope someone does some more digging.
  9. anne

    anne Guest

    As long as that new authority does the research on people who actually have CFS, but this morning they said they'd be using the Wichita sample. With any luck, they can be persuaded to change.
  10. InvertedTree

    InvertedTree Senior Member

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    I'm on the westcoast and coming into this late. sorry. does anyone know the woman's name who just spoke about patient's not having a doctor?
  11. _Kim_

    _Kim_ Guest

    Terri, I think that was Rebecca Artman who spoke about patients not being able to find doctors to treat CFS
  12. InvertedTree

    InvertedTree Senior Member

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    Thanks Kim! It's my first time watching-it's like coming in late to a movie. :eek:
  13. anne

    anne Guest

    Okay, Levi. Thank you. I do agree. Other people will replicate the study using actual sick people. Science will out.
  14. V99

    V99 *****

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    Hi to everyone.
    This is my first post.

    I think Jonathan Kerr will do it properly.
  15. _Kim_

    _Kim_ Guest

    Kerr is using patients from Dr. Enlander's patient population (NYC) as well as from the UK. One of Enlander's patients is on this forum and if remember correctly, she was going today to get her blood drawn for the study. Yes, Kerr is a good candidate for replication.
  16. PoetInSF

    PoetInSF Senior Member

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    Who are these people who actually have CFS? Those with xmrv? Do the xmrv-cfs study on people who actually have xmrv? You people talk as if CFS is objectively testable/diagnosable disease. It is not. It is all empirical till they find some biomarker that closely correlate to CFS as defined currently, be it Canadian or CDC. The studies will tell us about either/both the viability of xmrv as the biomarker and the validity of definitions. Hang in there, suspend your paranoia for now and let the scientists do their work.
  17. Marylib

    Marylib Senior Member

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    Pardon me, Poet in SF, but are you saying that a CFS diagnosis does not exist? Do you mean that it is not possible to diagnose any illness without a biomarker?
  18. shrewsbury

    shrewsbury member

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    Jeez poet ... I think you raise good points at times, but calling people who don't share your perspective paranoid may not be the best way of conveying your ideas and getting them taken seriously.

    in my tired, blunt manner: to me devil's advocate, difference of opinion, scepticism and lively debate are all good; disrespect is not

    do hope I haven't offended you and that you stay on the forum and continue to contribute

    islandfinn:)
  19. Marylib

    Marylib Senior Member

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    Well said, Islandfinn. I hope Poet will continue to contribute. But this forum has maintained such a lovely tone of respect -- even when the discussions are heated. And it would be good if we could manage to keep it up.
  20. Dolphin

    Dolphin Senior Member

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    There is also something called "face validity" in science e.g. when analysing questionnaires (do they look like they could be useful).

    The Reeves criteria have very poor face validity for CFS. Rather than keep telling us we are paranoid, maybe read the definitions and decide if you would say that's a good way to pick CFS.

    I have read them and think the Reeves criteria are a joke.

    Of course everyone in society is worthy of study. But the Reeves criteria aren't a good place to start if you are going to have two groups XMRV+ CFS and XMRV- CFS. With the Reeves criteria, the XMRV- CFS is going to be a huge mess - finding the proper CFS patients (e.g. the ones who have an abnormal response to exercise) in that will be like finding a needle in a haystack.

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