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SolveCFS Biobank Beginning

Discussion in 'General ME/CFS News' started by jspotila, Mar 29, 2010.

  1. jspotila

    jspotila Senior Member

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    I'm going to get clarification on this from staff, because this is not how I read the sentence in question.
  2. fred

    fred The game is afoot

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    Is type of onset the only or most relevant variable that can be used to produce 'tighter cohorts'?
  3. Hope123

    Hope123 Senior Member

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    For the record, Peterson stated during last years CFSAC meeting that a weakness of prior studies of CFS was the lack of emphasis on the flu-like aspects of the illness so I am glad that the CAA is focusing on this in their criteria. I've jumped on the CAA for other reasons but not on this one.
  4. CBS

    CBS Senior Member

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    Fred,

    The CAA has used a number of different and important "variables" to keep the cohort clean. They provided their own list of qualifications (such as the requirement of an acute onset) in addition to the requirement that subjects have to meet either the Fukuda or Canadian Criteria and they were also very clear that for both Dx Criteria there were several disqualifying conditions. They have also significantly limited the list of doctors from which they are willing to accept the CFS diagnosis.

    This will be, by far, the most tightly and explicitly defined CFS cohort ever. I know we all want to feel represented and being excluded can create some angst. However, I can guarantee that there are enough of us suffering from this disease that - at this time - excluding as many potentially confounding conditions will only help everyone.

    Shane
  5. fred

    fred The game is afoot

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    I have no agenda with this question. It is a simple one which remains unanswered: is type of onset the most effective limiting variable?
  6. CBS

    CBS Senior Member

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    Hi Fred,

    I had not assumed an agenda. My apologies if I left that impression. My response was intended to emphasize that, at least from where I sit, there isn't one most effective limiting variable but rather the cohort needs to be well characterized and explicitly defined and that involves some tough decisions. In this regard I think the CAA did an admirable job (and as has been stated by myself and others, when resources are available an expansion would be most welcome).
  7. gracenote

    gracenote All shall be well . . .

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    I don't think "flu-like aspects" and sudden onset are the same thing. I have a "flu-like illness" but not sudden onset (and I don't think I'm the only one). That's the point I've been trying to make.

    Just saw your post Shane.

    "Sudden onset" just seems arbitrary to me. This particular criteria does not seem relevant to keeping "the cohort clean." It's based on patient report and not on any measurable laboratory findings.

    Why not begin to use criteria like these that have been "reported by researchers from all around the world," that Dr. Klimas has "reported over and over"? And that "most everybody who has looked at this has reproduced those particular findings"? Why not these types of criteria?

    And we're not talking about a single study, or several studies, but a BioBank from where all studies will get their samples. I think the cohort would be better defined by Peterson's "certain things stick out" criteria.

    My continuing difficulty with this has nothing to do with angst (who me, feel left out? :eek:), but with the quality of the data that will be produced by these studies. I think they're starting off on the wrong foot.

    Just my opinion. And (for now) I'm sticking to it. :innocent1:

    If I'm mistaken, I will learn and sing everybody this song. ;)


    [​IMG]
  8. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Wow! I learn so much from you, Gerwyn! Thanks.
  9. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Oxford Definition is Invalid. Period.

    Excellent point!

    I disagree strongly.

    It is hard to be anyone involved in ME/CFIDS in any capacity! I think CAA has done a great job with the biobank and the criteria for inclusion. I don't think there is really anything to criticize about it (except it would be incredibly great if the criteria for inclusion were each patient meeting 'both Fukuda and Canadian definitions' rather than '[Fukuda or Canadian] + PEM').

    That said, it is inexcusable for CAA or its scientific director to give any credibility whatsoever to the Belgian study. Moreover, it should be a top priority for CAA to expose what a fraud the Oxford definition is. The formulation and use of the Oxford definition continues to be the biggest problem in the science of ME. Additionally it is Exhibit A in the case against Wessely et al. for scientific fraud.

    Do I sound like a broken record? Well, imitation is the sincerest form of flattery, Cort. I think a little of your OCD/ autism has rubbed off on me. (is it possible for XMRV to rub off on someone? OK, truth be told, I was like this before I 'met' you Cort.):Retro smile:
  10. jspotila

    jspotila Senior Member

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    I double-checked with the office about this question. Here is clarification of the criterion:

    CFS initial presentation characterized by one of the following: a flu-like illness, an acute (48 hours) onset or a subacute onset (over a period of up to four weeks).

    A potential BioBank donor needs one of those three options (in addition to meeting the other criteria, of course). I apologize for any confusion caused by the original wording. This new language will go up on the website, as well. Thanks to Brown-eyed Girl and the others who asked for clarification!
  11. CBS

    CBS Senior Member

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    Gracenote, I read this in the way you did. I've had long standing and fluctuating flu-like aspects over the years but the day this all started for me, I had one hell of a lymph node enlarge (according to one doc it was "plum-sized") within a matter of hours and 24 hours later I was laid out with a 104 degree fever. Definitely not one in the same.

    I probably wouldn't use the term arbitrary myself but it was definitely a judgment call and there is plenty of room to argue for this as an unnecessary exclusion.

    Gracenote - I'm glad you're sticking to your opinion. I've always found it well considered and enlightening (perhaps especially so when you're disagreeing with me). I'd love to hear you sing some day but no need to do so on this issue no matter what happens (and as I stated earlier, I personally expect that down the road the distinction will prove to be of minimal use).

    I don't know how many subjects that the CAA is finding meet their criteria. I did find this bit particularly encouraging:

    I wonder what percentage of the BioBank sample will consist of patients with "abnormal NK cell laboratory results?"

    Jennie, Does the CAA have a target or limit to the number of patients that will be included in the BioBank? I imagine they must if for no other reasons than minimum statistical power and financial constraints. And secondly, are there contingency plans if the minimum number of necessary patients is not met using the original criteria.
  12. jspotila

    jspotila Senior Member

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    Ultimately, the only limit on the number of patients in the BioBank will be the Association's ability to afford it! Response to the announcement this week has been very strong, and so I don't think we are in danger of not having enough patients using the current criteria. More details about this whole process will be addressed in the upcoming CFIDS Link and a webinar (don't have a date for that yet, sorry). I don't think I can comment more specifically on the targets, etc. until after all the required institutional approvals are obtained.
  13. CBS

    CBS Senior Member

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    That was quick! Thanks.
  14. CBS

    CBS Senior Member

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    Just to be clear here, the CAA is talking about the initial presentation.
  15. Orla

    Orla Senior Member

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    Hi Jenny, thanks for that clarification. That is much clearer now.

    And Justin and all, just to clarify I think the Oxford Criteria is rubbish and should never be used. I found Vernon's comments on the criteria disappointing and worrying (in her comment about the Belgain trial), which is why I was pleasantly surprised when I saw the strict entry criteria for the biobank. Part of my thinking on the biobank is that I would hope that it might mark an attitude of looking for more stringent criteria in research, I think it should be encouraged. It might also encourage other researchers to adopt more strict criteria (even if they don't go with exactly the same model). I think it is great that PEM will be a requirement, as I think this should be a requirement for all ME/CFS studies.

    The US biobank might also serve as an example for others thinking of establishing a biobank (I known they were looking into something like this for the UK).

    And I'd better shut up now for the night before I stamp on anyone else's toes!

    (Fred I don't have the energy to answer right now, but will think about what you said.)
    Orla
  16. gracenote

    gracenote All shall be well . . .

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    Thanks jspotila. I appreciate you sorting this out for us.

    Just in case, I'll start practicing that song now. I've realized, belatedly, that it has no words. I may end up having to yodel it. That would not be good.
    :eek:
  17. CBS

    CBS Senior Member

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    I do hope that we'll all be yodeling together very soon (and yes, I did read in the Dr. Yes thread about men not being able to yodel - or something along those lines :sad:)!
  18. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I thought ME/CFIDS always presented as a flu-like illness (even when gradual onset).
  19. _Kim_

    _Kim_ Guest

    Oh CBS, men are quite capable of yodeling ;)
    We just don't want to watch
    male-orgasm..jpg

  20. jspotila

    jspotila Senior Member

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