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What is the CDC CFS program doing? Powerpoint presentation to CFSAC meeting useful.

Discussion in 'General ME/CFS News' started by Dolphin, Jan 21, 2012.

  1. Dolphin

    Dolphin Senior Member

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    This file http://www.hhs.gov/advcomcfs/meetings/presentations/cdc_cfsac_activities_20111109.pdf has been around a while. But not sure if it has been mentioned much. It is the Powerpoint presentation by the CDC to the last CFSAC meeting (Nov 2011).

    I just read it - it can be read very quickly.

    It contains information on different CDC initiatives including some I wasn't aware of (I never watched/listened to the Nov 2011 CFSAC meeting nor have I read the meetings so far).

    For example:

    Production of new CME courses on track for 2012
    - CFS: Clinical diagnosis and management .Team: J Jones, N Klimas, L Bateman, A Vincent, C Lueckte
    - CFS and Sleep .Team: R Boneva, B Natelson, L Bateman, F Togo, W Moore

    It can be read quickly, as I said, so somebody can quickly see if there is stuff they weren't aware of.
     
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  2. oceanblue

    oceanblue Senior Member

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    Thanks, Dolphin.

    Issued three contracts, clinical assessment of CFS:

    - Beth Israel Medical PI, B Natelson
    - Neuro Immune Disorders PI, N Klimas
    - Open Medical Institute PI, A Koglelnik, D Peterson, C Lapp, L Bateman, R Podell

    I'm no expert on the CDC but to see names like Klimas, Peterson, Bateman and Natelson on clinical assessement and education looks like progress to me, and a step away from the Empiric criteria.
     
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  3. Dolphin

    Dolphin Senior Member

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    Yes, it is good, although Jennie Spotila pointed out on Twitter that there can be a difference between a grant and a contract so that these will be more restricted and are controlled by the CDC. So hopefully the CDC won't "misuse"/misrepresent the data in some way. But does look good.
     
  4. oceanblue

    oceanblue Senior Member

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    More info from the Research 1st website:
     
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  5. Ember

    Ember Senior Member

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    Dr. Unger discusses the contracts here: http://www.hhs.gov/advcomcfs/meetings/presentations/11082011.html (see CFSAC November 9, 2011 10:45 am - 1:15 pm at approximately 1:00 on the video).

    She says that the CDC will need at least a year to collect data from their clinical colleagues and possibly engage people that do not actually have contracts to discuss a process for revisiting Fukuda. Any subsequent meeting of experts, she says, will be prefaced by committees and pre-meetings, posting and comments, discussion and dialogue because everybody needs to have a voice in what the final product is.
     
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  6. WillowJ

    WillowJ Senior Member

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    Thanks for the information. :Retro smile:

    does anybody know who C Lueckte is?
     
  7. Snow Leopard

    Snow Leopard Senior Member

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    No idea, a Google search makes me think it it might be a typo, it isn't a common name.
     
  8. Bob

    Bob

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    It's 30 years too late, but it does seem like a move in the right direction. Am I too easily pleased or does this all seem genuinely encouraging?
     
  9. Dolphin

    Dolphin Senior Member

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    While I prefer Unger to Reeves, I recall some comment that they are going to try to prove that the (so-called) empiric criteria really aren't that bad. I think this is likely to be very selective use of the data.
    They are in an awkward situation as still have studies in the pipeline done on "empiric" criteria patients. I don't think they will want to bash it too much. We shall see.
     
  10. Bob

    Bob

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    OK, thanks Dolphin... I won't get too excited then... Like you say, we shall see...
     
  11. oceanblue

    oceanblue Senior Member

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    Do you know where that was said, and when? I got the impression that Unger was trying to cautiously move away from it e.g. pointing to the value of using standardised instruments in diagnosis, without actually endorsing the particular scales/thresholds used in the Empiric criteria. I doubt they'd choose those personnel for contracts if they really wanted to keep the Empiric - though no doubt they will evaluate the Empiric along with other criteria against the clinical data collected. If they'd wanted to be very selective about the data, why use researchers who signed up to the new International ME criteria to collect that data? Or maybe they just like a fight :D.
     
  12. Dolphin

    Dolphin Senior Member

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    Ostensibly it is a good move. I just thought I'd point out that there is potential for problems so we shouldn't presume anything.

    I can't remember when she said it - it doesn't seem that long ago. I'd be thinking possibly one of the two CFSAC meetings in 2011 or else the IACFS/ME conference (or did she speak at the State of the Science conference?). (probably wasn't the IACFS/ME conference as never saw video for that while I think I watched her saw what she said)
    I might not have phrased it correctly - she was possibly referring to one study in particular e.g. we are going to show that there was little or no differences using the empiric criteria in study X. I can't remember the exact words but it was a defense of the criteria and in the context of a discussion/question on the criteria rather than the study, as I recall.

    And as I pointed out, there may be a difference between a contract and a grant in terms of what is made public.
    I remember watching one of her talks to the CFSAC (possibly May 2011) and she wasn't critical of the empiric criteria. She was talking about the importance of using validated questionnaires (which the empiric criteria uses) and making other points generally in favor of it. We shall see what happens.
     
  13. oceanblue

    oceanblue Senior Member

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    Thanks for the clarification. I don't suppose Nancy Klimas, Dan Peterson and Lucinda Bateman would have signed up for this if they'd thought the CDC were going to cook the figures, and presumably they know a lot more about this project than we do. But then I do tend to look on the bright side - for the same reason I was confident the PACE authors would stick to their published protocol...
     
  14. Ember

    Ember Senior Member

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    Do listen to Dr. Unger here: http://www.hhs.gov/advcomcfs/meetings/presentations/11082011.html (see CFSAC November 9, 2011 10:45 am - 1:15 pm at approximately 1:00 on the video). I already posted it, so perhaps I should transcribe the part about the Reeves definition:

    Hopefully by early next year we will have a publication that clearly explains the comparison of the standardized approach to applying the Fukuda definition, which I don't like to calling it Fukuda--it's the 1994 definition, and the approach that we had used in the past in Wichita studies and indeed everyone will find it very reassuring that the patient populations are very quite comparable. OK? So I think that will relieve a lot of the anxiety about what is going on.

    One, that article will also include as supplemental material detailed explanation of actually how we did that criteria, so that is, that is to allay the concern of the current data that those large, large studies that are used that have the data collected the way we collected it. Those studies are still ongoing, the three studies are the registry study, I don't mean the studies are ongoing, data analysis and testing and all of that are still going on, the clinical study that we call the GCRC study and finishing up the follow-up surveillance study, so they all use, you know, we asked the questions the way we asked them and we'll have that data and be able to show that" (http://www.youtube.com/watch?v=nf2yOxf74bE).

    I certainly agree with you that there is potential for problems so we shouldn't presume anything!
     
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  15. Dolphin

    Dolphin Senior Member

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    Thanks Ember. That may be what I had in mind.

    In case people are confused, they refer to the (so-called) empiric criteria as a standardized approach to, or operationalized version, of the 1994 definition (or the 2003 update).

    However, they did it in a very weird way e.g. if you have no impairment in physical functioning or role physical (SF-36) but have lower scores on "role emotional" (tests depression and the like), you can qualify as disabled enough to satisfy the CFS criteria. So as I say a weird approach.
     
  16. oceanblue

    oceanblue Senior Member

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    Thanks for the transcript. That's going to be a very interesting publication.

    As Dolphin said
    So they may well have a different attitude to the future work compared with defending the pipeline study. And it's going to have to be some publication to 'reassure everyone' about the comparability of patients between Fukuda and Empiric criteria.
     
  17. Ember

    Ember Senior Member

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    Or you may have had in mind Cort's comments on the IACFS/ME Conference in September:

     
  18. Ember

    Ember Senior Member

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    Dr. Unger has indicated on more than one occasion that she is also considering the input of patient groups. Here's more transcript of her comments at the CFSAC meeting in November:

    And here she is in recent correspondence with David Tuller:

    In my opinion, it behooves us as patients to come to grips with the opportunity presented by "the newly proposed International ME defin[sicition" and to communicate with our advocacy groups about this issue.
     
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  19. WillowJ

    WillowJ Senior Member

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    I'm also feeling cautious because of the balance on this team:

    - CFS: Clinical diagnosis and management .Team: J Jones, N Klimas, L Bateman, A Vincent, C Lueckte

    would the A Vincent be the one from Mayo who is interested in fibro? (I kind of doubt it's the one from Oxford who is interested in viral encephalitis, though that would be preferable) because that looks kind of bad.

    Two good doctors, two unhelpful ones, and an unknown for the diagnosis and management team...

    I admire Klimas, Bateman, Lapp, and the others for thinking they might be able to get somewhere with CDC. Says a lot for their spunk.

    But again I'm concerned about the balance here, and then it's a contract situation as well, as has been pointed out.

    I'm willing to give Unger the benefit of the doubt, but she does have a sticky situation with these expensive ongoing studies and, ultimately, she has bosses to answer to--the personnel in her upline has not changed. And some of the bosses are assuredly on the dark side.

    But yes, we'll see what happens. With more involvement from experienced rational docs and other stakeholders, it's difficult to predict.
     
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  20. WillowJ

    WillowJ Senior Member

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    thanks. I had found someone who looked like a possible match on PubMed when I typo-ed what was given, but then I'd realized I'd made an error.
     

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