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CDC scheduling conference to discuss changing case definition (said at CFSAC)

Discussion in 'General ME/CFS News' started by Dolphin, Nov 9, 2011.

  1. Hope123

    Hope123 Senior Member

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    "Data driven" is a relative term. The ICC and Canadian Criteria are a good start in that experienced clinicians and researchers came up with the definitions based on their experience. But clinical experience is just the first step; for a definition to be accurate and feasible, it must be tested on multiple and large groups of patients and this is what I think the CDC might be trying to do. I have a lot of reservations about the CDC but I do respect both Natelson and Kogelnik for their work.

    Here is something on levels of evidence that is very technical but might be of interest. Randomized controlled trials are at the top and expert consensus based on cases are at the bottom. For diagnosis, it's a little different -- you need a derivation cohort from which you come up with your definitions and then a validation cohort.

    http://www.cebm.net/index.aspx?o=1025

    Supposedly, Dr. Wanda Jones says Dr. Nancy Lee is "data driven." I hope that is true since much of what the federal gov't has done with ME/ CFS has not been data driven.
  2. Andrew

    Andrew Senior Member

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    I hope not. Because Peterson and Hyde were part of the meetings led by Fukuda, and I don't see anything of them in the outcome of that meeting.
    ixchelkali and justinreilly like this.
  3. Ember

    Ember Senior Member

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    Data driven or not, will the CDC aim for an inclusive or a restrictive case definition? How big a departure from Reeves can we expect to come from their conference?

    From what I've heard, Elisabeth Unger has so far been defending the CDC's use of the Reeves definition. So far, inclusive seems to have worked for them.
  4. shiso

    shiso Senior Member

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    Another point is: how long is this going to take? As important as it is that the case definition be at least as accurate and restrictive as the ME ICC, it would be unacceptable if "data driven" means that this could take years, when the data they need already exists. They could make such a real world difference by acting swiftly, yet it doesn't sound fast at all when they are still at the point of scheduling a conference to think about the issue. We need a good working definition implemented now/yesterday/asap.
    ixchelkali likes this.
  5. Snow Leopard

    Snow Leopard Senior Member

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    So we are going to see an "empirical definition" that is actually going to be empirically derived? That would be a first for the CDC programme.
  6. ixchelkali

    ixchelkali Senior Member

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    It certainly does sound like more CDC doublespeak, trying to make it sound like they're doing something, when actually they're just spinning their wheels. I wonder how many FTE hours they'll be able to charge to that project code (and what they'll actually be doing with that time)?

    Maybe once they've formed their committee to look into it and finally convened a meeting, someone can tell them about the ICC. They could simply do validation on that one, since if you check the footnotes, it's data driven. But they probably won't, because they wouldn't be able to stretch that out for 5 or 10 years and spend all their ME/CFS budget doing it. And because the ICC doesn't imply ME/CFS is a mental illness, and it won't dilute patient cohorts enough to muddy up research results.

    If I sound jaded and suspicious of the CDC, it's because I'm jaded and suspicious of the CDC. Nothing I've heard from Elizabeth Unger so far indicates I should change my mind, or that the winds of change are sweeping the CDC's CFS program. I won't say ME/CFS program, because they don't have one; actually, calling it a CFS program is being generous, since in reality it's an idiopathic fatigue program.
  7. Andrew

    Andrew Senior Member

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    Data driven only works if you are studying the correct cohort. If it does not differentiate the Tahoe cohort, it is not the right data.

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