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Jason: Minimum data elements for research reports on CFS. Brain, Behav, Immun

Discussion in 'Latest ME/CFS Research' started by CBS, Feb 7, 2012.

  1. CBS

    CBS Senior Member

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    Minimum data elements for research reports on CFS.
    Jason LA, Unger ER, Dimitrakoff J, Fagin A, Houghton M, Cook D, Marshall GD Jr, Klimas N, Snell C.
    Brain Behav Immun. 2012 Jan 28. [Epub ahead of print]

    Wish the text of this was publicly available. This is likely a significant move in the right direction.
    Advocate and oceanblue like this.
  2. Marco

    Marco Old blackguard

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    I'm intrigued.

    If implemented (not that I know the details) this has the potential to essentially sideline research that uses loose case definitions.

    Expect a riposte that talks up the need for large samples, 'gold standard RCTs' etc.

    You know, the sort we mostly can't afford unless government funded.
  3. Dolphin

    Dolphin Senior Member

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    Yes, surprised this wasn't open access. Hopefully it will be after 6 months or whatever.
    Advocate likes this.
  4. Advocate

    Advocate Senior Member

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    Yes, I hope we can see it soon. I was encouraged by the names on the abstract.
  5. kaffiend

    kaffiend Senior Member

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    I was able to access a copy of the uncorrected proof. What are the rules for posting papers?
  6. WillowJ

    WillowJ Senior Member

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    that looks really interesting :)
  7. Dolphin

    Dolphin Senior Member

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    I read this.
    I'm not exactly sure what I was expecting but I didn't find it that exciting (I was excited when I learned about the paper).
    Not that it's necessarily unexciting - it's more "that's obvious"-type reaction.
    Of course, if I had to start coming up with a paper myself, I imagine it would be hard work.
    Not too much focus or discussion on criteria per se although it is mentioned - most is about listing exactly what was done, incl. thresholds for symptoms so maybe a lot of it could be considered related to criteria.
    The CDC are one of the authors so no criticism of them.
  8. Snow Leopard

    Snow Leopard Senior Member

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    This is an interesting move right, considering Jason has been publishing papers criticising the CDC approach consistently for over 10 years.
  9. Dolphin

    Dolphin Senior Member

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    Most of the people involved are members of the CFSAC so it wasn't, say, simply Jason and Unger coming together.
    There is no praise of the whole empiric criteria either. It will be good to have something. A lot of people aren't spotting empiric criteria study papers and of course they get quoted a lot. So having things more explicit is good.
  10. Marco

    Marco Old blackguard

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    Full text proof here :

    https://docs.google.com/open?id=0B8u1oQTA2xOsOWFlNmZkMzEtN2ZjMi00ZTEyLWI3NWMtZWFhMWNlODdhY2Ix

    Thanks kaffiend

    A few initial thoughts.

    The overall intentions are laudable but why reference CCC and the ICC and not suggest that, with PEM being the key feature of ME/CFS that all measures (biological or self reported symptoms) be recorded unstressed and during and following stress (physical/cognitive);

    recommended activity measures include SF 36 physical sub scale plus actimeters etc but no consideration given to the need to validate self report measures like SF36 with objective activity measures;

    With increasing evidence of inflammation in ME/CFS there are certain markers that are considered to be reliable markers of inflammation regardless of the illness. Perhaps these should be routinely measured in addition to other measures relevant to the study in hand :

    "These biomarkers, especially hs-CRP and IL-6 have been found to reproducibly identify the presence of an activated innate immune response in a number of disorders including behavioural disorders such as depression

    Source : Identification and Treatment of Symptoms Associated with Inflammation in Medically Ill PatientsRobert Dantzer, Lucile Capuron, Michael R. Irwin, Andrew H. Miller, Helene Ollat,Victor Hugh Perry, Sarah Rousey, and Raz Yirmiya, 2009
  11. oceanblue

    oceanblue Senior Member

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    I thought this paper was pretty good, and particularly liked the fact that it brought together both Lenny Jason, who has done some of the most interesting work to date evaluating case definitions, and Elizabeth Unger of the CDC whose rather wacky Empiric criteria has been heavily criticised by Jason in the past.

    It's worth pointing out that they aren't trying to pick winners among the competing case definitons, but to present a common mimiumum dataset to be collected on all 'CFS' patients in a study, whichever specific case definition is used.

    The most interesting suggestion they make, to my mind, is that the resulting data sets could be shared/pooled, allowing new analysis based on the mimimum data set:
    One use of this would be to evaluate the effectiveness and overlap of different case definitions.

    The authors do recommend some specific self-report measures of physical function/activity, though sadly don't include actometers (these are mentioned as an optional extra). Even more disappointing, from my point of view, is they seem to accept the SF-36 etc as validated measures of activity/function when I don't think this is the case: they may have been validated against the other questionnaires (something of a futile circle) but not against objective measures eg metabolic energy useage.

    The authors say they are working on another paper with recommendations for othe diagnostic tools/questionnaires to measure areas other than physical function:
    So watch this space, presumably.
    WillowJ and Dolphin like this.
  12. oceanblue

    oceanblue Senior Member

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    One area where I have a concern is over the use frequency and severity to score symptoms:
    This system is used in both the CDC Symptom Inventory and Jason's DePaul Symptom Questionnaire. I can see the appeal of moving from a simple yes/no answer to quantifying the 'amount' of symptom, so that occaisonal/mild symptoms don't count. But there is a weakness to this approach too, and it's called pacing. The whole purpose of pacing is to reduce both the frequency and severity of symptoms so the symptom frequency/severity score depends both on the nature of the illness and the degree of pacing being used.

    Elsewhere in the paper the authors mention to what I think is a much smarter and more appropriate approach:
    You could apply this to all symptoms. In fact, the CCC and ICC (if I remember correctly) both refer to a characteristic symptom cluster flaring in response to exertion. So I think questions on symptom severity and frequency need context to give reliable data - it should take account of differing levels of exertion or overexertion.
    WillowJ and Dolphin like this.
  13. WillowJ

    WillowJ Senior Member

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    I also found this less exciting than I had thought it might be.

    On the other hand, the items listed here as required, as minimal and common-sense as they are, are a great deal more than is typically done. Even though these are very moderate suggestions, they would still represent a step forward.

    (I thought I posted this message previously, but I just now found it in an open tab)

    It was interesting to me that CDC made a point of saying that the paper didn't necessarily represent CDC's official position.

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