The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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"PEM Differential" by Jennie Spotila on the IoM criteria not having exclusions, etc.

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Dolphin, Feb 25, 2015.

  1. Dolphin

    Dolphin Senior Member

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    Jennie described it on Facebook as:
    I think that doesn't necessarily get across that it is nuanced and thoughtful.
     
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  2. user9876

    user9876 Senior Member

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    moderated with many others
    I think not having the exclusion for clinical criteria is important because someone can have anxiety, depression and develop ME/SEID.

    I would argue that you still want exclusion in research criteria to keep things simple.

    Also I worry that if doctors can easily just say SEID go away they will. Without doing proper investigations as to other causes or following the actual clinical guidelines. But this is a matter of the professionalism of doctors.
     
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  3. alex3619

    alex3619 Senior Member

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    Logan, Queensland, Australia
    Research criteria are typically much stricter than clinical criteria, even if its clinical criteria that are used for diagnosis. For example, while I qualify for ME and SEID I did not get into an immune study due to comorbidities, which is fine.

    I think Jennie is right about this:

    What I think is missing is the point that even under ICC ME many doctors will get it wrong. We simply presume that if a definition is out there then it will be properly applied. Without an educational program to ensure that diagnostic criteria are properly understood there will be a high rate of misdiagnosis.

    My position on where advocacy should go based on the report is still pending. I will not draw conclusions before I have considered it sufficiently. I am watching many sides of the debate (its not only two sides).

    My position on the suitability of the IOM process is unaltered. It was severely flawed. It is disturbing, and not just for ME or CFS or SEID patients, that this process can potentially railroad the science. EBM practices, as typically applied, are capable of creating and entrenching bias rather than reducing it. I have much more to say on this but this is not the thread for it.

    Let me expand one point though. ANY disease which does not have a rich and deep research base, which has been largely ignored and had research massively underfunded, or for which a particular hypothesis has dominated the field largely due to funding disparities, will be badly served by an EBM approach. The bias is in the research base, and drawing from that will just entrench the bias.

    I have said this before, and will say it again: its remarkable the IOM report was not much worse, and credit goes to those who worked hard on this. That does not mean I think they got it right, but then again it does not mean that I demand perfection.
     
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