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Briefing on the Institute of Medicine report in Washington, D.C. --webcast March 25

Discussion in 'Upcoming ME/CFS Events' started by Sushi, Mar 13, 2015.

  1. Ember

    Ember Senior Member

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    Stand by... The P2P draft report recommends to NIH “that the ME/CFS community agree on a single case definition (even if it is not perfect).” We're now awaiting the final report!
     
  2. alex3619

    alex3619 Senior Member

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    I don't have any faith in the P2P process either.

    PS However despite that the IOM and P2P processes were supposed to be cooperating, they failed to do so. In a very big way they are disconnected from each other. Just another example of poor overall management.
     
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  3. Ember

    Ember Senior Member

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    We shall see.
     
  4. caledonia

    caledonia

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    The P2P final report was being worked on after the IOM report was available, so it's possible that parts were changed to rectify it with the IOM report. We'll know in about two weeks.
     
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  5. alex3619

    alex3619 Senior Member

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    Yes, but if this happens it will be blatantly obvious. It would be tampering.
     
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  6. Denise

    Denise Senior Member

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    In theory the P2P report might be amended based on comments submitted.
    Being able to compare what was submitted to what ends up in the final report is just one of the reasons it is so important that NIH retain submitted comments. (And I am very glad we were able to get them to do so.)
    Being able to compare the final P2P report to the submitted comments and to the IOM report as well might be quite interesting....
     
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  7. caledonia

    caledonia

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    To answer my own question, I just did a quick review of about 50 CFS studies over the last 5 years (the ones I could get full text for and thus see how they picked out cohorts). By far and away, the most used criteria is Fukuda (90%). CCC is about 10%. Oxford is about 8%. ICC is about 4%. Researchers were most likely to use other definitions in combination with Fukuda.
     
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  8. Nielk

    Nielk

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    i wonder what they mean when they state that. Does it mean that each and every patients fit bothe criteria? Or does it mean that some fit one and others fit the second criteria?
     
  9. alex3619

    alex3619 Senior Member

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    I have been thinking about Fukuda. Its a research definition. So it might be that SEID wont replace it. What does this mean? Does it mean that SEID will sit alongside Fukuda?
     
  10. Denise

    Denise Senior Member

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    @Nielk - very good point.
    Also while some studies claim to use a particular definition (or more than one), some researchers alter definitions at will. I believe that some studies claimed to use the CCC but the participants only had to have CCC symptoms for one week.
     
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  11. alex3619

    alex3619 Senior Member

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    Non standard operationalization. We need not only definitions, but operationalized definitions, so that researchers cannot do this.
     
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  12. Denise

    Denise Senior Member

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    @alex3619 I agree that research must be done correctly. To clarify (and I apologize for not being clear above) I was pointing out to @Caldeonia that sometimes just because studies say they used X definition, they may not really have done so.
     
  13. alex3619

    alex3619 Senior Member

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    Yes, like PACE.

    However there is a claim going round, that I have not verified, that a lot of studies lately that were using Fukuda have been requiring mandatory PEM. So even Fukuda studies might not be using Fukuda. Its a muddle.
     
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  14. Denise

    Denise Senior Member

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    PACE, Wyller's studies.... And the last thing this disease needs is sloppy research.

    If you do find out more about studies purporting to use Fukuda yet requiring PEM, please let me know about them.
     
  15. Nielk

    Nielk

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    This a good point, Alex. Does it say anywhere in the report that the IOM criteria are replacing Fukuda?
     
  16. alex3619

    alex3619 Senior Member

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    I had a quick look and didn't find it. It looks like anything outside of the terms of reference is not considered. In other words its up to HHS to decide. They could keep Fukuda for research and use SEID for clinical diagnosis if they wanted to. Does anyone have any better information than this?

    Hmmm, have they left the door open for us to push ICC as a proposed new research definition? It looks like it. A lot of that might depend on the P2P though, and we have to wait to see their final report.

    A big part of what choices are made are up to the HHS. The organization that lied about what it was doing regarding the IOM. The organization that has ignored our situation for decades. Maybe they will get it right this time. Maybe. If they want our trust they are going to have to earn it.
     
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  17. Dolphin

    Dolphin Senior Member

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    Generally what it means is that all would fit Fukuda and some of them others. Except with a broader definition again like the Oxford criteria where all would satisfy the Oxford and some would satisfy other criteria incl. Fukuda.
     
  18. Dolphin

    Dolphin Senior Member

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    I have heard of one research group in the UK who do this.
     
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  19. Sean

    Sean Senior Member

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    Perhaps the more important question here is: Do studies using the Oxford criteria have a disproportionate influence on medical and government policy?

    Certainly seem to in some countries, like the UK.
     
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  20. medfeb

    medfeb Senior Member

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    Its admittedly fuzzy but my understanding is that SEID is not intended to replace Fukuda but that patients that meet SEID are intended to be pulled out of Fukuda. That means that Fukuda minus PEM could continue to exist. Not clear what that means in terms of CDC's CFS website or the use of Fukuda in research. This needs to be clarified.

    At P2P, Nacul recommended that in research, they use the combination of Fukuda plus CCC - patients must meet both.

    In the 2014 AHRQ Evidence Review, Oxford studies led to treatment recommendations for CBT and GET. The AHRQ Evidence Review said that the report was intended to inform a research agenda but also stated that evidence review reports could be used to inform health plans, providers, and purchasers.
     

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