New Atmosphere, New Vision: Gibson and Whittemore Kick Off Invest in ME Conference 2016
Mark Berry reports on Dr. Gibson's introduction and Dr. Whittemore's keynote speech, at the 11th Invest in ME International ME Conference in London.
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Invest in ME responds to the IOM report

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Kati, Mar 20, 2015.

  1. Kati

    Kati Patient in training

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    it is dense and thorough, sometimes heavy handed and for the most part, heavy handed is needed in highlighting the governments' failures in recognizing and reacting appropriately to this disease.

    This report should be used in our advocacy efforts.

    Here it is.

    Thank you Invest in ME.

    Highlights for me:

     
    Last edited: Mar 21, 2015
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  2. Sean

    Sean Senior Member

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    From the Invest in ME response:

    Two excellent points.
     
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  3. taniaaust1

    taniaaust1

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    Im quite impressed with Invest in ME's comments esp with the name as its exactly how I feel about it.
     
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  4. Kati

    Kati Patient in training

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    i may not personally agree with everything they wrote, however I am impressed at how responsive this organization has been in these 2 reports from the US, out of their turf so to speak. They understand how important it is to get it right and how these reports affects not only those in the US but also all the patients around the world.
     
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  5. taniaaust1

    taniaaust1

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    nods, they are putting a lot of thought and work into it even if people don't agree with it. A genuine group who truly wants to help patients and aren't trying to belittle or cover anything up.
     
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  6. Dolphin

    Dolphin Senior Member

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    From the Invest in ME piece on the IoM report:
     
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  7. Dolphin

    Dolphin Senior Member

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    I think there are some good points to the Invest in ME review.

    However, I don't agree with their argument on the name, that it's premature to change the name now:
    Maybe research will come up with the sort of evidence that will lead to a new name quickly. Or maybe it will take a long time (I think there is quite a good chance it will be the latter - given all the different aspects of the illness, research progress is quite slow). In the meantime, I don't think it is good to have "chronic fatigue syndrome" as the main name the medical profession uses for the condition.
     
    Last edited: Mar 21, 2015
  8. Dolphin

    Dolphin Senior Member

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    (Invest in ME do a summary. However it's quite long. Here it is in plain text (it didn't copy well) or people can go to pages 21-26 where it is easier to read)

     
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  9. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Absolutely. researchers, individually, say, "I'm just about to publish something that will change everything." They do, and it doesn't change the bad name. The studies come out with biological findings and say, "This could be a diagnostic biomarker." And it doesn't go any further.

    Why? The studies are small and comparing healthy to CFS patients instead of CFS patients to those with similar illnesses.

    Meanwhile, clinical care is absent and terrible. Another issue is that there is no widely respected and well-known medical professional organization of trained and certified experts to bless a name or criteria and do the educating of doctors, or do these studies of validating a proposed criteria. So we go to the government. Getting this into a specialty, in my opinion, will be the biggest help.
     
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