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PANDORA's presentation to the IoM

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Nielk, Jan 28, 2014.

  1. Nielk

    Nielk

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    http://pandoraorg.net/uploads/IOM_Public_Presentation__Jan_27-2.pdf

    Excerpt:

    There are many case definitions with some being very broad where the only criteria
    for diagnosing chronic fatigue syndrome (CFS) is 6 months of fatigue and others like
    the Canadian Consensus Criteria (CCC) that are concise and capture the true illness.
    But the multiple definitions, and overly broad definitions are causing clinician and
    researcher confusion. When looking at research in your study, we recommend you
    reject all research that focused on or only requires chronic fatigue. Those studies
    don’t inform you on our illness, they inform you on a symptom of many diseases.
    Some of you may think that a broad definition would be better for patients because
    a more focused definition would limit treatments. This isn’t true with ME/CFS
    because some of the treatments that are prescribed for idiopathic fatigue are
    harmful to patients. For example, someone who has depression, should be
    exercising more to release endorphins. Someone with ME/CFS will need to be
    careful to pace and not exacerbate symptoms by exercising.
  2. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Not bad. I wish she had stuck to the cancel the contract, adopt CCC message, but failing that, this was a good presentation, except for the Venn diagram. It really should have been left out. The overlapping of ME and depression was not a good message and it's not accurate.

    (what would be accurate is if each circle said "PEOPLE with x disease" not just "x disease." The latter- what was presented- says that many cases of ME are in fact depression. And every illness should overlap with every other one since it is possible for someone to have ME and any other disease at the same time not just depression. But even if it were correctly presented, it should have been left out, imo, bc it might subconsciously reinforce a perception of ME and depression being synonymous)

    If you can't pick something like this up, and we're all human, you need more proofreading and feedback before release.
    Last edited: Jan 29, 2014
    taniaaust1 and Sing like this.
  3. leela

    leela Slow But Hopeful

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    I had the same thoughts about the diagram, justin. I think someone may have skipped class the day set theory was introduced ;)
    justinreilly and Sing like this.
  4. taniaaust1

    taniaaust1 Senior Member

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    I didnt watch it so cant comment on the presentation in that way.. but by what was said, I wouldnt have all like that diagram.. the last thing we need is to be making people think that depression is a normal part of our illness (where it features no less then with any other severe illness!!). It's a bad political move having such a diagram when we really so much need to break away from that depression thing so often put wrongly onto ME people

    Other then that.. I do like was said with
    "others like the Canadian Consensus Criteria (CCC) that are concise and capture the true illness" so said in support of that even if they didnt clearly call for this definition to be used."

    Im disappointed in pandoras presentation due to what Ive heard about the diagram. ME advocacy groups need to be being very smart with their advocacy so people arent twisting stuff and what impressions left can be quite important.
  5. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    @taniaaust1, you can see the whole presentation (including the venn diagram) at the link in the first post in this thread.
  6. Nielk

    Nielk

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    Lori's video presentation:

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