Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Discussion on previous CFS patients eg Fukuda defined which dont fit with IOM defintion

Discussion in 'Institute of Medicine (IOM) Government Contract' started by taniaaust1, Feb 22, 2015.

  1. taniaaust1

    taniaaust1 Senior Member

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    I thought Id start a thread for discussion of this seeing comments in http://forums.phoenixrising.me/inde...to-an-iom-committee-member.35760/#post-562215 are about to take the other thread off discussion.

    Scarecrow made the following comment in posing questions to IOM

    Which Nielk responded

    [
     
    Last edited: Feb 22, 2015
  2. Nielk

    Nielk

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    @taniaaust1

    I think you mistakenly quoted twice the same quote.
     
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  3. taniaaust1

    taniaaust1 Senior Member

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    @Nielk I personally think it may not be fair to that Fukuda group who have now been left in the situation of not having a diagnoses.. this could bring with it being cut off disability pensions etc. Just cause they dont have post exertional fatigue, it doesnt mean they may not be quite sick.

    I think a new name has to be given to that group which now dont fit with the new criteria (this doesnt mean it should be at all included as a subgroup with the new definition). Unfortunately it would be new "waste basket" diagnoses illness which would include in it lots of people with missed diagnoses in it but the thing is there may be illnesses unknown to science yet within that group and having a waste basket group would put those people together even if they are with others which have been missed with many other things.

    To not give those people a name when some of them may have things unknown to science and need some form of group to fall into in the meantime... and leave them in the lerch one could say with being kicked off disability etc as now they dont have anything..... I dont think would be a good thing. (It probably just allows governments to possibly kick a whole lot of sick people off of pensions).
     
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  4. Scarecrow

    Scarecrow Revolting Peasant

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    Thanks @taniaaust1

    That wasn't what I was getting at at all.

    There will be implications for Fukuda patients without PEM, one way or another. I did not imply that the IOM criteria be amended to include them, nor do I think that they should. The train of thought you refer to is not mine.
     
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  5. taniaaust1

    taniaaust1 Senior Member

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    Yeah thanks.. .foggy head.. Its fixed now
     
  6. Scarecrow

    Scarecrow Revolting Peasant

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    Very true.

    But on the other hand, the exclusion from a ME/CFS (SEID) diagnosis could be a benefit to some. If they were given the initial CFS diagnosis from lazy doctoring, they may be re-evaluated and correctly diagnosed with something else.
     
  7. taniaaust1

    taniaaust1 Senior Member

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    Yeah.. that's what I was thinking too. A wastebasket diagnoses would be certainly bad for some (thou a good thing for possibly others).

    I think Nielk may be worried that it could be used as a reason to just put them all back in. I have the same fear too that things we say like that could be twisted and used to put things back to how they were.
    ..........

    I still think we need to push for whatever feels right and not base our responses on fears...
     
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