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A disease with two faces? Re-naming ME/CFS
Persuasion Smith covers the bases on the misleading and disreputable name for our disease we've all been saddled with ...
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Lenny Jason - Diseases can stigmatize - Jan 2014

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Firestormm, Jan 21, 2014.

  1. Firestormm

    Firestormm Guest

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    Posted on Tuesday, January 21st, 2014 at 8:30 am

    Diseases can stigmatize

    He continues to talk about attempts at redefinition as well as changing the name, and concludes:

     
  2. A.B.

    A.B. Senior Member

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    Who or what is he referring to?
     
  3. Snow Leopard

    Snow Leopard Senior Member

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    I don't know specifically, but it is likely those who were involved with the name in the first place.

    But "CFS" was always a historical accident and was always just a place holder. The first place holder was "Chronic Epstein Barr Virus Syndrome", which was simply altered as they expanded the criteria to include those who had never contracted EBV.

    "ME" is a historical accident too (and has a history of stigmatisation too), but that is another story.

    We need a new name and I dare say naming it after a person or place would be quite reasonable - that way there can be no stupid arguments about what it actually means.
     
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  4. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Thanks to Prof. Jason for writing on this!

    In reading it, I was annoyed though that he underplayed the CDC malfeasance by omitting most of it, which at the same time talking about patient's 'negative' emotions like anger. Talking about patient's anger and distrust without showing why those emotions are more than justified, serves to make us seem somewhat irrational, imo.

    Regardless, this would have been the perfect place to summarize CDC's past and current malfeasance. So, I wrote a critical post. It hasn't appeared yet (i guess it must be moderated, but it didn't say). Some of you may feel I am being to forceful, but I am sick of the soft-pedaling which just gives our oppressors cover.

     
    Last edited: Jan 22, 2014
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  5. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I submitted another, more personal comment:

     
    Last edited: Jan 22, 2014
  6. alex3619

    alex3619 Senior Member

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  7. Esther12

    Esther12 Senior Member

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    justinreilly and Firestormm like this.
  8. Firestormm

    Firestormm Guest

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    I think - talking about the presentations yesterday and how we might have answered the question that was set - some reference to other diseases that result in similar levels of disability, might not have been a bad idea. Indeed, when IOM complete their review, I do hope they at least consider including such a comparison. NICE do for example, and I think it helps better inform doctors as well as others how disabling ME can be. In fact I can't think of a simpler way of doing it...
     
  9. Esther12

    Esther12 Senior Member

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    With ME stuff, there's always more to put in!
     
    Firestormm likes this.

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