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Graham McPhee spells out some of the cold, hard facts about the dismal state of ME research and politics, and has some suggestions as to what we can do about it ...
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YouTube video of 'All Fall Down for ME' demo, London 12 May 2013

Discussion in 'Action Alerts and Advocacy' started by Sasha, May 14, 2013.

  1. Sasha

    Sasha Fine, thank you

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    ggingues and Ember like this.
  2. jeffrez

    jeffrez Senior Member

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    Great video, thanks, and a big thank you to everyone who participated on our behalf.

    The more I see the term M.E., the more I seriously dislike it. That's no more descriptive of what's really going on than CFS. CFS in fact I feel is a better term, even - not that that one's particularly great, either, but at least it doesn't point to something that might not even exist in most of us.

    It doesn't help that M.E. can double as "me," i.e., as in something to use as ammo against us for being "self-centered in our illness beliefs," etc. I can only imagine some of the psychologizers looking at those signs saying "Help ME" and laughing to themselves at how perfect it was that we would employ an acronym that could be seen as referring back to ourselves.

    If I told my docs I had "encephalomyelitis," they would laugh me out of the office even more than they would probably like to do now. Maybe it's a UK/US thing, but I think we need some new terminology, asap!
     
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  3. Ember

    Ember Senior Member

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    ME involves not just a name, but also case definitions that describe something different from CFS case definitions.
     
    ggingues likes this.
  4. Misfit Toy

    Misfit Toy Senior Member

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    I agree jeffrez. I don't like the name M.E. it's too late. The name CFS has been around in the states for over 20 years. No one knows what M.E is. I have to explain even more. When I say, it's CFS...they are more likely to know what that is.
     
  5. jeffrez

    jeffrez Senior Member

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    I understand that, but my point is more about the term itself. Even something basic like PEM Syndrome would be better than ME - imho!
     
  6. Ember

    Ember Senior Member

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    The Spaniards would balk had you suggested PENE!;)
     
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  7. jeffrez

    jeffrez Senior Member

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    Not in my experience. :D
     
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