The 12th Invest in ME Research Conference June, 2017, Part 2
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Expert opinion on the ‘Name Change Committee’ recommendations | 11 February 2015

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Sasha, Feb 11, 2015.

  1. Sasha

    Sasha Fine, thank you

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  2. Snow Leopard

    Snow Leopard Hibernating

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    Lenny Jason nails it with his comment:

     
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  3. *GG*

    *GG* Senior Member

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    Interesting debate. Seems like it would do more good than harm in the short term at least. What are other people's thoughts?

    I had the 2 day in a row exercise testing done and was shown to be impacted quit a bit, so it would seem I fit the criteria?

    GG
     
  4. Sasha

    Sasha Fine, thank you

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    I welcome the report and the acknowledgement of the severity of the disease, and that it's not psychological, and that CBT/GET are useless and that, by definition, exertion makes it worse: and the call for more funding. I think all that's great.

    I'd like to see consultation with patients before any new name is rolled out, and some actual engagement with patients - some to-and-fro about why certain terms, such as 'neuro-immune', might or might not be within scope. PR would be a great place to host such a thing.

    I don't know if it's too late for that: I don't understand the process.
     
  5. Iquitos

    Iquitos Senior Member

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    Well, it's being called a "draft." Maybe some of it can still be changed. I agree there is some good stuff in it but the name change is probably not a good one.

    On the other hand, I'm seeing write-ups in the major mainstream media, more attention than this disease has had in decades. So maybe even the clumsy name is having a positive affect. Getting rid of the f-word is a step in the right direction.

    And they do recommend a review of the criteria within 5 years.
     
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  6. Sasha

    Sasha Fine, thank you

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    I saw on the contents list that they had a dissemination strategy - I wonder if they did a really good job of lining up the media. If so, it's really paid off!

    Not seeing much in the UK - presumably they didn't bother targeting places outside the US.
     
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