When the 'Holiday Season' Is No Holiday at all for Those With ME/CFS
Is December getting to you? Jody Smith shares some thoughts on some of the struggles that all too often attend this time of year ...
Discuss the article on the Forums.

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

    Messages:
    12,812
    Likes:
    34,305
    UK
  2. Snow Leopard

    Snow Leopard Hibernating

    Messages:
    4,642
    Likes:
    12,528
    South Australia
    Lenny Jason nails it with his comment:

     
    NK17, ahimsa, Iquitos and 1 other person like this.
  3. *GG*

    *GG* senior member

    Messages:
    6,250
    Likes:
    4,903
    Concord, NH
    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

    Messages:
    12,812
    Likes:
    34,305
    UK
    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

    Messages:
    511
    Likes:
    968
    Colorado
    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.
     
    Sean, GracieJ, Sasha and 1 other person like this.
  6. Sasha

    Sasha Fine, thank you

    Messages:
    12,812
    Likes:
    34,305
    UK
    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.
     
    aimossy, Sean, justy and 2 others like this.

See more popular forum discussions.

Share This Page