Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
Discuss the article on the Forums.

CFSAC Meeting Scheduled for January 13, 2015

Discussion in 'Action Alerts and Advocacy' started by Wally, Dec 18, 2014.

  1. Marylib

    Marylib Senior Member

    Messages:
    439
    Likes:
    41
    New Zealand
    Thanks Gabby. Very few people could follow it I am sure.
     
    Nielk likes this.
  2. Sing

    Sing Senior Member

    Messages:
    1,632
    Likes:
    1,337
    New England
    You'd have had to have replied to the draft report, meaning, have painstakingly gone through it line by line to know in quick order just what they were refering to. I'd done this and so caught a good deal of the discussion, but then my attention would either flicker off or I couldn't pay attention because I was trying to remember how to spell while making a note. (Once I could write automatically but now I often don't know how to write words without focussing slowly on them until the right spelling comes back. My handwriting has also been breaking down.) Anyway, my best take is that they did a very good job for us as efficiently as they could.
     
    Valentijn, catly and SpecialK82 like this.
  3. beaker

    beaker ME/cfs 1986

    Messages:
    773
    Likes:
    1,839
    USA
    Wondering if you would please clarify. Did they end up voting on Dr. Kaplan's motion ? Thank you.
     
  4. Ember

    Ember Senior Member

    Messages:
    2,099
    Likes:
    2,357
    Yes. His motion passed.
     
    ukxmrv, Anne, Valentijn and 2 others like this.
  5. jimells

    jimells Senior Member

    Messages:
    2,001
    Likes:
    6,114
    northern Maine
    Yes, I have this problem too. It's very annoying, and a very strange feeling when I can't figure how to spell something I'm sure I used to know. The Firefox browser's spell check works pretty good, fortunately. I hate appearing to be illiterat.
     
    Ritto and Sing like this.
  6. beaker

    beaker ME/cfs 1986

    Messages:
    773
    Likes:
    1,839
    USA
    Thank you.
     
  7. Nielk

    Nielk

    Messages:
    6,877
    Likes:
    10,615
    Sasha, beaker, NK17 and 4 others like this.
  8. Ember

    Ember Senior Member

    Messages:
    2,099
    Likes:
    2,357
    Mary Dimmock's unofficial version of CFSAC's recommendations jives with my notes and recollection. There was no language recommending that ME be separated from CFS. Such language could presumably be construed as a dig at CDC/NIH and was not included.
     
  9. Sing

    Sing Senior Member

    Messages:
    1,632
    Likes:
    1,337
    New England
    I aplogize if I remembered that incorrectly. Maybe what I heard was a comment or interaction on this subject and my brain didn't take in the final language. It sure would help in this country if ME could be separated from CFS--only wish!
     
  10. Ember

    Ember Senior Member

    Messages:
    2,099
    Likes:
    2,357
    According to @caledonia, “The upcoming WHO ICD-10-CM codes (medical billing codes for the US) as of Oct. 1, 2015 will have separate codes for ME and CFS. In addition, each one excludes the other. So if you're diagnosed with ME, you can't be diagnosed with CFS and vice versa.” Take note of this post!

    Caledonia adds, "The term ME/CFS is confusing. And there is no billing code for it. It doesn't actually officially exist, even though the NIH has picked up on using it (apparently because we patients are?)." But CFSAC has echoed the Panel in claiming, "ME/CFS exists."
     
    Sing, NK17 and catly like this.
  11. NK17

    NK17 Senior Member

    Messages:
    592
    Likes:
    1,517
    Thank you all for trying to listen, follow, take notes, report etc.
    I couldn't do any of the above and your help is greatly appreciated.
     
    beaker and Sing like this.
  12. Sing

    Sing Senior Member

    Messages:
    1,632
    Likes:
    1,337
    New England
    @Ember, do you have a link for those exact codes and illness definitions/descriptions according to the WHO-10-CM?
     
  13. Sing

    Sing Senior Member

    Messages:
    1,632
    Likes:
    1,337
    New England
    You are bringing your appreciation and interest, and that's a contribution too.
     
  14. Ember

    Ember Senior Member

    Messages:
    2,099
    Likes:
    2,357
    My information comes from the post that I cited above via hyperlink and from this article by Mary Kindel on MEAdvocacy.org:
     
    NK17 and Sing like this.
  15. Sing

    Sing Senior Member

    Messages:
    1,632
    Likes:
    1,337
    New England
    Thank you, Ember, for explaining the codes. Does the ICD-10-CM ME G93.3 describe ME at all or simply list it under Neurological Diseases?
     
  16. caledonia

    caledonia

    Messages:
    4,204
    Likes:
    3,225
    Cincinnati, OH, USA
    The ICD-10 CM codes are online. ftp://ftp.cdc.gov/pub/Health_Statistics/NCHS/Publications/ICD10CM/2015/
    Download the pdf and look under the Tabular Listing.

    (Bolding mine)

    There is nothing further about definitions or descriptions for any diseases. This is merely a classification, but even that can say a lot.
     
    beaker, NK17 and Sing like this.
  17. Nielk

    Nielk

    Messages:
    6,877
    Likes:
    10,615
  18. Ember

    Ember Senior Member

    Messages:
    2,099
    Likes:
    2,357
    Are you concerned about freedom of speech for CFSAC members? HHS apparently wants to control the narrative.
     
    Last edited: Jan 18, 2015
  19. Nielk

    Nielk

    Messages:
    6,877
    Likes:
    10,615
    I'm concerned about the independence of CFSAC. don't forget some members have been threatened just for asking some questions.

    CFSAC voting members are non government people. They are supposed to give recommendations to the government.

    If the government controls what CFSAC says in any way, it is an illegal breach.
     
    catly and Wildcat like this.
  20. Ember

    Ember Senior Member

    Messages:
    2,099
    Likes:
    2,357
    “This HHS web is getting curiouser and curiouser;” perhaps we could all be afforded the same concern.
     

See more popular forum discussions.

Share This Page