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  1. Alison Orr
    Thread

    Open Letter to Secretary Azar and Calls to Action (USA)

    I hope I’m not duplicating a thread - I’ve searched but can’t find anything on this subject. “On April 9, 2019, ME advocates Eileen Holderman and...
    Thread by: Alison Orr, Apr 15, 2019, 1 replies, in forum: ME/CFS research news
  2. Alison Orr
    Post

    USA - NCHS/CDC Proposal for ICD-10-CM - adding SEID

    Hmmm... “certain expectations”... “self-appointed representatives”... that doesn’t sound like an interest in understanding the wider concept but...
    Post by: Alison Orr, Oct 6, 2018 in forum: Disease coding
  3. Alison Orr
    Post

    USA - NCHS/CDC Proposal for ICD-10-CM - adding SEID

    Thanks for your response, Jaime. I didn’t actually ask you/MEActionNet to denounce all other criteria (though it does follow that, if you...
    Post by: Alison Orr, Oct 6, 2018 in forum: Disease coding
  4. Alison Orr
    Post

    USA - NCHS/CDC Proposal for ICD-10-CM - adding SEID

    Interesting. In reply to my open letter to MEAction and Jen Brea, Adriane Tillman said: “For diagnostic criteria, #MEAction promotes the use of...
    Post by: Alison Orr, Oct 5, 2018 in forum: Disease coding
  5. Alison Orr
    Post

    USA - NCHS/CDC Proposal for ICD-10-CM - adding SEID

    But your website says you campaign on the basis of ICC (I’m paraphrasing). So wouldn’t an attempt to legitimise SEID warrant a response?
    Post by: Alison Orr, Oct 5, 2018 in forum: Disease coding
  6. Alison Orr
    Post

    USA - NCHS/CDC Proposal for ICD-10-CM - adding SEID

    Eileen Holderman has asked some very pertinent questions of Solve, IACFS/ME and MEAction. It’ll be interesting to see their answers. IF they...
    Post by: Alison Orr, Oct 3, 2018 in forum: Disease coding
  7. Alison Orr
    Post

    Petition: Stop CDC from hiring shoddy contractor for ME treatment guidelines

    Yes, I imagine it’ll take the system a while. Thanks.
    Post by: Alison Orr, Sep 1, 2018 in forum: Petitions
  8. Alison Orr
    Post

    Petition: Stop CDC from hiring shoddy contractor for ME treatment guidelines

    When did you get this? I’ve not received one.
    Post by: Alison Orr, Sep 1, 2018 in forum: Petitions
  9. Alison Orr
    Post

    Petition: Stop CDC from hiring shoddy contractor for ME treatment guidelines

    I’m really quite astonished that there isn’t more concerned discussion about a high profile (or any) organisation changing a petition after...
    Post by: Alison Orr, Sep 1, 2018 in forum: Petitions
  10. Alison Orr
    Post

    Petition to ask government agencies adopt ICC

    Hi Adam - I don’t wish to rehash the arguments about criteria but I do want to pull you up on your inference from my personal comments below the...
    Post by: Alison Orr, Jul 26, 2018 in forum: Petitions
  11. Alison Orr
    Post

    Action for ME GP webinars

    :laugh::rofl::laugh::rofl::laugh::rofl::laugh::rofl: Thank you for the laugh! I hadn’t heard of this and followed your link. Teehee!
    Post by: Alison Orr, Jul 19, 2018 in forum: General ME/CFS news
  12. Alison Orr
    Post

    Action for ME has joined S4ME

    I don’t think Eileen Holderman, Gaby Klein or Jeanette Burmeister, all experienced US advocates, would agree with you. Check their tweets. They...
    Post by: Alison Orr, Mar 15, 2018 in forum: General ME/CFS news
  13. Alison Orr
    Post

    Action for ME has joined S4ME

    Indeed they don’t. Many PwME have been banned from their Facebook page. I was blocked on Twitter for one tweet, the content of which I can no...
    Post by: Alison Orr, Mar 14, 2018 in forum: General ME/CFS news
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