Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Questions regarding the Pandora/Coalition for ME/CFS ICD-9 & ICD-10-CM code revision

Discussion in 'Action Alerts and Advocacy' started by Jill McLaughlin, Sep 29, 2011.

  1. Jill McLaughlin

    Jill McLaughlin

    Questions regarding the Pandora/Coalition for ME/CFS ICD-9 & ICD-10-CM code

    In the coalitions' proposal to NCHS (Option1 from the NCHS meeting
    report), Myalgic Encephalomyelitis (ME) was not included. Some have
    surmised that it was that no changes to ME were requested, but seems
    it would still be listed in the final copy and would be exactly as it would
    appear in the ICD. Are you concerned about this, given your involvement,
    or are you certain that ME will be included? Or was the coalition's intention
    to remove ME from the ICD-10-CM?
    [page 10, Option 1 Coalition for ME/CFS):]

    The proposal asked for an expedited review and implementation of proposed
    changes. What does this mean for the date deadlines given for the submission
    of public comments? Would this perhaps kick it back to the earlier date listed
    on the timeline?
    [page 11:]

    What is ICD-10-CM/PCS? What are code freezes and what effect if any would it
    have on changes or cut off dates for comments or implementation of any changes?

    Does the CFIDS Association of America support this proposal?

    There have been references to a coalition steering committee. Three patients
    are listed as representatives. Who are members of the steering committee? Are
    there any scientists or doctors on the steering committee or any who were
    involved in formulating this proposal? What scientists or professionals support this
    proposal as it has been stated.

    This proposal and presentations were done without the knowledge or input of a
    vast majority of the patient community, and ME advocates in particular, which is
    why the omission of ME is disconcerting. This was very unfair and underhanded
    as it greatly affects our diagnosis and we are major stakeholders. Now we are
    trying to scramble to figure this out and respond under deadlines, with no
    cooperation or even common courtesy of a few answers from those who did this
    behind our backs.

    Questions have been asked directly, publicly and privately to no avail. Nor
    have there been any reports from the conference as to what was discussed.
    One messageboard discussion on this topic had over 6000 views and nearly
    1000 replies within one week. This is obviously a topic of concern and interest
    and we need clarity so that we have correct information and can act accordingly.

    Otherwise, any help or feedback would be appreciated.
  2. Jill McLaughlin

    Jill McLaughlin

    These answer some questions. But was the intention to remove
    ME from the ICD?

    Coalition's FAQ Updated
    New questions added, some updated.

    Note to moderators: The other thread is locked. I am not intending to disrespect that decision. If you want to merge the two together, with this post at the end, with it still locked, please do. If you want to leave this one and lock it too, that is fine.

    I am not meaning to open up a new thread of discussion, but accusations have been going around that the coalition is not answering recent questions. It was always planned that the FAQ would be updated as new questions came up.



    You really did not have the authority or expertise to do this.
    The "coalition" is a stretch. Pandora and WI are the only real
    groups (and they do not have that many members), others
    were online sites or blogs or support groups. You claim there
    were professionals involved, but can't say who they are? Why?

    People are ticked that we now have to scramble and figure
    things out under a deadline, because you did this, without our
    knowledge or consent.


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