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Dr. Lapp's conference summary and the Coalition 4 ME/CFS session on ICD code changes

Discussion in 'General ME/CFS News' started by Jill McLaughlin, Oct 17, 2011.

  1. Jill McLaughlin

    Jill McLaughlin

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    Dr. Lapp IACFS conference summary
    http://drlapp.com/news/iacfs-2011-summary/

    This is the only mention I've seen anywhere about the Coalition 4 ME/CFS
    presentation/session from the conference.

    I have seen NOTHING in any of the Coalition 4 ME/CFS material about
    moving PVFS or any concern or mention of removing benign from the
    term benign Myalgic Encephalomyelitis. All I've seen on various message
    boards is that the Coalition 4 ME/CFS requests have nothing to do with
    ME and ME was NOT included in their proposal requests because
    they did NOT ask for any changes.
    [NCHS topic packet:
    http://www.cdc.gov/nchs/data/icd9/TopicpacketforSept2011a.pdf
    The Coalition's proposal Option 1 does not mention ME]

    If this is what they asked for then it should have been listed with
    request for changes noted as they were very specific in the
    NCHS write up.

    [*Coalition 4 ME/CFS also claimed in their material that their proposal was
    ONLY to classify CFS as neurological but in the NCHS topic packet it it
    showed that they coded it to ME.]

    This Coalition 4 ME/CFS has extensive information on a separate
    website with announcements, press releases, FAQ's etc so hardly
    seems like it would be error or oversight.

    And claims that their proposal takes CFS out of the just fatigued category?
    All this about beating the CFS isn't chronic fatigue drum? That's the best
    you've got? OK I doubt it and this has not occurred in other countries
    that have done this exact same thing so I don't think so.

    Why the discrepancies?

    Jill McLaughlin

    -----

    http://drlapp.com/news/iacfs-2011-summary/
    Coalition 4 ME/CFS

    Many of you may be aware that over the next two years the manner in which
    illness is defined will be changing radically. Not only is the World Health
    Organization revamping its disease codes, but by January 2013 the National
    Center for Health Statistics will unveil the new International Classification of
    Diseases (ICD-10 CM). The latter is a totally new system of categorizing
    illness. How a disease gets categorized makes profound differences with respect
    to validity and understanding as well as reimbursement amounts and insurance
    issues.

    To this end, the Coalition will be sending letters and lobbying all agencies
    involved in the categorization process.

    Currently CFS is classified under Symptoms and Signs, Malaise and Fatigue, and
    the Coalition proposes moving CFS to Diseases of the Nervous System. Post
    Viral Fatigue Syndrome is currently classified as Other Disorders of the
    Brain, and the Coalition proposes moving PVFS to Diseases of the Nervous
    System also. ME is currently referred to as Benign Myalgic Encephalomyelitis
    and the Coalition proposes to redefine ME as Myalgic Encephalomyelitis
    (benign). The major point here is that ME is anything but benign to one who
    suffers with it, but the WHO and the NCHS insist on keeping the word benign
    because ME does not lead to imminent death. [Ed. note: perhaps non-fatal
    would be a better descriptor than benign!].

    The proposals take CFS and PVFS out of the just fatigued category and separate
    them from psychological disorders that also cause fatigue; they would bring the
    USA into alignment with the WHO classifications already in effect in Canada and
    Germany; and they support the recommendation of our CFS Advisory Committee to
    the Department of Health and Human Services.

    If asked to support the Coalition 4 ME/CFS, please give their proposals careful
    consideration!

    Posted on October 8, 2011 by Charles W. Lapp, MD (Hunter-Hopkins Center, P.A.)

    http://drlapp.com/news/iacfs-2011-summary/

    .
     
  2. medfeb

    medfeb Senior Member

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    Jill,

    I know that you have reviewed the proposal and have read earlier posts so I am sure you already know most of this but I'll post for the benefit of others...

    THe proposal contained a recommendation to modify both ICD-9-CM and ICD-10-CM, but the recommendation for ICD-9-CM was not accepted for consideration because ICD-9-CM is under lockdown. In ICD-9-CM, both CFS and PVFS are listed under Signs and Symptoms. In ICD-10-CM, only CFS is listed under Signs and Symptoms; PVFS is already listed under neurological diseases at G93.3 where it is the lead term. The recommendation for ICD-9-CM included a request to move both PVFS and CFS to neurological diseases, which as stated above, did not go forward. For ICD-10-CM, the proposal only included a recommendation to reclassify CFS, not ME or PVFS.

    The proposal also did not contain a recommendation to change the term for 'benign myalgic encephalomyelitis'. But in the NCHS meeting on Sept 14, 2011, someone from the audience (not affiliated with the Coalition or the CFSAC) recommended that the term 'benign myalgic encephalomyelitis' be renamed to 'myalgic encephalomyelitis (benign)' since there is nothing benign about ME. I asked a followup question on whether the term 'benign' could just be dropped and was informed that WHO standards would not allow that kind of change to be made.

    Contrary to what is stated in the first post in this thread, the proposal is very explicit about the intent to move CFS to G93.3 (it must be explicit to be accepted as a proposal by the NCHS). That is also covered explicitly in the FAQs and other material on the Coalition website.

    Jill,
    I am not sure what you are asking in the statement 'their proposal takes CFS out of the just fatigued category'. CFS is currently coded under the term 'Chronic Fatigue'. In fact, it is the only term under 'Chronic Fatigue'. The recommendation is to move CFS to G93.3 in alignment with how it is in every other country. Moving it to G93.3 will remove CFS from the 'Chronic Fatigue' category which will help to break that association.
     
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  3. Jill McLaughlin

    Jill McLaughlin

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    I do not think that a rehash of the same generic code info will benefit others. What you say you
    want or intend is not what this change will actually do.

    You claimed and billed it as reclassification of CFS. You coded it to ME. For the benefit of others,
    this will in effect make them the same and interchangeable. ME will no longer be a diagnosis
    in the US and will be a fatigue syndrome. The codes will not override the definition. The
    ME-ICC will be for naught.

    It will not do anything to distinguish it from chronic fatigue. The codes will not somehow
    re-brand it as something more. The WHO has done this as have other countries AND
    NOTHING HAS CHANGED.

    We have heard NOTHING from the conference on the Coalition's presentation of ICD code
    changes other than this. So I doubt that Dr. Lapp made this up. This was his conference
    summary. He would present as part of his conference summary a general comment
    made during a follow-up Q&A from an audience member who was not with the
    coalition *when he was NOT even at this NCHS meeting? I do not think so.


     
  4. Roy S

    Roy S former DC ME/CFS lobbyist

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    Illinois, USA
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  5. Jill McLaughlin

    Jill McLaughlin

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    People should read what they want wherever they want.

    This "Coalition" is acting to make changes to federal policy so it should
    not be secret or privileged information and should be shared.


     
  6. Jill McLaughlin

    Jill McLaughlin

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    But wait, the story changes again. Mary just said in her direct response to me that it was
    an audience member unaffiliated with the coalition who asked asked about the benign
    ME changes after the presentation was made.

    This is what is stated in the FAQ (read quickly before it changes):
    http://coalition4mecfs.org/ICDFAQ.html
    15. What is the coalitions position on the term benign myalgic encephalomyelitis?
    A. In the oral presentation made to the committee, Mary Dimmock asked that the word benign be removed from the ME listing, as there is nothing benign about this illness. However, the administrator said it must remain as that is the way it is listed in the WHOs ICD-10. One committee member suggested that the word benign be put in parenthesis after myalgic encephalomyelitis. The coalition does not consider this the best option, but it is preferable to benign being in front of myalgic encephalomyelitis.

    The term benign myalgic encephalomyelitis came about to indicate the illness does not lead to imminent death. The coalitions position is that the word benign can be misleading and trivializes the severity of the symptoms.

    -----

    Nice that they're so concerned about the word benign being misleading and trivializing but not about linking it to CFS.
    Guess that's not.



    But wait, the story changes again. Mary just said in her direct response to me that it was
    an audience member unaffiliated with the coalition who asked about the benign
    ME changes after the presentation was made. But this states that it was made
    by Mary during the presentation.

    This is what is stated in the FAQ (read quickly before this changes):
    http://coalition4mecfs.org/ICDFAQ.html
    15. What is the coalitions position on the term benign myalgic encephalomyelitis?
    A. In the oral presentation made to the committee, Mary Dimmock asked that the word benign be removed from the ME listing, as there is nothing benign about this illness. However, the administrator said it must remain as that is the way it is listed in the WHOs ICD-10. One committee member suggested that the word benign be put in parenthesis after myalgic encephalomyelitis. The coalition does not consider this the best option, but it is preferable to benign being in front of myalgic encephalomyelitis.

    The term benign myalgic encephalomyelitis came about to indicate the illness does not lead to imminent death. The coalitions position is that the word benign can be misleading and trivializes the severity of the symptoms.

    -----

    Nice that they're so concerned about the word benign being misleading and trivializing but not about linking it to CFS.
    Guess that's not.

    -------
     
  7. medfeb

    medfeb Senior Member

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    Jill,

    If you are really interested in knowing what was actually said at the Sept 14 NCHS meeting, you can listen to the audio - at 2:54, you will hear an audience member suggesting that the word 'benign' be moved to the end of ME and put in parenthesis. Then at 3:07, you will hear my followup question as to whether benign can be dropped versus just putting the term into parentheses. You will also hear that I explicitly acknowledge that the proposal did not include a request to change the term 'Benign ME' but that I wanted to follow up on the earlier speaker's suggestion.

    The link to the audio is here
    http://www.cms.gov/ICD9ProviderDiagnosticCodes/Downloads/091411_Meeting_Audio.zip
     
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  8. Jill McLaughlin

    Jill McLaughlin

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    Dr. Lapp's summary was questioned with regard to the proposal made to NCHS, then your response made no sense. Then the FAQ said something completely different, so NOW if you REALLY want to know what happened....
    I would like the truth to begin with but guess that's not an option.

     
  9. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Clay, Alabama
    If there is confusion, it is my fault. I wrote the FAQ, although it was reviewed by coalition steering committee members. This is splitting hairs.

    Mary made a prepared oral presentation. Administrator asked for questions. None came. Then she asked for comments. One person mentioned issue with the word "benign." Mary responded with coalition's view that the word benign should be removed. When administrator said that is not possible, the issue of putting it behind in parenthesis was mentioned and Mary said removal is preferred, but putting in parenthesis is better than before.

    I wrote up the FAQ as though the whole thing was the coalition's presentation, as in all Mary said was presenting the coalition's position to the committee. Also I used it as saying it did not happen at another time. To be more specific, I could have written it to say "during the discussion after the presentation."

    I used the word presentation generally instead of specifically to her prepared oral speech. Just as you might imagine the Q&A part of a scientist's presentation is part of the presentation. Mary's response to the questions about her presentation is also part of that presentation. So, if there seems to be discrepancy, it is my fault. Within the next couple of days, health and time permitting, we can adjust the FAQ on the coalition's website. All can listen to the recording, as Mary said.

    Hope that helps.

    Tina
     
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  10. justinreilly

    justinreilly Senior Member

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    NYC (& RI)
    Medfeb and Tina,

    at what point should i start the audio to hear the whole thing on ME?
     
  11. Jill McLaughlin

    Jill McLaughlin

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    Justin, Did you find it? I couldn't find it either.

     
  12. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Sorry, Justin, I am having trouble downloading it on my computer. I would say it is about halfway through. Mary has a very soft voice. They discussed procedure stuff in the first half.

    Tina
     
  13. medfeb

    medfeb Senior Member

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