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Article: Coalition4ME/CFS Pushes For CFS Be Classified as Neurological Disorder Before Governmental

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Sep 18, 2011.

  1. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Many thanks, Mary, for taking the time to set this out. I will keep a copy to hand when I go through the Coalition materials again and the meeting audio.

    I think it would be useful to have a link back to your post on the other thread where these issues are being discussed.

    Suzy
  2. medfeb

    medfeb Senior Member

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    Hi Suzy,

    Good idea on cross-linking. I am not up to speed with the open threads this week so I am not sure which one you are referring to. Would you mind creating a link to the post from there?

    Thank you
  3. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Hi Mary,

    I've added a link back to your post, here, (Post #40) on this thread, here, (Post #151)
  4. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    CDC Meeting materials and audio

    http://www.cdc.gov/nchs/icd/icd9cm_maintenance.htm

    [...]


    Partial Freeze of Revisions to ICD-9-CM and ICD-10-CM/PCS

    October 1, 2011 is the last major update of ICD-9-CM. Any further revisions to ICD-9-CM will only be for a new disease and/or a procedure representing new technology. Revisions will be posted on this website as addenda (revisions to procedures are posted on the CMS website).

    After October 1, 2011 there will be no further release of ICD-9-CM on CD-ROM.

    October 1, 2011 is the last major update of ICD-10-CM/PCS until October 1, 2014.

    Between October 1, 2011 and October 1, 2014 revisions to ICD-10-CM/PCS will be for new diseases/new technology procedures, and any minor revisions to correct reported errors in these classifications.

    Regular (at least annual) updates to ICD-10-CM/PCS will resume on October 1, 2014.

    ICD-10-CM/PCS, on CD-ROM will be released on October 1, 2012.

    The partial freeze was announced at the ICD-9-CM Coordination and Maintenance Committee meeting on September 15-16, 2010. See CMS website for more information.

    [...]


    Summary and Proposals

    Meeting September 14, 2011

    Summary [PDF - 31 KB] http://www.cdc.gov/nchs/data/icd9/2011SeptemberSummary.pdf

    Proposal [PDF - 140 KB] Note: This document was re-posted, if you downloaded the previous document you will need to download this updated document.

    http://www.cdc.gov/nchs/data/icd9/TopicpacketforSept2011a.pdf

    Audio of Meeting http://www.cms.gov/ICD9ProviderDiagnosticCodes/Downloads/091411_Meeting_Audio.zip

    Deadline for receipt of comments: November 18, 2011

    -----------

    ETA: Just an alert for those on slow connections, the audio is a 23.7MB Zip file.
  5. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Position statement

    May be reposted if posted in full

    Position statement

    25 September 2011

    Since I continue to be misrepresented on at least one other platform I am reluctantly publishing a public position statement.


    ME agenda is the name of one of several WordPress sites that I own. The site name was registered with WordPress in 2007.

    ME agenda is also the username I use on Facebook, on Twitter and on a number of other platforms.

    Within the last few days, ME agenda has several times been referred to as "a group" on Phoenix Rising forum and elsewhere.


    I have already clarified that ME agenda is not a "group" nor any kind of organisation. On the Disclaimer pages of my Dx Revision Watch website it states:

    "Dx Revision Watch is not an organisation.

    "This site has no connection with and is not endorsed by the American Psychiatric Association (APA), American Psychiatric Publishing Inc., World Health Organisation (WHO) or any other organisation, institution, corporation or company.

    "This site has no affiliations with any commercial or not-for-profit organisation. The site operates independently of any patient or advocacy organisation or group.

    "This site does not accept advertising, sponsorship, funding or donations and has no commercial links with any organisation, institution, corporation, company or individual."



    On my ME agenda website it states:

    "ME agenda is not an organisation.

    "This site has no connection with and is not endorsed by any organisation, institution, corporation or company. The site has no affiliations with any commercial or not-for-profit organisation and operates independently of any patient or advocacy organisation or group.

    "This site does not accept advertising, sponsorship, funding or donations and has no commercial links with any organisation, institution, corporation, company or individual."



    So ME agenda is not "a group"; does not function as "a group" nor as any form of organisation, and the name ME agenda and my websites are associated only with one individual - myself.

    The advocacy work that I do under my own name and in association with the name ME agenda is undertaken as an individual with an interest in a specific health area, as a primary carer of a young adult. I do not claim a mandate to represent others and the views and opinions I hold are the views and opinions of a single individual.

    I therefore request that neither I nor ME agenda nor my websites are referred to on any platform as "a group", since this is erroneous and misrepresents me.



    It has also been misstated on Phoenix Rising forum and elsewhere, that I am "trying to get CFS reclassified as ME".

    This is not the case and again, misrepresents my position.

    My position (that has already been set out on Phoenix Rising forum) is this:

    I consider as an individual, not as any form of "group", since I am not any form of "group":


    that it will hurt patients if Chronic fatigue syndrome is coded in ICD-10-CM under Chapter 18, the chapter for "Symptoms, signs and ill-defined conditions", under "R53.82 Chronic fatigue, unspecified > Chronic fatigue syndrome NOS";

    that Chronic fatigue syndrome should be classified in Chapter 6 to the "G93" parent class, in line with ICD-10, ICD-10-CA (Canada) and ICD-10-GM (Germany), and in line with ICD-11 proposals that Chronic fatigue syndrome should be classified within Chapter 6: Diseases of the nervous system;

    that classifying Chronic fatigue syndrome under the Chapter 18 "R" codes, in ICD-10-CM, will render patients more vulnerable to the proposals of the DSM-5 "Somatic Symptom Disorders" workgroup.​



    These are views shared by other advocates, patients and carers, internationally, by the US CFSAC Committee (the Chronic Fatigue Syndrome Advisory Committee that provides advice and recommendations to the Secretary of Health and Human Services) and by a number of US 501(c)(3) registered patient advocacy organisations.


    I have never stated nor implied that I am "trying to get CFS reclassified as ME".


    I hope this makes my position clear and I trust that there will be no future misrepresentation of my views or my actions on any platform.

    As many of you will be aware, discussion of the issue of the long-standing proposals for the coding of Chronic fatigue syndrome in ICD-10-CM was on the agenda of the meeting of the ICD-9-CM Coordination and Maintenance Committee which took place on September 14.

    An audio of this meeting and PDFs of meeting materials can be accessed from this page on the CDC website:

    http://www.cdc.gov/nchs/icd/icd9cm_maintenance.htm

    These materials and links and related ICD-10-CM coding issue material will be added to my sites in due course.


    Suzy Chapman
    _____________________

    http://dxrevisionwatch.wordpress.com
    http://meagenda.wordpress.com
    http://www.facebook.com/MEagenda
    http://twitter.com/MEagenda
  6. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Mary Schweitzer: Medical Classification WHO ICD codes (Co-Cure)

    May be reposted

    Co-Cure URL: https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1110b&L=co-cure&T=0&P=6274

    From: "Mary Schweitzer"
    To: Co-Cure
    Friday, October 14, 2011 2:11 AM
    Subject: [CO-CURE] ACT: Medical Classification WHO ICD codes



    There has of late been speculation that it would be bad for U.S. patients if CFS and M.E. were placed in the same category in the neurology chapter of ICD-10-CM, the "clinical manual" of ICD-10 that will be adopted for use in the United States.

    But the fact of the matter is that in ICD-10, CFS already IS coded to G93.3, "PVFS and M.E." in the index, which is as authoritative as the tabular version. [PVFS stands for Post-Viral Fatigue Syndrome, and is not diagnosed very frequently any more - not at all in the U.S.]. It already IS coded in neurology.

    110 nations use ICD-10 as-is, including the UK. Australia has a clinical version that does not alter the codes for M.E. or CFS. But Canada and Germany have clinical versions that place CFS in the tabular version of ICD-10, in G93.3 with M.E. In fact, it was the Canadian clinical version, ICD-10-CA, which led to the highly regarded Canadian Consensus Criteria for ME/CFS in 2003.

    NOBODY EXCEPT THE UNITED STATES CODES CFS IN THE "R" CHAPTER. If we coded CFS at R53.82, which was the plan of NCHS, we would have been the ONLY nation in the world to do so.

    Furthermore, M.E. is not a known diagnosis in the U.S. (WE know about it, but very few doctors do.) There is no definition for it approved by CDC. We can now point to the new definition that was published in the Journal of Internal Medicine, but that is more likely to enable researchers in the US and Canada to use M.E. if they want to, than to trickle down to U.S. clinicians. Part of the problem is that when M.E. replaced atypical polio as a disease name in British commonwealth nations and Europe, in the U.S. the new name was epidemic neuromyesthenia, which has not (to my knowledge) been diagnosed in decades.

    So if CFS gets coded as R53.82 in the U.S.'s ICD-10-CM, yes, M.E. will be less likely to confuse with CFS - but that would only be in the U.S., and in the U.S. we only get diagnosed with that revolting name CFS anyway. At least we could get them scratching their heads and asking, "What is M.E.?" if both diseases were placed together where those of you outside the U.S. already have it.

    Given that U.S. doctors do not have a high opinion of CFS, keeping it under "R" in "vague signs and symptoms" would only reinforce their prejudice against it as a "garbage diagnosis" - something you diagnose when you run out of ideas.

    Finally, there was an inadvertent error in an earlier Co-Cure message about getting CFS out of the "R" category. The "R" category is not for psychiatric diagnoses.

    British psychiatrists use "fatigue syndrome," which is coded at F48.0 under neuroses at "neurasthenia.". Then when they write about it, they mix and match terms so it looks as if CFS is the same thing, and therefore it goes in F48.0. That is a serious problem in the UK. [I have to admit to being alarmed recently when a U.S. virologist connected CFS not to the history of post-polio syndrome, which is pretty well established, but to the arcane nineteenth century diagnosis of neurasthenia. Please don't do that!]

    We are not (I hope) in current danger of being coded under neuroses at F48.0, neurasthenia, in the U.S. But the "R" diagnosis is sufficiently vague that it wouldn't be difficult to use it to claim CFS patients really have CSSD (Complex Somatic Symptom Disorder), the category British psychiatrist and CBT advocate Michael Sharpe is trying to shoehorn into DSM-5, the new version of the American Psychiatric Association's huge diagnostic tome. So it does leave us vulnerable.

    To those outside the US I would say, look to ICD-11. That's what will affect you the most. To those in the US (where we are finally getting around to adopting ICD-10-CM two decades after ICD-10 was written), what WE need is simply to get in step with the rest of the world now.

    Mary M. Schweitzer

    ---------------------------------------------
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    ---------------------------------------------
    Co-Cure's purpose is to provide information from across the spectrum of
    opinion concerning medical, research and political aspects of ME/CFS and/or
    FMS. We take no position on the validity of any specific scientific or
    political opinion expressed in Co-Cure posts, and we urge readers to
    research the various opinions available before assuming any one
    interpretation is definitive. The Co-Cure website <www.co-cure.org> has a
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  7. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    As I have posted screenshots today in a site posting, I thought we may as well have them, here, as well.

    Taken from Dx Revision Watch post:

    Extracts from Diagnosis Agenda: ICD-9-CM Coordination and Maintenance Committee Meeting September 14, 2011 (Coding of CFS in ICD-10-CM)

    Shortlink Post #93: http://wp.me/pKrrB-1iB


    [​IMG]


    Ed: Note that Option 1 (Proposal by the Coalition4ME/CFS) does not display the term Benign myalgic encephalomyelitis under G93.3 Postviral fatigue syndrome. This is because no change to the placement of this term is being requested by the Coalition4ME/CFS, that is, no request to Add, Delete or Revise the term from its current proposed placement under G93.3 is being requested.


    [​IMG]


    Ed: Note that discussion of whether class 1 excludes were more appropriate than class 2 excludes took place at the NCHS meeting.


    Note on ICD-10-CM use of Excludes1 or Excludes2

    https://www.cms.gov/ICD10/Downloads/6_I10tab2010.pdf

    ICD-10-CM TABULAR LIST of DISEASES and INJURIES

    Instructional Notations


    [...]


    Excludes Notes

    The ICD-10-CM has two types of excludes notes. Each note has a different definition for use but they are both similar in that they indicate that codes excluded from each other are independent of each other.

    Excludes1

    A type 1 Excludes note is a pure excludes. It means "NOT CODED HERE!" An Excludes1 note indicates that the code excluded should never be used at the same time as the code above the Excludes1 note. An Excludes1 is for used for when two conditions cannot occur together, such as a congenital form versus an acquired form of the same condition.

    Excludes2

    A type 2 excludes note represents "Not included here". An excludes2 note indicates that the condition excluded is not part of the condition it is excluded from but a patient may have both conditions at the same time. When an Excludes2 note appears under a code it is acceptable to use both the code and the excluded code together.

    -------------


    Full NCHS meeting Proposals document:

    http://www.cdc.gov/nchs/data/icd9/TopicpacketforSept2011a.pdf


    You can download an Audio of the September 14 NCHS meeting here: http://www.cms.gov/ICD9ProviderDiagnosticCodes/Downloads/091411_Meeting_Audio.zip

    [Note this is a large Zipped file. The section for discussions on CFS coding starts at 2 hours 27 minutes in from start and ends at 3 hours 02 minutes.]


    Suzy

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