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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. Phoenix Rising Team

    Phoenix Rising Team

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  2. madietodd

    madietodd Senior Member

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    Cort, why would I "not have permission to view this page"?
  3. rlc

    rlc Senior Member

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    As Cort is still denying people access to the article that he wrote, which shows what he and the Coalition 4 ME/CFS have really been doing behind peoples back, including all the members of phoenix rising, which is causing outrage across the planet I will repost it for all the people who didnt get to see it yesterday.

    Moderator: Content removed. Articles are removed for a reason; please respect it.
  4. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Mary Schweitzer Co-Cure post: ACT: ICD-9-CM and ICD-10-CM

    ----- Original Message -----

    Sent: Monday, September 19, 2011 11:10 PM
    Subject: [CO-CURE] ACT: ICD-9-CM and ICD-10-CM


    There has been a lot of smoke around this subject lately, so since I've spent years on the subject and testified to CFSAC about it, I thought I should share what I know, and what I believe. (Besides, I don't want to have to write any more emails about it!)

    The World Health Organization (WHO) puts out what is called the "International Classification of Disease," so that nations keep comparable statistics on diseases. About once a decade they revised it, until ICD-10, which took 15 years, and now ICD-11 has already taken more than 20.

    Most nations just use the version published by WHO - and that includes the UK. A few nations (Canada, Australia, Germany, the U.S.) publish their own clinical manual. The rules they have agreed to as signatory nations is that it is okay to add a disease not in WHO's version, and they may subtract a disease that WHO includes but is not diagnosed in that country. They are NOT supposed to MOVE a disease into a different chapter altogether, because that would defeat the purpose of having international codes in the first place. The US versions are called ICD-9-CM and will be called ICD-10-CM.

    There are two versions - the "tabular" version, which is organized by category, and the "index," which provides an alphabetized listing of specific medical conditions and directs you to the correct category. The tabular version is smaller, but the index version is just as authoritative.

    For reasons that I cannot fathom, WHO only has the tabular version on Internet. But I have on my hard drive photocopied copies of the page in the printed index to ICD-10 that relates to CFS. "Syndrome, Fatigue, Chronic" goes in G93.3.

    In 1969, WHO placed M.E. In the neurology chapter, giving it the code 323.9. They gave it the formal name it was first blessed with in the mid-1950s, "benign Myalgic Encephalomyelitis," because it didn't have a high mortality rate. However, The late Melvin Ramsay and other British experts immediately discarded the word "benign," because, as Ramsay put it, there was nothing "benign" about this disease! Why WHO keeps that word is beyond me, but the point is that M.E. had the code 323.9 under neurological conditions from 1969 on.

    In 1988, a new name and definition was introduced to the world. The name was Chronic Fatigue Syndrome, and the definition is known as Holmes 1988 for the CDC epidemiologist who ran an earlier meeting to rename "Chronic Epstein-Barr." NOTHING, not even a footnote, in the Holmes 1988 article mentions M.E. or its American version, epidemic neuromyesthenia. But that same year the late Stephen Straus of NIAID at NIH published an article tying CFS to epidemic neuromyesthenia - and also to "mental health problems," citing two articles published in the early 1970s in the BMJ insisting that M.E. was really mass hysteria because the outbreaks occurred among female students and nurses living in residential dormitories. Soon British psychiatrist Simon Wessely had switched that to "neurasthenia" (citing a text written in 1869 - can you imagine the type of medical information available in 1869? The recommended action for a bullet in the leg was to saw the thing off.). Straus, Wessely, psychiatrist Peter White, and CDC's head of CFS, Bill Reeves, all juxtaposed the insistence that this disease was psychogenic with statements about it mainly impacting women - they even showed a slide of a woman in Edwardian dress lying back on a fainting couch. The American version did not use neurasthenia (which is not in DSM-IV), substituting instead "stress" - at first yuppie stress caused by "trying to have it all," later, an inability to handle "stress" caused by childhood traumas.

    Chronic Fatigue Syndrome never made it into WHO's ICD-9 because by 1988, WHO was busy working on ICD-10, which was published a couple of years afterwards. So the US had carte blanche to put it where they wanted to. Since CDC liked to diagnose it by beginning with "chronic fatigue" and narrowing that down to "chronic fatigue syndrome," CFS was placed in the category "vague signs and symptoms," at 780.71.

    Those who have complained that CFS is treated like a "garbage diagnosis" - what's left over after everything else has been ruled out - can point to that designation as the reason. That is the chapter where you PUT a garbage diagnosis - and it would remain a "garbage diagnosis" in ICD-10-CM version if it was coded in chapter "R" at R53.82.

    When WHO got around to coding CFS, it went into the same category as M.E. and a diagnosis not given that frequently any more, PVFS, or post-viral fatigue syndrome. That does not mean they are the same thing. It does mean that WHO considers them similar, and it also means that WHO decided CFS belonged in neurology, not "vague signs and symptoms."

    British psychiatrists have tried to use "neurasthenia" (a nervous condition, the vapors, a nervous breakdown) instead of M.E., but they have been scolded by Parliament for doing so because it violates ICD-10. So the Peter White/Simon Wessely/Michael Sharpe crowd created the designation "fatigue syndrome," which IS coded to F48.0, or neurasthenia.

    Trust me, this game is full of land mines.

    ICD-10 was out and in use early in the 1990s. Canada adopted it soon after the millennium change, but where CFS was only in the index of ICD-10, Canada's version, ICD-10-CA, placed it in the tabular version at G93.3. Since some Canadian doctors diagnosed M.E. and others diagnosed CFS, the National M.E./FMS Society of Canada brought together an international committee of clinicians to create a CONSENSUS criteria, which was adopted by Canada in 2003. The document ran 100 published pages with a huge bibliography in the Journal of CFS, but Bruce Carruthers and Marjorie van de Sande wrote a summary, which we all know (and love) as that marvelous multicolored pamphlet that has been handed out all over the world, made available to all by the Canadian ME/FMS Society (with thanks to Lydia Neilson).

    If you liked the Canadian Consensus Criteria, you should be pleased with the designation of CFS in G93.3 with M.E., because that is why it exists.

    ICD-10 has been out in the world for twenty years now, and WHO is working on ICD-11. If it were up to me, we would, frankly, just skip ICD-10-CM altogether and wait a couple more years and then adopt ICD-11-CM, but we're not going to do that.

    So, what are the choices for ICD-10-CM?

    1. Reeves wanted it coded at R53.82 - that is, in the chapter on vague signs and symptoms, the garbage diagnosis chapter. WE WOULD BE THE ONLY NATION IN THE WORLD TO DO SO.

    2. CFSAC has twice recommended we follow Canada's lead and put CFS in G93.3 with M.E. and PVFS. I think this is the simple and obvious solution - particularly since it is probable WHO will continue to code CFS and M.E. together in ICD-11.

    3. I have heard of a compromise where CFS would be placed in neurology (thereby fulfilling the requirement that it remain in the same chapter), but place it in a different location in G. I disagree with this for the simple reason that we have NEVER fared well when CDC went against the rest of the world where our disease is concerned.

    Back in the 1950s, when the rest of the world was diagnosing M.E., the U.S. went its own way with the name epidemic neuromyesthenia. That hurt us in the 1980s. Had the North Tahoe and Lyndonville outbreaks occurred in the UK, the patients would have been diagnosed with M.E. But M.E. was unknown in the US, and very few clinicians still alive used epidemic neuromyesthenia (plus the word "epidemic" gave CDC hives).

    I vividly recall years when NCHS at CDC pulled M.E. from ICD-9-CM altogether. Because of that, most computerized coding systems (which is what everyone uses) do not even include 323.9 - and that can make it hard to get reimbursed for an M.E. diagnosis. I don't want to see G93.3 mysteriously disappear in the same fashion.

    So - I think the U.S. should quit playing the Lone Ranger here, and support M.E. by supporting the designation of G93.3 for CFS. We can distribute both the 2003 Canadian consensus criteria and the new definition of M.E. that was published with an October 2011 date in the "Journal of Internal Medicine."

    I have attended almost every CFSCC and CFSAC meeting since 1996 - sometimes in a wheelchair, but I was always there. I think our best argument for legitimizing M.E. is to point to it in ICD-10 and ICD-10-CA (Canada's version - Germany followed Canada, but Australia followed the UK. NOBODY followed the CDC.)

    Mostly, however, I have enormous respect for our pragmatic, intelligent neighbors to the North. If Canada put CFS in G93.3, that's good enough for me.

    Mary Schweitzer
    Patient, advocate, author

    ---------------------------------------------
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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
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    PANDORA and WillowJ like this.
  5. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Additional information about the various volumes of ICD-10

    Some additional information about the various volumes of international ICD-10


    ICD-10 Volume 1: The Tabular List is available online here:

    Tabular List of inclusions and four-character subcategories Chapter List Version for 2007:

    http://apps.who.int/classifications/apps/icd/icd10online/


    Volume 2 The Instruction Manual is also accessible online in PDF format:

    http://www.who.int/classifications/icd/ICD-10_2nd_ed_volume2.pdf


    But ICD-10 Volume 3: The Alphabetical Index is sold commercially in print or CD Rom and is an income generator for the WHO. There is an unauthorized copy of the Index on Scribd at this URL (the copyright page has been removed):

    Unauthorised copy of Volume 3: The Alphabetical Index Version for 2006:

    Chronic fatigue syndrome is indexed on Page 528:

    http://www.scribd.com/doc/7350978/ICD10-2006-Alphabetical-Index-Volume-3


    Scanned images of the listing for Chronic fatigue syndrome in Volume 3: The Alphabetical Index can be viewed on ME Action UK site here:

    http://www.meactionuk.org.uk/G93-3-ICD-10-index.jpg (whole page)

    http://www.meactionuk.org.uk/G93-3-ICD-10-index-closeup.jpg (close up)


    There is also a separate publication for ICD-10 Chapter 5 Mental and behavioural disorders which can be downloaded here (colloquially known as "the Blue Book")

    ICD-10 Classification of Mental and Behavioural Disorders Clinical descriptions and diagnostic guidelines (the Blue Book):

    http://www.who.int/classifications/icd/en/bluebook.pdf


    ICD-11 is currently scheduled for implementation in 2015, but the Revision Steering Group targets for the Beta Draft have slipped and have been extended. A less advanced draft had been scheduled for release in May, this year, then postponed to July, but is further delayed. A draft is now anticipated at some point this autumn, which will be on a new platform, for which stakeholders will be able to register in order to comment. (But note, this will not be like the DSM-5 review and comment process.)

    ICD-11 is being developed on a separate multi editor electronic platform to the version currently viewable by the public; the public version does not display all the fields that ICD Revision are in the process of generating content for, on their own platform, nor does it display the "Discussion Notes" that document changes to codes, parent classes and the reorganization of categories. The version currently viewable by the public comes with WHO caveats. Please do not rely on the version of the Alpha Draft as it currently displays: it is incomplete, in a state of flux, may contain errors and omissions and updated on a daily basis. New coding systems for ICD-11, temporary "Sorting labels" and parent classes are subject to revision as the various sections within Chapter 6: Diseases of the nervous system (the Neurology chapter) are reorganized.


    WHO committed, in 2007, that all versions of ICD-11 will be freely accessible online, though there will be a print version, too. The print version will have condensed content, for example, shorter Definitions than the length of Definitions proposed for the online version, where there is more space at their disposal than in a print edition.

    For ICD-11, there will also be separate, speciality publications for specific chapters, like Mental and behavioural disorders, Paediatrics and Neurology.


    The version of ICD-10 The Tabular List that is online is Version for 2007. But according to WHO documentation, an ICD-10 version for 2010 which will reflect all the annual updates to ICD-10 since 2007 was expected to be published online in March. As with much of WHO, this is delayed and a Version for 2010 has yet to appear online.

    Suzy Chapman
  6. madietodd

    madietodd Senior Member

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    Suzy -

    Thanks for sharing this information so clearly. Does this mean that ALL that is going on at the moment is the possibility of moving the CFS designation to a new place? That CFS will now share insurance coding with ME?

    Or is there concurrently a drive to substitute 'ME' for 'CFS' everywhere, removing the CFS diagnostic criteria in the process, and replacing with ME criteria?

    If the latter, does anybody have copies of current and proposed diagnostic criteria for CFS and for ME?

    My brain can't handle a lot of information in one place, so please be gentle with me. Short, targeted responses are most helpful.

    Thanks,

    Madie
  7. ukxmrv

    ukxmrv Senior Member

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    Madie,

    This pertains to the way in which the World Health Organisation classifies different diseases. The USA uses one version of their manual and it is being updated with changes proposed on where CFS should go.

    Can you answer that question for us in the UK who may be only guessing in many ways.

    For example

    Does your doctor or insurance company use the existing WHO ICD codes and if you have CFS which one?

    Who else in the USA uses WHO codes and for which purposes?
  8. WillowJ

    WillowJ Senior Member

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    In the USA we use the ICD-CM codes for insurance/billing purposes. CFS has been coded at the wastebasket code 780.71 (which corresponds to the R chapter in WHO). There is no code for ME in the CM, and has not been for quite some time. That is currently the only place to code ME/CFS unless the doctor makes something up and uses other signs and symptoms.

    I think ICD-10-CM and presumably subsequent versions will more closely match WHO codes than our past versions.

    Current proposal for CFS in ICD-10-CM:

    1) ICD-09-CM CFS converts to R53.82 Chronic Fatigue, unspecified

    2) new entry for G93.3 Postviral Fatigue Syndrome, described as Fukuda, excludes R53.82 (here still called "Chronic Fatigue Syndrome, not otherwise specified"), applicable to benign Myalgic Encephalomyelitis, said to be related to the ICD-09-CM code 780.97 other malaise and fatigue (muscle weakness, among other things; a more respectable symptom).

    So on the one hand, CDC is pretending the Tahoe fiasco never happened, but on the other hand, they are still using the faulty CFS definitions. Truth is, indeed, stranger than fiction.
    mezombie and SOC like this.
  9. WillowJ

    WillowJ Senior Member

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    I forgot to say we are behind the rest of the world on which version we use, too. We are still on the 9th version. We somehow think it's a huge bother to learn a new coding system. We won't be using version 10 until the rest of the world is using version 11. I don't remember when we expect to start using version 11, but not for some years.
  10. ukxmrv

    ukxmrv Senior Member

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    Willow,

    Do you have a current listing for "post viral syndrome" anywhere in your ICD-9?

    (p.s. I found the link above earlier but was not sure how accurate it was)

    and what is is the part about excluding CFS NOS?

    The reason I am asking is that someone posted a link to a talk in the UK on the ICD codes and the speaker appeared to be trying to split CFS into post viral and not post viral.

    Is that the case here now in your current ICD or what they may be trying to do in the new one?

    (and I'm not referring to the Coalition here, just a general idea of what "the powers that be" may be planning)
  11. WillowJ

    WillowJ Senior Member

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    The link above seems to match what my doctors use. That's all I know about its accuracy. It's easier to use than the one from the CDC site, which you can download but I think it comes as a pdf. http://www.cdc.gov/nchs/icd/icd9cm.htm

    The original proposal from CDC, which used to show on the ICD10data site, was to break CFS into two parts, both named CFS. One would be CFS, postviral, and one would be CFS, NOS. The postviral one would be in G93.3 and the NOS one would be in R53.82. A patient could only be diagnosed with postviral/neurological CFS if a specific viral trigger could be established. (Which would be, not very many, because doctors just aren't that interested and ambitious, and they are told not to test for that, and the 6 months rule, and so on.)

    According to the site that's easy to use, they have evidently not chosen to call both CFS anymore (which would be not allowed under WHO rules). However, their current proposal is still effectively the same (two listings for a single disease) even if they change the name of "CFS, NOS" to "Chronic Fatigue, unspecified".

    I cannot find an ICD-09-CM code for PVFS. WHO classifies it with ME; I imagine it was stricken from the CM with ME.
    SOC likes this.
  12. ukxmrv

    ukxmrv Senior Member

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    Willow,

    Thank you very much indeed!


    In your opinion what will happen to USA CFS diagnosed patients if the changes go ahead to have CFS under the G93.3 code and a further CF under another code?

    Will all current CFS diagnosed patients (i.e. dx'ed with Fukuda etc) be transferred to G93 or only those with a clear post viral element to their disease.

    (once again I am thinking of that Peter White talk on the ICD in the UK where he seems to insinuate that it's the post viral element that splits people in his opinion and anyone who does not have a viral trigger could be psychological and assigned to another code. I think Peter White had contacts in the CDC?)
  13. WillowJ

    WillowJ Senior Member

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    you're very welcome :Retro smile:

    In my opinion, if they go ahead with CDC's version (either one), most people diagnosed with CFS will get the CF (or CFS, NOS) diagnosis at the R code, not G93.3, because the R code is what is built into the code as the conversion. Even many people who have a clear post-viral (or chronic viral) element, would probably end up in the R code, in my assessment. I would expect that only those few people with very savvy doctors (or doctors who listen to the patients and say things like "you know more about this particular disease than I do") or ME/CFS specialists will get a G93.3 diagnosis.

    It's difficult to say whether the R code would lead to even worse medical care because the doctors would perceive they were being told the patient had never had a real condition to begin with and there is no such thing as ME/CFS... or whether doctors would figure that a symptom diagnosis was worthless and try to diagnose something else (but, given no tools to diagnose/assess ME, their patients will still be left with either mystery illness or hypochondriosis, depending on the humility level of the particular doctor). Probably some of both.

    I cannot see the PVFS code getting much use, unless there are drastic political changes. Even if there were, by leaving the R code available, patients are left at the mercy of the humility/arrogance and knowledge/ignorance of individual physicians. This is not standard practice (as I figure you know, but I want to write on the thread). Generally we tell doctors "this is a neurological disease"; we do not leave it to chance whether a Multiple Sclerosis or Lupus patient gets diagnosed with the correct (and WHO-sanctioned) diagnosis or a wastebasket one. And some of these other diseases are not easy to diagnose or figure out where the disease begins and ends, also. ME is not unique in this respect.

    Back when the CDC used to reference everything they said, about every third reference was a White P paper. I thought he was mentioned here where Mary Schweitzer talks about exclusively (bio)psychosocial school consultants at US health agencies, but that was "only" SW and MS. I think White has collaborated producing one or more publications with CDC, but I don't think that's live on the site anymore. Anyway, I can't prove it at the moment, but I would think White had contacts at the CDC, but it's certain some of his buddies do.
  14. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Hi Willow,

    As you say, the US is behind the rest of the world, and still using a US specific "Clinical Modification" or adaptation of the WHO's long since retired international ICD-9, which was replaced with international ICD-10, in 1992.

    ICD-10-CM (which is an adaptation of ICD-10) is scheduled for implementation in October 2013.

    But ICD-11 is not scheduled for implemention until at least 2015 (originally it was 2012 but the WHO extended the Timeline).

    So the US will be using ICD-10-CM well before ICD-11 is piloted and implemented, internationally.


    As I've said in a previous post in this thread, the Revision Steering Group targets for the Beta Draft for ICD-11 have slipped and have been extended. A less advanced draft of ICD-11 had been scheduled for public release in May this year, then postponed to July, but is further delayed.

    A public draft of ICD-11 is now anticipated at some point this autumn, which will be on a new platform, and for which stakeholders will be able to register in order to comment. (But note, this will not be a short review period like the DSM-5 review and comment process, and the draft will be subject to regular updating as the work progresses, not a static document.)

    It would not at all surprise me if ICD-11 is not ready by 2015.

    It is a hugely ambitious project and its structure and presentation will be unlike that of ICD-10. The WHO are short of funding; targets for drafts have slipped for both software development and the generation of textual content. There will be far more textual content in ICD-11 than in ICD-10 and this is taking time for the various work groups to generate as this work is done on top of their professional commitments and they are scattered all over the world, working via email and a multi-editor electronic platform (which is not the platform that the public can currently view, which is in a state of flux and displays only limited content).


    Once the US specific ICD-10-CM has been implemented, no firm date is available for when the US will move onto ICD-11 or a "Clinical Modification" of ICD-11.

    But it's understood that the US may not move onto an adaptation of ICD-11 until 2020+.

    According to WHO-FIC documentation, Canada is not expected to move onto ICD-11 or a "Clinical Modification" of ICD-11 until 2018+.

    Australia, which currently uses a "Clinical Modification" of ICD-10, it anticipated to move onto ICD-11 or an adaptation of ICD-11 earlier that the US and Canada.


    People viewing the http://www.icd10data.com/ site should be aware that this is not an official CDC or ICD site. It is a commercial site that aggregates data from ICD, but also aggregates definitions from other US medical classification systems.

    Suzy
  15. WillowJ

    WillowJ Senior Member

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    thanks, Suzy :Retro smile:
  16. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Why does the IMEA want a "Chronic fatigue syndrome NOS" under G93?

    According to documentation, the Coalition4ME/CFS had proposed this:


    ICD-10-CM TABULAR PROPOSED CHANGES

    Option 1 (proposed by Coalition 4 ME/CFS)

    G93 Other disorders of brain

    Retain "G93.3 Postviral fatigue syndrome"
    Add "Chronic fatigue syndrome" here
    Delete "Excludes1: chronic fatigue syndrome NOS (R53.82)"

    R53 Malaise and fatigue

    R53.8 Other malaise and fatigue
    Retain "R53.82 Chronic fatigue, unspecified" here
    Delete "Chronic fatigue syndrome NOS"
    Add "Excludes 1: chronic fatigue syndrome (G93.3)"


    (Ed: Note: it is implicit that category "Benign myalgic encephalomyelitis" remains under G93.3 since no instruction to delete is included.)

    ----------


    The NCHS has since proposed this:


    Option 2 (proposed by NCHS):

    G93 Other disorders of brain

    Revise G93.3 to become "Postviral and other chronic fatigue syndromes"
    Delete "Benign myalgic encephalomyelitis" here
    Delete "Excludes 1: chronic fatigue syndrome NOS (R53.82)"

    Add a new code G93.31 Postviral fatigue syndrome
    Retain "Benign myalgic encephalomyelitis" here

    Add a new code "G93.32 Chronic fatigue syndrome"
    Add "Chronic fatigue syndrome NOS" here
    Add the words: "Excludes2: chronic fatigue, unspecified (R53.82)"

    R53 Malaise and fatigue

    R53.8 Other malaise and fatigue

    Retain "R53.82 Chronic fatigue, unspecified"
    Delete "Chronic fatigue syndrome NOS" here
    Add "Excludes2: chronic fatigue syndrome (G93.32)"
    Revise "postviral fatigue syndrome to become (G93.31)"


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

    The IMEA, according to a news release circulated yesterday, is proposing and seeking support for the following:

    ICD-10-CM TABULAR PROPOSED CHANGES
    from the International ME Association


    G93 Other disorders of brain

    G93.3 Viral and infectious and post-infectious diseases of the nervous system with post-exertion symptoms.

    Delete "Benign myalgic encephalomyelitis" here
    Delete "Excludes 1: chronic fatigue syndrome NOS (R53.82)"

    Add a new code G93.31 Myalgic encephalomyelitis
    Delete "Benign myalgic encephalomyelitis" here

    Add a new code "G93.32 Postviral fatigue syndrome

    Add a new code "G93.33 Chronic fatigue syndrome"
    Add "Chronic fatigue syndrome NOS" here
    Add the words: "Excludes2: chronic fatigue, unspecified (R53.82)"

    R53 Malaise and fatigue

    R53.8 Other malaise and fatigue

    Retain "R53.82 Chronic fatigue, unspecified"
    Delete "Chronic fatigue syndrome NOS" here
    Add "Excludes2: chronic fatigue syndrome (G93.32)"


    -----------


    Leaving aside, for the time being, the issue of whether NCHS would give consideration to creating a new sub class to parent class "G93 Other disorders of brain" of "G93.3 Viral and infectious and post-infectious diseases of the nervous system with post-exertion symptoms" with several child classes associated with it.

    Leaving aside whether this new sub class could be considered under WHO ICD classificatory rules.

    Leaving aside whether "Myalgic encephalomyelitis" [sic] and its ICD-10 Title class "Postviral fatigue syndrome" could be transposed under WHO ICD classificatory rules.

    Leaving aside whether the "Benign" prefix (which has historical meaning in the context of WHO ICD disease nomenclature) could be dispensed with by ICD-10-CM committees without the sanction of WHO, Geneva.

    And leaving aside whether a sub class "Viral and infectious and post-infectious diseases of the nervous system with post-exertion symptoms" is considered a valid and helpful construct, bearing in mind that, to cite just one example, a significant number of patients report onset of illness following vaccinations or pesticide exposure...

    has the IMEA set out its rationale for proposing that the current entry for

    "Chronic fatigue syndrome NOS"

    should be deleted from the R53.82 section of Chapter 18 for "Symptoms, signs and ill-defined conditions" but inserted under

    "G93.33 Chronic fatigue syndrome"

    as per the NCHS's proposal?


    One of the historic proposals for ICD-10-CM had been that PVFS, (B) ME and Chronic fatigue syndrome would all three be coded in Chapter 6 under the parent class "G93 Other disorders of brain" and that a "Chronic fatigue syndrome NOS" would be listed under R53.

    The G93.3 category entry for "Chronic fatigue syndrome" was subsequently removed from under the G93 parent code, leaving PVFS and (B) ME under G93 in Chapter 6, with the "Chronic fatigue syndrome NOS" orphaned in the Chapter 18 R codes - which leaves the clinician, under current proposals as published at the end of 2010 on the CDC site, the choice of coding for:

    G93.3 Postviral fatigue syndrome
    Benign myalgic encephalomyelitis


    or coding for

    Chronic fatigue syndrome NOS in the R code chapter.


    So I am interested to know whether the IMEA has set out why it considers it advantageous to have both an entry for

    Chronic fatigue syndrome and an entry for

    Chronic fatigue syndrome NOS

    under its proposed new sub class "G93.3 Viral and infectious and post-infectious diseases of the nervous system with post-exertion symptoms"

    and under what circumstances the IMEA considers that "Chronic fatigue syndrome NOS" would be selected by the clinician in preference to any of the other category codings currently being proposed under parent class G93 by IMEA?



    Suzy
  17. Bob

    Bob

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    Thanks Suzy.
    Could you clarify something for me please, as it has been causing some confusion...
    Are these proposed changes (e.g. 'delete' & 'insert') based on the ICD-10, the ICD-9-CM or the previous proposed version of ICD-10-CM?
  18. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    The latter.

    ICD-10-CM has been developed from ICD-10; the proposals that the Coalition has made, that NCHS has suggested and which IMEA has proposed are based on the most recent draft version of ICD-10-CM as it was published on the CDC site at the end of 2010, that is, the version for 2011.

    That draft is available in a zipped file from this page: http://www.cdc.gov/nchs/icd/icd10cm.htm

    This 2011 release of ICD-10-CM replaces the December 2010 release, which replaced the 2009 release.


    These are how the draft proposals stood prior to the recent NCHS suggestion, set out in my previous post:

    Chapter 6: Diseases of the nervous system

    The text which starts the G code chapter is:

    Chapter 6
    Diseases of the nervous system (G00-G99)


    Excludes2:
    certain conditions originating in the perinatal period (P04-P96)
    certain infectious and parasitic diseases (A00-B99)
    complications of pregnancy, childbirth and the puerperium (O00-O99)
    congenital malformations, deformations, and chromosomal abnormalities (Q00-Q99)
    endocrine, nutritional and metabolic diseases (E00-E88)
    injury, poisoning and certain other consequences of external causes (S00-T88)
    neoplasms (C00-D49)
    symptoms, signs and abnormal clinical and laboratory findings, not elsewhere classified (R00-R94)

    This chapter contains the following blocks:

    G00-G0 Inflammatory diseases of the central nervous system
    G10-G14 Systemic atrophies primarily affecting the central nervous system
    G20-G26 Extrapyramidal and movement disorders
    G30-G32 Other degenerative diseases of the nervous system
    G35-G37 Demyelinating diseases of the central nervous system
    G40-G47 Episodic and paroxysmal disorders
    G50-G59 Nerve, nerve root and plexus disorders
    G60-G65 Polyneuropathies and other disorders of the peripheral nervous system
    G70-G73 Diseases of myoneural junction and muscle
    G80-G83 Cerebral palsy and other paralytic syndromes
    G89-G99 Other disorders of the nervous system

    This is a screenshot from the G93 section


    [​IMG]



    This is where CFS (as Chronic fatigue syndrome NOS) is currently proposed for the ICD-10-CM draft version for 2011

    Chapter 18: Symptoms, signs and abnormal clinical and laboratory findings, not elsewhere classified (R00-R99)

    [​IMG]



    The text which starts the "R code" categories is:

    Chapter 18
    Symptoms, signs and abnormal clinical and laboratory findings, not elsewhere classified (R00-R99)


    Note:
    This chapter includes symptoms, signs, abnormal results of clinical or other investigative procedures, and ill-defined conditions regarding which no diagnosis classifiable elsewhere is recorded.

    Signs and symptoms that point rather definitely to a given diagnosis have been assigned to a category in other chapters of the classification. In general, categories in this chapter include the less well-defined conditions and symptoms that, without the necessary study of the case to establish a final diagnosis, point perhaps equally to two or more diseases or to two or more systems of the body. Practically all categories in the chapter could be designated 'not otherwise specified', 'unknown etiology' or 'transient'. The Alphabetical Index should be consulted to determine which symptoms and signs are to be allocated here and which to other chapters. The residual subcategories, numbered .8, are generally provided for other relevant symptoms that cannot be allocated elsewhere in the classification.

    The conditions and signs or symptoms included in categories R00-R94 consist of: (a) cases for which no more specific diagnosis can be made even after all the facts bearing on the case have been investigated: (b) signs or symptoms existing at the time of initial encounter that proved to be transient and whose causes could not be determined; (c) provisional diagnosis in a patient who failed to return for further investigation or care;(d) cases referred elsewhere for investigation or treatment before the diagnosis was made; (e) cases in which a more precise diagnosis was not available for any other reason; (f) certain symptoms, for which supplementary information is provided, that represent important problems in medical care in their own right.

    Excludes2:
    abnormal findings on antenatal screening of mother (O28.-)
    certain conditions originating in the perinatal period (P04-P96)
    signs and symptoms classified in the body system chapters
    signs and symptoms of breast (N63, N64.5)

    This chapter contains the following blocks:

    R00-R09 Symptoms and signs involving the circulatory and respiratory systems
    R10-R19 Symptoms and signs involving the digestive system and abdomen
    R20-R23 Symptoms and signs involving the skin and subcutaneous tissue
    R25-R29 Symptoms and signs involving the nervous and musculoskeletal systems
    R30-R39 Symptoms and signs involving the genitourinary system
    R40-R46 Symptoms and signs involving cognition, perception, emotional state and behavior
    R47-R49 Symptoms and signs involving speech and voice
    R50-R69 General symptoms and signs
    R70-R79 Abnormal findings on examination of blood, without diagnosis
    R80-R82 Abnormal findings on examination of urine, without diagnosis
    R83-R89 Abnormal findings on examination of other body fluids, substances and tissues, without diagnosis
    R90-R94 Abnormal findings on diagnostic imaging and in function studies, without diagnosis
    R97 Abnormal tumor markers
    R99 Ill-defined and unknown cause of mortality

    -------

    As you see, the R code chapter includes many different types of condition, which is why I queried with Cort the statement in his article about the Coalition's initiative that CFS was destined for a chapter mostly for mood disorders and psychosomatic disorders. This is not the case, and R53 sits in the section for General symptoms and signs. The R codes are specifically excluded from Chapter 5 Mental and behavioural disorders. The text at the start of Chapter 5 Mental and behavioural disorders (which includes the Somatoform Disorders and Neurasthenia, though note that in ICD-10-CM, Neurasthenia is coded at F48.8, not under F48, as it is in international ICD-10) states:

    Chapter 5
    Mental and behavioral disorders (F01-F99)


    Includes: disorders of psychological development
    Excludes2: symptoms, signs and abnormal clinical laboratory findings, not elsewhere classified (R00-R99)


    That is not to say that I don't have considerable concerns about coding CFS under the vague "Symptoms and signs" chapter, as "Chronic fatigue syndrome NOS", which I do.

    The file is a PDF of 7MB and needs to be extracted from a zipped file that also includes the ICD-10-CM version for 2011 Index. I can send the PDF of the Tabular List, on request, to anyone who is OK with a 7MB PDF file.
  19. Bob

    Bob

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    Thank you Suzy.

    So I think the following, is how each proposal would look in it's final form...
    (I may have made a mistake - I need to double-check it)

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

    Existing latest ICD-10-CM draft:

    G93 Other disorders of brain

    G93.3 Postviral fatigue syndrome
    Benign myalgic encephalomyelitis

    Excludes1: chronic fatigue syndrome NOS (R53.82)​




    R53 Malaise and fatigue

    R53.8 Other malaise and fatigue

    R53.82 Chronic fatigue, unspecified
    Chronic fatigue syndrome NOS

    Excludes1: postviral fatigue syndrome (G93.3)​


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

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


    Option 1 (proposed by Coalition 4 ME/CFS):

    G93 Other disorders of brain

    G93.3 Postviral fatigue syndrome
    Benign myalgic encephalomyelitis
    Chronic fatigue syndrome​




    R53 Malaise and fatigue

    R53.8 Other Malaise and fatigue

    R53.82 Chronic fatigue, unspecified


    Excludes1: postviral fatigue syndrome (G93.3)
    Excludes1: chronic fatigue syndrome (G93.3)​


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


    Option 2 (proposed by NCHS):

    G93 Other disorders of brain

    G93.3 Postviral and other chronic fatigue syndromes

    G93.31 Postviral fatigue syndrome
    Benign myalgic encephalomyelitis​


    G93.32 Chronic fatigue syndrome
    Chronic fatigue syndrome NOS

    Excludes2: chronic fatigue, unspecified (R53.82)​




    R53 Malaise and fatigue

    R53.8 Other malaise and fatigue

    R53.82 Chronic fatigue, unspecified


    Excludes1: postviral fatigue syndrome (G93.31)
    Excludes2: chronic fatigue syndrome (G93.32)​


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


    ICD-10-CM TABULAR PROPOSED CHANGES - from the International ME Association:

    G93 Other disorders of brain

    G93.3 Viral and infectious and post-infectious diseases of the nervous system with post-exertion symptoms.

    G93.31 Myalgic encephalomyelitis

    G93.32 Postviral fatigue syndrome

    G93.33 Chronic fatigue syndrome
    Chronic fatigue syndrome NOS

    Excludes2: chronic fatigue, unspecified (R53.82)​




    R53 Malaise and fatigue

    R53.8 Other malaise and fatigue

    R53.82 Chronic fatigue, unspecified


    Excludes1: postviral fatigue syndrome (G93.3)
    Excludes2: chronic fatigue syndrome (G93.32)​


    --------------------------------------------------------
    madietodd likes this.
  20. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    From a quick check, that seems to be OK, but I would look again at the R code part of the IMEA's proposal. You have summed up as:


    R53 Malaise and fatigue

    R53.8 Other malaise and fatigue

    R53.82 Chronic fatigue, unspecified


    Excludes1: postviral fatigue syndrome (G93.3)
    Excludes2: chronic fatigue syndrome (G93.32)​



    but in their proposal they have:


    R53 Malaise and fatigue

    R53.8 Other malaise and fatigue

    R53.82 Chronic fatigue, unspecified

    Excludes2: chronic fatigue syndrome (G93.32)

    ------

    I don't think they list

    postviral fatigue syndrome as an "Exclude"


    This may be because, since no instruction is given to delete, it is implicit that the Excludes1: postviral fatigue syndrome (G93.3) remains in place, in accordance with the version of ICD-10-CM for 2011. But if it is implicit that it remains in place, would it not be required to revise the existing draft ICD-10-CM Exclude code from (G93.3) to reflect the code they are proposing should be assigned to CFS?

    And in their proposal, they have

    Excludes2: chronic fatigue syndrome (G93.32)

    but they have chronic fatigue syndrome at G93.33 in their proposal - so I think the IMEA have an inconsistency, there, within the framework of their own proposal. So one of the IMEA Administrators needs to look at that and if it is an inconsistancy, I suggest they revise their proposal before they try to take it forward.

    They had proposed

    ME G93.31
    PVFS G93.32
    CFS G93.33


    so why has the Exclude been given as chronic fatigue syndrome (G93.32)?

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