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Part of the Presentation summarizing the Coalition4MECFS.org proposal to reclassify chronic fatigue syndrome (CFS) in the ICD-10-CM (U.S.) on Sept 23, 2011 at the IACFS-ME Association Biennial …

Part of the Presentation summarizing the Coalition4MECFS.org proposal to reclassify chronic fatigue syndrome (CFS) in the ICD-10-CM (U.S.) on Sept 23, 2011 at the IACFS-ME Association Biennial Conference held in Ottawa, Canada.

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  • The bottom line:The ICD-10 published by WHO places CFS under neurological diseases. I looked at the German version with a translator and it appears to do the same. So does the Canadian. See belowThe U.S. is the ONLY country that does it differently in their clinical modification of ICD-10. I am not a WHO expert but I doubt the WHO will allow it to be left under Signs and Symptoms. England has used the position of CFS under G93.3 in ICD-10 to keep it from being pointed to Neurasthenia. (see below)Changing it to not be neurological is not something that can be done in the ICD-10-CM alone. This has to go back to the WHORegarding option 2 - people think they are splitting CFS from ME. But they are really splitting out ME-ICC cases that are triggered by bacteria or other pathogens and calling them CFS. Its important they understand the distinction. COuld you please stress
  • ICD10C-Current: G00-G99 Diseases of the Nervous System G89-G99 Other disorders of the Nervous System G93 Other Disorders of brain G93.3 Postviral fatigue syndrome G93.3 Benign myalgic encephalomyelitis Excludes1: chronic fatigue syndrome NOS (R53.82) R00-R99 Symptoms, signs and abnormal clinical and laboratory findings, not elsewhere classified R50-R69 General Symptoms and Signs R53 Malaise and Fatigue R53.8 Other Malaise and Fatigue R53.82 Chronic fatigue, unspecified R53.82 Chronic fatigue syndrome NOS Excludes1: postviral fatigue syndrome (G93.3)Change: Add G93.3 Chronic fatigue syndrome Delete R53.82 Chronic Fatigue Syndrome NOS Add at R53.82 - Excludes1: Chronic Fatigue Syndrome (G93.3) Delete from G93.3 - Excludes1: Chronic Fatigue Syndrome NOS (R53.82) Note: It is assumed that “Chronic Fatigue, unspecified” is needed as a symptom code but if the only purpose of this category is to provide a place for CFS, the committee may want to remove.    Current: G00-G99 Diseases of the Nervous System G89-G99 Other disorders of the Nervous System G93 Other Disorders of brain G93.3 Postviral fatigue syndrome G93.3 Benign myalgic encephalomyelitis Excludes1: chronic fatigue syndrome NOS (R53.82) R00-R99 Symptoms, signs and abnormal clinical and laboratory findings, not elsewhere classified R50-R69 General Symptoms and Signs R53 Malaise and Fatigue R53.8 Other Malaise and Fatigue R53.82 Chronic fatigue, unspecified R53.82 Chronic fatigue syndrome NOS Excludes1: postviral fatigue syndrome (G93.3)Change: Add G93.3 Chronic fatigue syndrome Delete R53.82 Chronic Fatigue Syndrome NOS Add at R53.82 - Excludes1: Chronic Fatigue Syndrome (G93.3) Delete from G93.3 - Excludes1: Chronic Fatigue Syndrome NOS (R53.82) Note: It is assumed that “Chronic Fatigue, unspecified” is needed as a symptom code but if the only purpose of this category is to provide a place for CFS, the committee may want to remove.   ICD-9-CM - Current: 320-389 Diseases of the Nervous system and Sense organs 320-326 Inflammatory Diseases of the Central Nervous System 323 Encephalitis, Myelitis, and Encephalomyelitis 323.9 Unspecified causes of Encephalitis, Myelitis, and Encephalomyelitis 323.9 Encephalomyelitis (chronic) (granulomatous) (myalgic, benign) (see also Encephalitis) 780-789 Symptoms, Signs and Ill Defined Conditions 780-789 Symptoms 780 General Symptoms 780.7 Malaise and fatigue 780.71 Chronic Fatigue Syndrome 780.79 Other Malaise and Fatigue 780.79 Postviral (asthenic) syndrome 780.79 Postviral Neurasthenia  Change Add 323.9 Chronic Fatigue Syndrome Add 323.9 Postviral Fatigue Syndrome Delete 780.71 Chronic Fatigue Syndrome Delete 780.79 Postviral (asthenic) Syndrome 
  • Researchers need to answer this dilemma – Patients deserve answers. The label “chronic fatigue syndrome” (CFS) has persisted for many years because of lack of knowledge of the etiological agents and of the disease process. In view of more recent research and clinical experience that strongly point to widespread inflammation and multisystemic neuropathology, it is more appropriate and correct to use the term “myalgic encephalomyelitis”(ME) because it indicates an underlying pathophysiology. It is also consistent with the neurological classification of ME in the World Health Organization’s International Classification of Diseases (ICD G93.3). Consequently, an International Consensus Panel consisting of clinicians, researchers, teaching faculty and an independent patient advocate was formed with the purpose of developing criteria based on current knowledge. Thirteen countries and a wide range of specialties were represented. Collectively, members have approximately 400 years of both clinical and teaching experience, authored hundreds of peer reviewed publications, diagnosed or treated approximately 50,000 ME patients, and several members coauthored previous criteria. The expertise and experience of the panel members as well as PubMed and other medical sources were utilized in a progression of suggestions/drafts/reviews/revisions. The authors, free of any sponsoring organization, achieved 100% consensus through a Delphi type process.
  • Now to the proposal before you todayThe current draft of ICD-10-CM positions “CFS” in “Signs and Symptoms” under “Chronic Fatigue, unspecified” while ME and Postviral Fatigue Syndrome are at G93.3. The intent described to the CFSAC was to use the term PVFS for those cases that that are virally triggered and “CFS” for cases where the trigger is unknown or not viral. (Note from comments at the meeting – The attendees at the meeting were asked if anyone used the term ME today and everyone shook their hears no, they did not)This proposal is to reclassify “CFS” from “Chronic Fatigue, unspecified” to Nervous System Diseases at G93.3 where ME is prior to the implementation of ICD-10-CM in 2013. The second part of this proposal is to use the same code for both ME and CFS. As described on the previous slide, the ME/CFS case definition includes viral, bacterial and other pathogens and does not use a different name for those with viral triggers versus bacterial or other pathogenic triggersFinally, we are asking for expedited review to avoid the confusion that will result if the ICD-10-CM rolls out as currently drafted. The rest of this presentation will provide the rationale for this change and why we are asking for an expedited review and implementation.
  • Discretion – I may not use it.

Transcript

  • 1. Proposal to ReclassifyChronic Fatigue Syndrome (CFS) in ICD10-CM (U.S.) by the Submitted to the NCHS on July 15, 2011 Presented to the CMC on Sep 14, 2011 Summary of Options for Discussionwww.coalition4MECFS.orgSept 23, 2011 - IACFS-ME Conference 2011
  • 2. What is the ICD10-CM
    The ICD10-CM is the U.S. 10th Edition of the ICD10 (WHO)
    The CM stands for clinical modifications
    The ICD10-CM (U.S.) CFS classification differs from most others countries
  • 3. Coalition4MECFS ICD9-CM
    Please note that the Coalition4MECFS proposal request for expedited review to reclassify CFS in the
    ICD9-CM was not accepted for Review
    Therefore this presentation will be only discussing the proposal to reclassify CFS in the ICD10-CM
  • 4. CFS & ME Chapters
    CFS and ME are in the same chapter in the ICD10 published by the WHO
    In the U.S. CFS is in a different (R53) chapter (R53.82) in the ICD10-CM – “Symptoms, signs and abnormal clinical and laboratory findings, not elsewhere classified”
  • 5. CFS vs. ME
    We cannot continue have 1 disease with
    2 names
    Multiple criteria
    Researchers need to answer this dilemma
    Will the most recent “International” New Criteria answer the dilemma?
    ME-ICC
  • 6. Summary of Proposal to Reclassify CFS
    Before ICD10-CM is implemented in 2013:
    • Move CFS from “Signs and Symptoms/Chronic Fatigue Unspecified” to G93.3 under “Diseases of the Nervous System”
    • 7. Do not split ME/CFS cases into ME for viral triggers and CFS for bacterial or other pathogens. Use the same code for ME and CFS
    Rationale
    • CFS is NOT the same as “chronic fatigue, unspecified”
    • 8. When properly defined, CFS is the same as ME
    • 9. Supported by today’s science, recent case definitions, recommendations of the government’s experts, classification in WHO, & the clinical modifications of other countries
    • 10. The case definition for ME/CFS does not discriminate between viral, bacterial and other triggers. It does not use one name for cases with a viral trigger and another for cases with a bacterial trigger
    Why Now
    • Catch up to 20 years of science
    • 11. Avoid additional confusion that has harmed patients in the past
  • ICD10 (WHO)
     
    ICD-10  (currently used in UK, Australia, Europe, Canada and most other countries)
     
    ICD-10 is published in three volumes:       
    Volume 1 is the Tabular list, i.e. the main listing of diseases, disease categories and codes
    Volume 2 is the Instruction manual 
    Volume 3 is the Alphabetical index     
  • 12. Note: You will also see that the Tabular List and the Instruction Manual of ICD10 (WHO) are published online on the WHO website, BUT the Alphabetical index is not, and it is only available in book and CD-ROM form.  
    The Tabular Listings are below. Please note again that CFS is not included in the Tabular Listing. CFS is in the Alphabetical Index of diseases.. G00-G99 Diseases of the nervous system  (Chapter VI)G90-G99 Other disorders of the nervous system
    G93 Other disorders of brain
    G93.3 Postviral fatigue syndrome 
    Benign myalgic encephalomyelitis
    ‘CFS’ is listed in the Alphabetical index, as follows: 
    Syndrome
    fatigue F48.0
    • chronic G93.3-
    • 13. - postviral G93.3
  • Summary of Feedback Needed
    Support for reclassification of CFS from “Signs and Symptoms/Chronic Fatigue, unspecified” to “Diseases of the Nervous System” (at G93.3 with ME and PVFS)
    Recommend how to best position CFS under G93.3 based on clinical, scientific and other reasons
    Recommend an option – 4 provided. You may think of others
    If subcodes for G93.3, select title.
    Decide on inclusions and NOS
    Feedback on the proposal can be provided by email to The Coordination and Maintenance Committee by November 18, 2011 at  nchsicd9CM@cdc.gov 
  • 14. Options Overview
    Additional information
    • NCHS has proposed Option 2 because they do not want to lose data by lumping PVFS and CFS under one code where they are currently different
    • 15. According to attendees at the meeting and patient feedback, ME is rarely used in the U.S.
    • 16. ME-ICC and CCC case definition doesn't discriminate based on viral versus bacterial – they include both
    • 17. Patients with viral triggers have been given CFS diagnosis
    • 18. Note – Benign can not be dropped from ME but can be put at the end in parenthesis – WHO term)
  • Draft for review
    Option Details
  • 19. Option Details (cont)
    Draft for review
  • 20. Other Issues: Exclusion on Neurasthenia
    ICD10 includes exclusions listed against Neurasthenia
    F48.0Neurasthenia
    Fatigue syndrome
    Use additional code, if desired, to identify previous physical illness.
    Excludes: asthenia NOS ( R53 )
    burn-out ( Z73.0 )
    malaise and fatigue ( R53 )
    postviral fatigue syndrome ( G93.3 ) (PVFS, ME and CFS listed here)
    psychasthenia ( F48.8 )
    ICD10-CM does not have exclusions listed against Neurasthenia
    F48 Other non-psychotic mental disorders
    F48.1 Depersonalization-derealization syndrome
    F48.8 Other specified nonpsychotic mental disorders
    Dhat syndrome
    Neurasthenia
    Occupational neurosis, including writer's cramp
    Psychasthenia
    Psychasthenic neurosis
    Psychogenic syncope
  • 21. Background: ICD10-CM terminology
    Inclusion terms
    Lists of terms are included under some codes. These terms are some of the conditions for which that code number is to be used. The terms may be synonyms of the code title, or, in the case of “other specified” codes, the terms are a list of some of the various conditions assigned to that code. The inclusion terms are not necessarily exhaustive. Additional terms found only in the Index may also be assigned to a code.(assume this refers to alphabetic index)
    Source: http://www.honorthenames.com/International_Classification_of/ICD%20guidelines%20.pdf
    Why care?– when two terms are against one code, one is on top. E.g. for option 3, G93.32 – is ME on top or CFS. If that option is chosen, I expect ME has to be on top, especially since there is an intent to retire. May need more feedback from NCHS official.
    Exclude 1 versus Exclude2
    Excludes1: A type 1 Excludes note is a pure excludes note. 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 used 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 represented by the code, 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, when appropriate.
    Source - http://www.cdc.gov/nchs/data/icd9/10cmguidelines2011_FINAL.pdf
    Why care?– the current NCHS proposal is using Excludes 2 but a speaker recommended that Excludes1 is more appropriate. We will need to decide which to use and which terms it should be applied to e.g. just CFS or also ME? What about PVFS? The entire category?
  • 22. Background: ICD10-CM terminology (cont)
    NOS terminology
    .e “Unspecified” codes (NOS) Codes in the Tabular List with “Unspecified...” in the title (usually a code with a 4th or 6th character 9 and 5th character 0 ) are for use when the information in the medical record is insufficient to assign a more specific code. The abbreviation NOS, “Not otherwise specified”, in the Tabular List is the equivalent of unspecified.
    Source: http://www.honorthenames.com/International_Classification_of/ICD%20guidelines%20.pdf
    Why care?– the current proposal calls for the code Chronic Fatigue Syndrome NOS. It’s not clear why the term NOS is needed. When properly defined, does CFS warrant an NOS, especially if we are not splitting out viral from non-viral or other.
    Further discussion is needed with NCHS to understand when NOS is needed and why
  • 23. Visit www.coalition4MECFS.org for complete proposal, update letter, and power point presentation dated Sep 14, 2011
    Send your input to NCHS
    Nchsicd9CM@CDC.gov
    Observation: Please note that the e-mail address reads ICD9CM but you will be providing input for ICD10-CM, because ICD9-CM is locked down.
  • 24. Steering Committee
    A word of appreciation to Mary Dimmock, who prepared the proposal and to Mike Munoz and Lori Chapo Kroger.
    Organization Members are:
    CFS/Fibromyalgia Organization of Georgia, Inc.
    CFS Knowledge Center
    CFS Solutions of West Michigan
    Chronic Fatigue Syndrome, Fibromyalgia, Chemical Sensitivity Coalition of Chicago
    PANDORA Inc. - Patient Alliance for NeuroendocrineimmuneDisorders Organization for Research & Advocacy, Inc.
    Phoenix Rising
    Rocky Mountain CFS/ME & FM Association (RMCFA)
    Vermont CFIDS Association Inc.
    Wisconsin ME/CFS Association, Inc.