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Opposition to the Coalition 4 ME/CFS Proposal

Discussion in 'Action Alerts and Advocacy' started by rlc, Sep 16, 2011.

  1. Jill McLaughlin

    Jill McLaughlin *****

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    Bob, Yes some have said this, but ME was not in the NCHS report on the coalitions proposal (option 1).
    You said that this was put together from Suzy's information so I will take this to be correct (or ask
    that the coalition correct this if not).

    So this is the coalitions proposal and this is their intention:.

    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)



    Yet this is what was listed in the NCHS meeting report:
    http://www.cdc.gov/nchs/data/icd9/TopicpacketforSept2011fpdf.pdf

    ICD-9-CM Coordination and Maintenance Committee Meeting
    September 14, 2011

    ICD-10-CM TABULAR PROPOSED CHANGES

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

    G93 Other disorders of brain

    G93.3 Postviral fatigue syndrome
    Add Chronic fatigue syndrome

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

    R53 Malaise and fatigue

    R53.8 Other malaise and fatigue

    R53.82 Chronic fatigue, unspecified
    Delete Chronic fatigue syndrome NOS

    Add Excludes 1: chronic fatigue syndrome (G93.3)

    ----

    In the report by NCHS on the coalition's proposal, ME was omitted. ME is not included.
    It seems it would reflect the coalitions proposal (as above). So are you certain that
    it will be in the actual final version? If this was the coalition's intent, does this concern you
    that it is not listed?

    Were any scientists, drs, medical professionals etc. on the steering committee
    or involved in developing this proposal?

    What drs or scientists support it? The IACFS has or are working on one so would assume they
    do not support this.

    I would like to hear from someone from Pandora/coalition and not secondhand.

    Thanks,

    Jill

    -

  2. Bob

    Bob

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    Hi Jill, I can't be certain of anything here, because I'm not involved enough in the process.
    So you are right to ask others for confirmation.
    I've only listed the information that I was presented with.
    But what you have listed, in your last post, is the proposed changes to the current draft.
    'ME' is not mentioned simply because they do not want 'ME' deleted, 'inserted' or moved.
    Or at least, that is my understanding of the situation, and it makes perfect logical sense.
    I have used the same process to create each of the new drafts in my earlier post.
    And the drafts all look like they are as they were intended to be, with just a few minor inconsistencies.
    ixchelkali likes this.
  3. Jill McLaughlin

    Jill McLaughlin *****

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    Hi Bob, I appreciate your response but we need confirmation on this. Because these proposals
    line up exactly. The coalitions proposal here is obviously where the changes were made. The
    NCHS write up lines up with the change specified as add or delete but would be otherwise
    identical, except for the omission of ME.

    I should think they would realize this, unless it was their intention to leave it out. So are they
    concerned or are they certain that this is protocol and ME will be included and will appear
    in the ICD as before.

    This is why I wonder if any drs/professionals were involved in this or even support it who would
    better understand it. There are sketchy responses and some do not seem aware or to understand
    things when asked so we need to get clarification.

  4. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    The paragraph below is an extract from the NCHS ICD-9-CM Coordination meeting agenda document:

    "The Coalition 4 ME/CFS has submitted a proposal asking that chronic fatigue syndrome be deleted as an inclusion term under code R53.82 and that the term be added as an inclusion term under code G93.3."


    In the other thread on this issue, at Post #16:

    http://forums.phoenixrising.me/show...ernmental-Body&p=206904&viewfull=1#post206904

    I had set out:


    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 the existing term "Benign myalgic encephalomyelitis" remains under the G93.3 Title term, Postviral fatigue syndrome, since no instruction to delete "Benign myalgic encephalomyelitis" is given.)


    In this post

    http://forums.phoenixrising.me/show...E-CFS-Proposal&p=205393&viewfull=1#post205393

    Tina had clarified to Rlc:

    "Ric is absolutely incorrect.

    ME would remain the same if the Coalition 4 ME/CFS proposal is adopted."



    Then Mary Dimmock followed this up in a post at Post #7 in which she says (the blue bolding is SC's not MD's):

    "UsedToBePerkyTina is absolutely correct.

    "The proposal that was submitted by the Coalition 4 ME/CFS is to reclassify CFS from "Signs and Symptoms/CHronic Fatigue, Unspecified" to 'Diseases of the Nervous System" at G93.3 in the ICD-10-CM (the U.S. specific clinical modification of the ICD-10). G93.3 is the code already in use for ME and PVFS.

    "The proposal is not asking for the deletion of ME or reclassification of ME away from G93.3. The proposal is not asking to modify the ICD-10 itself. The only thing the proposal is asking for is to move CFS to G93.3 where ME is. This will make the U.S. clinical modification consistent with how it is in every other country - CFS listed as a neurological disease at G93.3. Background and specifics on the proposal are below..."



    Mary Dimmock also set out some clarifications in this post on the other thread:

    http://forums.phoenixrising.me/show...ernmental-Body&p=207252&viewfull=1#post207252


    On 26 September, I emailed Mary and asked if she could clarify the following for me:


    I note that the Summary document of the Coordination meeting on September 14, that is posted on the CDC site at:

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

    states:

    "Though the requestor had asked to have the term benign myalgic encephalomyelitis deleted NCHS indicated it should remain somewhere at G93.3 to maintain compatibility with WHO ICD-10. Comments on this indicated that it should be added to proposed new code G93.31 with benign as a nonessential modifier."


    Is the "requestor" being referred to here, the Coalition or another "requestor" and if so, who was this? If it does refer to the Coalition, is this an error in the writing up of the notes of the meeting?

    My understanding has been that in their initial proposal, the Coalition had set out the existing draft proposal for the G codes for Chapter 6 as they stand in the ICD-10-CM version for 2011, then set out beneath their proposed Deletions and Additions to the existing code structure and that (Benign) ME was not necessary to include because no change or revision was being requested to that specific ICD category subclass or sub-entity to G93.3 Postviral fatigue syndrome.

    However, the note of the meeting above, states that the "requestor had asked to have the term benign myalgic encephalomyelitis deleted".



    When I have received a clarification from Mary for why the summary report of the meeting has been worded thus, I will update the thread.


    At Post #50 in this thread, I have said:

    "I do not consider that this joint initiative, led by Marly Silverman and Mary Dimmock, should have been taken forward without prior announcement; in my view, an announcement should have been made prior to the letter to Donna Pickett, dated July 14, that the Coalition had agreed to take this issue forward.

    So although I support in principle the taking forward of the ICD-10-CM issue at the Coordination and Maintenance Committee meeting and the initiative to lobby for CFS not to be retained under "Symptoms, signs and ill-defined conditions" and coded in Chapter 18 at R53.82, I do not support the way in which the C4ME/CFS has set about their initiative.

    I have a big thing about transparency and I would like to know why it was agreed with the other Coalition member groups that this initiative would be taken forward without openness?"



    I have also raised the following in the other thread:

    ...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?



    Because I am interested to know why the IMEA 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?


    So far, I've seen no rationale set out by the IMEA. Neither have I seen any rationale from the IMEA for the IMEA's proposing that the "Excludes2" class of Exclude should be applied rather than the "Exclude1" class of Exclude. I understand that the IMEA's communication containing its own proposal has already been submitted.


    As I've stated in my recent position statement, my position, as an individual, is this:

    That I consider


    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.​



    At no point have I expressed any desire to see Benign myalgic encephalomyelitis deleted from under the G93 parent code.

    At no point have I expressed any desire to see Chronic fatigue syndrome reclassified as ME.

    I would however like to see Chronic fatigue syndrome reclassified from R53.82 to Chapter 6 under the G93 parent code and I would be equally concerned if ICD-11 were proposing to classify Chronic fatigue syndrome (which is currently indexed to G93.3 in ICD-10) under the R codes for ICD-11. [Which is not what they are proposing to do.]


    If I was asked what I would prefer to see for ICD-10-CM, it would be this.


    If separate codes can be accommodated for all three terms, I'd prefer to see the following structure for G93, rather than the proposals of the C4, NCHS or IMEA. Note that I would not propose the use of "Excludes2" or the inclusion of a "Chronic fatigue syndrome NOS", as the IMEA submission calls for.

    So this is what I would prefer to see:


    Chapter 6 Diseases of the nervous system

    [...]

    G93 Other disorders of brain

    G93.3 Postinfectious Fatigue Syndromes (something other than this parent term that would encompass viral and non viral insult and ideally no "Fatigue" word, but ICD-10-CM may be restricted to what extent an existing ICD Title term (in this case G93.3 Postviral fatigue syndrome) can be modified, as they are obliged to work within the framework of complex WHO classificatory guidelines.)

    G93.31 Postviral fatigue syndrome
    Excludes1: chronic fatigue, unspecified (R53.82)
    neurasthenia (F48.8)

    G93.32 Benign Myalgic encephalomyelitis
    Excludes1: chronic fatigue, unspecified (R53.82)
    neurasthenia (F48.8)

    G93.33 Chronic fatigue syndrome
    Excludes1: chronic fatigue, unspecified (R53.82)
    neurasthenia (F48.8)



    Neurasthenia (F48.8) in Chapter 5, would also need to have all three codes above listed as Excludes.


    ETA: Someone has made out a good case to me for transposing G93.32 with G93.33, so I've adjusted the order of CFS and MBE, above. The reason I've left the positioning of Postviral fatigue syndrome at G93.31 is because of the legacy hierarchy within ICD-10 for Postviral fatigue syndrome, and for congruency with the order of the three terms within the ICD-10-CA and the ICD-10-GM (Germany).

    In international ICD-10, Neurasthenia (with Fatigue syndrome underneath it) is coded in Chapter 5 at F48.0 with an Exclusion for postviral fatigue syndrome (G93.3). But ICD-10-CM has a slightly different structure for the F48 codes and has Neurasthenia coded at F48.8, with no Exclude for G93.3 Postviral fatigue syndrome (the Title term under which (B)ME sits). I note the submission of the IMEA does not have an Exclude or Exclude1 under F48.8 for any of the proposed G93.xx terms.

    In both ICD-10 and ICD-10-CM, the entire R code chapter is excluded from the Chapter 5 F codes.

    ---------

    I hope the above will pull together clarifications which have already been posted in this thread.

    Information about what the "code freeze" means has been put out on Co-Cure, several times, and is also included on Page 8 of the NCHS meeting document: ICD-9-CM Coordination and Maintenance Committee Meeting September 14, 2011, Diagnosis Agenda, which is available here: http://www.cdc.gov/nchs/data/icd9/TopicpacketforSept2011fpdf.pdf

    Suzy
  5. Guido den Broeder

    Guido den Broeder *****

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    If CFS is to be classified under G93.3, it will likely not be mentioned as an exclusion. Rather, PVFS will, which suffices to exclude both ME and CFS.
  6. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    Yes, Guido, I was just about to add that.

    It may be sufficient to use the G93.3 Postviral fatigue syndrome Title term (or whatever term this might be replaced with), in order to exclude from F48.8 inclusion terms that sit beneath G93.3 or terms that are assigned separate codes beneath G93.3.

    In ICD-10, as you know, postviral fatigue syndrome (G93.3) is a specified exclusion under F48.0 Neurasthenia but Benign myalgic encephalomyelitis does not require specification as an exclusion to F48.0 because BME is a listed as a subclass or sub-entity to the ICD Title term. But where separate child codes have been assigned to terms sitting beneath a parent term, I don't know what the ICD convention would be.

    Suzy
  7. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    Has anyone asked IMEA why they proposed a "CFS NOS" under G93.3 and why they proposed "Exclude2" class excludes and has a response been forthcoming?
  8. Jill McLaughlin

    Jill McLaughlin *****

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    Not that I know of. But sure, go ahead and ask. I think they would answer. Not that it is all
    that important. They didn't go and present it to NCHS unbeknownst to the general patient community.
    But still waiting for answers from Pandora/Coalition and those who did this. And not from the UK
    people who seem to be their mouthpiece.

  9. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    Six months ago, I contacted the "CEO" of IMEA, Ms Louise Gunn (who appears to have pulled out of IMEA, along with several of the other founder members) with some queries.

    Six months later, I am still waiting for a response.

    If I were to raise my questions with the current IMEA "Administrators", I do not share your confidence that I would receive an answer. And if Oerganix and Robyn are still on this forum, then either they are not following the thread or have yet to catch up with the posts or they are not intending to respond on behalf of the IMEA.


    You've said you "are still waiting for answers from Pandora/Coalition"...


    **********

    Moderator: personal attack and inflammatory content removed
  10. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    OK. If anyone has any comment to make to me on any of the material I have posted in this thread, would you mind contacting me PM

    **********

    Moderator: personal attack removed
  11. Jill McLaughlin

    Jill McLaughlin *****

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    But whatever IMEA may think, they didn't take it to NHS and try to change the
    codes behind our backs.

    I do not want second hand answers. And this is not a UK
    issue it is strictly a US issue. Reposting reams of stuff from the WHO or NCHS
    material does not answer the questions. I've seen the documents on the code
    freeze and all, but what does it mean in terms of this situation? If they do not
    know and cannot answer then this is all the more reason for concern.


  12. Jill McLaughlin

    Jill McLaughlin *****

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    Sickofcfs, Yes, directly, privately and publicly.

  13. Dainty

    Dainty Senior Member

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    Moderator: Temporary lock to sort through a few things. Apologies for the inconvenience.

    Edit: Thread cleaned up and re-opened.
  14. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Coalition's FAQ Updated

    New questions added, some updated.

    http://coalition4mecfs.org/ICDFAQ.html


    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.

    Moderator: thread was not locked at the time - please double check before posting.

    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.

    Tina
  15. Jill McLaughlin

    Jill McLaughlin *****

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    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.

  16. Dainty

    Dainty Senior Member

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    Moderator: Multiple posts continue to be removed and edited due to personal comments.

    In order that we may have a constructive discussion, sticking to the issues is a requirement - not a request.


    A reminder from our forum rules:
  17. ixchelkali

    ixchelkali Senior Member

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    Unfortunately, MD's who are knowledgeable about ME/CFS are scarce. A lot of patients in the US have limited options about which MD they see, also, because they may have to see someone within their HMO or PPO. For many patients it takes a long time to get ANY diagnosis, and when they do, odds are it will be CFS. The doctors, also, may be limited in what diagnostic code they use, by the insurer. Most patients don't know that much about ME or CFS at the time of diagnosis; by the time they've educated themselves, it's too late to change the diagnostic code.

    I disagree that if your MD gives you a diagnosis of CFS, s/he is not your friend. There's an abyssmal amount of ignorance about our disease --whichever you call it-- in the medical community. If they have a patient with our puzzling symptom array, a well-intentioned MD could very well try to figure out what's wrong, and after eliminating the usual suspects (MS, lupus, RA, etc.), they may stumble upon CFS. For the great majority of patients, that's the best they can hope for. In the US at this time, almost no one is going to get an ME diagnosis. I would bet that of those patients in this country who have actually managed to get any diagnosis, better than 98% are diagnosed with CFS.

    You may be right that a knowledgeable MD knows that a CFS is "the kiss of death" for their patient, but I would bet money that Drs Cheney, Bell, Klimas, Bateman, Peterson, Komaroff, etc. have all used it. And the average doctor that the average patient sees hasn't a clue.
  18. Jill McLaughlin

    Jill McLaughlin *****

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    You were not answering questions. You did this behind our backs and people were blindsided
    so of course there were questions. You obviously had been planning this for several months.
    Yet most people do not understand the ICD or the process or specifics related to this change,
    which you felt that you had the right to take upon yourselves to do without any public
    discussion or input or concern for the vast majority of the patient community.

    People were discussing this and you and other coalition members seemed more interested
    in giving us a sales pitch for the proposal than answer any questions. If you were doing an
    FAQ, you could have said so but you didn't.

  19. Hope123

    Hope123 Senior Member

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    I haven't followed the twists and turns of this thread but have two comments:

    A. This will be unpopular but not every policy or other decisions made about CFS need to be put up to a vote or have the support of patients and their caregivers (although some decisions definitely should be). It should be noted that the Coalition is communicating with the public though about what they intend to do and that is realistic. Sometimes, not just for CFS, putting things up for a vote by the public rather than by experts actually hinders rather than helps a process.

    B. The recommendations put forth by the Coalition emanated from CFSAC discussions and these suggestions were made and supported by CFSAC members, including Dr. Nancy Klimas and Dr. Leonard Jason, so it is not without expert input.

    [Note -- I am not involved with the ICD-9 process or with putting together the proposal -- just a watcher on the sidelines.]
  20. Jill McLaughlin

    Jill McLaughlin *****

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    Ixchelkali, I believe that the coalition had many false premises upon which they acted. Drs can
    change a dx whenever they want. Happens all the time. The point is to educate on ME. This
    convoluted make it CFS and then CFS will disappear and it will become ME? I don't think so.
    Drs can dx ME - NOW. There is no such thing as ME/CFS, it is just ANOTHER term which can
    be used to mean different things. HHS got blasted for this.

    You are right, most drs don't have a clue but the solution would be to educate them,
    not keep it in the CFS black hole. they aren't stupid but they don't overthink.
    Basically CFS=fatigue syndrome. Tack on Me and it will make no difference.

    No one with ME should be given a CFS dx. I think it has been PROVEN. Making the codes
    the same will keep blurring the distinction. ME will be another name for CFS.
    Is this the plan?


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