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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. Ember

    Ember Senior Member

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    I'm aware of this situation, Tina, and I'm not presuming to say what should or will happen in the US. I was just trying to express to you what I hear to be the concerns of those who are alarmed by the Coalition 4 ME/CFS proposal.

    You indicate here that the ICC is "not recommending two different diseases" and on another thread, you said you didn't see the ICC doing any splitting. The ICC does, however, remove ME patients from Reeves, and I think there are different interpretations of the significance of that fact.
  2. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Ok, ric, your post is long, but I will address as I can. First, the link you gave, on page 2, does mention the October date. But, look down at the bottom of the page and it mentions the November date. They both seem to say the same thing, only with different implementation dates. I was confused to begin with also. So, Mary called and Donna Pickett told her it was the November date for possible implementation on October 2012 as opposed to the April implementation. Feel free to contact her personally if you want to verify. I will give the link again: http://www.cdc.gov/nchs/data/icd9/To...pt2011fpdf.pdf As ric said, see page 2. If you want to send in comments that you want ME to stay in the ICD-10-CM, please, go ahead. That is what the coalition wants. It would be funny if you have a lot of people sending comments saying they oppose the proposal and then also say you want the same thing that coalition wants. LOL I bet they will get a laugh out of that.

    PANDORA does not want your comments about this. Please, don't send them to PANDORA. LOL Lord no. LOL Send them to Donna Pickett. Yes, I agree ric, please folks, don't send PANDORA your comments directed at the committee. Before the presentation, we informed Donna that she might get many people giving comments. She said that she would set up a special email address for that. She evidently has not done that yet. If she does set up a separate one, the coalition will let it be known through their Facebook page and email to those signed up to receive emails. Who said comments should be sent to PANDORA?

    Ric, I see you are still not understanding the proposal. The proposal asks for changes. Here are the changes proposed:

    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)

    You will notice this says nothing about deleting ME. It says to add CFS to G93.3. It doesn't say replace the other G93.3 illnesses with CFS. It says add CFS to the G93.3, which would put it with ME and PVFS. The proposal also asks that CFS be taken out of R53.82. (R53.82 is the one of signs, symptoms of ill-defined conditions).

    No changes are being proposed for ME. It would remain as one of the G93.3 illnesses.

    Go to page 16 to see for yourself: http://coalition4mecfs.org/ICD_final_w-cover_and_addendum_7-15-2011.pdf

    sigh.... all this other stuff, ric, I just can't keep posting responses in multiple threads. I just don't have the energy. But your new one, I will address: PANDORA is not offshoot of CAA. PANDORA was started by Marly Silverman in Florida to provide support and resources for patients in Florida. It is grown to be national now. In a way, it actually competes with CAA.

    Coding is handled by the NCHS director after receiving advice from the ICD-9-CM Coordination and Maintenance Committee. This is a department of CDC. This is not the CFS department of the CDC. Anyone in the public can make proposals to the committee. It can be patient advocates, doctors or anyone. Doesn't mean it will get on their agenda. But CFS did get on the agenda.

    What ric says about CFS being in the index under ME is true in the ICD. It is not tabular. And, that is why the US ICD-10-CM is putting the illness in R53.82, the "signs, symptoms and we don't know what it is" (paraphrased) category. In the ICD-10-CM, it will go somewhere. All we are asking is that it be put in G93.3 instead of R53.82. As we and the committee have been told, it will go in there and will have a code. That is not an option (at this time, tee hee).

    Ok, that is enough for now. I hope we don't start another thread on this as I don't want to have to go to multiple threads explaining the truth.

    Tina
  3. usedtobeperkytina

    usedtobeperkytina Senior Member

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    yes, that is a good point, Ember. Interestingly that Dr. Nancy Klimas was co-author of the ME-ICC and she also voted in May at the CFSAC to have CFS moved to neurological.

    It would be good to have the ME-ICC authors comment on exactly how they want their goals of the ME-ICC implemented.

    The first sentence is referring to the terms, though. http://www.meassociation.org.uk/?p=7173 Saying CFS is not good term, but ME is preferred term for "it". I would assume "it" is the disease. And they are referencing much research of CFS people. So they are saying those people, the Fukuda people, should be called ME. It's going to take time for that to happen.

    In the introduction, it says: "Myalgic encephalomyelitis (ME), also referred to in the literature as chronic fatigue syndrome (CFS), is a complex disease involving profound dysregulation of the central nervous system (CNS) [1-3] and immune system [4-8], dysfunction of cellular energy metabolism and ion transport [9-11], and cardiovascular abnormalities [12-14]."

    Notice, the one disease, is referred to by two terms and that disease has profound dysregulation of the CFS. It is not saying that the CFS folks don't have the dysregulation. It says those who are called CFS have the dysregulation, according to the medical literature.

    As I said, would be nice to get one of them to comment.

    Tina
  4. Ember

    Ember Senior Member

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    I'm pouring over the document, trying to make out what "it" you're referring to! It would be significant if they are saying that Fukuda people "should be called ME." But I can't see it. What do you make or their removing ME patients from Reeves?

    Saying that ME is referred to in the literature as CFS isn't actually saying that the two are one disease. This may sound like splitting hairs, but I think the differences of opinion here are causing some grief.
  5. rlc

    rlc Senior Member

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    Hi tina, you obviously have no idea about Law, the Coalition 4 ME/CFS have in this proposal produced a legally binding document, in which they state that the ICD code G.93.3 should be

    Post viral fatigue syndrome
    Add Chronic fatigue syndrome

    The rest of the proposal addresses removing CFS from the other codes

    Your proposal doesnt include ME in it at all and yet you have included that you want PVFS to remain in code G.93.3

    The Coalition 4 ME/CFS proposal does not say as you imply that they are asking for ME to be in code G.93.3

    It asks for CFS and PVFS to be in G.93.3

    This is what it says in black and white and every lawyer on the planet will see this.

    So if this proposal is accepted in the form that it is submitted, dont be surprised to find the ME community suing the Coalition 4 ME/CFS at some point in the future.

    If as you seem to be trying to imply that you wanted ME in code G.93.3 and yet somehow despite the fact that you have obviously been plotting this for ages, somehow forgot to put it into your proposal, I suggest that you immediately withdraw your proposal and correct it and try and submit it again at some time in the future.

    Because there is absolutely nothing in this proposal that asks for ME to be in code G.93.3

    It asks for CFS to and PVFS to be in code G.93.3

    Why are you saying that you want to keep PVFS and yet you dont say you want to keep ME

    The rest of the coalition 4 ME/CFS proposal to put CFS into code G.93.3 is insane and is going to cost a lot of people in the CFS group who have undiagnosed serious diseases, their lives!!!!! because continuing to promote the waste basket diagnosis disease CFS instead of advocating for CFS patient to be extensively tested to find out what is really wrong with, will mean that they wont get the testing they need done in time and they will die. Are you happy that this is what you are going to achieve.

    I do not trust a single word that anyone involved in this Coalition 4 ME/CFS proposal is saying, these orgs are supposed to represent the patients and yet they have behaved in the most deceitful and under hand manner, and have not told the patients that they are supposed to represent till now, what they are doing, until after it has been done, this is disgraceful, what arrogance and utter contempt for the patients, they have a right to know and object to these kind of idiotic proposals before they happen not afterwards!!!!!! I do not trust and never will a single word from people who behave like this; the coalition 4 ME/CFS should be ashamed of themselves.

    RE But your new one

    Dont insult me with your arrogant put down, Ive been doings this for two decades,

    Why dont you read and understand everything here http://forums.phoenixrising.me/show... ME Research Literature and other information and find out what ME really is!!

    Instead of sneaking behind peoples backs and inflicting your complete lack of knowledge of what ME and CFS really are on them!!!
  6. Bob

    Bob

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    I think that this is a very difficult subject for our community to come to grips with, and I don't think it's something that we will all agree on for various reasons.
    I don't have strong opinions on it myself, but I'd just like to make a few comments.

    In the UK, 'CFS' and 'ME' are lumped together as a single 'syndrome' called 'CFS/ME', which is officially classified as a neurological disease. The UK government gives lip service to it being a 'neurological disease' but in reality treats is as a 'reversible' psychological illness based on a 'fear of activity'. So I'm not certain that recategorising CFS in the USA will make a load of difference to how the US authorities treat it.

    With the new ICC treating 'ME' as a distinct disease, and as a separate entity to 'CFS', I wonder if now would be a perfect time for patients to advocate separating ME from CFS - to get ME taken seriously as a neurological disease, and treated as a distinct disease. I wonder if recategorising 'CFS' into the same category as 'ME' somehow defeats the opportunity that the ICC brings us.

    What happens now to those patients who fall outside an ICC diagnosis, but still fit a CDC diagnosis? What diagnosis should they have? If CFS is reclassified as a neurological disease, then the situation is pretty similar to how it is now... ME will not be treated as a distinct disease, and in reality the CDC will continue to treat ME/CFS the same as ever - as a catch-all diagnosis for fatigue, superficially relabelled as a neurological illness.

    Unless the CDC fundamentally changes its ways, then nothing will change.
    They will still diagnose using their own criteria, and maybe they will rename the illness to CFS/ME, just the same as has been done in the UK.

    But I don't think there are any straightforward answers.

    The most important thing for me, is for research to be undertaken using the ICC.

    Tina, I really appreciate the effort you are making to explain your position.
    I'm not saying that I disagree with your position generally (I don't have a fixed opinion about this subject), but the above quite doesn't make logical sense to me.

    If the 'CFS' data that currently exists is for a non-neurological illness, then how does recategorising it as a neurological disease solve any problems?
    It just seems to bring all the CFS junk into the ME category, rather than separating ME from irrelevant CFS research.

    I don't think it's guaranteed that ME will be treated as a neurological disease unless the patient community pushes for the use of the ICC.
    In which case, maybe the recategorisation of 'CFS' is irrelevant, and even unhelpful.

    Anyway, these are just some thoughts. Like I said, I don't feel strongly about it as I don't know what is the best course of action that we should take.

    It might be the case that the CDC and other relevant government agencies will never recognise 'ME' unless 'CFS' is first recategorised as 'neurological' in a first step towards a better situation for patients, in which case I do see the sense of recategorisation. Once CFS is recategorised, then patients can work towards getting the 'CFS' name dropped and getting 'ME' taken seriously, and towards using more appropriate neurological diagnostic tools for 'ME' (e.g. the ICC).

    This is more an issue of politics than science or medicine. So I think that we should be thinking about what it the best in terms of political manoeuvring. I don't know what approach will have the best outcome for the wider patient community.

    All I do know is that we need ME to be treated as a distinct neurological disease, and for research to be carried out accordingly.
  7. Jill McLaughlin

    Jill McLaughlin *****

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    The point is that THEY have already done it, now want us to discuss it.
    Why didn't THEY want us to discuss it beforehand. Because this is not a
    discussion, it is a sales pitch. So let's not play into it and waste time.
    The Deadline is Oct 7. We need to stop this ASAP.

    Their whole agenda has been to make ME CFS. They've created
    their mythical ME/CFS and flooded the airwaves for months
    with ME/CFS nonsense.

    The fact remains that ME is not CFS. Saying something does not make it so.
    If some people have been erroneously been dx with CFS, the real solution
    would be to have them properly dx, and supporting the ME-
    ICC and fight for proper recognition of THEIR illness, not keep playing the CFS game.
    CFS will NEVER be a proper dx for ME, and certainly manipulating the
    codes will not do it. Making them the same will only in reality eliminate ME.

    This relatively small unqualified, ill-informed group will not be allowed to deny
    us our proper diagnosis. They clearly do NOT represent ME! So move on and
    fight for our rights.
  8. ukxmrv

    ukxmrv Senior Member

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    Would it be fair to ask if the ME part was missed out by the Coalition and that is what part of the problem is perceived to be here?

    That Post viral fatigue syndrome was included but not ME (either as the existing "benign" or with the "benign taken out)?

    Adding CFS (and not just including it in the index) is of course controversial as well.

    This is a genuine attempt to understand the debate and not intended to insult anyone.
  9. eric_s

    eric_s Senior Member

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    Rlc, i think you are wrong in your interpretation of the proposed changes to G93.3 in the ICD-10-CM.

    The proposals only list the changes. They are not what will be printed in the ICD-10-CM. If there is no reference to "Benign myalgic encephalomyelitis", that does not mean "Benign myalgic encephalomyelitis" will not be listed. What it means is that there will be no change to "Benign myalgic encephalomyelitis". And since it is already listed that means it will remain there. If they wanted to delete it, there would be a line "Delete Benign myalgic encephalomyelitis".
    ixchelkali likes this.
  10. Jill McLaughlin

    Jill McLaughlin *****

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    Time for debate and interpretation is over. They did it and obviously did not have the
    courtesy of wanting ANY debate or input from the patient community. It is done.
    This is not discussion, it is a sales pitch. Any questions or complaint were sent to
    their site or FAQ's. And I as well do not trust what they say.

    The important thing is to stop this NOW, then have actual honest and open
    debate and discussion.
  11. Nielk

    Nielk

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    Ric,

    your title of this thread is very controversial: HOW TO OPPOSE THE COALITION 4 ME/CFS PROPOSAL!!!!!!!!!!!!!
    You are not saying let's have a discussion and arrive at a consent. You are doing the same thing that you are accusing the coalition of doing. COMING TO A CONCLUSION WITHOUT ASKING FOR OUR OPINION.

    I can see that you feel very strongly about this but, if so, why didn't you directly contact the leaders of the coalitions to get a clear answer from them instead of inciting people here.

    Maybe you should ask to be on their committee for future decisions? You seem very knowledgeable about these matters.

    I don't think that it's advisable for the coalition to take an opinion poll of all patients before they come out with a statement.
    I don't think that it's feasible and I don't thin that most patients have so much knowledge of all the inner workings of how these propositions work.
    I', guessing that you are a lawyer because you accuse Tina of not knowing the law. Is your expertise in law in the medical profession?
    If you think that Tina who has such a vast amount of knowledge, doesn't know what she is saying, why would you believe any of us? Except if we agree with you.
    I don't think that the coalition who represent us need to come to us first before any action they have taken. After all, it is not like they are the ones who are making the decisions of the law, they are only giving suggestions.
    We elect officials in government to represent us. Does you congressman or senator ask your opinion before every vote in the house?
    If we were all trained in medicine and lawyers combined with experience of the medical codes, I can see asking for our opinions. But we are not.
    Are you angry for all of us? or is your anger coming from yourself?
    You can have your own input to the CDC and so can each one of us. The coalition is not holding you back from doing what you feel is right.
    I just feel that because of your anger, you sound inciting and it will not improve your persuasion of people here.

    If you would have left it as an open discussion, I think it would have so much more power.
    The way you are going about it is really making the decision for us and telling us what to do and how.

    I understand that your anger comes from frustration and wanting to help the community population here but, you need to tone it down.

    In addition, most patients (me included) can not read such a long post with technical observations. If you would want to make it readable to someone like me for example, you would have to make it much shorter and use layman's terms.
    That is, if you want our feedback.
  12. Nielk

    Nielk

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    Hi Jill,

    So, you are saying, first make a decision "to stop it NOW" and THEN start a debate and discussion?

    What do you think my IQ is?

    I do not trust what you say. What do you mean you do not trust what the coalition is saying but, they should trust "the all knowing reverend Jill'?

    Do not complain that I just insulted you.
    I just acted as a mirror for how you reacted to the coalition decision.

    All my best,
    Nielk
  13. Jill McLaughlin

    Jill McLaughlin *****

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    Niekl,

    Their proposal is done. Why discuss it? Just gives them an audience and wastes time.
    They did not want or care to discuss it with us. So now we should waste our time
    discussing it with them?

    You say you don't trust me but did I try to change and manipulate ICD codes
    behind the patient community's back?

    We do not trust them because there have been several mentioned inaccuracies
    and very shifty, disingenuous replies and responses.

    Jill
    --

  14. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    Rlc,

    Postviral fatigue syndrome is already proposed by the committees responsible for the development of ICD-10-CM to be coded at G93.3 (which mirrors the international ICD-10 coding for PVFS).

    G93.3 Postviral fatigue syndrome is the "Title" term that is a "child" to the "parent class", "G93 Other disorders of brain".

    (Benign) ME is already proposed by the committees responsible for the development of ICD-10-CM to be coded to the Title term, at G93.3 (which again, mirrors the international ICD-10).

    Therefore it is not necessary to propose that (Benign) ME should be coded to G93.3 because that is how the proposal already stands in the draft.

    This is how it is set out in the draft ICD-10-CM Tabular List:

    ( available to download from: http://www.cdc.gov/nchs/icd/icd10cm.htm#10update )


    ICD-10-CM CHAPTER 6 Update for 2011

    Diseases of the nervous system (G00-G99)

    Excludes2:

    [...]

    symptoms, signs and abnormal clinical and laboratory findings, not elsewhere classified (R00-R94)

    [...]

    G93 Other disorders of brain

    [...]

    G93.3 Postviral fatigue syndrome

    Benign myalgic encephalomyelitis​


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


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

    So it wasn't necessary to request that (Benign) ME is coded to G93.3, because that is how it already stands in the draft.

    What the C4ME/CFS has done, therefore, is to request that Chronic fatigue syndrome is deleted from Chapter 18, R codes at R53.82, inserted into Chapter 6, at G93.3 (specifying the "Title" term "G93.3 Postviral fatigue syndrome") and that the Excludes are revised, accordingly. It has also requested that the Chapter 18 R codes and the associated Excludes be adjusted accordingly.

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

    This is how Chronic fatigue syndrome is currently proposed for the ICD-10-CM Tabular List:

    ICD-10-CM CHAPTER 18

    Tabular List of Diseases and Injuries Update for 2011

    R53 Malaise and fatigue

    [...]

    R53.8 Other malaise and fatigue


    Excludes1: combat exhaustion and fatigue (F43.0)


    congenital debility (P96.9)

    exhaustion and fatigue due to:

    depressive episode (F32.-)

    excessive exertion (T73.3)

    exposure (T73.2)

    heat (T67.-)

    pregnancy (O26.:cool:

    recurrent depressive episode (F33)

    senile debility (R54)


    R53.81 Other malaise

    Chronic debility

    Debility NOS

    General physical deterioration

    Malaise NOS

    Nervous debility

    Excludes1: age-related physical debility (R54)


    R53.82 Chronic fatigue, unspecified

    Chronic fatigue syndrome NOS

    Excludes1: postviral fatigue syndrome (G93.3)​



    R53.83 Other fatigue

    Fatigue NOS

    Lack of energy

    Lethargy

    Tiredness
  15. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    CFSAC Recommendations for ICD-10-CM

    CFSAC Recommendations for ICD-10-CM:

    August 2005 CFSAC Recommendation:
    We would encourage the classification of CFS as a Nervous System Disease, as worded in the ICD-10 G93.3.

    May 2010 CFSAC Recommendation (proposed by Dr Nancy Klimas):
    CFSAC rejects proposals to classify CFS as a psychiatric condition in U.S. disease classification systems. CFS is a multi-system disease and should be retained in its current classification structure, which is within the Signs and Symptoms chapter of the International Classification of Diseases 9-Clinical Modification (ICD 9-CM).

    May 2011 Recommendation (proposed by Dr Lenny Jason):
    CFSAC rejects current proposals to code CFS in Chapter 18 of ICD-10-CM under R53.82: Chronic fatigue, unspecified > Chronic fatigue syndrome NOS. CFSAC continues to recommend that CFS should be classified in ICD-10-CM in Chapter 6 under diseases of the nervous system at G93.3, in line with ICD-10 and ICD-10-CA (the Canadian Clinical Modification), and in accordance with the Committees recommendations of August 2005. CFSAC considers CFS to be a multi-system disease and rejects any proposals to classify CFS as a psychiatric condition in US disease classification systems. (Note: no disease classification system under HHS control proposes to move or to include CFS in or among psychiatric conditions.)


    Recommendations (CFSAC Meeting May 10-11, 2011): http://www.hhs.gov/advcomcfs/recommendations/05112011.html
    Minutes Day One, May 10, 2011: http://www.hhs.gov/advcomcfs/meetings/minutes/cfsac-meeting-minutes_20110510.pdf (discussion of ICD-10-CM and DSM-5 implications from Page 26)
    Meeting materials: ICD-related questions from CFSAC for May 2011 meeting: http://www.hhs.gov/advcomcfs/meetings/presentations/icd_ques201105mtng.pdf
    Videocast: Day One, May 10, 2011: http://nih.granicus.com/ViewPublisher.php?view_id=26 (discussion of ICD-10-CM and DSM-5 starts 4:27:00 in from start of broadcast following lunch recess)
  16. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    If those on ME-CFS Forum who are getting themselves into a lather, would just slow down for a minute...

    The proposed codings for the Tabular list for ICD-10-CM are available from this CDC site:

    http://www.cdc.gov/nchs/icd/icd10cm.htm

    The proposal to code PVFS and ME to G93.3 in Chapter 6 of ICD-10-CM but to code for Chronic fatigue syndrome as "Chronic fatigue syndrome NOS" in Chapter 18, under the R codes, at R53.82, has been known about and reported publicly and internationally since at least 2007.

    This is not new information.

    The PDFs of the Tabular List were online in 2010 and updated versions for 2011.

    The codes for ICD-10 and proposed codes for ICD-10-CM have been clearly set out on two pages on my site at these URLs since late 2009:

    http://dxrevisionwatch.wordpress.com/icd-11-me-cfs/
    http://dxrevisionwatch.wordpress.com/icd-11-me-cfs/2/


    I am seeing misreporting of outdated information about the ICD-11 Alpha Draft. Before quoting from old posts on my site, please read the Caveat on this page of my site:

    Update on ICD-11 development: July 3, 2011

    Shortlink Post #86: http://wp.me/pKrrB-1eb


    Also note that the website: http://www.icd10data.com/ is not an official US ICD or CDC site. It is a commercial site that aggregates ICD coding data and data and definitions from a number of other US health classification systems which are not ICD.
  17. Ember

    Ember Senior Member

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    The slides and a recording of the presentation are available now at http://coalition4mecfs.org/ICDmeetingupdate.html
  18. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    To download the Tabular List for ICD-10-CM version for 2011 go here:

    http://www.cdc.gov/nchs/icd/icd10cm.htm

    Click on the link:

    ICD-10-CM PDF Format

    Open

    12/20/2010 08:40AM 14,131,267 icd10_cm_pdf.zip

    This will unzip to several PDFs which include the Tabular List and the Index. The Tabular List is around 7MB PDF.
  19. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    ICD-10-CM screenshots

    Screenshot 1: ICD-10-CM, version for 2011, Chapter 6: Diseases of the nervous system

    G93 Other disorders of brain

    [​IMG]


    Screenshot 2: ICD-10-CM, version for 2011, Chapter 18: Symptoms, signs and abnormal clinical and laboratory findings, not elsewhere classified (R00-R99)

    R 53 > R53.8 > R53.82

    [​IMG]

    Attached Files:

  20. rlc

    rlc Senior Member

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    Hi suzy I m well aware that

    Postviral fatigue syndrome is already proposed by the committees responsible for the development of ICD-10-CM to be coded at G93.3 (which mirrors the international ICD-10 coding for PVFS).

    G93.3 Postviral fatigue syndrome is the "Title" term that is a "child" to the "parent class", "G93 Other disorders of brain".

    (Benign) ME is already proposed by the committees responsible for the development of ICD-10-CM to be coded to the Title term, at G93.3 (which again, mirrors the international ICD-10).

    Therefore it is not necessary to propose that (Benign) ME should be coded to G93.3 because that is how the proposal already stands in the draft.

    So why exactly does the Coalition 4 ME/CFS proposals only included PVFS which is already in ICD and not ME!!!!

    It should either of included both PVFS and ME, or neither!!!!

    Their proposal contradicts everything that they are saying that they want.

    The idea that making the waste basket diagnosis CFS coded neurological, is somehow going to lead to the term CFS being retired is garbage.

    If this goes through, the code for CFS will not be reviewed again for at least a decade, So it guarantees that everybody is going to have to put up with this rubbish CFS diagnosis for at least another ten years!!!!! But that wont be the end of it, the writers of the ICD have a reputation to uphold, there not going to turn round and say you know how we coded CFS as neurological, guess what its not even a disease, silly us, ooops! It will make them look ridiculous!!!! They wont change the code again and you are going to be stuck with CFS for the rest of your lives!!!!!!!!!!!!!!!

    There is no need for this coalition proposal in the first place, ME has been planned to be in the ICD anyway, this will mean when it is introduced all doctors and insurance companies will be forced to recognize ME, and people will be able to approach the government for funding for research.

    This is just an attempt to make sure that CFS is kept as a disease, they dont want to get rid of the term CFS, it defies any logical thinking to say that giving CFS a serious code is a step to getting CFS removed and ME acknowledged. ME is already going to be in the ICD-10 the coalition proposal is bullshit.

    If CFS is in the same code as ME, it just puts us all the way back to square one, how is anybody supposed to be able to tell the difference between the two if that happens.

    The entire Coalition proposal in nonsensical beyond belief.

    Thanks to the Coalitions deceitful and underhand behavior in keeping this secret until it was done!!! There is now no time for debate!! We havent been given the opportunity

    Its a simple decision if you want the wasted basket diagnosis CFS falsely elevated to being a neurological disease, and have a clear understand that this will mean that CFS will not be gotten rid of for at least a decade and in all probability not in your lifetime then support the Coalition proposal.

    IF however you actually do want to get CFS dropped as an illness, and make sure that there is no confusion between ME and CFS anymore by making sure that they do not have identical codes in the ICD then do everything you can to oppose the Coalition proposal.

    Either way the clock is ticking, you have till October the 7th to submit comments to the CDC

    Just remember the ICD codes wont be change again for a very long time!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

    All the best

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