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Discussion in 'General ME/CFS News' started by Ana, Mar 7, 2011.

  1. Bob

    Bob

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    Yes, if a patient advocacy organisation is going to start campaigning for changes to the use of the terms 'ME' and 'CFS', then they need to be exceptionally and absolutely clear about how exactly they define the terms themselves, in order to avoid all possible ambiguity.

    There seem to be many different definitions of both ME and CFS, depending on what literature and evidence you refer to, which definitions and diagnostic criteria you are using, what history books you read, what country you live in, what doctor you are seeing, and what your personal beliefs and preferences are.

    I'm not clued up on the ICD definitions of CFS and ME, but I expect that they are more specific than the definitions that individual countries use.

    Some people believe that ME can only be found in outbreak areas, and has specific neurological signs or symptoms.
    Others, like me, believe that ME can be defined by the Canadian Criteria, and possibly that post-exertional malaise is a good enough criteria for an ME diagnosis.

    And then what of the individuals who don't meet the particular 'ME' diagnostic criteria of choice?
    What label will these patients be given?
    If these patients are going to be given a 'CFS' diagnosis, then we can't campaign that the CFS name is changed to ME.

    If ME is going to be the only name used for CFS/ME, then ME would have to become a broad, inclusive, diagnosis, and the name change will be surface deep, and will make little difference, unless we also have a CFS diagnosis alongside it, or simply a 'chronic fatigue' diagnosis.

    If we are going to separate ME from CFS, then there will be a lot of potential 'CFS' patients who are going to be extremely unhappy.
    And if it is proposed that 'CFS' is downgraded to simply 'chronic fatigue' then this will make a lot of CFS patients even more unbearably unhappy.
    Personally, I believe that some CFS/ME patients, with mild to moderate symptoms, who might not potentially meet a more exclusive 'ME' diagnosis, are actually XMRV positive.

    It's such a complex area that I believe this subject needs to have our whole community on board if changes are proposed.

    There's a thread about this subject here, if anyone is interested in joining the debate...

    Diagnostic Criteria - can we resolve our community's differences?
    http://forums.aboutmecfs.org/showth...ia-can-we-resolve-our-community-s-differences
  2. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    I'm going over old ground here, Bob, as this has been covered in depth in several other threads.

    There are NO definitions of CFS, PVFS, or ME in ICD-10. Nothing.

    This will change in ICD-11, as I have covered in the ICD-11 thread and on my site, here:

    PVFS, ME, CFS: the ICD-11 Alpha Draft and iCAT Collaborative Authoring Platform

    Shortlink Post #46: http://wp.me/pKrrB-KK


    For ICD-10 (the International version that is used in over 110 countries) the following publications are available online:

    ICD-10 Volume 1 Tabular List of inclusions and four-character subcategories is available online.
    http://apps.who.int/classifications/apps/icd/icd10online/
    http://apps.who.int/classifications/apps/icd/icd10online/?gg90.htm g933

    ICD-10 Volume 2 Instruction Manual [PDF] is available online.
    http://www.who.int/entity/classifications/icd/ICD-10_2nd_ed_volume2.pdf

    ICD-10 Volume 3 The Alphabetical Index you have to pay for.

    But there are scans of the entry in Volume 3 The Alphabetical Index, on my site.

    There is also ICD-10 Classification of Mental and Behavioural Disorders Clinical descriptions and diagnostic guidelines (the Blue Book) available online at: http://www.who.int/classifications/icd/en/bluebook.pdf

    This is a separate and more comprehensive version of the classifications in Chapter V Mental and behavioural disorders.

    I don't really want to have to set out the classifications for PVFS, ME and CFS in ICD-10 again so please refer to this page on my site:

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

    and see this page http://wp.me/pKrrB-KK

    for proposals for ICD-11 with screenshots from the ICD-11 drafting platform (the iCAT).

    Don't forget, ICD-10-CM will be a "Clinical Modification" of ICD-10 and that the US is currently using a "Clinical Modification" of ICD-9, which was retired by the WHO many years ago and was replaced with ICD-10.


    Suzy
  3. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    When you say "if changes are proposed" whose proposals are you referring to, please, and for which version of ICD, since ICD-10-CM only applies to the US?

    I don't understand, Bob, why you created a new thread given that there was already a thread that had been going for sometime discussing the longstanding proposals for ICD-10-CM, comparing them with ICD-10 and with proposals for ICD-11 etc.

    The US specific, ICD-10-CM, has been in development for many years and the current proposals for ICD-10-CM have been known about since at least 2008.

    In 2001, the proposal had been to code all three terms in Chapter 6 of ICD-10-CM at G93.3. That would have brought the US in line with International ICD-10, the Canadian "Clinical Modification" ICD-10-CA and proposals for ICD-11.

    The proposal for ICD-10-CM since at least 2007/8 has been to retain CFS (as Chronic fatigue syndrome NOS) in the R codes under

    R53 Malaise and fatigue

    [...]

    R53.82 Chronic fatigue, unspecified
    Chronic fatigue syndrome NOS
    Excludes1: postviral fatigue syndrome (G93.3)

    (its retention in the R codes being a legacy from the US specific, ICD-9-CM).

    But to code for PVFS and ME in Chapter 6 of ICD-10-CM at G93.3 with "Excludes1: chronic fatigue syndrome NOS (R53.82)"

    Suzy
  4. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Not sure what your specific problem has been.

    There are three volumes for International ICD-10 that is in use in the UK and over 110 other countries which are on the main WHO site (except for Volume 3 which you have to pay for).

    For the US, you must refer to the US specific "Clinical Modification" of ICD-9, that is on the CDC site. The US has been authorized by WHO, Geneva to adapt ICD-9, and latterly to adapt ICD-10 for specific US use.

    So you cannot refer to the International version on the WHO site when looking for information on the US version. For the US you need to go to this site:

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

    Suzy
  5. Sing

    Sing Senior Member

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    First we need really good research, and for that, using the CCD as the most informed definition as yet. Then we can go on to clarify the definition.
  6. In Vitro Infidelium

    In Vitro Infidelium Guest

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    The Diagnostic Criteria - can we resolve our community's differences? thread certainly demonstrates the structural disconnect between M.E/CFS/M.E affected people’s thinking on the one hand and the administrative realities of the ICD process and Nationally based clinical descriptions on the other. ICD has never had the significance that most people seem to want it to have, ultimately it’s about the space on the shelf where a disease file gets placed, and unless there something in the file the ICD is just a dust gathering location.

    Diagnostic criteria are important because they have a direct impact upon the services and support a patient can/should expect. Classification should follow diagnosis and disease description, not the other way around and as hateful as it may be to acknowledge it, Wessely was on firm ground when he critiqued the ICD for being an unhelpful place to start when describing the condition – of course he chose not start from anywhere most M.E/CFS/M.E affected people would have preferred which would have been Ramsay etc. The constant refrain that the Oxford criteria was a purely psychiatrist generated document is misleading, of the 27 authors only 8 were psychiatrists or psychologists. Oxford may be problematic, and in the UK it has anyway been superseded by the NICE guidelines, but it was never the maleus malificarum it is sometimes presented as. Ultimately though these are all questions where the power of decision lies with the medical profession and the national medical administrations and patients have little chance of effecting change any time soon.

    There is a way to dispose of the ‘name/classification’ anxiety, and that is to employ a simple logical test which matches any one notional name/classification against any one other notional name/classification:

    "what is the probability that name/classification A more accurately identifies a patient group whose members share underlying aetiology than does name/classification B ?"

    without being able to test for aetiology there is no way answer the question in real terms, which leaves us at this stage in the position that all names/classifications have an equal probability of accurately identifying a patient group that shares underlying aetiology i.e pursuing the differential is pointless, both clinically and in research terms. The only issue regarding names/classifications that can currently be addressed is that which relates to the provision of services and support, – and that’s a purely pragmatic issue which needs to be dealt with in relation to individual National health care arrangements.

    The CFS designation has international recognition, what is required is research to establish aetiology, across the broad spectrum of patients within an inclusive diagnosis of CFS. Researchers can use any subgrouping they deem appropriate – if they see evidence for Ramsay or London or Oxford or Canadian criteria having a useful differential role, then they can sub group on application of any of those criteria. Anything else is merely putting the cart before the horse.

    IVI
  7. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    New ICD-11 Training videos, video transcripts and Key Revision documentation

    Shortlink Post # 65: http://wp.me/pKrrB-YI

    The information in this post relates only to the development of ICD-11. It does not relate to the development of the forthcoming US specific “Clinical Modification” of ICD-10, known as “ICD-10-CM”.


    One of the main differences between ICD-10 and ICD-11 will be the amount of textual content associated with ICD categories. In ICD-10, there is no textual content, definitions or descriptions for any of the three terms, PVFS, ME, CFS, and the relationship between these terms is not specified within ICD-10.


    A WHO ICD Revision meeting was held in Ankara, Turkey, at the end of February. The ICD Revision Paediatrics Topic Advisory Group (TAG) met to discuss “Diagnostic issues on Children and Youth”.

    A number of meeting documents and videos have been posted on the ICD Revision site which are general background documents to the ICD-11 development process and not specific to the work of TAG Paediatrics or the focus of the Ankara meeting.

    The two training videos (“ICD-11 Content Model Training” and “iCAT Training”) are now also available on YouTube. The training videos are aimed at those currently involved with the ICD-11 Revision process as WHO staff, IT technicians and the chairs, managing editors, members and external reviewers of the ICD-11 Topic Advisory Groups but will be of general interest to those following the development of ICD-11.

    Content Model

    One of the main differences between ICD-10 and ICD-11 will be the amount of textual content associated with ICD categories. In ICD-10, there is no textual content, definitions or descriptions for any of the three terms, PVFS, ME, CFS, and the relationship between these terms is not specified within ICD-10.

    But the ICD-11 Content Model contains 13 parameters that may be used to describe ICD entities and these parameters are discussed in the training video. So if you are not familiar with the extent of the potential for textual content describing categories within ICD-11, this video sets this out. In the References is the URL for the latest version of the “Content Model Reference Guide” document.

    The 13 Parameters through which an ICD-11 category can be described are:

    1. ICD Entity Title; 2. Classification Properties; 3. Textual Definition(s); 4. Terms; 5. Body Structure Description; 6. Temporal Properties; 7. Severity Properties; 8. Manifestation Properties; 9. Causal Properties; 10. Functioning Properties; 11. Specific Condition Properties; 12. Treatment Properties; 13. Diagnostic Criteria.

    iCAT

    The second video describes the operation of the iCAT collaborative drafting platform through which the alpha and beta drafts are being developed. The platform is currently behind a password and accessible only to ICD Revision personnel who have editing rights, but it is understood that after the Beta Drafting stage has been reached, the iCAT should be accessible to stakeholders for limited input.

    The iCAT had been in the public domain up until early November for public viewing only and I have some relevant screenshots of the population of content as it stood in the iCAT, at that point, here:

    PVFS, ME, CFS: the ICD-11 Alpha Draft and iCAT Collaborative Authoring Platform: http://wp.me/pKrrB-KK

    ICD-11 Training videos:

    1] Content Model Training Video, YouTube:

    Duration: 20: 38 mins

    http://www.youtube.com/watch?v=q5Z0xcijjoo


    An MS Word document of the Content Model Training Video Script can be downloaded here:

    Transcript of Content Model Training Video

    http://docs.google.com/viewer?a=v&p...xpY2QxMXJldmlzaW9ufGd4OjUxZWY5OGQ3MGQzZjQzOGM



    2] iCAT Training Video, YouTube:

    Duration: 29:12 mins

    http://www.youtube.com/watch?v=D9hl3LJxou0


    An MS Word document of the iCAT Training Video Script can be downloaded here:

    Transcript of iCAT Training Video

    http://docs.google.com/viewer?a=v&p...xpY2QxMXJldmlzaW9ufGd4OjRjNDQ3OTJkMTBhOTNlMzk


    References:

    1] Ankara Paediatrics meeting 28 February-1 March 2011
    Background documents page and Agenda

    2] Key document: Content Model Reference Guide version January 2011

    3] Key document: ICD Revision Project Plan version 2.1 9 July 2010

    4] iCAT Drafting Platform browser
    (Access and editing rights currently restricted to WHO and ICD Revision, TAG members and IT personnel):
  8. Ian McLachlan

    Ian McLachlan

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    I think you make a good point. It is not as though GPs are arguing that they cannot diagnose our condition. It fact they are more than happy to guess and send a mixed group on to the clinics resulting in the government claiming in the past that five different codes could be used to describe what we have. Pointless us endlessly arguing when such shocking evidence doesnt raise much of an eyebrow.
  9. Angela Kennedy

    Angela Kennedy *****

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    Wow.

    "Wessely was on firm ground"? To dismiss a WHO ICD-10 category made, not by patients, but the WHO, and in order to substitute neurasthenia! pur-lease.

    He has been part of a concerted effort to confuse and obfuscate a neurological condition with hysteria and neurasthenia, and part of this has includes rhetorically conflating neurological dysfunction with sometimes metaphorical 'fatigue', make unsubstantiated claims about patients in the late eighties and nineties, then exclude neurologically dysfunctioned patients out of his and others research.

    As one advocate once said, CFS sufferers with underlying pathophysiology from research into CFS is:

    There's a whole history here which I think you might be ignorant of, or you are putting your own special and inaccurate spin on the history. Re-writing par excellance.
  10. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Well, for someone who appears to have a particular interest in posting notices on behalf of the IMEA, "Ana's" very quiet.

    Suzy
  11. Wayne

    Wayne Senior Member

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    Hi Suzy,

    I've noticed that too.

    I just started reading this thread yesterday, and have very much appreciated the time, effort and diligence you've devoted to it. So much of what you've described/uncovered is very good information for all of us to know. Thank you!

    Best, Wayne
  12. Bob

    Bob

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    Thank you very much for the refresher Suzy. Refreshers are always helpful.
    I do follow the threads Suzy, but I have a serious memory retention problem, especially when it comes to technical details. I don't refer to the ICD's very much so I don't tend to remember the details, if I ever managed to absorb them in the first place!

    The thread that I started is intended to help us explore the subject of diagnostic criteria and to try to understand each other's different perspectives and opinions. It wasn't a thread directly relating to working on the ICD's.
    Any changes made to the way ME/CFS is treated in the USA and the UK, including the diagnostic criteria used, will, I believe, likely come from pressure from patients (i.e. political pressure.) (Unless we have a major scientific breakthrough before hand.)
    In which case, patient advocacy groups would be involved in the process.
    So I think it's a good idea if patients explore this area together, and see if we can understand and accommodate each other's points of view and differences. I believe that if the patient community can speak with one voice on this issue, then changes will surely come faster. That's what the thread is about.

    To be honest, I have no idea how the ICD's are formulated, or how the ICD-CM's are formulated. (i.e. what the process is.) (That's not a request for more info Suzy.) But I do know that patient knowledge and pressure makes a difference in how the UK and USA governments respond to ME.


    Suzy, I admire you work on the ICD's, and I'm grateful for it, but it's not something that I can get involved in, so please don't be offended if I am not clued up about the subject.

    I think that our community can approach these matters from different angles, depending on what suits the individuals involved.

    Yes, I agree with that... I don't think that the ICD's have so much relevance, in reality...
    What I believe is more relevant is the political situation in each country.
    Governments tend to ignore whatever the WHO has to say about ME anyway, and continue to treat ME primarily as a psychological illness, whatever lip-service they might give to it being a neurological disease.
  13. Angela Kennedy

    Angela Kennedy *****

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    But none of the above is a good reason to drop ME from G93.3 neurological, and place it, say, into the archaic and outdated section of 'neurasthenia' (Wessely's pet project, by the use of it) by the use of poorly conducted research on cohorts nothing to do with Ramsay or Canadian defined ME or ME/CFS.

    The inconsistency if anything helps this community and affords a little protection against the excesses of psychgenic explanations for the illness.

    And, I confidently predict that, should ME/CFS be removed of its WHO ICD neurological categorisation, the same psychiatrists, so concerned about the dust-gathering irrelevancy of WHO ICD and that neuro category, will suddenly use the changes as high quality evidence and cite it, with authority, as often as they can.
  14. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    There is no evidence, Angela, that ICD-11 Revision Steering Committee intends to code for PVFS, CFS and ME in any chapter other than Chapter 6.

    Suzy
  15. Angela Kennedy

    Angela Kennedy *****

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    Hi Suzy

    Thanks for this info.

    Is Chapter 6 a 'neurological' category?

    Obviously I'm hoping this is the case.

    My comment was about the general propensity, of proponents of psychenic explanations for ME/CFS, towards extreme ontological gerrymandering, in their use of appeals to authority to support their claims...
  16. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    You're welcome, Wayne.

    I'm not actually supposed to be here. I made the decision a couple of months ago, for a number of reasons, not to continue to post on these forums; one reason being that with several WordPress sites to maintain and with ICD-10 revision towards ICD-11 and DSM-5 development, and the research this involves, there really isn't time to be posting on forums as well.

    I only got drawn back in because I wanted to correct a misconception of Gerwyn's, quoted in another thread started by "Ana". So what I am going to do, shortly, is to post some screenshots from ICD-11 development, then withdraw again as I've got a number of projects on that I really need to attend to.

    But thanks again for your kind words.

    Suzy
  17. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Blanked as edit facilty malfunctioning.
  18. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Try again:


    It is set out in this ICD-11 Revision Key document: ICD Revision Project Plan version 2.1 9 July 2010 that the use of Roman numerals for Chapter numbers will be dropped for ICD-11.

    So for ICD-11, Chapter V Mental and behavioural disorders is known as Chapter 5 and Chapter VI Diseases of the nervous system is known as Chapter 6 Diseases of the nervous system (commonly referred to as the "Neurological chapter").

    It is within Chapter 6 Diseases of the nervous system that ICD-11 proposes to classify for PVFS, Chronic fatigue syndrome and (B)ME.


    Incidently, ICD Revision Steering Committee (RSG) is discussing the potential for an additional Multisystem Chapter. There is a Discussion document here:

    http://sites.google.com/site/icd11r...m_diseases_20100818-1.docx.doc?attredirects=0

    Discussion document: Multisystem Chapter, authors: Aym
  19. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    This is driving me nuts. Once again, only part of my response is displaying. I'll post the rest in the next post.
  20. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Blanked - cannot post more than a few lines, although Preview displays in full.

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