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ME and cfs to be classified as seperate illnesses

Discussion in 'General ME/CFS News' started by Gerwyn, Apr 21, 2010.

  1. Jerry S

    Jerry S Senior Member

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    Thanks for writing this, Mithriel. I appreciate your experience and clarity. I agree that those with only unexplained fatigue and only depressive disorders must be separated from those with neuroimmune disease.
  2. Gerwyn

    Gerwyn Guest

    FUKUDA does not diagnose ME or anything close to it.The CCD does.The name change to myalgic encephalopathy should help when Us experts put it into practice
  3. alphahusky

    alphahusky

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    I agree. But with that they've done to the term ME in the UK makes me shy of it.
  4. helsbells

    helsbells Senior Member

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    Where you part of that homeopathy trial in about 1999 - she had a double barrelled name I think initials E W J??
  5. Bob

    Bob

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    Mithriel, I think what you are saying is that, for practical purposes at the present time, ME and CFS are the same? (Or, at least, the same illness gets given both names.)

    This is the point that I've been making...

    So when any of us talk about ME and CFS as separate diseases, then we need to explain what we mean, and what diagnostic criteria we are referring to...

    Otherwise no one knows what we are talking about... there's been quite a bit of confusion on this thread.
  6. Bob

    Bob

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    I agree with your concerns alpha.
    These are the concerns that I've been expressing, in my earlier posts, about separating ME from CFS.

    I agree with what you are saying... that doctors will never be willing to give an ME diagnosis when they can give an easier CFS diagnosis.
    This is why I think that there should be a single name for ME/CFS, which can then be divided into subsets for research and treatment purposes.

    I think that a lot of the issues depend on which diagnostic criteria they propose to use for both ME and CFS (for the ICD-10-CM).
    I assume that the authorities would need to agree a separate diagnostic criteria for both conditions, so therefore all patients would need to be reassessed using the new criteria.
  7. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    Bob said:

    ...we can't even get our UK patient orgs to promote the adoption of the CG.

    In 2006, the ME Association ran a formal postal ballot of its membership on whether the Association should adopt the CG.

    The MEA's magazine ran a double page spread of opinion for and against. Dr Charles Shepherd lobbied against the motion but no external medical professional was invited to put forward the case in favour.

    Despite the influence of Dr Shepherd amongst the a-political membership, the vote went in favour of adoption.

    What did the MEA do? They issued a notice informing the membership of the outcome of the vote and stated that the Association had adopted the CG "in principle". (What they meant by "in principle" was not defined.)

    Then they deftly kicked the Canadian Criteria under the carpet. Dr Shepherd continues to argue against the use of the CG.

    Is any research being carried out anywhere using CG, other than that undertaken by WPI and apparently, the ME Research UK co-funded Swedish XMRV study?

    Suzy
  8. Dolphin

    Dolphin Senior Member

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    http://www.meresearch.org.uk/research/projects/bioenergetics.html
    Investigators
    Prof. David Jones and colleagues

    Institutions
    Institute of Cellular Medicine, University of Newcastle, Newcastle upon Tyne, UK

  9. Bob

    Bob

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    Yes, it's a very sorry state for our country to be in!
    (Except, we have to start talking about England and Scotland separately now, because Scotland is adopting the Canadian guidelines.)


    Hmmm... I don't know, but I could hazard a guess that there's not much going on!
  10. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    In a previous posting in this thread, I provided links for and information on the current proposals for the forthcoming US version of ICD - the ICD-10-CM, scheduled for implementation in October 2013.

    One of the links was for this historical CDC document from 2001, which I hadn't seen until recently, when it turned up by chance during one of my daily search engine fixes.

    I've posted the content in full, below, with apologies if the content of this 2001 document has already been posted.

    http://www.co-cure.org/ICD_code.pdf

    CDC document: A Summary of Chronic Fatigue Syndrome and Its Classification in the International Classification of Diseases

    (Note: the proposals for the coding of Chronic fatigue syndrome for ICD-10-CM have since been superceded as per my previous post #97)


    A Summary of Chronic Fatigue Syndrome and Its Classification in the International Classification of Diseases

    Prepared by the Centers for Disease Control and Prevention, National Center for Health Statistics, Office of the Center Director, Data Policy and Standards

    March 2001

    This document provides a summary of the classification of Chronic Fatigue Syndrome in the International Classification of Diseases, ninth and tenth revisions, and their clinical modifications.

    ICD-9

    The International Classification of Diseases, ninth revision (ICD-9), was published by the World Health Organization (WHO) in 1975. WHO did not make revisions to the classification between major updates, which usually occurred every ten years. The term chronic fatigue syndrome did not have a specific code in ICD-9 nor did the term appear in the alphabetic index of ICD-9. The only entry in the alphabetic index of the ICD-9 was Syndrome, fatigue and referenced code 300.5, Neurasthenia, a condition classified in Chapter V, Mental disorders.

    The term benign myalgic encephalomyelitis appears in the alphabetic index and references code 323.9, Encephalitis of unspecified cause. The code 323.9 did not include reference to postviral syndrome. The term postviral syndrome was classified to code 780.7, Malaise and fatigue, in Chapter 16, Symptoms, signs and ill-defined conditions.

    It should be noted that while many terms are listed in the alphabetic index, all of the terms may not appear in the tabular list of the classification. This is a standard convention of the ICD.

    ICD-9-CM

    For morbidity data the United States uses the International Classification of Diseases, ninth revision, clinical modification (ICD-9-CM), a clinical modification of ICD-9. ICD-9-CM has been used in the United States since 1979 and has an annual update process that has been in place since 1985. The update process begins with the convening of the public forum, ICD-9-CM Coordination and Maintenance Committee. Proposals to modify the classification are presented and discussed during these public meetings. Information about future meetings of the ICD-9-CM Coordination and Maintenance Committee may be found on the NCHS website at

    http://www.cdc.gov/nchs/about/otheract/icd9/maint/maint.htm.

    In 1990, a recommendation to create a specific code for chronic fatigue syndrome was presented. At that time, there was no consensus about the etiology of the syndrome, which is needed to accurately classify a condition in the ICD. A new code could not be created because of this problem; however, a modification to the alphabetic index was made to direct users of the classification to code 780.7, Malaise and fatigue. This is the same code used to identify cases of postviral syndrome. This change became effective October 1, 1991.

    In 1998, subcategory 780.7 was expanded to include new five-digit codes. The new codes created included code 780.71, Chronic fatigue syndrome. The placement of this condition in this category was consistent with the WHO version of ICD-9 and with its placement within ICD-9-CM.

    ICD-10

    WHO published ICD-10 in 1992 and included many modifications, among them relocation of some diagnoses to different chapters within the classification. WHO created a new category G93, Other disorders of brain, in Chapter VI, Diseases of the Nervous System, and created a new code G93.3, Postviral fatigue syndrome, a condition which was previously in the symptom chapter of ICD-9. WHO also moved benign myalgic encephalomyelitis to the new code G93.3.

    The alphabetic index contains other terms, such as chronic fatigue syndrome, that WHO considers synonymous or clinically similar.

    Changes made in ICD-10 are unique to that version of the classification and not retrospectively applied to previous revisions of the ICD. Therefore, any changes in ICD-10 such as the creation of new categories or relocation of conditions from one chapter to another are not retroactively added to ICD-9 or ICD-9-CM.

    ICD-10-CM

    In keeping with the placement in the ICD-10, chronic fatigue syndrome (and its synonymous terms) will remain at G93.3 in ICD-10-CM.*

    While it appears most appropriate to classify chronic fatigue syndrome in ICD-10-CM in the same way that it is classified in ICD-10, this placement is not without problems. The primary concern with the current WHO placement in ICD-10 has been that the abnormalities of the brain in chronic fatigue syndrome patients most often cited in the literature are not found in all chronic fatigue syndrome patients. While chronic fatigue syndrome may be a heterogeneous group of disorders, some but not all are neurological in nature. Likewise, not all patients have experienced a viral infection prior to being diagnosed with chronic fatigue syndrome, nor are immune system anomalies universally found. Also of potential concern is the similarity between the type of neurological findings in chronic fatigue syndrome and in depression, which is a psychiatric disorder. Involvement of multiple systems has complicated the classification of chronic fatigue syndrome.

    It should be noted that issues related to reimbursement have not been a factor in deliberations regarding placement of chronic fatigue syndrome in ICD. Modifications to ICD-9-CM (the classification currently in use) and in ICD-10-CM, its intended replacement, are based on relevant clinical information and adherence to the structure and conventions of the ICD. The decision of third party payers regarding their coverage and reimbursement policies are independent of the decisions regarding modification of the classification.

    [PDF Ends]

    *Ed: Since superceded as per my previous post #97
  11. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    Thank you, Tom.

    Suzy
  12. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    Yes, this proposal has been welcomed, it will be interesting to see how it pans out in practice.
  13. Bob

    Bob

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    Yes, it will be very interesting, won't it Suzy... it might even have unforeseen positive consequences for the ME community in England.
  14. Bob

    Bob

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    Thanks for all the details Suzy... and thanks for the info regarding ICD-10 and ICD-10-CM in your previous posts... it's much appreciated.
  15. Bob

    Bob

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    I agree with your concerns Suzy.
  16. Mithriel

    Mithriel Senior Member

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    Bob said

    ME is probably the same as one of the illnesses covered by CFS. Any other consideration to the contrary, CFS is a useless name now because it means so many different things and has included so many different patient groups.

    I think the simplest solution is to consider "ME/CFS" as the illness we share.The psyches carry on with CFS but mean somatisation so we should never refer to ourselves as having it even if doctors insist.

    ME/CFS is probably what is picked up by the canadian guidelines.

    One of the problems with patient groups in the UK is that many of the members have idiopathic fatigue rather than ME/CFS. Severe ME patients can't become active so the voices and opinions are skewed.

    Mithriel
  17. Frickly

    Frickly Senior Member

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    Thanks Bob! :Retro smile:

  18. Angela Kennedy

    Angela Kennedy *****

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    Me too. 'until the science is sorted' is a crucial issue.
  19. Bob

    Bob

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    Yes, I agree.


    I agree, except many of us do refer to ourselves as having CFS, because that is what so many of us are diagnosed with.


    I would bet that almost all of us on the forum would be diagnosed with ME using the Canadian guidelines, or similar criteria.
  20. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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