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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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CDC Interview on the CFS Toolkit

Discussion in 'General ME/CFS News' started by Mindy Kitei, Oct 27, 2012.

  1. Ember

    Ember Senior Member

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    As Dr. Carruthers points out, the Canadian Definition has been found not to join but to separate ME and CFS:
    Despite its claim that ME and CFS are the same illness, the Coalition advocates for the adoption of the Canadian Consensus Document (http://www.coalition4mecfs.org/JoinUs.html).

    You misinterpret repeatedly the same two sentences from the ICC abstract, trying like Drs van der Meer and Lloyd to claim that the ICC authors “propose to revert to the term ‘myalgic encephalomyelitis’ (ME), abolishing CFS.” The International Consensus Panel has been clear: “Those who fulfill the ICC have ME; those who do not would remain in the more encompassing CFS classification.”
  2. Andrew

    Andrew Senior Member

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    I don't go by what Van der Meer says. He is not our friend. If you want to quote him, that's up to you. But don't expect me to take it seriously.

    As for whether Canadian joins them or not, I invite people to see for themselves. Here is a quote from the CCC.

    Here is a link to the CCC.

    http://www.name-us.org/DefintionsPages/DefinitionsArticles/ConsensusDocumentFull.pdf

    The first page is the title page, and on the top of the next page you will find the quote. You can also read it in context there.

    Anyway, I don't have the stamina to keep correcting a barrage of bad information. Please everyone, read the CCC and you will see who is telling the truth here.
  3. Ember

    Ember Senior Member

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    Last year, the International Consensus Panel expressed its view that the hybrid term ME/CFS has become a source of confusion. “Unfortunately, the name ‘CFS’ and its hybrids ‘ME/CFS’ and ‘CFS/ME’ have been used to refer to both ME and general chronic fatigue.” Marj van de Sande, co-editor of both the CCC and the ICC, explained that the CCC document originally bore the name “myalgic encephalomyelitis,” but that its name was changed to ME/CFS in order to increase recognition among American patients:
    With the CCC almost ten years old, the International Consensus Panel recommends that those patients diagnosed using the CCC and not fulfilling the ICC should remain now in the more encompassing CFS classification:
  4. Andrew

    Andrew Senior Member

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    You said the CCC separated ME and CFS. Your quote doesn't support your position.

    As for your other quote from the primer, it is in disagreement with the ICC. I was going by the ICC, which says the CFS name was a mistake, and suggests it be replaced with ME. Also, the primer is in conflict with the other reference you cited from one of the members who lambasted all the definitions except CCC. If these other definitions are so bad, they should not be supporting them. It looks to me like these two authors are acting on their own and without the depth of thought shown by the full committee.
  5. Ember

    Ember Senior Member

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    Dr. Carruthers' article, “The New International Consensus Criteria for M.E. - content and context, ” contains his original presentation to the IACFSAC Conference. Dr. Broderick's article is a “Response...By the International Consensus Panel.” Both authors are acting as official spokespersons for the International Consensus Panel.

    The ICC endeavour now includes the original ME-ICC and the ICP. (The International Symptoms Scale is still in process.) The ICC and the ICP are both consensus documents.

    The ICC states, “The scope of this paper is limited to criteria of ME and their application.” The ICP recommendation that those CCC patients who don't fulfill the ICC would remain in the more encompassing CFS classification may stem from the fact that the CCC is a more encompassing definition, bearing the confusing ME/CFS label. Certainly the recommendation sets the ICC apart from its CCC predecessor.
  6. Andrew

    Andrew Senior Member

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    None of what you said changes the fact that Dr. Broderick attacked the validity of all the definitions except the CCC. Dr. Carruthers' validates all of them, and even lumps CCC in with Oxford. What Carruthers said is in conflict with Broderick. It also overlooks the research and the sentiments of most committee members when it throws the CCC into the same pot as the various other definitions.
  7. Ember

    Ember Senior Member

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    Your attributions puzzle me, especially when you seem to be referring consensus documents. If you're referring to the ICP, then notice, “Primer Consensus: The authors, representing twelve countries, reached 100% consensus through a Delphi-type process.”

    (Can you seriously be disparaging Dr. Carruthers for his handling of the CCC?)
  8. Andrew

    Andrew Senior Member

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    Your statement puzzles me, especially after I went to so much trouble to clarify. Try rereading.
  9. Ember

    Ember Senior Member

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    http://hetalternatief.org/ICC primer 2012.pdf
  10. Andrew

    Andrew Senior Member

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    http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02499.x/full
    warriorseekspeace likes this.
  11. Ember

    Ember Senior Member

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    Thanks, Andrew. I've read “Response to 'A Controversial Consensus'; By the International Consensus Panel” and the ICP. Can I take it that you disagree with the International Consensus Panel's recommendation that ME should be separated from CFS?
  12. Andrew

    Andrew Senior Member

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    I've already clarified this when I stated agreement with the following.

    http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/abstract
  13. Ember

    Ember Senior Member

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    Do you agree or disagree with the International Consensus Panel's recommendation that ME be separated from CFS?
  14. Andrew

    Andrew Senior Member

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    Your question includes a statement. And I've already clarified my position.
  15. Ember

    Ember Senior Member

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    The International Consensus Panel has recommended separating ME and CFS:
    Do you agree or disagree with the International Consensus Panel's recommendation to separate ME and CFS?
  16. WillowJ

    WillowJ Senior Member

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    I don't understand what CFS is supposed to mean? I don't see any valid meaning for CFS other than inappropriate usage for ME or inappropriate usage for ICF? Is there some statement from the scientists that I missed?

    I had thought they meant to extracate ME from CFS=ICF&ME (since we cannot get any traction to destroy CFS=ICF)?
  17. WillowJ

    WillowJ Senior Member

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    Ember posted a quote from: http://investinme.org/Documents/Journals/Journal of IiME Vol 6 Issue 1 Screen.pdf

    It appears clear to me that this refers to CFS=ICF (not to any particular entity which could rightly be considered an actual syndrome of CFS)

    See also:
    "Over vigorous objections, the name then largely shifted to “CFS”, a noncommittal umbrella disease concept that
    includes all fatigues that are severe, chronic and unexplained, but ignores the “syndromeness” embedded in its etymology by putting symptoms onto lists that ignore their dynamical relations of causal inter-activity. This latter points to a common underlying causal structure, however complex and currently unknown, and is found in the etymology of the word “syndrome” (Gk. running together)."
    Carruthers, IiME, Vol 6, issue 1 (bolding mine)
    http://investinme.org/Documents/Journals/Journal of IiME Vol 6 Issue 1 Screen.pdf

    So it appears to me that it's ICF [inappropriately titled CFS] which they intend to remove ME from. Not an additional condition of CFS. There are only two: ME and ICF. Both inappropriately being called CFS. And inappropriately conflated.
    Purple likes this.
  18. WillowJ

    WillowJ Senior Member

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    Regarding the Coalition 4 ME/CFS's proposal, please remember that this proposal referred to coding only.

    I'm certain they want to change the definition, but one cannot change the definition with the coding committee. That requires a different initiative with a different committee.

    The reason they were working on coding at this time was that the US is set to adopt its clinical modifications of ICD-10, so it seemed a prime opportunity to move the disease from the F codes (signs, symptoms, and ill-defined conditions) to the G codes (neurological) where WHO has PVFS, CFS, and ME listed all together under G93.3. Please recall that CDC had written G93.3 out of ICD-09-CM entirely, and it is illegal in the USA to diagnose or treat for any condition which does not appear in the ICD-CM.

    I believe that this move would encourage less wastebaskety ICF-type diagnosis, and communicate the severity of the condition to doctors and insurance companies, even if nothing else were immediately changed.

    Of course, getting a better definition in use and quashing especially the worst ones like Oxford and the "Empirical approach" is a prime goal.
  19. Ember

    Ember Senior Member

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    That quotation is actually from the International Consensus Primer. It reads:
    In the following paragraph, entitled “Remove patients who satisfy the ICC from the broader category of CFS,” the ICP explains:
    Their position here seems consistent with the ICC statement, “The scope of this paper is limited to criteria of ME and their application.” The International Consensus Panel invites further research both to validate its ME definition and to identify other CFS subsets, removing them from the broad CFS/CF category. That work, however, remains beyond the scope of the International Consensus Panel.
  20. alex3619

    alex3619 Senior Member

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    I do think ME and CFS should be separate, but this does not directly imply that they should be encoded in separate sections. The same section with different subcodes might be appropriate too. These are all post viral diagnoses, and I am including PVFS, CFIDS etc in that.

    With respect to the ICC one of the issues they face is that they are not just dealing with science but the current bureaucratic positions on ME and CFS. So their statements might reflect political issues as well as scientific ones. CFS as a diagnosis is here to stay for a while yet, and to ignore that is to avoid the political and managerial implications. CFS codes and diagnoses wont go away easily.

    One reason to code CFS separately from ME is that official statistics can then track ME better. It wont be perfect due to both misdiagnosis and refusal to recognize or diagnose ME, but it will be a start.

    However the term ME/CFS generally is likely to persist. No matter if some places abandon it, other places will continue to use it or its variant CFS/ME. The best way to think of it is that ME/CFS is not a diagnosis, its a broad diagnostic category under which several diseases may exist.

    Until the CDC and NICE make changes to their policies and publications there will still be considerable confusion everywhere over the terms. There is no immediate solution for that, though eventually I think the term CFS will disappear.

    Bye, Alex

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