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What do you think of the IOM's new name for ME/CFS? VOTE!

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Simon, Feb 10, 2015.

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What do you think of the IOM's new name for ME/CFS: SEID

Poll closed Mar 12, 2015.
  1. Better than the status quo, but I wouldn't endorse it myself

    27 vote(s)
    16.9%
  2. Better than the status quo, patients should get behind this

    32 vote(s)
    20.0%
  3. No better than the status quo (most reseachers/clincians use CFS, occasionally ME/CFS)

    19 vote(s)
    11.9%
  4. A waste of time

    58 vote(s)
    36.3%
  5. Better than the status quo, but I'm unsure at this time whether I would endorse it myself.

    24 vote(s)
    15.0%
  1. Dolphin

    Dolphin Senior Member

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    (I should probably have said this before now)
    There are two aspects to a name:
    (i) It is a definite part of the condition;
    (ii) You want it so that people with other conditions wouldn't satisfy it.

    I think the latter is a problem with names like "Neuro-immune disease". Ours is not the only neuro-immune condition.
     
    Snow Leopard, Valentijn, Sean and 3 others like this.
  2. amaru7

    amaru7 Senior Member

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    Honestly I couldn't care less what they call it, even if they changed it to chronic lazy ass syndrome, as long as they offer a cure for it.

    Cfs me is just fine, most don't even know it exists or what it is and even the so called specialists, while trying their best, are not understanding how to Really cure it despite their claims on how successful they are with patients
     
  3. Dolphin

    Dolphin Senior Member

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    From a yahoogroup post (not mine) in reply to a circular about a petition to reject SEID:

     
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  4. Dx Revision Watch

    Dx Revision Watch Owner of Dx Revision Watch

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    Because if you want your medical term of choice (whatever that term might be) entered as the Title term within WHO's forthcoming ICD-11 and in the country specific "clinical modifications" that will be developed from the ICD-11 (which are obliged to adapt the core version to conform to WHO taxonomy conventions for ICD), then is it sensible to consider WHO and ICD Revision policies, since it is WHO/ICD Revision that approves which terms are entered into the classification as coded for ICD Title terms.

    This applies also to the SNOMED CT clinical terminology system that is in use in many countries. ICD-11 will be integrable with SNOMED CT.

    I do not consider it advantageous to lobby for the adoption of a new eponym based medical term that WHO/ICD Revision is likely to reject as the coded for term.

    Also, any new term would need to be acceptable to and approved by NCHS/CDC if it is to be inserted into the forthcoming U.S. ICD-10-CM* as a billable code, either with a unique code created for it, or as an inclusion term to an existing coded term.

    NCHS is obliged to modify the ICD-10-CM code set in accordance with WHO ICD taxonomy conventions.


    Note also: ICD-11 has the capacity in its electronic version (but not its print versions) for lengthy lists of terms under "Synonyms."

    So for some diseases, there will be the Title term (or concept term) that is coded for; then sometimes an Inclusion term is specified which is assigned to the same code. Then there may be a list of other terms under Synonyms which are not coded for. Then there may be a list of Index terms.

    "Synonyms are alternative names for the same underlying concept, including common terms and medical jargon. Synonyms are not intended to be used interchangeably with the concept title, but help users to locate the proper code within the ICD. The concept title will have precedence over synonyms for international reporting." Source: ICD-11 Glossary of Terms

    But the U.S. ICD-10-CM Tabular List tends to be restricted to the Title term (which is assigned the code) and one or more inclusion terms, which are listed beneath the coded term and assigned to the same code. Within ICD-10-CM, there are no lists of uncoded for Synonym terms within the Tabular List.

    A Synonym term which was not specified as an inclusion term in the Tabular List would be placed (if approved for addition by NCHS) in the Index.

    *The U.S. specific, ICD-10-CM, is scheduled for implementation on October 1, 2015. The ICD-10-CM code set is currently subject to partial code freeze. Partial code freeze scheduled to lift 12 months after ICD-10-CM implementation, on October 1, 2016, when regular update cycle will resume. http://www.cdc.gov/nchs/icd/icd9cm_maintenance.htm
     
    Last edited: Mar 23, 2015
    SOC likes this.
  5. Dx Revision Watch

    Dx Revision Watch Owner of Dx Revision Watch

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    Another reference to WHO's preference for avoiding eponyms (extract from ICD personnel discussions, via the ICD-11 Proposal Mechanism):

    http://apps.who.int/classifications...lGroupId=a1c3a267-1180-4e95-9fc2-b9589c4ac495

    "...Also consider changing the name [Charles Bonnet syndrome] to 'Visual release hallucinations' with 'Charles Bonnet syndrome' as a Synonym, given WHO's preference to avoid proper names. However, the Ophthalmology TAG will have a better idea of the frequency of use of these alternate terms in the field." On behalf of Mental Health TAG
     
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  6. Dx Revision Watch

    Dx Revision Watch Owner of Dx Revision Watch

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    See post #284
     
  7. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Yup - I know the WHO's position. I was stating mine. :D
     
    GracieJ likes this.
  8. Dx Revision Watch

    Dx Revision Watch Owner of Dx Revision Watch

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    But it won't be your position that decides on billable codes.
     
  9. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    I don't even know what 'billable code' means.

    I think we all know about our own powerlessness, but we can still express opinions. And sometimes when individuals get together they can overturn bureaucratic policies.

    Not saying it's likely or will happen, just that bureaucratic organisations are set up and run by people, and can be changed by people. They are not an immutable force of nature.

    I've been fighting large organisations for decades - and occasionally won! :D
     
    Countrygirl likes this.
  10. charles shepherd

    charles shepherd Senior Member

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    Current votes- almost 650 so far - on the MEA website survey on SEID:

    Vote via the home page on the MEA website: www.meassociaion.org.uk

    The MEA Quick Survey

    • Should CFS and/or ME be renamed Systemic Exertion Intolerance Disease (SEID) as recommended in the U.S. Institute of Medicine Report?
      • Yes - but for CFS only (9%, 60 Votes)

      • Yes - but for ME only (4%, 24 Votes)

      • Yes - for CFS and ME (14%, 88 Votes)

      • Not sure (9%, 59 Votes)

      • No opinion (2%, 10 Votes)

      • No - do not like SEID (62%, 401 Votes)


        Total Voters: 642
     
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  11. Gemini

    Gemini Senior Member

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    Used the following to access the website (without the .UK):

    www.meassociation.org
     
  12. charles shepherd

    charles shepherd Senior Member

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    Thanks for correcting my typo - interesting to note that the vote for 'No - I do not like SEID' has remained steady at around 60% right from the very start of this poll
     
  13. Snow Leopard

    Snow Leopard Hibernating

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    I know @Dolphin and a few others are keen on SEID, but the above shows how unpopular it really is.
     
  14. Dolphin

    Dolphin Senior Member

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    Yes I think the most likely outcome if it is not accepted is "chronic fatigue syndrome" will be the main name the medical profession uses for a decade or more into the future. We have seen all the rubbish definitions that have been associated with "chronic fatigue syndrome", how "chronic fatigue" and "chronic fatigue syndrome" has been blended together by some, etc. so I am not at all happy to be stuck with "chronic fatigue syndrome".
     
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  15. Butydoc

    Butydoc President

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    Hi Dolphin,

    I tend to agree with your assessment. As clinical physician, i'm a bit baffled over all this angst over the proposed name change. Now when a doctor sees a patient, he/she will have a name associated with a disease that is not a syndrome and a relatively easy diagnostic criteria. Most physician have no clue what CFS represents. When I talk to other doctors and ask them what is CFS, they generally claim that it is a waste basket term that covers people who have some form of psychiatric illness. This debate reminds me of the republican party. You have the Tea Party faction and the moderate republicans who both want to beat the democrats. Both were unwilling to compromise and hence lost the election in 2012. I'm not sure that the patient population sees this controversy the same as physician who are called upon to treat it. The enemy of good is better.

    Best,
    Gary
     
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  16. Aurator

    Aurator Senior Member

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    I suspect the angst, such as it is, is a rational response to the perception a good many patients undoubtedly have of a state of affairs you yourself have just vouched for: viz. that doctors generally claim that "CFS...is a waste basket term that covers people who have some form of psychiatric illness." It's perhaps a little too optimistic to expect that a name change to SEID and clearer diagnostic criteria will suddenly cause doctors on the one hand to view the disease entity significantly differently, and patients on the other to have more positive expectations of the way doctors will regard them or treat them.
     
    MeSci, oceiv and Butydoc like this.
  17. Kati

    Kati Patient in training

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    However SEID means we are progressing from a horrible name (CFS) to something not perfect but better, hopefully very temporary as science advances towards better understanding of the disease.
     
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  18. Butydoc

    Butydoc President

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    Hi Aurator,

    I'm afraid that i am one of those doctors who before I came down with ME/SEID considered people who came into my office with a diagnosis of CFS as psychiatrically impaired. My own younger brother came down with ME/SAID when he was twenty and I was a resident in surgery. Unfortunately because my brother was histrionic and my professors didn't believe ME/SEID existed, I didn't think he had a serious disease. I wish a name and a diagnostic criteria that now is being considered existed.

    I suspect i'm not the lone physician who was ignorant about ME/SAID. At that time, the disease was called CFS and/or the Yuppie flu. I can't imagine that the name change will do anything other than help doctors take this disease seriously and actually spend some time learning about it. Most physician that I associate with research diseases that they see in their practices. I'm afraid the label "CSF" has hurt that process. Now I can be completely off in my assessment, but at least this one opinion from a clinical physician.

    Best,
    Gary
     
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  19. Kati

    Kati Patient in training

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    From my many experiences as a patient, I can attest to what @Butydoc is saying. One emergency dr basically said aloud 'chronic fatigue syndrome', scratched his head and said must not be that bad!
     
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  20. Dolphin

    Dolphin Senior Member

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    I think doctors are a group who are used to having to push through fatigue either from the long hours required to pass medical school and/or the long hours involved in working (perhaps particularly in the early years). So they can wonder why people don't simply put up with fatigue and push through it. So that's one reason why I think "Chronic Fatigue Syndrome" is a bad name.
     

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