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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 previously went to a specialist (a cardiologist) to try to get help for my orthostatic symptoms (problems being upright). He was focused on getting me moving: he wanted me to get me "out of the wheelchair". I think it would be easier to direct a doctor away from that approach with a name like "Systemic Exertion Intolerance Disease" than, say, "Chronic Fatigue Syndrome".
     
    Last edited: Feb 16, 2015
    snowathlete, ahimsa, rosie26 and 2 others like this.
  2. Nielk

    Nielk

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  3. Dolphin

    Dolphin Senior Member

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  4. Dolphin

    Dolphin Senior Member

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    Sean likes this.
  5. Dx Revision Watch

    Dx Revision Watch Owner of Dx Revision Watch

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    Further information on problems with eponyms in medical terminology


    http://en.wikipedia.org/wiki/List_of_eponymously_named_diseases

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

    http://www.the-rheumatologist.org/details/article/1066231/Medical_Societies_Ask_Whats_in_a_Name.html

    From: The Rheumatologist, May 2011
    Medical Societies Ask, What's in a Name?

    ICD-11, history, and confusion a catalyst for replacing eponyms with descriptions in disease nomenclature

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

    Paper on eponyms and clinical terminology systems:

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3613025/

    Case Report Medical Eponyms
    An Applied Clinical Informatics Opportunity


    Appl Clin Inform. 2012; 3(3): 349–355.
     
    SOC, Roy S and Dolphin like this.
  6. Tammy

    Tammy Senior Member

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    I like this one the best Alex! You made me laugh today.......:p
     
  7. Dolphin

    Dolphin Senior Member

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    I know plenty of people who need home help and care services, but often struggle to get assessed as needing them.

    I think they could have a better chance of being approved and getting the required amount of help with a name like “systemic exertion intolerance disease” than “chronic fatigue syndrome” (and maybe myalgic encephalomyelitis also).
     
  8. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    I find the arguments against eponyms weak and easy to counter. If there are two similar names for different diseases - change one. The proposals are to change names anyway.

    Does the political ideology of the person after whom a disease in named really matter? If there are really strong objections - again, use another name - of one kind or another, as a name change is being proposed anyway.

    Different names used in different countries - this also occurs with non-eponymous disease names, and some of these are extremely difficult to translate between languages. I think that the same eponymous names would actually be easier to keep across different countries.

    And illnesses referred to in the articles/papers are diseases which have been well-characterised following a lot of research. Ours hasn't. Ours does not have just one or two characteristic features, we don't yet know if there are subgroups with different causes/symptoms, etc.

    I think that an eponymous name is ideal for our current situation. Our illness/illnesses can always be renamed when we have better understanding of it/them.
     
    peggy-sue, Mij, WillowJ and 1 other person like this.
  9. picante

    picante Senior Member

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    I just checked TERMIUM, the Canadian government's bilingual terminology database. "Systemic Exertion Intolerance Disease" has not made it into the database yet. However, I did find exertional rhobdonyolysis.:
    http://www.btb.termiumplus.gc.ca/tp...1&index=ent&srchtxt=EXERTIONAL RHOBDONYOLYSIS

    I'm thinking we should hold out for that one. I really like it.
     
  10. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    picante likes this.
  11. lansbergen

    lansbergen Senior Member

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    I do not.

    Horses can get stiff and not able to move from eating to much protein. Ever seen a horse after it ate to much oats?
     
    Last edited: Feb 21, 2015
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  12. picante

    picante Senior Member

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    OK, OK, I admit -- I'm not a horse, either. Going back to @alex3619's suggestion:

    What about SNAFU Syndrome?
     
  13. Dolphin

    Dolphin Senior Member

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  14. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Thanks - done it! It's clear that one doesn't need to be a US citizen to do it, because it asks you to state your nationality near the end. I was also surprised to see that it included the apostrophe-s in the list of eponymous names, which I thought tends to be dropped in the US. Acheson's name was not in the list.
     
  15. Dolphin

    Dolphin Senior Member

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    MeSci likes this.
  16. Dolphin

    Dolphin Senior Member

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  17. Dolphin

    Dolphin Senior Member

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    Info on the name change issue plus links to 3 polls (I have highlighted these three polls before).

    Interesting to read neither (Paul) Cheney nor Daniel (Peterson) wants the illness named after them. It may make such a name a non-runner.

    Note: while the blogger is correct that the report said 94% had pain, she omits that only 73% had myalgia = muscle pain.
     
    MeSci likes this.
  18. charles shepherd

    charles shepherd Senior Member

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    MEA is running a website poll for UK residents on the IoM name change proposal

    Current voting after first five days below

    The figure of 60% for 'don't like SEID' has remained fairly steady since we opened the poll

    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 (12%, 48 Votes)

      • Yes - but for ME only (4%, 18 Votes)

      • Yes - for CFS and ME (14%, 57 Votes)

      • Not sure (8%, 34 Votes)

      • No opinion (1%, 5 Votes)

      • No - do not like SEID (61%, 253 Votes)


        Total Voters: 415
     
  19. Tom Kindlon

    Tom Kindlon Senior Member

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  20. Dolphin

    Dolphin Senior Member

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    Systemic Exertion Intolerance Disease gives permission not to exert, I think, and so somebody should be eligible for supports e.g. disability payments, aids, etc.

    Chronic Fatigue Syndrome can be spun in various ways and is more vulnerable to people saying one should just push through, I think.
     
    SOC, ahimsa, Kati and 4 others like this.

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