The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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WHO Issues "Best Practices" For Naming Diseases

Discussion in 'General ME/CFS News' started by Gemini, May 10, 2015.

  1. Gemini

    Gemini Senior Member

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    "A disease name should consist of a generic descriptive term based on symptoms..., who is afflicted... seasonality,,,, and severity.... "

    "Disease names, the WHO said, may not include geographic locations, people's names, species of animal or food, references to culture, population, industry or occupation, and 'terms that incite undue fear'".

    "The news was welcomed by officials who had seen the damage that a disease name can cause."

    Announced by Dr. Keiji Fukuda WHO assistant director general for health security (NY Times 5/9/2015)

    http://www.nytimes.com/2015/05/09/h...litical-correctness-in-new-disease-names.html
     
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  2. Denise

    Denise Senior Member

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    I have not read the New York Times piece (yet) but I did see the WHO press release on this yesterday (http://www.who.int/mediacentre/news/notes/2015/naming-new-diseases/en/).

    In part it says:
    "The best practices apply to new infections, syndromes, and diseases that have never been recognized or reported before in humans, that have potential public health impact, and for which there is no disease name in common usage. They do not apply to disease names that are already established."
     
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  3. worldbackwards

    worldbackwards A unique snowflake

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    Kind of screws up the pitch for SEID, doesn't it?
     
  4. Snow Leopard

    Snow Leopard Hibernating

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  5. Valentijn

    Valentijn Senior Member

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    How so? SEID conforms to using the unique descriptive symptom in naming it, and the systemic nature. I don't think WHO is suggesting that every descriptive term should be used - every disease would be a full paragraph if they tried that :p
     
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  6. Valentijn

    Valentijn Senior Member

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    I doubt it ... SEID is purely an American term and issue at this point, whereas WHO is a very international organization.

    More likely is that the IOM committee knew about the upcoming requirements, or at least the preferred conventions, and chose to follow them.
     
    Last edited: May 10, 2015
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  7. worldbackwards

    worldbackwards A unique snowflake

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    Oh, just me not actually bothering to read what I'd quoted :)
     
  8. Denise

    Denise Senior Member

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    These best practices announced by WHO refer to the naming of newly identified human infections, diseases, syndromes, not diseases already named.

    From the New York Times piece:
    "It emphasized that the recommendations “do not apply to disease names that are already established...”"


    Worth noting - ICD will still determine the final technical names of new diseases.
     
  9. Valentijn

    Valentijn Senior Member

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    You're right. "Chronic Fatigue Syndrome" is already established in the US, so I guess people could argue in favor of keeping that if they really wanted to.
     
  10. Denise

    Denise Senior Member

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    I am not sure this press release applies to us as the disease has already been described.
    I want the term "chronic fatigue syndrome" to be abolished.
     
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  11. Gemini

    Gemini Senior Member

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    Does this mean "Myalgic Encephalomyelitis" will endure under its WHO 1969 classification?

    Anyone know?
     
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  12. caledonia

    caledonia

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    Fukuda (whose name is associated with the 1994 chronic fatigue syndrome case definition) - how ironic!

    Since ME and CFS are both established names, they wouldn't fall under this rule. It seems like SEID or a future new name based on research would have to follow the rule, but it's a little unclear as it's still describing an old disease with established names.
     
  13. wastwater

    wastwater Senior Member

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    Call it ED Energy deficiency maybe or Energy deficient state (EDS)
     
    Last edited: May 11, 2015
  14. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    ED is already taken.
     
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  15. SOC

    SOC

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    As is EDS -- Ehlers-Danlos Syndrome.

    They're gonna run out of acronyms if this keeps up. ;)
     
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  16. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    You know what bothers me about this?

    The original name for HIV/AIDS fits the guidelines.

    CFS fits the guidelines.

    There is concern about stigmatizing places, trades, occupations, and concern about scaring patients, but no concern about stigmatizing patients.
     
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  17. wastwater

    wastwater Senior Member

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    Aquired Energy deficient state AEDS maybe. Inherited energy deficient state IEDS that's nearly SEID
     
    Last edited: May 11, 2015
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  18. wastwater

    wastwater Senior Member

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    Maybe we need an ultra simple explanatory name like,"Doing things makes me worse"
     
  19. wastwater

    wastwater Senior Member

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    CED chronically energy deficient
     
  20. *GG*

    *GG* Senior Member

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    Like this one, sounds like AIDS.

    GG
     

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