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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Does we really need "CFS"?

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by James_B, Aug 16, 2016.

  1. James_B

    James_B

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    Just asking you guys. If we have those three:

    Myalgic Encefalomyelitis
    Occupational burnout https://en.wikipedia.org/wiki/Occupational_burnout
    Depression (lack of interest in doing anything)

    Does we really need "CFS"?
    I think we should stop using that word as far as we can in any ways.

    When doctors see that word they really want to push you out of bed. Because of that word its a 50/50 on how you will be met when seeking help.

    Take care!
     
    osisposis likes this.
  2. Snowdrop

    Snowdrop Rebel without a biscuit

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    Welcome @James_B

    There is a poll asking about opinions as to the name here. http://forums.phoenixrising.me/inde...ersions-me-opathy-seid-or-ramsay.35625/page-2

    There may be other threads as well. I prefer ME but I think there is concern that others may not recognise the name which requires a lot of explanation among other things.

    Your chances of getting treated seriously depend sometimes on where you are but also I'd say the chances are somewhat less than 50%.
     
  3. u&iraok

    u&iraok Senior Member

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    I agree with Snowdrop. Too late to change it now. What's in a name? Yes, it's not a good name but a name is just a means of identification.

    Besides, prejudices follow the name no matter how many times you change it. Look at apartment buildings that continually change their names--you still know it for what it is. In the case of ME/CFS they aren't going to know it for what it is no matter what name it's called by. No sense adding confusion in there, or more confusion as the case may be.

    Anyway, you can impress them with the 'ME' part then hit them with the 'CFS' part and that way 'ME' will be connected with 'CFS'.
     
    Kinesis likes this.
  4. JaimeS

    JaimeS Senior Member

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    I feel there is a group of patients without PEM who meet Fukuda who are neither depressed nor 'burnt out'. At least, I can't convincingly make the argument that depression or burnout are 'really' what's wrong with them.

    When it comes to patients with PEM, I prefer ME, or if we've got to, ME/CFS. I consider 'CFS' to refer to Fukuda. But I'm aware that this is in no way official; it's more that I've noticed that, except for the BPSers, studies that use 'CFS' refer to Fukuda, and studies that use 'ME/CFS' or 'ME' refer to CCC or ICC criteria, which requires that the patient have PEM.

    Wow, I just read that paragraph. If I were reading that a year or two ago, I would be VERY confused. :confused:

    -J
     
  5. frog_in_the_fog

    frog_in_the_fog Test Subject

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    u&iraok likes this.
  6. taniaaust1

    taniaaust1 Senior Member

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    i'm all with you on this Jaime. Yes there is a large group who have something which isnt ME but still fits under the CFS label and may not be depression. Those ones shouldnt be called ME but they still need some name for their illness and not all are probably missed diagnoses either, there could be yet undiscovered illnesses falling under that "CFS" name.

    For that reason I cant see how we can get rid of the "CFS" label. but those who do have ME meeting that definition should be using the ME label.

    sighs, who knows when the day will come when these names will be properly broken apart from each other.
     
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  7. slysaint

    slysaint Senior Member

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    And yet in this lecture Dr Miller cites four key symptoms for diagnosis:
    1. PEM
    2. Cognitive problems (brainfog, dysphasia)
    3. Sleep disturbance (inability to sleep properly/unrefreshing sleep)
    4. Pain


    What bugs me the most is general referral to 'chronic fatigue' which is not the same as CFS and definitely not the same as ME. I was having a look at some of the Optimum Health clinic 'recovery' videos and a lot of the people being interviewed talk about their 'chronic fatigue'. I get the impression that some people prefer to use that term as
    they don't like to be associated with the ME label.
     
    JaimeS likes this.
  8. JaimeS

    JaimeS Senior Member

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    And in that vid, it's referred to as ME/CFS, so it's going by the CCC. All these consensus criteria are just that: illness criteria as defined by consensus, rather than by pathology. So it's basically whatever a particular group of experts says it is.

    I'm definitely not knocking the work of the CCC. They did an incredible job; and it's pretty standard to come up with a consensus criteria for illnesses for which pathology is not well-defined. Still, we've got to recognize that it's a decision that they came up with rather than biological fact. Since neither Fukuda nor CCC are validated...

    Ugh, I was about to be all sciencey and rational and say that since neither is validated they're equally on shaky ground but I just can't do it. Fukuda has, at least, been demonstrated to be pretty much nonsense: you can't say that all the symptoms but fatigue should have equal predictive ability to demonstrate illness. The same can't be said for CCC which, while it has yet to be validated, it also is yet to be invalidated.

    Definitely -- "chronic fatigue" is a symptom; "chronic fatigue syndrome" is Fukuda; "ME" or "ME/CFS" is CCC.

    Or so I wish we would all decide, so that we knew what we were talking about when we used the terms. :ill:

    -J
     
    slysaint likes this.
  9. u&iraok

    u&iraok Senior Member

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    You're right, this is what makes CFS a bad name--people hear the 'chronic fatigue' part and that's all.
     
    JaimeS and PennyIA like this.
  10. James_B

    James_B

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    This case don't need what we are. It needs what we have. People will learn, Everybody know ms, als, hiv ocd pms etc. And if they don't understand two letters, its ok because it leaves no room for own fabrication, judgement and gossip. :)
     
    frog_in_the_fog likes this.

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