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Terminology- SEID or PRAG, please vote!

Discussion in 'General ME/CFS Discussion' started by Dr.Patient, Mar 1, 2015.

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SEID or PRAG

  1. SEID

    70.6%
  2. PRAG

    29.4%
  1. Dr.Patient

    Dr.Patient There is no kinship like the one we share!

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    With the recent term SEID, and the discussion going on, I'd like to see what people here think ...

    According to the extremely well put argument by @SOC on another thread, we have to identify the smallest set of features that uniquely defines our condition, that would capture almost all of our patients at all stages of our illness.

    That term is prolonged-recovery asthenia gravis. PRAG.

    PEM is the classic feature. More important, debilitating weakness is the other one that is present in all of us.

    Post exertional malaise, or post exertional Neuro immune exhaustion, means " I get badly exhausted after exertion." Try this on a normal person. Will he say that he doesn't have this?

    The key here is the recovery that happens after exhaustion in us is prolonged, for days, months... Will a normal person say he has this?

    Asthenia is the right term to describe our lack of strength. Wonder why that never came into being initially, and how the hell did "fatigue" take it's place.

    The subsets of patients that will immediately raise objection can be classed with a Neuro, viral, orthostatic etc..qualifier. Can they deny they don't have asthenia or prolonged recovery? If they say they have energy to live as before, and their exhaustion after exertion lasts only a day, perhaps, they have another illness, and not PRAG.

    Please vote, thank you all in advance!
     
    ahmo likes this.
  2. Kina

    Kina

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    What if we don't like either? You really should have a choice for that too.

    Asthenia = Lack of energy and strength
    Gravis = tending to be more virulent than average

    To me that translates to more tired than usual. And it's too close to Neurasthenia which is not somewhere we would like to go.
     
  3. Tammy

    Tammy Senior Member

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    I actually like both asthenia gravis...........but don't like the prolonged recovery part.
     
  4. Dr.Patient

    Dr.Patient There is no kinship like the one we share!

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    If somebody doesn't like either, I don't want their opinion then, it's of no use. Neither will such patients come up with another name--- even if they did, it would be a whole another thread.
     
  5. Kina

    Kina

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    Well then, the poll won't mean much.
     
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  6. Dr.Patient

    Dr.Patient There is no kinship like the one we share!

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    Neurasthenia and myasthenia are where we don't want to go. Asthenia should be fine by itself, it is a stand alone term.
     
  7. Dr.Patient

    Dr.Patient There is no kinship like the one we share!

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    That's okay. The goal here is to sharpen what's already there. "Neither this nor that", or "please suggest a name for our illness" are not the goals of this thread.
     
  8. Kina

    Kina

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    Then what is the point. Your suggested name does not clearly define our illness, neither does SEID.
     
  9. Dr.Patient

    Dr.Patient There is no kinship like the one we share!

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    That is your opinion. I'm just trying to gather other opinions as well.
     
  10. Kina

    Kina

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    Then why aren't you allowing the opinion of 'don't like either', if you are gathering opinions? What are you hoping to learn from such a skewed poll. As far as I can tell, most do not like SEID, and might choose your option because it's the only other one available, even though they wouldn't want it for a name to replace ME.
     
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  11. snowathlete

    snowathlete

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    I agree. This says, "really tired and down in the dumps." Which isn't an improvement at all, in my opinion.
     
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  12. Dr.Patient

    Dr.Patient There is no kinship like the one we share!

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    This is just to see if somebody likes PRAG better than SEID, that's all.
     
  13. Dr.Patient

    Dr.Patient There is no kinship like the one we share!

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    That's exactly how I feel with this illness, you described it accurately! (I didn't think cfs or me or seid described my illness well).
     
  14. SOC

    SOC Senior Member

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    That sounds more like depression. Not saying that's what you have, just that such a description doesn't distinguish our illness from MDD or related conditions.
     
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  15. Dr.Patient

    Dr.Patient There is no kinship like the one we share!

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    Ok, then I take it back. It's probably a cultural thing as well. In many languages in the world, there is a clear, different word for "tired" and "no strength". Apparently English and American are not some of them. Very unfortunate!
     
  16. snowathlete

    snowathlete

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    OK. I don't share that view, personally. I don't feel down in the dumps and really tired is too vague in my opinion.
    Further, given the false view that some still promote about this disease, I think as a community we need to be a bit smarter about it than to pick names and descriptions that may be twisted by these people to promote their false viewpoint. People don't always say exactly what they think because it may not work in their favour.

    Edit: just want to make sure my reply isn't taken the wrong way; I'm just trying to get across that accuracy isn't enough. I think we need to keep politics in mind and how things might get twisted because there are plenty of people trying to keep perceptions about this illness in the stone age.
     
    Last edited: Mar 1, 2015
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  17. Mij

    Mij Senior Member

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    I voted for PRAG only because I prefer it over SEID.

    As long as PEM is included in the diagnostic criteria then that's what is important to me.
     
  18. Dr.Patient

    Dr.Patient There is no kinship like the one we share!

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    Come to think of it..what is the English word for "no strength"...is there one? Perhaps that's how "fatigue" ended up in the first place...
     
    oceiv likes this.
  19. Gingergrrl

    Gingergrrl Senior Member

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    For me it is the complete inability of my muscles or my body to create energy on demand. It feels like mitochondrial damage to the core of my being. The slightest activity can make me short of breath. But I almost never feel "tired" or "sleepy." Hope this helps. I don't actually care if we call it SEID or PRAG or ME at this point, all I want is federal government funding to help the true biomedical researchers like OMF, Dr. Lipkin, etc, to figure it out.
     
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  20. Mij

    Mij Senior Member

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    @Gingergrrl I'm wondering in your particular situation if you have "mitochondrial damage" since you haven't been ill for very long and have not been able to exercise since becoming ill. Please correct me if I'm wrong. I got way worse (PEM) when I started aerobic exercise when I feeling improved years ago.

    I thought "damage" to the mito was the result of exercise and not overdoing in general? I"m asking a general question to everyone.
     

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