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New Name for ME/CFS

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

  1. Andrew

    Andrew Senior Member

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    Read more here: http://well.blogs.nytimes.com/2015/02/10/chronic-fatigue-syndrome-gets-a-new-name/?_r=0
     
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  2. Revel

    Revel Senior Member

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    You beat me to it @Andrew!

    Is "Systemic Exertion Intolerance Disease" really any better than the moniker we currently endure?

    One definition of "intolerance" is the unwillingness to accept views, beliefs or behaviour that differ from one's own. So 'exertion intolerance' could still potentially be perceived as an 'unwillingness to accept' that exercise (exertion) is beneficial . . . and we're right back to CFS patients needing to get over their fear of exercise in order to improve their situation o_O.

    I'm afraid it doesn't get my vote, but since when did the opinion of a person with CFS matter?
     
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  3. LivingwithFibro

    LivingwithFibro Lily

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  4. Soundthealarm21

    Soundthealarm21 Senior Member

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    But you have to look at other definitions for the same word as well:

    incapacity or indisposition to bear or endure

    I agree this name doesn't necessarily sit well with me either, but I feel that the definition is a real start and that's more important than the name. The name can always be changed later as more research emerges as it appears the IOM is pushing the NIH to get on top of it. Personally, that's the best part of it to me. The organization, hired by the NIH, is telling the NIH that it's a serious illness, funding is needed for research, and the definition should be elastic (changed when presented with new evidence).
     
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  5. barbc56

    barbc56 Senior Member

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    I'm torn about this new name. Somehow it doesn't seem completely accurate but I can't put my finger on why. This is my first impression, so I may change my mind at a later time.

    Barb
     
  6. barbc56

    barbc56 Senior Member

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    My personal opinion is that parasites might be a triggering factor but there are also other triggering factors.

    I just saw your emoticon. It looks like you are being facetious?:D

    Barb
     
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  7. Matthew Jones

    Matthew Jones Senior Member

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    Meh, it's basically as accurate as CFS. I probably wont bother switching. It could have been a lot worse though, I'm just glad they didn't make it worse. Any name that's a symptom is not going to sound very serious. It's not a very good name as it implies that symptoms go away without exercise, which they don't. Exercise just makes it even worse. The cognitive disfunction I experience renders me disabled even if I stay strictly within my 'energy envelope'. At least its getting some press with a focus on physical symptoms.
     
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  8. LivingwithFibro

    LivingwithFibro Lily

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    No... :) I'm just tired of suffering and sometimes I can't but laugh at my desperation. Bear in mind if I am here I am suffering and have CFS.
     
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  9. Revel

    Revel Senior Member

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    @Soundthealarm21, I am aware that there are other definitions of the word "intolerance".

    I am from the UK which, as you may already be aware, has a poor track record with regard to CFS, both in perception and treatment. This new name might go down well in the US and elsewhere, but I have concerns about how it would be received and interpreted in my country.
     
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  10. justy

    justy Donate Advocate Demonstrate

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    Exertion intolerance sounds like a New Age fad like wheat intolerance and makes it sound like if only we didn't exert we would be fine. I have a neuroimmune illness, not a sensitivity to doing things
     
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  11. Soundthealarm21

    Soundthealarm21 Senior Member

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    I hope you didn't think I was trivializing your reservations of the name! Just opening up dialogue is all!
     
  12. Revel

    Revel Senior Member

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  13. Mij

    Mij Senior Member

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    rapid CNS dysfunction/exhaustion upon exertion is not an intolerance for sure.
     
  14. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    We need to remember the forward slash is not permitted in medicine as it's dual coding.

    CFS/ME, and ME/CFS never existed as a diagnosed condition. Under the headlines of CFS/ME, one always then found CFS and CF. CFS/ME was a just window dressing of CFS.

    The dual names existed in the minds of propaganda experts (British) who kept telling people they had CFS/ME, and very late in the day, some Americans started saying ME/CFS, believing this increased the legitimacy of the illness.

    CFS ME exists, but not the awful CFS/ME, the UK Department of Health invented, literally, to deny ME existed due to pressures by certain people we all know and love.
     
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  15. Andrew

    Andrew Senior Member

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    I have mixed feeling. It just doesn't have a medical ring to it. But I also see some advantages. Like the inclusion of "disease" in the name. And as far as descriptive names go, it's better than chronic fatigue syndrome. Also, I think that overall it is less dismissive than chronic fatigue syndrome. And I also agree with those who worry that "myalgic encephalomyelitis" forces it on neurologists, and they would have refused to accept it. So as of now I see it as an improvement.
     
  16. Jenny

    Jenny Senior Member

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    Surely it would be better to have a name that didn't just describe one of the symptoms, but reflected the physiological abnormality (ie immune dysfunction).
     
  17. alex3619

    alex3619 Senior Member

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    My prediction, which I have blogged on, is that any new name without clear diagnostic tests will be tainted within years, just as even ME is. Its a temporary name at best, and might not even get adopted.
     
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  18. Matthew Jones

    Matthew Jones Senior Member

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    There's lots of positive responses on reddit, maybe I'm being too cynical. It is great they are calling for urgent funding and talk about the seriousness of the disease.
    http://www.reddit.com/r/cfs/comments/2vfnxt/om_gives_chronic_fatigue_syndrome_a_new_name_and/

    Overall I'm pleased. We're getting tons of (good) press!

    http://america.aljazeera.com/articl...ls-for-renaming-chronic-fatigue-syndrome.html

    http://www.cbsnews.com/news/rebranding-chronic-fatigue-syndrome/

    http://www.washingtonpost.com/news/...ot-a-psychological-illness-expert-panel-says/ (can you believe it, at last!)

    http://www.google.com/search?q=cfs new name&client=safari&rls=en&tbm=nws&tbo=u&oq=&gs_l=

    I'm currently undecided as to whether to adopt the new name. I do think its a small improvement.
     
    Last edited: Feb 10, 2015
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  19. L'engle

    L'engle moogle

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    The word 'systemic' is also used in the full name for lupus, SLE systemic lupus erythematosus. I would imagine that the word systemic was chosen as a way to start putting our illness into the autoimmune category. An important consideration is the way that individual words are coded in terms of research funding and other support. 'Systemic' I would think carries a higher weight than words like 'fatigue' and 'syndrome'. It is not just the colloquial meanings of the words that are important here, it is how they fit into the over medical context vocabulary. 'Intolerance' bridges into allergies and areas.
     
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  20. A.B.

    A.B. Senior Member

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    In the end it all boils down to research funding. A larger repeat CPET study could validate or invalidate the SEID definition pretty quickly. This might be a good use of research funds.
     
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