1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.
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Celebrating the ICC!!!

Discussion in 'General ME/CFS News' started by Nielk, Jul 21, 2011.

  1. Enid

    Enid Senior Member

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    Hooooray ! Thanks Sasha.

    Just read and it's stunning news - going to publication - no excuse for the UK establishment now. Might attach to myself if unlucky enough to find myself in A & E again and ward off the "all in your mind" school deep within medicine here.
     
  2. Bob

    Bob

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  3. alex3619

    alex3619 Senior Member

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    Hi, here is another important point:

    "The six-month waiting period before diagnosis is no longer required."

    Bye, Alex
     
  4. Tulip

    Tulip Guest

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    Yes this is fantastic news!
     
  5. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    Yup and as we know, for many, not resting/getting support/help during htose curical initial months is what seems ot make things worse, ie, pushing yourself, not realizing hwo serious it is etc.


    Also this is more HARD ammunition to charge the psychs (and others) with quackery, for failing to adhere to facts of the disease, and the best interests of the patients.
    Taste the finger of justice, Weasels!
    :p
     
  6. leela

    leela Slow But Hopeful

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    This is fantastic!
    Now I can hand something to peripheral docs (like eye doctor, dentist, chiro, what have you) that
    dismisses what that person might *think* they know about "chronic fatigue" and clearly
    spells out what the illness is. I have shown docs the relevant portion of the CCC but the whole
    ME/CFS doublespeak thing I think causes some to think I am "dramatizing" when I call it ME. Not any more!
     
  7. Nielk

    Nielk

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    I'm with you Leela. I can't wait to show it to my non believing internist and a whole line of people.
     
  8. mellster

    mellster Marco

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    Great! Finally criteria that make sense, was surprised to see the wideness of included symptoms such as twitching, IBS, chest wall pain, neuro-sensitivity to stimulants and defining PEM as the hallmark symptom. Those criteria make it sound much more like a neurological disorder caused by viral agents now.
     
  9. caledonia

    caledonia

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    PEM is now PENE (post exertional neuroimmune exhaustion). Pronounced pen'-e. Rhymes with "henna"?
     
  10. mellster

    mellster Marco

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    Right, and I should have said neuro-immune disorder instead or neurological disorder to be correct. Anyhow, good to have clarity!
     
  11. leela

    leela Slow But Hopeful

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    What a welcome thing to be free of the (terms) "fatigue" and "malaise"!!
     
  12. madietodd

    madietodd Senior Member

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    Thanks to all who posted the new criteria. I can finally hand people a checklist and say "I've got ME, and this is what mine looks like." The personal rammifications are huge, and politically we've finally got a club, instead of a wet noodle.
     
  13. leela

    leela Slow But Hopeful

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    Thanks for that, still laughing!
     
  14. ixchelkali

    ixchelkali Senior Member

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    I agree completely. This is huge! We should be sending up balloons.:balloons::balloons::balloons::balloons:

    Getting this accepted internationally would improve the quality of research tremendously. No more garbage in, garbage out. I think we should start mobilizing to support this.
     
  15. xchocoholic

    xchocoholic Senior Member

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    As far as I can tell, this new document really clarifies ME from CFS. :D

    I'm glad thet will no longer require 6 months of fatigue before diagnosing ME also. So much damage can occur while we push ourselves and while whatever it is behind ME is allowed to go unchecked.

    And IMHO, the change from PEM to a more accurate description of what is actually happening may help us uncover the root cause of this symptom. I hope they do the same with orthostatic intolerance.

    It's funny, all these years I thought most doctors knew all of this about CFS/ME but after spending time on the web, I see that they didn't. Hopefully, this will clarify ME from CFS ... tc ... x
     
  16. Wonko

    Wonko Senior Member

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    agreed........
     
  17. shannah

    shannah Senior Member

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    Sounds like there's more yet to come:

    Page 14
    "It is important to note that the current emphasis must primarily remain a clinical assessment,
    with selection of research subjects coming later. For this reason the panel is developing
    Physicians Guidelines, which will include diagnostic protocol based on the International
    Consensus Criteria and treatment guidelines that reflect current knowledge."



    Note the comment on the same page:

    "Individuals meeting the International Consensus Criteria have myalgic encephalomyelitis and should be
    removed from the Reeves empirical criteria and the National Institute for Clinical Excellence
    (NICE) criteria for chronic fatigue syndrome."
     
  18. waiting

    waiting Senior Member

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    And to caledonia; "PEM is now PENE (post exertional neuroimmune exhaustion). Pronounced pen'-e. Rhymes with "henna"?

    urbantravels and caledonia, I think PENE (pen'-e) would be pronounced "penn-ee" (so, sounds like "penny" but with emphasis on both syllables).
     
  19. Ember

    Ember Senior Member

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    Nice sentiment, Neilk. I was thinking of roses!
     
  20. Nielk

    Nielk

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    Great blog about ICC

    10 Things I love about the International Consensus Criteria for Myalgic Encephalomyelitis4Walls and.
    www.4wallsandaview.com
     

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