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California 2014: IACFS/ME Day Four: Translating Science into Clinical Care: 23 March 2014
It is Day Four and the final conference session from San Francisco. In this review we hear from Searcher about the neurosciences session, and PET and EEG analysis, then a study on cognitive functioning, followed by a debate on the revised 2014 IACFS/ME Primer, and then we wrap-up the...
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Discussion of the NEW International Consensus Criteria

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

  1. Tristen

    Tristen Senior Member

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    Northern Ca. USA
    "Phase III has a different sound to it. The toxins, in addition to inhibiting cell function, have invaded the central nervous system and injured deep brain structures, especially the hypothalamus, resulting in problems with virtually every hormone in the body".


    I've been experiencing this big time. Hormones gone wild. Seems most of them, like the HGH, and adrenal hormones remain sub clinically low. But my Testosterone has remained very high (double the top end of normal). My GP, being alarmed by the chronically high Testosterone, ordered some tests which included a LH (Luteinizing Hormone), which is also high indicating either a tumor or a malfunctioning negative feedback system involving the HPA. Cancer has been completely ruled out, and Brain MRI shows no structural abnormalities. Leaves a malfunctioning HPA. Cause is yet to be determined, it may be toxins, but I believe it's mostly due to CNS infection. I don't buy this idea of it just needing to be reset. Not for me anyhow. Sorry, veered way off topic here.
  2. Firestormm

    Firestormm Senior Member

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    5 August 2011: http://onlinelibrary.wiley.com/doi/1...20827/abstract

    Data mining: comparing the empiric CFS to the Canadian ME/CFS case definition

    Leonard A. Jason1,*,
    Beth Skendrovic1,
    Jacob Furst1,
    Abigail Brown1,
    Angela Weng2,
    Christine Bronikowski3

    Abstract:

    'This article contrasts two case definitions for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). We compared the empiric CFS case definition (Reeves et al., 2005) and the Canadian ME/CFS clinical case definition (Carruthers et al., 2003) with a sample of individuals with CFS versus those without.

    Data mining with decision trees was used to identify the best items to identify patients with CFS. Data mining is a statistical technique that was used to help determine which of the survey questions were most effective for accurately classifying cases. The empiric criteria identified about 79% of patients with CFS and the Canadian criteria identified 87% of patients.

    Items identified by the Canadian criteria had more construct validity. The implications of these findings are discussed.

    2011 Wiley Periodicals, Inc. J Clin Psychol 67:19, 2011.'


    Quite how this feeds into the 'new' International Criteria for ME I don't know. Will have to await the full paper I guess.

    Though from the fact that Lenny completed this by survey - my original concern that a patient can be 'diagnosed' with ME/CFS by criteria and a survey alone remains a valid one I think.

    If the CCC 'correctly identified' 87% of patients already diagnosed - that what does it tell us really?

    Who judges who is a genuine patient to begin with? And what would happen to those who suddenly don't met a criteria with no tests?

    Interesting.
  3. Nielk

    Nielk

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    You pose valid questions Firestone. I also saw this publication. How does this relate to the ICC? I really don/t know.
    Your concern about getting a diagnosis purely on a patient's meeting criteria is also valid.
    I think the problem is that Science has not come up as of yet (hopefully soon) with a real biomarker that can be easily tested to reveal a definite diagnosis of ME.
  4. Firestormm

    Firestormm Senior Member

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    It only relates to the ICCME because at the time of its' release Jason was working on something else - and I think this is it. So, I was wondering how it might affect the ICCME in terms of will it be a challenge to it for example? Or an alternative - i.e. if you don't 'meet' the ICC you might 'meet' the CCC.

    More importantly though I think, is what difference does this make? I guess it could be used to persuade the authorities that the CCC is better than Reeves for example - but will the authorities listen if the ICCME is also being touted as more appropriate?

    Confusing, huh?

    Personally, I think Jason messing with these criteria - and even the ME criteria - are useless without biomarkers even if they are used solely for research purposes.

    Say for example, if the CCC had not been used for the discovery of the 'link' to 'XMRV'. Would there not have been a 'link' or would the 'link' have been weaker? What if the ICCME had been used. A higher percentage of 'hits' or a lower one?

    When it comes to diagnosis - here in the UK anyway - what physician (GP) actually follows a criteria anyway? And how would any new criteria be applied to patients currently diagnosed with 'CFS' or 'CFS/ME'?

    So many questions LOL.
  5. Nielk

    Nielk

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    You are right. There are more questions than answers at this point.
    I am hoping that the conference in September in Ottawa will clear up some of them.
  6. Andrew

    Andrew Senior Member

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    Is there something we could be doing to encourage NHHS to adopt this?
  7. Enid

    Enid Senior Member

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    ahimsa and fla like this.
  8. Bob

    Bob

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    Last edited: Mar 6, 2014
    Gemini, Dolphin, Valentijn and 7 others like this.
  9. SOC

    SOC Moderator and Senior Member

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    Gemini, Valentijn, Sushi and 2 others like this.

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