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JIM: Van der Meer and Lloyd Critique International Consensus Criteria ME

Discussion in 'General ME/CFS News' started by Firestormm, Jan 23, 2012.

  1. Firestormm

    Firestormm Guest

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    I will be honest Ember and say that I was also (still am) confused about this one. When the criteria were first published and following all the discourse it prompted, I am still left wondering if some people think it is intended to replace CFS with ME entirely, or only those who meet the criteria leaving X number of people with CFS. I had thought that ICCME would simply tighten up on CCC ME/CFS, but if it 'creates' a distinct disease entity then what of the CCC for ME/CFS I wonder?

    Broderick also - in his letter - was not exactly confident with the name Myalgic Encephalomyelitis if I recall correctly. It would seem that had they been another option, another name, that perhaps better reflected the condition as he and the others view it and which was similarly recognised by WHO; it might have been chosen instead. It appears almost the case that CFS as a name is crap and ME as a name is a bit better.

    I think the nomenclature will remain a key weakness in any continuing debate and critique. Until and unless research is properly geared to examining patients and confirms the presence of inflammation but even then the terms themselves are not wholly exclusive. Maybe the problem lies with the WHO? Radical perhaps but what if WHO put CFS alongside or linked to ME?

    I will read both letters in full myself as soon as I can. I have though read your exchanges. And 'liked' your comments too. Thanks.
     
  2. Ember

    Ember Senior Member

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    The difference is that you aren't the CEO of the CAA and spokesperson for Research1st, Firestormm. You're allowed not to have read the letters yet.

    Why hasn't Kim McCleary contacted the authors of the ICC if she needs clarification? I peppered Dr. Carruthers with my questions both before and after his presentation at the MEFM Society of BC's AGM. And I'm not paid to understand and communicate these things.
    '
    By the way, if you're referring in your post to the names given our disease, you're right in assuming that the terms are not wholly exclusive as they're being used. Dr. Carruthers called ME a form of CFS (and he was happy for me to quote him}.
     
  3. Firestormm

    Firestormm Guest

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    Thanks. You are quite right. I don't think - as I have said before - many (anyone?) in positions of 'authority' have really given much time to analysing and understanding the ICCME or critiquing it - or to accepting that it is 'real'.

    Hopefully, this might prompt them to do so. Now the Norwegian's appear to have adopted these criteria in preference to anything else - and presumably the name too - surely others will 'wake up and smell the coffee'? Not that I can understand the Norwegian decision though...
     
  4. Dolphin

    Dolphin Senior Member

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    In the main ICD-10 from the early 90s, CFS is linked to G93;3. The more recent debate was about the US version of ICD-10 - they are a bit behind!
     
  5. Firestormm

    Firestormm Guest

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    I wonder if (having read Cort's latest) that the NIH recognising ME/CFS i.e. synonymously is seen as helping the situation or confusing it even more?

    As I said in my reply to Cort - there was a time when this recognition would have been welcomed warmly I would have thought but am now not so sure.

    Still, I shall look forward to following the debates on ICCME and CCC and how they will all fit together with the other criteria (or replace them) for research and/or clinical diagnoses.
     
  6. oceanblue

    oceanblue Senior Member

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    This may or may not be relevant, but the CAA's Suzanne Vernon co-authored a 2009 paper that concluded
    so perhaps the CAA thinks there is nothing but "CFS" out there.

    I hope this will be put to the test with research.
     
    taniaaust1 likes this.
  7. Firestormm

    Firestormm Guest

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    Perhaps the NIH recognising ME as being synonymous with CFS will be deemed sufficient? Appears to be the case over here at any rate.
     
  8. Ember

    Ember Senior Member

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    I'm not sure that's what is implied, Firestormm, i.e., that the NIH is necessarily "recognizing ME as being synonymous with CFS." I've responded to you and to Cort on his thread (see posts #25 and #26 http://forums.phoenixrising.me/show...-The-NIH-on-ME-CFS-in-201&p=236882#post236882).
     
  9. oceanblue

    oceanblue Senior Member

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    The editorial claims that:
    However, it turns out that this paper doesn't include the relevant analysis to support these claims. Actually, it seems this analysis was done and included in an earlier draft of the paper, but the analysis contradicts the authors claims, which might explain why it was omitted from the final version.
     
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  10. Ember

    Ember Senior Member

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    Thanks for unearthing this apparent deception.

    As far as I can see, the van der Meer and Lloyd critique misrepresents the ICC in claiming that its authors seek to 'abolish' CFS (!) and discard the findings in published studies that have applied the existing international criteria, if the results do not fit with their notions of causation. CBT is the example they use: If a study shows that CBT is effective, these authors suggest that the study actually included patients with psychiatric disorders, and not ME; hence, the positive results can be ignored.

    It's true that the ICC criticizes the Oxford criteria for being broadly inclusive and that it ignores the PACE trial results (their being outside the scope of its discussion). But wasn't it the PACE trial authors themselves who admitted to not studying ME?

    Are the Oxford criteria considered international? (I hadn't assumed that its participants comprised an international body.) In an editorial on diagnostic criteria, slipping between so-called existing international criteria as if they were equal seems disingenuous.

    Earlier in the editorial, Van der Meer and Lloyd refer to an approach that has already been proposed and applied [25], in relation to the existing international criteria [26]. The approach they cite involves the validation of the Multidimensional Fatigue Inventory (MFI-20), a 20-item self-report questionnaire produced in the Netherlands. Its application to Fukuda (also cited) isn't explained.

    Van der Meer and Lloyd's claim that their concern is for scientific credibility: We fear that with the publication of this report, that both the clinical and research agendas in relation to CFS will lose their credible scientific base, via introduction of yet another diagnostic criteria set. Yet both letters allude to selective ignorance. Van der Meer and Lloyd accuse the ICC authors of ignoring the fact that inflammation (-itis) has not convincingly been demonstrated in any organ [28]. Broderick counters that there is simply too much evidence of pathophysiologic neurological and immune dysregulation, immune activation and an imbalance between inflammatory and anti-inflammatory mediators to be ignored [3256].

    Without being an answer in itself, perhaps the ICC will prove to be a means of finding one.
     
  11. Dolphin

    Dolphin Senior Member

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    What they're talking about is the (so-called) empirical criteria (Reeves et al., 2005) which are a (badly) operationalized version of the Fukuda criteria.

    The Fukuda criteria for Chronic Fatigue Syndrome require somebody to have fatigue.

    The (so-called) empirical criteria (Reeves et al., 2005) "operationalize" this as:
     
  12. Ember

    Ember Senior Member

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    Thanks, Dolphin. I would have expected them to cite Reeves. The original MFI-20 article (rather than the validation paper) is cited by Reeves et al., 2005, so that must explain their reference to the validation paper here, as you suggest.
     
  13. oceanblue

    oceanblue Senior Member

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    That's well put.
     
  14. Andrew

    Andrew Senior Member

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    Interesting how this worked out. The critique of the ICC allowed committee to respond. And in so doing they were able to make their position even stronger. With what is there now, I think I can do a follow up on some activism I was doing elsewhere.
     
    Nielk likes this.
  15. Esther12

    Esther12 Senior Member

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    Sorry for bumping this... but the hilarity of this paragraph keeps catching me, especially for those of us who know the background.

    (Drat - I just had a long post deleted! Not sure how or why. Will stop this now.)

    PS: Any news on if any of the authors of the PACE letters have got in contact about their legitimate concerns being classed as unscientific or personal attacks?
     
  16. alex3619

    alex3619 Senior Member

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    I think nomeclature is a problem and will continue to be. Without clearly validated biomarkers we have few options. When we have such markers, and a clear pathophysiological mechanism is implicated, there will be a definitive name change. Any label we use at present is only temporary ... but temporary could be a long time.

    Bye, Alex
     
  17. Esther12

    Esther12 Senior Member

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    That reminds me, Tom Kindlon said that he had sent a letter to both the authors, but never received a reply:

     
    Wildcat likes this.
  18. biophile

    biophile Places I'd rather be.

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    I'm shocked, SHOCKED, that CBT/GET apologists don't usually respond when they are called on their statements. :p
     
    Wildcat likes this.

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