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Criticism of CCC - Smith and Wessely 2012 - Unity of Opposites

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Firestormm, Jan 21, 2014.

  1. Firestormm

    Firestormm Guest

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    Cornwall England
    I picked this up this morning. It's an essay from 2012 only now available I believe in full. It made me wonder if, as when the NICE Guideline Development Group for example found the CCC to be inadequate on the grounds of methodology, this might also be something we would have to overcome in order that the CCC were adopted - in whatever manner - by IOM.

    British Medical Journal
    Neuropsychiatry
    Patient Choice

    Review
    Unity of opposites? Chronic fatigue syndrome and the challenge of divergent perspectives in guideline development
    1. Charlotte Smith,
    2. Simon Wessely

    Extracts:

    There is more to read and I think it is important - if we had had time - to try and address some of these issues. Because the IOM committee will I am sure take such criticisms into account. And not all of them are without merit I don't believe.

    However, whilst I think at the end of the day, the IOM are more likely to return a definition and written language more akin to the NICE Guideline (which is not all bad in my opinion), I still think the CCC personally is worth fighting for; but I also think there are aspects to it that could have been better addressed over all of these years: namely taking it into the field and validating it as a clinical definition and overcoming these objections.

    If we had had the time and the ability, this kind of critique of our criteria/definitions would have been something worth doing ourselves I think. We need to acknowledge the weaknesses as well as champion the strengths and science and medicine simply have fallen short of doing the business and will continue to do so until such time as clear biomarkers can be established and we really know what we are dealing with. A critical appraisal of all the definitions/criteria/research would have been ideal - but as patients we can only do so much and I am out of my depth...
  2. alex3619

    alex3619 Senior Member

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    This article makes even worse logical errors than those they accuse the CCC developers of. At some point I will be responding to this, but probably not soon as I am too busy. In particular they use appeal to irrelevant authority, they fail to advise of contradictory published evidence, and they overstate the case of the evidence for their preferred view. As a scientific review I regard this as very poor. As political polemic, engaging in medical politics, it seems more relevant.
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  3. biophile

    biophile Places I'd rather be.

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    The venerable CCC is 11 years old and obviously has its flaws. It felt like a revelation to me when I first read it, a vast improvement over the vague Oxford and CDC criteria, for the first time in my journey I felt like these people understood the clinical characteristics of what I had been experiencing. More recent work has been done since then.

    Carruthers later published some sort of addendum to how the CCC was supposed to work:
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1860613/

    Jason et al published an attempted operationalized update in 2009: http://thescipub.com/html/10.3844/ajbbsp.2010.120.135

    Carruthers et al published the ME-ICC in 2011: http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full

    Followed up with the ME-ICC primer in 2012: http://www.hetalternatief.org/ICC primer 2012.pdf

    We do indeed need a critical appraisal of all the definitions/criteria/research available. I'm rusty at the moment on these issues. The CCC was based on extensive clinical experience and a formal study of symptoms in over 2,500 patients (De Becker et al). IIRC, the CCC was the first and is still one of the only criteria to be based on such empirical data. The ME-ICC was based on the CCC, with updates from the research and clinical experience.

    The CDC and Oxford criteria are woefully inadequate. NICE isn't much better. I do not want another "chronic fatigue plus maybe a vague symptom" type of criteria. I just want all the relevant people to get together and thrash out a consensus criteria based on both their extensive clinical experience, data on patients, and systematic reviews of the research in the proper context. Politics and differences in opinion is obviously hindering progress. I'm sick and tired of all the bungling.

    Wessely does raise the important issue of what "neurological/cognitive manifestations" should be acceptable. Obviously people who have neurological signs need further investigation , but people are often denied a proper neurological examination, so such neurological signs may not even be detected in the first place.

    However, he claims that the CCC should not have "[attempted to] synthesise patient views into the discourse". People who wish to sweep ME under the CFS rug must acknowledge and include the characteristics of ME outbreaks or admit that ME and CFS are not the same and should not be treated as such.

    What people with views such as Wessely's do not seem to understand is that the CCC and similar have such strong support because they resonate with the experiences of patients far better than vague criteria like CDC and Oxford. In his entire career, Wessely never contributed much to improving the definition of either ME or CFS.

    Some of Wessely's criticisms towards the CCC need addressing, but also seem to apply to the Oxford criteria that he apparently has supported throughout his career without much complaint.

    This is the extent of the robustness and peer-review of the Oxford criteria development methodology:

    That is it. And somewhat amusingly given Wessely's previous discussion about biases and funding from a drug company:



    Here are the details on developing the CCC:

    There is additional information in what Carruthers later published in 2007:
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1860613/
    Last edited: Jan 21, 2014
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  4. Esther12

    Esther12 Senior Member

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    Is that complete bollocks? Which section of the community is this? Where are they hiding?

    Don't worry about it. I'm sure you can just churn out some staw-man to pick apart...

    This is pretty funny considering their refusal to release data from PACE:

    It just reads like a propaganda piece. It's easy to pick apart any of the criteria for CFS, but this seems rather lacking in a defence of the Oxford criteria.
    Last edited: Jan 21, 2014
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  5. Bob

    Bob

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    That's what he specialises in. Very successfully.
    Last edited: Jan 21, 2014
  6. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    *pulls down zipper.... pssssssssssssssssssssssssssssh! *

    Think that about sums it up, hm? :p
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  7. Ember

    Ember Senior Member

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    From the ME Primer (2012): “The ICC advance the successful strategy of the Canadian Consensus Criteria (CCC) of grouping coordinated patterns of symptom clusters that identify areas of pathology.”

    From “The New International Consensus Criteria for M.E. - content and context” (2012) by Professor Bruce M. Carruthers, MD, CM, FRCP(C):

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