Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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How Jason 'operationalised' the CCC and compared it to other criteria - 2012

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Firestormm, Nov 16, 2013.

  1. Firestormm


    Cornwall England
    Contrasting Case Definitions for Chronic Fatigue Syndrome, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Myalgic Encephalomyelitis

    Note: Link gives access to full paper

    One way in which the CCC was operationalised - something that the IOM has said a criteria is in need of I recall - was by Jason. He applied a measure of severity and frequency. Currently the 2003 CCC and other criteria, merely ask if you have a symptom, not how often you have it occur...

    I don't have the time or really the inclination to review this paper properly. Indeed I probably read it when it was published - but have forgotten the salient points now.

    Here's a few highlights from a quick read through. The issue of selecting an existing criteria is clearly not a straightforward one, and even Fukuda appears to have some benefits.

    I'm not sure if Jason has published the study he refers to in my 'conclusion' at the bottom, but if he has then it might also be something the IOM should consider.

    Incidentally, the Statement of Work from HHS, refers to a 'Revised Canadian ME/CFS Definition' published in 2010 - and not something referred to by the experts - as another criteria they want or feel is in need of consideration as part of the IOM remit.

    This is again another paper from Jason (thanks @Ember for finding where it had been referenced :)) but I haven't yet read it or considered what impact it might have on the 2003 Canadian Criteria - even if I was so inclined.

    And then of course you have the NICE criteria encapsulated in it's 2007 Clinical Guideline and the ME ICC published in 2011. Both of which are also up for consideration by the IOM committee.


    Last edited: Nov 16, 2013
  2. peggy-sue


    Who actually wrote this? I trust it wasn't Jason!
    There is a (repeated) glaring example of really bad English in it, something which would not help anybody to take what is writtten seriously!

    Quote; "In addition, the ME group appears to have less mental health issues than the ME/CFS group."

    The correct wording is; "the ME group appear to have fewer mental health issues..."

    And on that topic, I wish they would distinguish clearly between "mental health issues" and the clinical depression that having this damned disease can often cause.:mad:

    (grumpy and nitpicking today... :p )
  3. Mark

    Mark Former CEO

    Sofa, UK
    That's my main problem with that paper, and I think it's been misunderstood by some because of that vagueness. Just describing simply "mental health issues" is too vague; if that means depression and anxiety measured in a certain way (eg HADS) then it doesn't necessarily imply anything 'psychiatric'. It's also been suggested that there may be pathological processes in severe ME that are also associated with provoking depression and anxiety, so even if there is more depression and anxiety in a cohort that doesn't necessarily mean it's a bad definition that is selecting more patients with 'only' psychiatric illness. So it's really quite complicated to interpret this paper, and although some have interpreted it to suggest that CCC and ICC have problems and may select too many psychiatric patients, I think that's much too simplistic.

    Perhaps also worth noting that Jason is one of the 50 experts who signed the letter against the IOM contract and supporting immediate adoption of the CCC by HHS, so whatever the detail his conclusion seems to be pro-CCC, for now, at least.
  4. Firestormm


    Cornwall England
    The main reason for posting this again, but on this Forum and at this time, was the reference to 'operationalising' the criteria, which is something HHS/IOM also believe is necessary to consider in addition to agreeing a clinical criteria.

    I thought reference to the actual term 'operationalising' and separately 'validation' of criteria came from HHS/IOM, but the only reference to the words I can now find are from the CFIDS Assoc. America.

    However, others including myself have wondered what this operationalisation might actually mean as it is a term and a process with which we were unfamiliar. And how a criteria once agreed upon by experts and independently, is then measured as being effective.

    It clearly isn't enough now to take a criteria and then simply run with it: what about those with a diagnosis now who might not meet the new criteria? And if it is a new criteria, would everyone need reassessing?

    I don't think Fukuda was ever operationalised, or the NICE criteria either for that matter: at least I don't recall reading any papers about the NICE criteria which is an amalgam of others.

    Jason above provides one example of operationalising the criteria - instead of simply asking people 'do you have this symptom' out of a range, one would be asked 'how often do you have this symptom' and 'how severe is the symptom' and then the results used to determine diagnosis.

    Other examples must exist including perhaps, studying the effects of each criteria on patient cohorts, perhaps even replicating the above paper in full using all the criteria mentioned by HHS/IOM, trying to determine which method of diagnosis results in the more accurate cohort/the more accurate definition of this disease...

    Jason is also asking above, what the effect is of having more symptoms to choose from, compared to a more focused list, and if the results indicate more issues that might also cross with a psychiatric diagnosis.

    However, in the absence of a clear biomarker(s) I do wonder if any of this effort is actually worth it. At the end of the day, are we not still reliant upon various consensus opinions as to what is/what isn't ME?

    IOM have 18 months to do their work and $1 million. It would be useful to know how they might seek validation and roll-out of any new criteria that is fundamentally different to Fukuda.
    Last edited: Nov 16, 2013
  5. Ember

    Ember Senior Member

    This study is another attempt by Dr. Jason to promote his own ME definition: “To meet full criteria of ME, patients must have had an acute onset and qualify for the three major ME symptom categories (postexertional malaise, neurological manifestations, and autonomic manifestations):”
    Notice that PEM is defined here as “prolonged restoration of muscle power following either mental or physical exertion.”

    Dr. Jason's recurrent theme is that “Katon and Russo (1992) have argued that a requirement of more symptoms to meet criteria could inadvertently select for individuals with psychiatric problems.” But his group ignores the fact that the CCC excludes primary psychiatric disorders when they argue, “Some might conclude that the ME/CFS definition requires too many symptoms that may at the upper ends select for psychiatric disorder. Others might feel that we should just expect higher levels of a variety of both medical and psychiatric disorders if this definition is utilized.” The DePaul group intends to continue in this vein: “We are currently collecting more data on this issue, and we hope in the future to be able to offer more definitive interpretations of the findings reported in the current study.”

    Fukuda (1994) was operationalized, but not improved, by Reeves (2005).
  6. Firestormm


    Cornwall England
    Couple of things:

    I was reading Jason's paper (top of the thread here) and noted they considered 'tick bites' as a trigger for ME/CFS.

    I'd not seen that one before in print in a published paper. Not sure if I agree it either. Surely, Chronic Lyme as a diagnosis is diluted by such an inclusion, it also extends the catchment of ME as a distinct disease even further.

    Is there anything that can't be seen now as a trigger for ME? Does it matter? What does it mean?

    And yesterday, the following paper was published:

    Might have some impact on the IOM exercise but it's a review of clinical guidelines, so perhaps not. Still I post it here, because it mentions (as does Jason) the lack of an ability to measure symptom severity (Jason also refers to frequency).

    [N.B. Title link takes you to the research thread on the forum]

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