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Problems with International Consensus Criteria

Discussion in 'General ME/CFS News' started by Andrew, Apr 28, 2013.

  1. Bob

    Bob

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    Does anyone else see the irony of our discussion in this thread?
    I think we could be easily accused of double standards, by people who don't understand the issues, or who prefer not to understand the issues.

    We rightly complain about Fukuda, and Oxford, because they can select patients with major depression, or other psychiatric problems. (i.e. they do not have enough specificity, and are too heterogeneous.)
    And now we have a problem because a researcher has found that the ICC apparently selects more patients with psychiatric issues than Fukuda.

    Obviously, some of us (myself included) wish to defend the ICC, because we hope it will be useful for research purposes, and we assume that it will be more selective for ME patients, as opposed to patients with idiopathic chronic fatigue, or chronic fatigue with a psychiatric basis.

    However, to an outsider, this may look like us wanting to have our cake, and to eat it. And our position might appear to be contradictory, and unscientific.

    As per usual, it all boils down to a dearth of research; in this case specifically into the nature of the cognitive and neurological symptoms of ME, which have been widely dismissed as psychiatric in origin over the years.

    Watching the FDA videos gave me quite a lot of hope. They were discussing symptoms and illness in an entirely 'medical' framework, which (sadly) is still quite novel an entirely novel experience for people in the UK.
    Call me an optimist, but I think the FDA event is part of the sea-change that I sense taking place, in more than one country.
     
    Tristen likes this.
  2. Marco

    Marco Old blackguard

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    Me too.

    As per my post on Joel and Sasha's (eeek! Gabby's) summary of the FDA meeting there was lots of testimony of sudden cognitive and physical dysfunction following often trivial exertion and no mention of fatigue.
     
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  3. Valentijn

    Valentijn Activity Level: 3

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    Yes, I can see how that might confuse certain professionals who delight in over-simplifying things :p But the real problem isn't with the ICC - it's with psychiatric diagnostic criteria and questionnaires which equate "unexplained physical symptoms" to "psychosomatic disorder/anxiety/depression".
     
  4. Ember

    Ember Senior Member

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    Isn't our complaint with Fukuda and Oxford that they can select patients with major depression or other psychiatric problems only, i.e., that they don't require PENE?
     
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  5. Bob

    Bob

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    I'm not quite sure what you mean, Ember? Let me know if I've misinterpreted you here...

    Fukuda can select patients with PEM, as PEM is one of the optional concurrent symptoms.
    So it doesn't exclude patients with PEM.

    The Oxford criteria selects patients with fatigue as the 'principal' symptom, and no other symptoms are required. This also doesn't exclude patients with PEM, as long as malaise is not the 'principal' symptom in an individual patient. If malaise is the principal symptom then strictly speaking a patient should be excluded, from an Oxford diagnosis, but how it works in practice is all rather subjective, and woolly. (And, of course, it's utterly useless!)
     
  6. Ember

    Ember Senior Member

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    Perhaps my meaning will be clear if I add emphasis: Fukuda and Oxford can select patients with major depression or other psychiatric problems only, i.e., they don't require PENE (or PEM, for that matter).

    You seem to have read "can only select patients with major depression or psychiatric problems," but that's not what I said. Does it help if I say instead that they can select patients who have major depression or other psychiatric problems in the absence of PENE (or of PEM)?
     
  7. Bob

    Bob

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    Well, I suppose they can, but that doesn't mean they do.

    I think Fukuda is an inclusive criteria, that selects a heterogeneous cohort.
    I can't see how it can exclude ME patients.

    I think Oxford could exclude ME patients though.
     
  8. Ember

    Ember Senior Member

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    I didn't say or imply that ME patients are excluded. I said rather that patients who don't have ME are included in the Fukuda and Oxford definitions. Such patients may have major depression or psychiatric conditions only, without having ME. That's what I understand to be our concern.
     
  9. Bob

    Bob

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    OK, but that's exactly what i said earlier:
    So does that mean that we agree with each other? :)
     
  10. Ember

    Ember Senior Member

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    I don't know. I would agree with your statement if you added the word "only:" We rightly complain about Fukuda, and Oxford, because they can select patients with major depression, or other psychiatric problems only.* To my mind, that changes the meaning. Making that complaint is entirely consistent with our complaining here that ME is being confused with psychiatric conditions.

    Unlike Fukuda, the ME-ICC can't include patients with major depression or other psychiatric problems only. It requires PENE. In addition, it excludes such patients. It would have been impossible to achieve Dr. Jason's results of "higher rates of psychiatric co-morbidity...in the ME-ICC condition" had the ME-ICC been administered properly during the study.

    Dr. Jason's 2004 results (comparing the CCC to Fukuda) make more sense: "The Canadian criteria identifies patients with more fatigue/weakness, neurological and neuropsychiatric symptoms than the Fukuda CFS criteria does." Neurological and neuropsychiatric symptoms are not the same as psychiatric co-morbidity.

    These are the five neuropsychiatric symptoms included in the 2004 study: confusion and disorientation, difficulty retaining information, need to focus on one thing at a time, slow to process visual and auditory information, and disturbances in eyesight. Three neurological symptoms are also included: feeling weak or dizzy after standing, feeling dizzy when moving the head suddenly, and alcohol intolerance.
    ..........
    *'Patients with major depression or other psychiatric conditions only' means here 'patients not having ME.'
     
    Bob likes this.
  11. Andrew

    Andrew Senior Member

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    The problem with Oxford is it selects for fatigue only. The problem with Fukuda (among other things) is post exertion problems are optional.

    The problem we patients have is when our studies show psychiatric comorbidity, people assume we are nuts -- but if a respected patient group (like lupus patients) show the same thing, people assume it's a byproduct of the illness. And so we feel ambivalent about studies that draw attention to psychiatric comorbidity.

    .
     
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  12. Ember

    Ember Senior Member

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    By definition, there can't be psychiatric co-morbidity in ME (ICC). Primary psychiatric conditions are excluded. Reactive depression, however, can be a co-morbid entity.
     
  13. Bob

    Bob

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    Ember, I see you've changed a few of your recent posts since i responded to them. No problem (I often edit posts to add clarity), but it now looks like I was purposely misinterpreting you. (I wasn't.) It seems that I misunderstood what you meant. Since you edited your posts, I now understand what you mean. I agree that Fukuda and Oxford can select individual patients who do not have PEM or PENE, and who do not have ME. I was referring to the 'cohort' of patients that are selected by the diagnostic criteria, rather than individual patients.
     
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  14. Ember

    Ember Senior Member

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    We were cross-posting, Bob. I assumed all along that we weren't arguing but trying to clarify a misunderstanding. It isn't always easy to be clear.
     
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  15. Andrew

    Andrew Senior Member

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    Then I might as well quit the forum right now. I was diagnosed with depression 45 years ago and I've been on and off medication ever since then. Since getting sick with the type of symptoms we discuss here, I've consulted with two psychiatrists. I asked them if my sudden onset symptoms several years ago are a result of depression, or any other psychiatric illness. They both said "no."

    Depressed people get sick too. Depression doesn't make us immune to illness.
     
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  16. alex3619

    alex3619 Senior Member

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    As I have said before, exclusory diagnoses only prevent a clinical diagnosis of ME and CFS if they explain all the symptoms and findings. Depression is unlikely to do so if someone has ME. An "exclusionary" diagnosis that cannot account for a lot of symptoms is a nonsense ... it would leave someone with the exclusionary diagnosis and a whole lot of unexplained symptoms and findings.
     
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  17. Simon

    Simon

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    speak for yourself :)
    Could you give the Brown et alSF36 figures for ICC vs Fukuda?

    There are quite a few studies showing the SF36 mental health measures generally correlate well with standard measures of depression (and to a lesser extent, anxiety) eg in chronic pain and an elderly poplulation. So if the ICC data shows high levels of psychological impairment yet good mental health scores then it's an important issue.
     
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  18. Bob

    Bob

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    When referring to "psychological impairment" with "mental health", are you referring to the SCID vs the SF-36 subscales (role emotional and mental health)?

    And do you (or anyone else) happen to have any insight into the disparity (SCID vs SF-36) for the ICC? i.e. what is different about the SCID and the SF-36 subscales such that the SCID indicates psychiatric comorbidity, and the SF-36 subscales suggest normal-ish mental health?
     
  19. biophile

    biophile Places I'd rather be.

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    CFS Fukuda vs ME-ICC: mean(SD), p value.

    Role emotional: 55.40 (44.34) vs 46.49 (40.67), 0.31.

    Mental health: 65.13 (17.42) vs 60.21 (17.65), 0.16.

    The scores for role emotional and mental health are not good but are higher than all the other subscales.
     
    Simon likes this.
  20. Bob

    Bob

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    In Jason's latest paper (Brown et al), they say that there was no significant difference between the ICC and Fukuda, for the SF-36 (role emotional and mental health) subscales:
    "Of interest was that the Role Emotional and Mental Health subscale scores were not significantly different between the two groups, although the ME-ICC group had significantly higher rates of current psychiatric comorbidity."
     
    Simon likes this.

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