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Problems with International Consensus Criteria

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

  1. Ember

    Ember Senior Member

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    I don't think that's the case, Nielk. Co-morbid entities include depression in the CCC and secondary or reactive depression in the ICC.
     
  2. Ember

    Ember Senior Member

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    One obvious difference is that the SF-36 is completed by the patient and the SCID is not. The validity of the SCID for use with CFS patients is based, as reported by Taylor and Jason (1998), on its having identified fewer patients with “current and total lifetime psychiatric diagnoses:”
    A functional impairment score of 31-40 on the SCID is described as some impairment in reality testing or communication (e.g., speech is at times illogical, obscure, or irrelevant) OR "major impairment in several areas, such as work or school, family relations, judgment, thinking, or mood (e.g., depressed man avoids friends, neglects family, and is unable to work; child frequently beats up younger children, is defiant at home, and is failing at school)."

    A score of 41-50 involves serious symptoms (e.g., suicidal ideation, severe obsessional rituls, frequent shoplifting OR "any serious impairment in social, occupational, or school functioning (e.g. no friends, unable to keep a job)."
     
  3. Ember

    Ember Senior Member

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    Various recommendations for improving CFS definitions appear in the literature. Katon and Russo (1992) recommend using fatigue and few physical symptoms in order to exclude lifetime psychiatric diagnoses. Their recommendation, published prior to Fukuda (1994), is cited by Jason et al. (2010): “The requirement of eight of more minor symptoms could inadvertently select individuals with psychiatric problems.”

    Komaroff et al. (1996) recommend eliminating three symptoms (ie., muscle weakness, arthralgias, and sleep disturbance) and adding two others (ie, anorexia and nausea). The purpose of their recommendation, published after Fukuda (1994), is to distinguish patients from healthy controls and disease comparison groups.

    DeBecker, McGregor and De Meirleir (2001) recommend changing the symptom requirements to identify a more severely affected and homogeneous group. Their large study, published prior to the CCC and the ICC, is available in-full online: “The addition of patients to the CFS definition by the Fukuda criteria has resulted in the selection of less severely affected patients. This has also resulted in the introduction of an increase in patient symptom heterogeneity.”

    Confounding co-morbid factors, the authors suggest, “may include mycoplasma infections which have an increased prevalence in CFS patients [10], psychiatric disease such as depression [11], or even other syndromes such as fibromyalgia [12, 13]. Thus there is a need to assess the homogeneity of a large CFS study population:”
    The study recommends using a severity scale and considering too “the importance of the relationship between symptoms, not simply increases in prevalence on individual symptoms:”
    Dr. De Meirleir is one of the authors of both the CCC and the ICC.
     
  4. Allyson

    Allyson *****

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    Good point X and a couple of good explanations i have heard
    One at an ME ocnference from a professor of Medicine talking about OI

    We react to upright posture with an extra and contimued release of adrenalinand ?cortison - to casoconstrict to hep us adapt to upright posture - well peopl do this too but we need more due to connective tissue dysfuntion

    this reuslts in the emotionel reaction akin to stress - he dexcribed it in pinpoint detial - exactly what i do if I have an early morning docs appt or have to go out in in extreme heat - a meltdown

    the distinguishing point is that we oly eo it when upright and lying down and or cooling the body temp will fix it in us - we can also induce it by getting up early and going out, say when we are not having one of theose few and far beteweeen good days.

    the other thig i heard on tv news segment was that when the frontal cortex is deprived of blood suppply for any leght of time that produces annger as the frole off the frontal cortex is to inhibit anti social behaviours - when that is out of action all bets are off as happens in people with permantn damage tehre ; for us it is mybe due to transiten lack of bblood supply - i am extrapolating from their news report to apply it to us, but it seems palusible to me ... and explains why i have a meltdown too if i have to queue for any length of time.

    cheers,
    Ally
     
  5. Bob

    Bob

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    The latest edition (spring 2013) of Breakthrough magazine is now available online:
    http://www.meresearch.org.uk/information/breakthrough/index.html

    See pages 4 and 5 for some interesting info about research in relation to diagnostic definitions, with the following title:
    "Does diagnosis matter? Two new studies comparing criteria for ME and CFS."
     
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  6. Dolphin

    Dolphin Senior Member

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    I remember seeing some SF36 questionnaires from people with ME/CFS and quite a lot ticked yes/yes/yes for question 5: http://www.drbrantigan.com/patient/SF36tosonly.pdf on role emotional.

    I think there's a good chance some had misread it. So I think there is a good chance that the proper scores in studies for "role emotional" from groups with CFS or ME/CFS or ME would be higher than what is reported.
     
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  7. Dolphin

    Dolphin Senior Member

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    I believe you mean the revised CCC.
     
  8. Valentijn

    Valentijn Activity Level: 3

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    It is rather odd that the almost identical question just above it for physical health has "as a result of your physical health" underlined, but there's no similar emphasis on the question for emotional health. I think it would be quite easy to miss that "physical" has been swapped with "emotional".
     
  9. Dolphin

    Dolphin Senior Member

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    Although some do have that bit underlined for emotional health, but people appeared to still misread/not read it closely enough.
     
  10. biophile

    biophile Places I'd rather be.

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    Psychobabblers claim that patients supposedly misinterpret emotional symptoms for physical symptoms. But what about misinterpreting neurocognitive impairments and physical symptoms of PENE for "emotional" problems? SF-36 does not cover neurocognitive impairments very well. A patient may feel "emotionally" exhausted due to PENE, regard "physical" health as strictly related to symptoms and sensations of the body, then say "Yes" when asked:

    During the past 4 weeks, have you had any of the following problems with your work or other regular daily activities as a result of any emotional problems (such as feeling depressed or anxious)?

    a. Cut down the amount of time you spent on work or other activities?
    b. Accomplished less than you would like?
    c. Didn’t do work or other activities as carefully as usual?

    And to repeat a previous point, role emotional scores were low but still higher than everything else in the SF-36.
     
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  11. Firestormm

    Firestormm Guest

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    I don't think you can be expected to separate emotion (or mood) from physical and/or the effect of depression experienced in a chronic condition like ME from some of the symptoms of ME.

    I could also say the same about other chronic illnesses too - I know how much my Mum struggles with Rheumatoid Arthritis for example especially when experiencing - what we might term - a 'flare' after doing too much i.e. stepping outside of her own 'pacing' or when she knows that the grandkids are coming to stay and she will want to do 'more than is good for her'.

    Be very interested to learn the proportion of people with a chronic illness who have also been prescribed anti-depressants or have received some form of treatment for depression. I imagine it to be quite high.

    All we can hope is that appropriate 'filtering' occurs. At present there is a great emphasis - as we know - on bio-psycho-social in terms of treatment. For us (and other chronic conditions) the emphasis is on the psycho-social and this naturally will encompass similar forms of approach as used in treatment of depression e.g. CBT.

    Whether or not the same chemical mechanisms are involved in ME as occur in depression e.g. some of the neurotransmitters; and whether or not treating them with what are commonly recognised as anti-depressants serves a purpose within the ME model as it does in the model for depression: is an ongoing debate - but one that was again touched on my the reposting of I think that Maes paper and certainly by the Drug-repurposing conference presentation by CFIDS that we posted an article about.

    There are of course different forms of depression. For some of us - including me - the instances of depression are directly a result of a) being knocked out of my career and former life without adequate explanation or expected treatment; and b) periods of inescapable relapse and even on occasion inconvenient 'flares'.

    Others may have had depression before their ME was triggered and diagnosed. The reason for the diagnosis may be totally different from the depression, but we do know that some have this subsequent diagnosis as a result of a psychological episode e.g. something significant and disturbing that had happened in their life going largely unresolved and even unrecognised.

    There may even be a genetic predisposition towards depression. Though I never really looked too much into this. But you cannot say that depression and chronic illness do not go hand in hand.

    If a doctor is being reminded to consider depression as well as other exclusionary diagnoses before a diagnosis of ME is delivered; I can't see anything wrong with that. PEM might help distinguish those with 'only' depression from those with ME but it isn't (yet) something specifically able to be tested for: and has yet to be firmly established as something that might be.

    If a patient with ME (and experiencing depression) is discharged from specialist care it may always be that this discharge is a result of the fact that the symptoms associated with depression and life with a chronic illness - have been resolved or helped: and not necessarily the symptoms or disease that is ME. And I can't see anything wrong with that either.

    Distinguishing between the two - and therefore measuring the effectiveness of treatments in relation solely to ME - will ever remain difficult until we establish biomarkers or better means of measurement and indeed treatment itself.

    However, even if a better treatment for whatever model of ME is established through science becomes available: there will ever be a need for help in learning to cope with a life of chronic illness even if that illness becomes one of clearer remission and relapse: a protocol that occurs in for example MS.

    Even then distinguishing symptoms of 'life with chronic illness' from the illness itself (not forgetting depression is a chronic illness too); will remain difficult for the doctor trying to help; and for the patient completing a questionnaire that inquires about emotion.
     
  12. biophile

    biophile Places I'd rather be.

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    Firestormm.

    It may be difficult to distinguish, but with contemplation and experience it should get easier. I know what it is like to subjectively experience negative mood, and I know that is distinguished from CFS symptoms. CFS may set up biologically mediated vulnerabilities to depressed mood before psychological and social factors come into play. Then of course is the possibility that it is just an unsurprising response to the suffering, reduced quality of life, isolation, stigma, struggles, etc.

    Too exhausted and distracted to write much else right now on the subject, apologies.
     
  13. Nielk

    Nielk

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    It looks like the DHHS is starting to work on a new criteria. Tom Kindlon twitted this:

    https://www.fbo.gov/index?s=opportu...35096d2486592952c90cd3acee7&tab=core&_cview=0

     
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  14. Ember

    Ember Senior Member

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    Why is a clear distinction needed between a clinical definition and a research case definition? The International Consensus Panel argues that “it is imperative that research for ME be carried out on patients who actually have ME.”
     

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