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Problems with International Consensus Criteria

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

  1. ukxmrv

    ukxmrv Senior Member

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    Dr Ramsay used to talk about the emotional lability in some of his patients. I remember a story about a professional male patient who came to his office and cried. The impression I got was that the patient cried because he had a terrible disease but also that the normal restraints on emotional expression had been changed somehow. I'm probably not describing this correctly.

    When I was first ill I also cried. Was much more emotional than normal and it felt part of the infection and delirium that I had when the viral symptoms were so acute and severe. As the fevers lessened so did the emotional crying. I still have a terrible disease but I'm not depressed.

    Could this be extrapolated somehow into "mental illness" ? I wasn't depressed then but I certainly felt emotional different. There are no real tests for mental illness such as depression so it could be one bad instrument meeting another.

    Poke someone with the flu and see how they react emotionally? There must be descriptions of viral diseases that make people feel more emotional and cry etc.
    Allyson likes this.
  2. Bob

    Bob

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    No, that's not the case, Firestormm. Wikipedia defines the meaning of 'comorbidity' as follows:
    "In medicine, comorbidity is either the presence of one or more disorders (or diseases) in addition to a primary disease or disorder, or the effect of such additional disorders or diseases."


    So, a diagnostic criteria could in theory select 100% ME patients, but there could, in theory, still be a high level of comorbidity. (i.e. patients with other illnesses, secondary to the ME.)

    I haven't read Jason's paper yet, so I don't understand it yet. He seems to have a problem with the ICC selecting patients with comorbid psychiatric problems, but I don't yet understand why this is a problem.
  3. Firestormm

    Firestormm Guest

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    Thanks. Perhaps we should consider the definition of a disease criteria rather than that of a co-morbitdy. Perhaps I was muddling my intentions in that paragraph.

    Should we should also be asking why Cort feels this is an issue. Cort said:

    This was an introduction Cort has posted on Facebook to his article. I don't know if it appears in the article. I have read the article but that was a few days ago and I can't recall and I', not up to reading it all again right now.

    Let me have a break and I'll come back later.
  4. Bob

    Bob

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    I've just read Jason's paper. I think that Cort has used a certain amount of hyperbole in his article. Jason's paper is an exploratory paper, and Jason says that his study has limitations. One of the limitations was its small size.

    After reading it, I still don't fully understand why comorbidity of psychiatric issues should be a problem. Except that perhaps Jason is concerned that the psychiatric issues are a cause of the diagnosis, and not secondary to ME. But Jason doesn't appear to have explored this issue at all in the paper, which seems to me to be a weakness of the study.

    Interestingly, when comparing the patients using the SF-36 Mental Health, and Role Emotional subscales, there was no significant difference between Fukuda and ICC.

    The difference only came about when measuring the patients using the Structured Clinical Interview for DSM-IV (SCID; Spitzer, Williams, Gibbon, & First, 1995)

    The paper says this about the SCID:
    "The professionally administered SCID allows for clinical judgment in the assignment of symptoms to psychiatric or medical categories, a crucial distinction in the assessment of symptoms that overlap between CFS and psychiatric disorders, e.g., fatigue, concentration difficulty, and sleep disturbance (Friedberg & Jason, 1998). A psycho-diagnostic study (Taylor & Jason, 1998) validated the use of the SCID in a sample of patients with CFS. Because CFS is a diagnosis of exclusion, prospective participants were screened for identifiable psychiatric and medical conditions that may explain CFS-like symptoms."

    (The Jason paper does not report what types of psychiatric illness the individual patients were found to have, if any.)

    So it seems that the study rested upon the use of the SCID, which I know nothing about.
    It would be interesting to investigate the questions used in the SCID, and to evaluate how appropriate they are for ME patients.



    A couple of further interesting extracts:

    "Based on the present analyses, the ME-ICC criteria appear to select a more functionally impaired and symptomatic group of individuals, with regards to both mental and physical health, when compared to a group who only meet the Fukuda criteria."

    "Jason, Evans and colleagues (2010) recently published a symptom inventory, the DePaul Symptom Questionnaire, designed to assess individuals with ME/CFS on all published case definitions. This measure is now being used internationally, the results of which will potentially yield critical information about the nature of patient groups selected by various diagnostic criteria."
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  5. Ember

    Ember Senior Member

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    The language that Lenny Jason uses to describe his findings seems to have changed. Compare the quotations below (with emphasis added). The first one is from his 2013 abstract (ICC vs. Fukuda):
    The second one is from the summary of his 2004 study (CCC vs. Fukuda):
    Psychiatric comorbidity suggests something different from neuropsychiatric symptoms.

    By Jason's 2004 account, the CCC does a better job than Fukuda in distinguishing its subjects from “people who had a chronically fatiguing illness explained by a psychiatric condition.” The abstract reads in part:
    So Cort isn't accurate when he reports, “Even though the CCC and ICC did require several ordinal symptoms Jason's study suggested the large number of symptoms required still caused them to select out people with more psychiatric disorders.”
    Has the DSQ evolved? According to Dr. Jason, “It was initially developed to operationalize the Canadian ME/CFS case definition.”
    parvofighter likes this.
  6. Sean

    Sean Senior Member

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    All of which just goes to show that we still do not have a good handle on ME/CFS.

    Though things are improving, slowly.
  7. alex3619

    alex3619 Senior Member

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    One of the issues we may be running into is the CFS (not ME) diagnosis by exclusion. This is cropping up in discussions regarding DSM-V. When it comes out (this month?) most with CFS or ME will be diagnosable with a psychiatric disorder ... by definition. The same symptoms used to define much of ME and CFS can define somatic symptom disorder or whatever its called. If they take the view that CFS is a diagnosis by exclusion, and now we have a made-up unvalidated but widely distributed psych diagnosis that can be pinned on all of us, what happens then? In which country? How do we get some sanity back into psychiatry?

    What they seem to imply is that if the same symptoms diagnose a psych disorder as CFS, and CFS is by exclusion, the CFS label may no longer be valid, and only the psych label should remain - probably some variant of somatization. "Magical Medicine: How to make a disease disappear" starts sounding a little prophetic. Is there going to be a push to replace a disease based on discrete objective abnormalities with an unproven, unvalidated and nonscientific psychiatric construct? The history of psychobabble is littered with such attempts, most of which were later demonstrated to be physical disease.

    What is different this time is they have amalgamated a large array of problems into one definition. Now if one disease is disproved, OK, that was one, we still have all the others in the diagnosis ... is this an attempt to breath longevity back into psychosomatic medicine which by all rights should be a dying branch of medicine?

    This is why cross-diagnosis for somatization should concern us.
  8. GracieJ

    GracieJ Senior Member

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    I've said it before, I will say it again: Mad Hatter's Tea Party!!! Nobody shows it how it is just the way you do, alex!!!
  9. Ember

    Ember Senior Member

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    I'm curious to know how the symptom that Howard Bloom describes in his Chapter 12 video (starting at about 3:45) would be characterized.
    Nielk likes this.
  10. Bob

    Bob

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    I'm not aware of its origins, but from various things I've read recently, it seems that the DSQ has been designed to diagnose for various diagnostic criteria. I think it might even include the ICC, but I don't know that for a fact yet.
  11. Sean

    Sean Senior Member

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    It's been going on for quite a while.
  12. alex3619

    alex3619 Senior Member

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    Hi Sean, the debate has been going on since 1970 for ME, but now with DSM-V they have a means to cause a lot of trouble - if its accepted without challenge then they will rediagnose many patients, and so cause massive harm. This is a fight that a lot of diseases and even healthy people are going to get involved in. Many psychologists and psychiatrists realize there are major problems with excessive and unwarranted misdiagnosis, but soon it will be a problem for the general public. Its possible this might work to our advantage, but that will not happen without us getting involved.

    At stake is not a relabelling or altered diagnosis of ME or CFS, which is what has happened so far, but a de-diagnosis of ME and CFS and rediagnosis with psychogenic illnesses.

    Bye, Alex
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  13. Enid

    Enid Senior Member

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    Can I just make a point about "emotional lability" from Ramsay in the early days and on. It was clearly "physical" to me - ie some part of the brain involved in emotional response was damaged. I do recall twice uncontrollable tears flooding and thinking that's odd I don't feel sad, or sorry or depressed, so why. So as they say "brain" not mind to anyone who wants to make hay out of this symptom.

    How tired one gets of psychiatry and that anyone seriously researching ME, or seeking definition even considers it.
    Bob likes this.
  14. Ember

    Ember Senior Member

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    The DSQ was written prior to the publication of the ICC:
    L. A. Jason, M. Evans, N. Porter, M. Brown, A. Brown, J. Hunnell, et al., The development of a revised Canadian myalgic encephalomyelitis-chronic fatigue syndrome case definition American Journal of Biochemistry and Biotechnology, 6 (2010), 120–135.
    Bob likes this.
  15. Valentijn

    Valentijn Activity Level: 3

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    No, it isn't. The psych groups use questionnaires which equate physical and/or cognitive symptoms with depression. If you throw out the questions that will get a positive answer due to purely physical or cognitive ME symptoms, the rate of depression for ME patients is very close to that of controls.

    I have yet to see a study using an appropriate questionnaire where ME patient scores are high enough on average to be diagnosable as having depression.
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  16. Bob

    Bob

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    The Jason study used the Structured Clinical Interview for DSM-IV (SCID). Have you ever had a look at that, Val? I've not looked at it yet.
  17. lnester7

    lnester7 Seven

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    My 2 cents: I am ICC! fits perfectly for me, and is the best criteria to describe ME for me. I was evaluated psycologically and found no psy issues, not even depresssion. So this discussion is interesting. I wonder how many w proven no psy issues do fit ICC.

    I have Low NK, Low T cells, High Bcells, HH6va, EBV, Parvo and cosaxie reactivations (some resolved by now). Also have lessions on brain MRI. Diagnosed also with dysautonomia (OI).

    Diagnosed by Dr Rey at Klimas group SOOOO, I have been officially diagnosed w CFS/ME.
  18. Ember

    Ember Senior Member

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    FYI: SCID
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  19. Enid

    Enid Senior Member

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    Structured - mind boggles - could not recognise my neighbour once - like come back tomorrow I may respond better. Could we send the psychos into limbo - it might help them to learn something which is not solely mind constructs - most people live with a happy balance heart/mind.. Pity they cannot.
  20. Jerry S

    Jerry S Senior Member

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    This was my comment on Facebook to Cort Johnson's unfair and underhanded attack on the CCC and ICC:

    Cort Johnson fails to represent the Jason study's findings accurately. Jason's group found a higher rate of psychiatric *co-morbidity* using the CCC and ICC. For Johnson to say these are "psychiatric patients" is being deliberately misleading.

    The higher rate of co-morbidity may simply be a consequence of the CCC and ICC patients being more severely ill with a neurological disease. The CCC and ICC, as clinical *diagnostic* definitions, recognize that depression and other psychiatric disorders can occur co-morbidly with the disease.

    Fukuda, as a *research* definition, attempts to limit psychiatric co-morbidity to obtain "pure" CFS research subjects. Depending how Fukuda is applied, this is not always accomplished. Jason et al. found 38% of the CFS patients selected using the Reeves version of Fukuda had *only* major depressive disorder, rather than CFS.

    For Jason's group to compare a research definition with clinical diagnostic definitions adds complications which can't be judged simplistically as better or worse. It is not surprising that the CCC and ICC as clinical *diagnostic* definitions, rather than *research* case definitions, pick up more co-morbidity. The purpose of the CCC and ICC is to diagnose and treat these patients, as opposed to limiting them in a research cohort.

    The Fukuda, Reeves, and Oxford criteria are still more likely to include subjects with *only* psychiatric disorders and mislabel them as having CFS.

    By suggesting the the CCC and ICC "could actually make things worse," Johnson is once again distorting the facts and attempting to lead his readers towards his own pro CDC/CAA "big tent" CFS views.

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