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Problems with International Consensus Criteria

ukxmrv

Senior Member
Messages
4,413
Location
London
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.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
If a criteria is meant (at least in large part) to define a specific disease - and it is shown to also en-capture patients with a comorbidity - then doesn't it reduce the uniqueness of the disease? Shouldn't a criteria for ME define ME and not anything else?


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.
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
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.

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:

Is the International Consensus Criteria Broken? Study Suggests It and the CCC May Be.

Both the Canadian Consensus and International Consensus Criteria are much beloved by patients. Developed from within the ME/CFS community by some of our best doctors and researchers, the two definitions were supposed to pave a way for clean studies containing real MECFS patients.

A recent study, however, suggests that the fix in some ways could be worse than the cure, and that both select for more patients with psychiatric illnesses.

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.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
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."
 

Ember

Senior Member
Messages
2,115
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):
Findings indicated that the ME-ICC case definition identified a subset of patients with more functional impairments and physical, mental an cognitive problems than the larger group of patients meeting the Fukuda et al. (1994) criteria. The sample of patients meeting ME-ICC criteria also had significantly greater rates of psychiatric comorbidity.
The second one is from the summary of his 2004 study (CCC vs. Fukuda):
In summary, those individuals in this study meeting the Canadian criteria appear to have more symptoms, more physical functional impairment, and less psychopathology than those in the CF-psychiatric group. In addition, the Canadian criteria identifies patients with more fatigue/weakness, neurological and neuropsychiatric symptoms than the Fukuda CFS criteria does.
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:
Canadian criteria were compared with people who had chronically fatiguing illness explained by a psychiatric condition. Statistical tests used included binomial logistic regression and analysis of variance. The Canadian criterial group, in contrast to the Fukuda et al. criterial group, had more variables that statistically significantly differentiated them from the psychiatric comparison group. Overall, there were 17 symptom differences betweeen the Canadian and CF-comparison group, but only 7 symptom differences between the CFS and CF-psychiatric group.
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.”
"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."
Has the DSQ evolved? According to Dr. Jason, “It was initially developed to operationalize the Canadian ME/CFS case definition.”
 

Sean

Senior Member
Messages
7,378
All of which just goes to show that we still do not have a good handle on ME/CFS.

Though things are improving, slowly.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
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.
 

GracieJ

Senior Member
Messages
772
Location
Utah
One of the issues we may be running into is the CFS (not ME) diagnosis by exclusion.... .... 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.

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!!!
 

Ember

Senior Member
Messages
2,115
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."
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.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Has the DSQ evolved? According to Dr. Jason, “It was initially developed to operationalize the Canadian ME/CFS case definition.”

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.
 

Sean

Senior Member
Messages
7,378
Is there going to be a push to replace a disease based on discrete objective abnormalities with an unproven, unvalidated and nonscientific psychiatric construct?

It's been going on for quite a while.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
It's been going on for quite a while.

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
 

Enid

Senior Member
Messages
3,309
Location
UK
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.
 

Ember

Senior Member
Messages
2,115
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.
The DSQ was written prior to the publication of the ICC:
This report specifies explicit rules for determining ME/CFS status using a revised Canadian case definition and a questionnaire to assess symptoms (for a copy, write the first author)....

The DePaul Symptom Questionnaire is a useful screening tool to assess for ME/CFS according to the Revised Canadian ME/CFS case definition, but it does not provide the full picture of a patient’s symptomatology. Thus, for research purposes, we propose some additional measures that could be administered to obtain more comprehensive data on symptomatology. For fatigue, the Fatigue Severity Scale (FSS) (Krupp et al., 1989) is a measure of the behavioral consequences of fatigue. In a study by Jason et al. (2010e), the FSS was found to have a better ability to detect cases and non-cases than the MFI (Smets et al., 1995), the Fatigue Scale (Chalder et al., 1993) and the Profile of Fatigue-Related Symptoms (Ray et al., 1992). For sleep disturbances, we suggest the Pittsburgh Sleep Quality Index (Buysse, 1989) for measuring sleep disruptions and sleep quality. Finally, pain symptoms can be assessed with the McGill Pain Questionnaire, a well-validated measure (Melzack, 1975) .
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.
 
Messages
15,786
Depression for example is commonly acknowledged as a common comorbidity....
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.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
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.

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.
 

Seven7

Seven
Messages
3,444
Location
USA
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.
 

Enid

Senior Member
Messages
3,309
Location
UK
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.
 

Jerry S

Senior Member
Messages
422
Location
Chicago
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.