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Problems with International Consensus Criteria

Bob

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

Marco

Grrrrrrr!
Messages
2,386
Location
Near Cognac, France
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 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.

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.
 

Valentijn

Senior Member
Messages
15,786
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.
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".
 

Ember

Senior Member
Messages
2,115
We rightly complain about Fukuda, and Oxford, because they can select patients with major depression, or other psychiatric problems.
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?
 

Bob

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

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!)
 

Ember

Senior Member
Messages
2,115
I'm not quite sure what you mean, Ember?
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)?
 

Bob

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

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.
 

Ember

Senior Member
Messages
2,115
I can't see how it can exclude ME patients.
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.
 

Ember

Senior Member
Messages
2,115
So does that mean that we agree with each other? :)
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.'
 

Andrew

Senior Member
Messages
2,523
Location
Los Angeles, USA
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.

.
 

Ember

Senior Member
Messages
2,115
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.
 

Bob

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

Ember

Senior Member
Messages
2,115
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.
 

Andrew

Senior Member
Messages
2,523
Location
Los Angeles, USA
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.

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.
 

alex3619

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

Simon

Senior Member
Messages
3,789
Location
Monmouth, UK
... and any pre-existing vulnerabilities which have nothing to do with developing ME, keeping in mind that patients are from all walks of life before being stuck down and we are not all perfect specimens of awesome living and psychological wellness before becoming ill.
speak for yourself :)
4# Which aspects of depression, if present, are featured? Good question. I have read numerous times about researchers and patients saying that depression in ME or CFS often does not seem to be the same as when stand alone. So there is something about depression criteria which captures some aspect of what some patients experience due to illness but do not really adequately define it. I have experienced a few temporary bouts of depression and it is just not the same.

Interesting about the previous SF-36 health survey results, where all the bars are very low except for Mental Health and Role Emotional which are relatively preserved. An unsurprising reality for patients, but also impressive that the CDC seem to be catching on that the symptom domains are predominately physical rather than affective. Also, in the Brown et al study, the role emotional and mental health subscales were the highest out of the eight.
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.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
So if the ICC data shows high levels of psychological impairment yet good mental health scores then it's an important issue.

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?
 

biophile

Places I'd rather be.
Messages
8,977
Could you give the Brown et al SF36 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.

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.
 

Bob

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