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Problems with International Consensus Criteria

Ember

Senior Member
Messages
2,115
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.
Nonsense or not, that's how an exclusion is applied in practice. I was excluded from an ME/CFS diagnosis while I had active cancer. The cancer finding didn't explain my disabling PEM, but suddenly there was no problem with my being considered disabled for insurance purposes. One insurance company pointed out that no mention was made of ME/CFS on my file while I was being treated for cancer, implying that I had made no mention of it to my surgeon or oncologist. However, until the cancer was resolved, I was no longer considered to be an ME/CFS patient. The ME/CFS Guidelines state, “If a potentially confounding medical condition is under control, then the diagnosis of ME/CFS can be entertained if patients meet the criteria otherwise.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
If that were the case Ember than half of all CFS patients would be excluded for sleep apnoea, or at least the half of those who do not respond to treatment. They are not. In a research setting any confounding issue is an exclusion, as it complicates results. In a clinical setting its more complicated. I guess its up to the understanding and competance of the individual doctors. Some docs probably do have a rigid interpretation of exclusion ... but thankfully not all.
 

Ember

Senior Member
Messages
2,115
If that were the case Ember than half of all CFS patients would be excluded for sleep apnoea, or at least the half of those who do not respond to treatment. They are not. In a research setting any confounding issue is an exclusion, as it complicates results. In a clinical setting its more complicated. I guess its up to the understanding and competance of the individual doctors. Some docs probably do have a rigid interpretation of exclusion ... but thankfully not all.
I don't fault my doctors for their understanding or competence in this regard. I wasn't denied treatment. The ME/CFS Guidelines are for medical practitioners and not for researchers. They state:
Exclude active disease processes that explain most of the major symptoms of fatigue, sleep disturbance, pain, and cognitive dysfunction. It is essential to exclude certain diseases, which would be tragic to miss: Addison's disease, Cushing's Syndrome, hypothyroidism, iron deficiency, other treatable forms of anemia, iron overload syndrome, diabetes melitus, and cancer. It is also essential to exclude treatable sleep disorders such as upper airway resistance syndrome and obstructive or central sleep apnea; rheumatological disorders such as rheumatoid arthritis, lupus, polymyositis and and polymyalgia rheumatica; immune disorders such as AIDS; neurological disorders such as multiple sclerosis (MS), Parkinsonism, myasthenia gravis and B12 deficiency; infectious diseases such as tuberculosis, chronic hepatitis, Lyme disease, etc.; primary psychiatric disorders and substance abuse. Exclusion of other diagnoses, which cannot be reasonably excluded by the patient's history and physical examination, is achieved by laboratory testing and imaging. If a potentially confounding medical condition is under control, then the diagnosis of ME/CFS can be entertained if patients meet the criteria otherwise.
The ME Primer considers cancer to be a differential diagnosis, not an exclusion. Sleep apnea isn't mentioned.

CFS Fukuda was designed for research purposes. According to this source, it excludes sleep apnea as an active medical condition that may explain the presence of chronic fatigue. But it includes anxiety disorders, somatoform disorders, and nonpsychotic or melancholic depression.

Depression is listed as a co-morbid entity in the ME/CFS Guidelines.
 

Simon

Senior Member
Messages
3,789
Location
Monmouth, UK
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.
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."
Thanks both.

Thought it would be useful to compare the Brown et al Fukuda andICC scores for Role Emotional, Mental Health AND Physical Function with US population norms:



Brown et al SF-36 Results: Fukuda vs ICC vs US norm

Physical Function: 51 vs 36 vs 84
Role Emotional: 55 vs 46 vs 81
Mental health: 65 vs 60 vs 75

Some comments on this:
  1. The decline in Mental Health scores vs norms is modest for both given the level of disability
  2. White Physical Function scores are significantly lower for ICC than for Fukuda, Role Emotional and Mental Health are not.
  3. The difference between ICC & Fukuda on Role Emotional does look quite big, though it's not statistically significant. Also the difference with norms is quite pronounced here(when compared with mental health scores). Possible the question was misinterpreted (see below), or maybe it is picking up real issues with depression and anxiety:
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)?
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Yes/No
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a) Cut down on the amount of time you spent on work or other activities?
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b) Accomplished less than you would like?
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c) Did work or other activities less carefully than usual?
Actually, a better explanation is probably that the Role Emotional scale is scored in bigger increments than the Mental Health scale, so the smallest possible difference is bigger (a sixth versus a fifteenth, or similiar [actually, I'm guessing now]).
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Exclude active disease processes that explain most of the major symptoms of fatigue, sleep disturbance, pain, and cognitive dysfunction. It is essential to exclude certain diseases, which would be tragic to miss: Addison's disease, Cushing's Syndrome, hypothyroidism, iron deficiency, other treatable forms of anemia, iron overload syndrome, diabetes melitus,

Ember , this quote of yours demonstrates my point. The bolding is mine, aside from the word "active".

The exclusory disease has to explain most of our symptoms.

The exclusory list includes iron overload syndrome, and diabetes melitus. I have both. Neither is strong enough to cause anything but very mild symptoms in me, and I am probably asymptomatic. I would not know I had either were it not for the fact I was tested. If the disease cannot explain the ME symptoms, its not exclusory. It does have to be investigated, however.
 

Ember

Senior Member
Messages
2,115
Ember , this quote of yours demonstrates my point.
Alex, I think that you're over-stating the case when you write, “If the disease cannot explain the ME symptoms, its not exclusory.” Your earlier point was that “exclusory diagnoses only prevent a clinical diagnosis of ME and CFS if they explain all the symptoms and findings.”

As you point out, the statement in the Guidelines -- “Exclude active disease processes that explain most of the major symptoms of fatigue, sleep disturbance, pain, and cognitive dysfunction” -- uses the qualifier “most.” The document goes on to describe an exclusion as “a potentially confounding medical condition.” I don't believe that an exclusion needs to provide a full alternate explanation.

Cancer doesn't account for all ME/CFS symptoms, but cancer patients do complain of mental and physical fatigue, sleep disturbance and pain. Doctors need to investigate other medical possibilities, but they also need to credibly document their patients' medical/legal disability claims.
 

Andrew

Senior Member
Messages
2,523
Location
Los Angeles, USA
According to the CCC
Nonpsychotic depression (major depression and dysthymia), anxiety
disorders and somatization disorders are not diagnostically exclusionary,
but may cause significant symptom overlap. Careful attention to the
timing and correlation of symptoms, and a search for those characteristics
of the symptoms that help to differentiate between diagnoses may
be informative, e.g., exercise will tend to ameliorate depression whereas
excessive exercise tends to have an adverse effect on ME/CFS patients.
Response to therapy directed at a presumed psychiatric entity may be a
helpful distinguishing feature.

They go on to explain more about how doctors can deal with patients who have ME/CFS plus a mental disorder. And under the list of possible comorbid conditions they list depression.

According to the ICC
Exclusions: As in all diagnoses, exclusion of alternate explanatory diagnoses is
achieved by the patient’s history, physical examination, and laboratory/biomarker
testing as indicated. It is possible to have more than one disease but it is important
that each one is identified and treated. Primary psychiatric disorders, somatoform
disorder and substance abuse are excluded.

Look at the last sentence. It looks to me like they are making a distinction that primary psychiatric disorders, somatoform disorder and substance abuse exclude someone from a ME/CFS diagnosis. I realize this is a little unclear, but that's how I think the average doctor or researcher would read it. Also, under possible comorbid conditions they list reactive depression instead of depression. I think the average doctor or researcher would read this as meaning that only depression that is a reaction to the illness or a specific life event is comorbid. This leaves out major depression and dysthymia, which are comorbid in the CCC.

It looks to me like ICC is throwing people with mental disorders under the bus, whether they meant to or not.
 

Ember

Senior Member
Messages
2,115
What are primary psychiatric disorders (excluded in the ME/CFS Guidelines)? How do you reconcile the two statements below (both with emphasis added)?

From the ME/CFS Clinical Case Definition:
Nonpsychotic depression (major depression and dysthymia), anxiety disorders and somatization disorders are not diagnostically exclusionary, but may cause significant symptom overlap.

From the ME/CFS Guidelines:
Exclude active disease processes that explain most of the major symptoms of fatigue, sleep disturbance, pain, and cognitive dysfunction. It is essential to exclude certain diseases, which would be tragic to miss: Addison's disease, Cushing's Syndrome, hypothyroidism, iron deficiency, other treatable forms of anemia, iron overload syndrome, diabetes melitus, and cancer. It is also essential to exclude treatable sleep disorders such as upper airway resistance syndrome and obstructive or central sleep apnea; rheumatological disorders such as rheumatoid arthritis, lupus, polymyositis and and polymyalgia rheumatica; immune disorders such as AIDS; neurological disorders such as multiple sclerosis (MS), Parkinsonism, myasthenia gravis and B12 deficiency; infectious diseases such as tuberculosis, chronic hepatitis, Lyme disease, etc.; primary psychiatric disorders and substance abuse.
What then is psychiatric co-morbidity?
 

Andrew

Senior Member
Messages
2,523
Location
Los Angeles, USA
Interesting. It looks like the CCC contradicts itself. Or I don't know how they mean "exclude." Maybe exclude allows for inclusion, but I don't think most doctors and researchers would read it that way.
 

Ember

Senior Member
Messages
2,115
In the progression of definitions from CFS (Fukuda) through ME/CFS (CCC) to ME (ICC), less and less psychiatric co-morbidity is allowed. This progressive exclusion of psychiatric co-morbidity isn't surprising, given that these are progressively more restrictive definitions.

CFS (Fukuda) excludes many psychiatric disorders, among them any past or current diagnosis of a major depressive disorder with psychotic or melancholic features. It includes, however, anxiety disorders, somatoform disorders and nonpsychotic or melancholic depression.

In ME/CFS (CCC), primary psychiatric disorders are excluded, although nonpsychotic depression (major depression and dysthymia), anxiety disorders and somatization disorders may be included, depending on their features. Depression is listed as a co-morbid entity.

An ME (ICC) diagnosis excludes all primary psychiatric disorders; secondary or reactive depression is listed as a co-morbid entity.

Dr. Jason seems to be aware of this progression. His “revised” CCC definition lists anxiety disorders, somatoform disorder and depressive disorders as “not necessarily excluded.” Yet his recent study comparing the ME-ICC to Fukuda apparently fails to exclude primary psychiatric conditions in applying the ME-ICC definition. In addition, the “questions used to tap the domains of the ME-ICC were not specifically designed for this purpose, and thus some symptoms were not ideally operationalized.” To claim, then, that the sample of patients meeting ME-ICC criteria (compared with the larger group meeting Fukuda) had significantly greater rates of "psychiatric co-morbidity," something that the ME-ICC largely excludes, seems disingenuous.

For Cort to report, based on these findings, that the ME-ICC is a potential Trojan horse is, to my mind, unconscionable:
If the data is even close to being correct psychologists in the UK and Europe would start finding much higher rate of psychiatric disorders in ME/CFS suggesting that in a worse scenario the ICC could inadvertently become a Trojan horse, so to speak, that helped get ME/CFS more identified with psychological disorders. What a shock that would be.
Indeed!
 

Nielk

Senior Member
Messages
6,970
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.


Andrew - you have a great point here. I never thought of it that way. If a person suffering from major depression and comes down with an illness like diabetes, do doctor exclude them from the diabetes diagnosis because they suffer from depression?

Why are we looking at depression to begin with? When looking for criteria for any disease, do they ask all these questions about depression?
 

Andrew

Senior Member
Messages
2,523
Location
Los Angeles, USA
So the ICC denies that people can have a medical condition (me/cfs) because they have a mental disorder. Compare this to psych lobby nay-sayers who assert that people do not have a physical disorder because they have a mental disorder (me/cfs).

I actually like the Revised ICC the best. It says "not necessarily," which allows for discretion based on whether the symptoms indicate the presence of a me/cfs plus an overlapping mental or physical disorder.
B. Not necessarily exclusionary
3. May have presence of concomitant disorders that do not adequately explain fatigue and are, therefore, not necessarily exclusionary.
i. Psychiatric diagnoses such as:
a. Anxiety disorders
b. Somatoform disorders
c. Depressive disorders
ii. Other conditions defined primarily by symptoms that cannot be confirmed by diagnostic laboratory tests, such as:
a. Multiple food and/or chemical sensitivity
b. Fibromyalgia
iii. Any condition under specific treatment sufficient to alleviate all symptoms related to that condition and for which the adequacy of treatment has been documented.
iv. Any condition that was treated with definitive therapy before development of chronic symptomatic sequelae.
v. Any isolated and unexplained physical examination, laboratory or imaging test abnormality that is insufficient to strongly suggest the existence of an exclusionary condition.
 

Ember

Senior Member
Messages
2,115
The problem with the International Consensus Criteria has changed from that of including more psychiatric co-morbidity to that of excluding more psychiatric co-morbidity.:sleep:
 

Andrew

Senior Member
Messages
2,523
Location
Los Angeles, USA
Why are we looking at depression to begin with? When looking for criteria for any disease, do they ask all these questions about depression?

I'm not sure. Depression is a fav trashcan diagnosis for doctors. Maybe that's why it comes up so much.
 

Nielk

Senior Member
Messages
6,970
With depression and ME/CFS, there is also the possibility of depression being a side effect of one or several of the medications we are taking. I know that, personally, I had that problem after being on Klonopin for a while and as soon as I came off it, the depression dissipated.

Because of this illness being so complex and multi-system, many patients are on a slew of medications. It is very hard to sort out what is a side effect of a drug, a reactive symptom or just pure depression.

I was diagnosed as suffering from ME by Dr. Enlander many years ago. I fit the Canadian consensus as well as the ICC. Is it true then that when I was depressed a year ago, I did not fit those criteria any longer and that now that I don't suffer from depression, I am back on board? It just doesn't make sense to me.
 
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