Me-ICC exclusions

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Pechius

Senior Member (Voting Rights)
From the ME-ICC paper:
"Primary psychiatric disorders, somatoform disorder and substance abuse are excluded"

Can someone explain me what they mean by that? Does it mean that if you're diagnosed with somatoform disorder or primary depression you don't get ME diagnosis?
If that's the case, it sounds like a terrible idea. Diseases can coexist, and ME is commonly misdiagnosed as depression or somatoform/somatization. Am I missing something?
 

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I think they are saying where there are things with potential symptom overlap then they are excluding. I don't think that is good they should at least consider the order of symptoms/different illnesses etc. T

The IoM guidelines were much more careful not to exclude for the sake of it and I seem to remember they didn't exclude automatically.
 
Pechius said:
Am I missing something?
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They made a bad decision here and I swear they were still tip-toeing around the psychiatric lobby. Also, ICC is for research and clinical diagnosis and in research, it is best to have exclusions but a note should have been made that this exclusion is for research purposes and in a clinical setting, a doctor must recognize other diagnoses can co-exist.


Adrian said:
The IoM guidelines were much more careful not to exclude for the sake of it and I seem to remember they didn't exclude automatically.
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I remember something said during the rollout that SEID would not exclude other health issues because in the real world you can have more than one medical diagnosis. SEID is primarily a clinical definition.
 
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I wonder whether 'excluded' in this context means that while ME/CFS may be a group of conditions with a list of symptoms that can occur as part of it, doctors need to distinguish it from a list of other conditions that may present with some of the same symptoms. In other words, it is warning against mistaking someone with a primary psychiatric disorder, for example, and misdiagnosing them as having ME.
I don't think it's saying it's not possible to have both conditions coexisting in the same patient.
 
I'm with Trish. Besides, somatoform disorder would probably mimic ME (if we believe such a diagnosis even exists, of course). Bipolar, PTSD and MDD could also present as superficially similar to ME.
 
IOM seemed very reasonable, but on the other hand, I've seen a recent study showing that it tends to select people with depression (in pediatric patients). It's, of course, an open question as to whether that depression is a result of ME or CFS or if it's a primary disorder.. I tend to think that it may often be a result, especially in a pediatric group.

My problem is mainly with somatoform disorders which, IMO, shouldn't exist at all, because too many diseases without a simple explanation end up in that wastebasket. And then if you get such a diagnosis, good luck dealing with doctors in the future..

Maybe it would make some sense to have a diagnosis for unexplained disease, but certainly not in psychiatry.

Of course, I'm not saying anything new here, but just think that excluding somatoform disorders is a bad idea, because most doctors already think that ME is a somatoform disorder, so it doesn't make any sense.
 
Pechius said:
IOM seemed very reasonable, but on the other hand, I've seen a recent study showing that it tends to select people with depression (in pediatric patients). It's, of course, an open question as to whether that depression is a result of ME or CFS or if it's a primary disorder.. I tend to think that it may often be a result, especially in a pediatric group.

My problem is mainly with somatoform disorders which, IMO, shouldn't exist at all, because too many diseases without a simple explanation end up in that wastebasket. And then if you get such a diagnosis, good luck dealing with doctors in the future..

Maybe it would make some sense to have a diagnosis for unexplained disease, but certainly not in psychiatry.

Of course, I'm not saying anything new here, but just think that excluding somatoform disorders is a bad idea, because most doctors already think that ME is a somatoform disorder, so it doesn't make any sense.
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But it *isn't* a somatoform disorder and we don't want them equated. The exclusion tells doctors, 'It isn't this. If you think it's this, don't diagnose ME.'
 
adambeyoncelowe said:
But it *isn't* a somatoform disorder and we don't want them equated. The exclusion tells doctors, 'It isn't this. If you think it's this, don't diagnose ME.'
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I'm sure there are hundreds of doctors who don't have any understanding of the issues with psychiatric diagnoses, and this gives them a free pass to go ahead and diagnose somatoform disorder 'if they think' that it is somatoform disorder, which nobody even knows what it actually is.
 
Pechius said:
IOM seemed very reasonable, but on the other hand, I've seen a recent study showing that it tends to select people with depression (in pediatric patients). It's, of course, an open question as to whether that depression is a result of ME or CFS or if it's a primary disorder.. I tend to think that it may often be a result, especially in a pediatric group.
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These authors made similar claims for the CCC.

It is not accurate to say they claimed that the IOM criteria select patients with depression as they excluded patients with depression beforehand. Rather they claimed that the IOM criteria "tend to select patients with depressive symptoms." with no other differences. The diagnosis was also done retrospectively on previously collected data which could be a source of error.
 
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strategist said:
These authors made similar claims for the CCC.

It is not accurate to say they claimed that the IOM criteria select patients with depression as they excluded patients with depression beforehand. Rather they claimed that the IOM criteria "tend to select patients with depressive symptoms." with no other differences. The diagnosis was also done retrospectively on previously collected data which could be a source of error.
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More reason to say that those findings are of little meaning. Are pwme some kind of superhumans who can't have some depressive symptoms if they have an illness that destroys their lives?

Nancy Klimas: "So you have biologic consequences to pain, and you have biologic consequences to low energy level, and you also have mood causes. For instance, we’ve been denying this influence for 30 years, because the psychiatrists were pounding on it so much we had to push back, but the truth is, you know, 70% of people with renal failure have depression. Why wouldn’t you? This one, too. But there’s also sometimes biology to that, too. You have neuro-inflammation, you’re going to muck up your normal balance of normal peptides in your brain."
(https://www.cfs-me-network.com/2017/09/13/interview-nancy-klimas-cfs/)

That sums up what I think about the fear of psychiatric symptoms in pwME.
 
Pechius said:
More reason to say that those findings are of little meaning. Are pwme some kind of superhumans who can't have some depressive symptoms if they have an illness that destroys their lives?

Nancy Klimas: "So you have biologic consequences to pain, and you have biologic consequences to low energy level, and you also have mood causes. For instance, we’ve been denying this influence for 30 years, because the psychiatrists were pounding on it so much we had to push back, but the truth is, you know, 70% of people with renal failure have depression. Why wouldn’t you? This one, too. But there’s also sometimes biology to that, too. You have neuro-inflammation, you’re going to muck up your normal balance of normal peptides in your brain."
(https://www.cfs-me-network.com/2017/09/13/interview-nancy-klimas-cfs/)

That sums up what I think about the fear of psychiatric symptoms in pwME.
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In the "Multiple Sclerosis in America 2017" survey, 53% reported depression. Another recent article states "more than half of people with MS will experience depression at some point in the illness."

ms_in_america_26222_002b.jpg

Also, research has shown that "people living with MS who reported higher levels of stigma also reported more symptoms of depression and were more likely to meet the thresholds for clinical depression."

Compared with ME/CFS, MS is less disabling, less stigmatized, with better medical support, better societal support, and better quality of life. And I'm not trying to downplay the severity of MS.

But if one were to exclude those with depression from a Multiple Sclerosis diagnosis, it would exclude many with MS. I suspect the same is true with ME/CFS.
 
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As others have indicated, I think that "Primary psychiatric disorders, somatoform disorder and substance abuse are excluded" is saying that when considering an ME diagnosis, then isolate that diagnosis from any other primary conditions that have already been diagnosed, and home in on the symptoms that are unambiguous. So for example, feeling tired and lethargic could be a component of either disorder, but for a PwME there will be more, PEM etc. The text clarifies the possibility of multiple concurrent conditions.

I like this sentence "cardinal feature is a pathological inability to produce sufficient energy on demand". So cannot convert energy at the rate it is needed to function properly; lack of power.
 
Melanie said:
Also, ICC is for research and clinical diagnosis and in research, it is best to have exclusions but a note should have been made that this exclusion is for research purposes and in a clinical setting, a doctor must recognize other diagnoses can co-exist.
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This is the main reason. In research it can demolish a study to have people with other conditions, even if they have the condition being studied plus some other condition. So in research there must be strict exclusions. So for example, I cannot enrol for most ME studies because I am classed as having another condition that disrupts the immune system, which is diabetes. It does not matter that I am a highly atypical diabetic who probably just has even less capacity to use carbs for fuel than the typical ME patient. These complications are called confounds, and are a major problem in research.

Clinically its different. You treat the whole patient.

Somatoform disorder is a made up and unproven disorder, presumed to exist because basically they could not think of anything else, or didn't know what tests to run, or the tests are not available for many possible reasons. So are all psychosomatic diagnoses. Even diagnoses with established biology, such as depression, are limited because that biology, that pathophysiology is not sufficiently unique and so not diagnostic. Depression is probably a wastebasket diagnosis, in which patients get diagnosed with a symptom from a cluster of similar symptoms, and given the overall label of depression. Its not definitive with respect to what causes the problem.

The other issue, clinically and not in research, is that a disorder, condition or disease cannot be used to exclude a diagnosis of ME unless it explains all of a patients symptoms, and is untreated, and such treatment should reverse those symptoms. (I am not clear what happens if its untreatable.) So sleep disorders can stop a diagnosis based on chronic fatigue, but cannot stop a diagnosis based on PEM, which appears to be unique to ME but is not the same as exercise intolerance. If the sleep disorders are treated, and chronic fatigue remains, then it becomes viable to use chronic fatigue again in the diagnostic workup.
 
Pechius said:
I tend to think that it may often be a result, especially in a pediatric group.
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I tend to agree, with one important caveat. Depression is an inferred symptom. How do they know its not just an ME symptom they are wrongly diagnosing as depression? I think a lot of cases of depression are misdiagnoses, and other diagnoses might be better if we had the research needed to determine that. For example, ME patients are typically not very active, and don't do much at all that is expected of a healthy person. This is primarily due to symptom and energy limitations, aerobic energy is limited, but the questionnaires used cannot differentiate these issues from depression. Its not that ME patients cannot be depressed, its just that regular ME symptoms can be mistaken for symptoms of depression.
 
alex3619 said:
I tend to agree, with one important caveat. Depression is an inferred symptom. How do they know its not just an ME symptom they are wrongly diagnosing as depression? I think a lot of cases of depression are misdiagnoses, and other diagnoses might be better if we had the research needed to determine that. For example, ME patients are typically not very active, and don't do much at all that is expected of a healthy person. This is primarily due to symptom and energy limitations, aerobic energy is limited, but the questionnaires used cannot differentiate these issues from depression. Its not that ME patients cannot be depressed, its just that regular ME symptoms can be mistaken for symptoms of depression.
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I've long thought, with no evidence, that there are more ME patients misdiagnosed with depression, than there are ME patients diagnosed with ME. At least in the United States.

When only 10% of ME patients are diagnosed (CDC), it doesn't take much of a leap to think there might be more than 10% misdiagnosed with depression.
 
Webdog said:
I've long thought, with no evidence, that there are more ME patients misdiagnosed with depression, than there are ME patients diagnosed with ME.
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I'd say that's also correct here - also no evidence. "Burnout", which is officially re-named depression (also I can't see the evidence of why burnout and depression are the same), could very often be ME for instance. People with burnout are said to "recover" with rest and (pleasant) activity (of course, plus psychotherapy); at least, that was the impression that was made.

I saw a short TV part about a man with "burnout". Before getting ill, he was doing high performance sports. After getting ill, he just couldn't presume training. He had to stop it. After a year or years (can't remember) he was able to start training a tiny bit again. This didn't sound as burnout to me.
 
alex3619 said:
I tend to agree, with one important caveat. Depression is an inferred symptom. How do they know its not just an ME symptom they are wrongly diagnosing as depression? I think a lot of cases of depression are misdiagnoses, and other diagnoses might be better if we had the research needed to determine that. For example, ME patients are typically not very active, and don't do much at all that is expected of a healthy person. This is primarily due to symptom and energy limitations, aerobic energy is limited, but the questionnaires used cannot differentiate these issues from depression. Its not that ME patients cannot be depressed, its just that regular ME symptoms can be mistaken for symptoms of depression.
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Agree 100%.
 
alex3619 said:
I tend to agree, with one important caveat. Depression is an inferred symptom. How do they know its not just an ME symptom they are wrongly diagnosing as depression? I think a lot of cases of depression are misdiagnoses, and other diagnoses might be better if we had the research needed to determine that. For example, ME patients are typically not very active, and don't do much at all that is expected of a healthy person. This is primarily due to symptom and energy limitations, aerobic energy is limited, but the questionnaires used cannot differentiate these issues from depression. Its not that ME patients cannot be depressed, its just that regular ME symptoms can be mistaken for symptoms of depression.
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Good points.

For many years, I was told by doctors that inability to function, loss of concentration, sleep and memory issues were all just symptoms of depression. Of course, fatigue was dismissed as a symptom of depression too. It didn't matter when I would tell doctors that my mood didn't seem to correlate with my symptoms.

Neuro symptoms which didn't fit the depression model, such as stumbling and double vision, as well as orthostatic intolerance were dismissed as "all in my head". After all, the MRI and blood tests were normal.
 
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