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Dr. Enlander comment on the IOM

Nielk

Senior Member
Messages
6,970
https://www.facebook.com/DrEnlander/posts/1080750148618239?fref=nf&pnref=story

Dr. Enlander has submitted the following comment to the M.E. Global Chronicle:

"I have read the IOM report and the defence by Lucinda Bateman. I applaud the notion of reviewing the disease that we have in the past called Myalgic Encephalomelitis (ME), Post Viral Fatigue, Chronic Fatigue Syndrome (CFS) , Chronic Fatigue Immune Deficiency Syndrome (CFIDS) and a panoply of other terms. The report may induce the medical community, and the public at large, to consider this diagnosis as a physical condition rather than a trivial manifestation of the patient's imagination.

"The criteria for a diagnosis has been reviewed for at least two decades including Holmes, Fukuda and the Canadian Consensus and now the IOM criteria.

"The naivete of the IOM criteria are the lack of exclusions which are contained in previous criteria. It is peculiar that Lucinda Bateman did not see this problem in her specialist opinion. The IOM criteria as they now stand can include psychiatric induced fatigue or simple fatigue conditions, there are virtually no exclusions."

Derek Enlander M.D., M.R.C.S., L.R.C.P.
ME CFS CENTER
MOUNT SINAI SCHOOL OF MEDICINE
NEW YORK
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
But like so many other criticisms of the new criteria this could also be said of the CCC which allows comorbid depression and comorbid somatization. Unless I've misread the CCC?
 

Nielk

Senior Member
Messages
6,970
These are the exclusions of the CCC

Exclusions: 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,
hyperthyroidism, iron deficiency, other treatable forms of anemia,
iron overload syndrome, diabetes mellitus, 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 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.
Psych exclusion bolded
 

Andrew

Senior Member
Messages
2,513
Location
Los Angeles, USA
In my opinion, there is nothing wrong with allowing for a comorbid mental disorder in a clinical diagnosis. People with mental disorders are not immune to physical illnesses, and they should be diagnosed and treated just like anyone else.

A doctor I saw today asked me how one could differentiate depression from ME/CFS or SEID. I said, depression doesn't get worse when you stand up. Physical activity doesn't make depression worse, and in fact it usually has an anti-depressant effect. Positive social interaction during which a patients mood is rising while symptoms are worsening is inconsistent with depression. He liked this and said they should include information like this to help doctors understand better.

Now, if a researcher wants to exclude depressed subjects from a research study for whatever reason, so be it. But I think it's inhumane to refuse clinical assistance to a ME/CFS sufferer who also has a mental disorder. The better solution is to do a differential diagnosis.
 

nandixon

Senior Member
Messages
1,092
@Andrew, yes exactly. I was just about to write the following:
The IOM criteria as they now stand can include psychiatric induced fatigue or simple fatigue conditions, there are virtually no exclusions.
I don't understand him saying this. As already explained by others, the requirement of PEM is the exclusion means.

People who are primarily depressed, for example, feel better after exercising. They don't get PEM.

If they do get PEM, then they actually have depression that is comorbid with SEID, just like someone might have depression that is comorbid with Parkinson's or ALS.
 

Forbin

Senior Member
Messages
966
@Andrew, @nandixon, this, too, is kind of redundant now, as your posts say much the same thing.

For research purposes, you probably wouldn't want subjects with co-existing diseases with symptoms similar to ME because it would no doubt confound the results.

But for clinical diagnosis, as far as we know, ME does not immunize you against other diseases*. So, people with ME are just as likely to have co-existing diseases at the same rate as the general population.

In addition, since we are confident that ME is a real biological process, that process might actually make it more likely that you would get some other disease, like, say, lymphoma or even depression triggered by the adversity of ME.

If you showed signs of having another condition but you also fulfilled the SEID requirements, you might not make a good research subject, but I'd think you'd want your doctor to consider the possibility that you had both.

[*Some ME patients do report that they all but cease to get the "flu" after onset.]
 

Nielk

Senior Member
Messages
6,970
In my opinion, there is nothing wrong with allowing for a comorbid mental disorder in a clinical diagnosis. People with mental disorders are not immune to physical illnesses, and they should be diagnosed and treated just like anyone else.

A doctor I saw today asked me how one could differentiate depression from ME/CFS or SEID. I said, depression doesn't get worse when you stand up. Physical activity doesn't make depression worse, and in fact it usually has an anti-depressant effect. Positive social interaction during which a patients mood is rising while symptoms are worsening is inconsistent with depression. He liked this and said they should include information like this to help doctors understand better.

Now, if a researcher wants to exclude depressed subjects from a research study for whatever reason, so be it. But I think it's inhumane to refuse clinical assistance to a ME/CFS sufferer who also has a mental disorder. The better solution is to do a differential diagnosis.

The problem , as mentioned elsewhere, is that right now, due to the fact that the 2 day CPET test is too hard for most people to take, PEM remains a subjective symptom.

Many believe that GPs will not be able to satisfactorily recognise true PEM in their patients. It s true that people suffering from depression alone should not feel worse when standing, people with clinical depression have a feeling of heaviness when standing. It would be hard to distinguish.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
These are the exclusions of the CCC
Exclusions: 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,
hyperthyroidism, iron deficiency, other treatable forms of anemia,
iron overload syndrome, diabetes mellitus, 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 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.
Psych exclusion bolded
However, the CCC allows for comorbid depression and some other psychiatric disorders and even comorbid somatization:

"Nonpsychotic depression (major depression and dysthymia), anxiety disorders and somatization disorders are not diagnostically exclusionary, but may cause significant symptom overlap."

"Co-Morbid Entities: Fibromyalgia Syndrome (FMS), Myofascial Pain Syndrome (MPS), TemporomandibularJoint Syndrome (TMJ), Irritable Bowel Syndrome (IBS), Interstitial Cystitis, Irritable Bladder Syndrome, Raynaud’s Phenomenon, Prolapsed Mitral Valve, Depression, Migraine, Allergies, Multiple Chemical Sensitivities MCS), Hashimoto’s thyroiditis, Sicca Syndrome, etc. Such co-morbid entities may occur in the setting of ME/CFS. Others such as IBS may precede the development of ME/CFS by many years, but then become associated with it. The same holds true for migraines and depression. Their association is thus looser than between the symptoms within the syndrome. ME/CFS and FMS often closely connect and should be considered to be “overlap syndromes.”"
 
Last edited:

Bob

Senior Member
Messages
16,455
Location
England (south coast)
The problem , as mentioned elsewhere, is that right now, due to the fact that the 2 day CPET test is too hard for most people to take, PEM remains a subjective symptom.

Many believe that GPs will not be able to satisfactorily recognise true PEM in their patients. It s true that people suffering from depression alone should not feel worse when standing, people with clinical depression have a feeling of heaviness when standing. It would be hard to distinguish.
So do you have a diagnostic criterion in mind that can be objectively measured?
 

snowathlete

Senior Member
Messages
5,374
Location
UK
These are the exclusions of the CCC


Psych exclusion bolded

It doesn't exclude secondary psychiatric disorders though, so you can still be diagnosed with depression for instance and not be excluded from a diagnosis of ME/CFS under CCC.

But more importantly if you keep reading the next bit says this:
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.

I think this is a sensible sentence, but even so it does give leeway for primary psychiatric disorders to be present in some circumstances as well.

The next section as @Bob has pointed out already lists depression, among many other conditions, as a potential co-morbid disorders. I've edited out the rest of my post havng now seen that Bob already said the same as me. Somehow I had not seen those posts.


Reference document here.

So I think what @Bob said is correct. Whereas Dr Enlander may well be making a very valid point regarding the IOM criteria, the CCC has the same issue.
 
Last edited:

snowathlete

Senior Member
Messages
5,374
Location
UK
@Andrew, yes exactly. I was just about to write the following:

I don't understand him saying this. As already explained by others, the requirement of PEM is the exclusion means.

People who are primarily depressed, for example, feel better after exercising. They don't get PEM.

If they do get PEM, then they actually have depression that is comorbid with SEID, just like someone might have depression that is comorbid with Parkinson's or ALS.

Your right, the IOM definition should work to diagnose ME/CFS/SEID patients - because PEM is mandatory and is specific to the disease. Am I right in remembering that PEM is not actually mandatory under CCC? I seem to remember that it is not?
Checking the same source I mentioned in my last post, it says this (my bolding):
A patient with ME/CFS will meet the criteria for fatigue, post-exertional malaise and/or fatigue, sleep dysfunction, and pain...
So assuming I am reading that right, then PEM is not even mandatory under CCC.
 

Nielk

Senior Member
Messages
6,970
However, the CCC allows for comorbid depression and some other psychiatric disorders and even comorbid somatization:

"Nonpsychotic depression (major depression and dysthymia), anxiety disorders and somatization disorders are not diagnostically exclusionary, but may cause significant symptom overlap."

"Co-Morbid Entities: Fibromyalgia Syndrome (FMS), Myofascial Pain Syndrome (MPS), TemporomandibularJoint Syndrome (TMJ), Irritable Bowel Syndrome (IBS), Interstitial Cystitis, Irritable Bladder Syndrome, Raynaud’s Phenomenon, Prolapsed Mitral Valve, Depression, Migraine, Allergies, Multiple Chemical Sensitivities MCS), Hashimoto’s thyroiditis, Sicca Syndrome, etc. Such co-morbid entities may occur in the setting of ME/CFS. Others such as IBS may precede the development of ME/CFS by many years, but then become associated with it. The same holds true for migraines and depression. Their association is thus looser than between the symptoms within the syndrome. ME/CFS and FMS often closely connect and should be considered to be “overlap syndromes.”"

I think the difference between exclusion and co-morbidity is that co-morbidity does not pre-date the diagnosis of ME. It might come after the diagnosis of ME. In other words, if someone suffers from ME. they could at some point come down with depression. So, in that case, ME can co-exist with ME.

If one appears with symptoms of depression; meaning it is not under control with meds, the would be excluded from ME under CCC criteria.
 

Nielk

Senior Member
Messages
6,970
It doesn't exclude secondary psychiatric disorders though, so you can still be diagnosed with depression for instance and not be excluded from a diagnosis of ME/CFS under CCC.

But more importantly if you keep reading the next bit says this:
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.


I think this is a sensible sentence, but even so it does give leeway for primary psychiatric disorders to be present in some circumstances as well.

The next section then specifically lists depression, among many other conditions, as a potential co-morbid disorder:
Co-morbid Entities:
Fibromyalgia Syndrome (FMS), Myofascial Pain Syndrome (MPS),
Temporomandibular Joint Syndrome (TMJ), Irritable Bowe
l Syndrome (IBS), Interstitial Cystitis, Irritable
Bladder Syndrome, Raynaud’s Phenom
enon, Prolapsed Mitral Valve, Depression, Migraine, Allergies,
Multiple Chemical Sensitivities (MCS), Hash
imoto’s thyroiditis, Sicca Syndrome, etc.
Such co-morbid entities
may occur in the setting of ME/CFS. Others such as
IBS may precede the development of ME/CFS by many
years, but then become associated with it. The sa
me holds true for migraines and depression. Their
association is thus looser than between the symp
toms within the syndrome. ME/CFS and FMS often
closely connect and should be considered to be “overlap syndromes”.


Quotes from CCC in green. Reference document here.

So I think what @Bob said is correct. Whereas Dr Enlander may well be making a very valid point regarding the IOM criteria, the CCC has the same issue.

Can you please not use the green? It is too bright for my eyes. Thank you.
 

Nielk

Senior Member
Messages
6,970
I thought you might be thinking of e.g. brain scans. Unless I've misinterpreted you, you were dismissing PEM as a criterion because it is subjective? Do you have an alternative criterion in mind?

No. I guess I didn't successfully explain myself. I think that PEM is key. It should be mandatory. I am just saying that unfortunately (and I wish that was not the case) PEM cannot be proven objectively yet. I hope that will change in the near future.
 

snowathlete

Senior Member
Messages
5,374
Location
UK
I think the difference between exclusion and co-morbidity is that co-morbidity does not pre-date the diagnosis of ME. It might come after the diagnosis of ME. In other words, if someone suffers from ME. they could at some point come down with depression. So, in that case, ME can co-exist with ME.

If one appears with symptoms of depression; meaning it is not under control with meds, the would be excluded from ME under CCC criteria.

The wording, to me, makes it impossible to determine for sure what they mean with regard to co-morbidty. It's not terribly clear and I think it could be interpretted either way.

Do you agree with what I highlighted about PEM not being mandatory under CCC?
 

Nielk

Senior Member
Messages
6,970
The wording, to me, makes it impossible to determine for sure what they mean with regard to co-morbidty. It's not terribly clear and I think it could be interpretted either way.

Do you agree with what I highlighted about PEM not being mandatory under CCC?

I didn't see where you highlighted about PEM under CCC.